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Advice for Sharon: How to Get Away for a While

"I am getting very physically tired as a caregiver to my husband. I don't have any outlets to get away for a while. What do I do?" - Sharon

Readers’ advice for Sharon:

Hello Sharon,

I also am the sole caregiver for my husband of 34 years with no relief whatsoever at this time. Not having that relief is one of the hardest things to handle as I really need time on my own to regroup. I have found that if I can keep my husband as busy as I can doing physical things during the day, have a light dinner early, he will be ready to retire early. We also have a quiet time after dinner where I read a couple of short inspirational stories to him which also seems to help him relax. Even a couple of hours of time alone helps enormously.

It is a challenge though to find things for him to do and mostly I end up helping with these chores but at least it keeps him busy and exercise helps more then anything. Also keeping a positive attitude and having a strong faith in God is what gets me through the really stressful times.

I certainly understand your dilemma and appreciate what you are also dealing with. Hopefully you will find this helpful.... God Bless!!!!


Dear Sharon,

I, too, care for my 88-year-old mom and will feel the same at times. A Caregiver has a tremendous job that can be 24 hours, 7 days a week. Not sure what the condition is of your loved one, but I can share a bit of my ideas. First, maybe there is a Senior Center/ Alzheimer Care Center near you where you can bring your husband while you attend a Support Group. The Center normally cares for your loved one free as you participate in the group. Some places ask you call to inform them that you'll be bringing him/her.

Secondly, when visiting library or public gathering place, look around for free neighborhood publications (take your loved one with you in a wheelchair if possible). I have come across loads of helpful and usually free info or support systems available, i.e. Agency for the Aging, Alzheimer Association Hotline telephone number.

Last, consider asking a family member to take charge for one weekend or one day. Even if they are a distance away ASK.

Hope this helps,
Martha


When I had a similar problem, I contacted Home Instead. They provided a girl named Susan. She was absolutely fantastic. After spending some time to get my wife cleaned up and dressed up for the day, she would ask what other chores she could do. She got along so well with my wife, I just told her to sit and chat with Gwenne because it meant so much to Gwenne. That was about 4 months ago and my wife frequently asks me to get Susan to spend more time with her. Unfortunately, the geography of the situation will no longer work.

- Steve


Sharon I cared for my father for 4 years during his Alzheimer's illness. I had the support and help of my husband and I had a couple of friends that would come and stay with Dad for a few hours when I had work or errands to run that Dad could not do with me. Our local hospital has a support group and they provide respite care; someone to sit with your loved one while you are gone. Our state of Arizona also has an Arizona Alzheimer's Foundation that was a well of information for me.

I advise you to check with your hospital, State Adult care agencies, Churches, friends, and family. We have to reach out and ask for the help but it is there sometimes in the oddest of places. You have to make the time to get away for a while otherwise the stress will make you sick and you won't be able to care for him.

I would take my Dad for walks it provided him with exercise and me with peace. And we both would get a little escape with the music we both loved. I would take him with me to a drug store that was rarely crowded and we would have an activity of sniffing scented candles discussing what we thought smelled good and what did not. LOL Sometimes we would take drives to get out of the house and get away from town. I do wish you many blessings and pray that any of the information I have shared will be of service to you and your husband.

Sincerely and respectfully,
Judy


Good afternoon,

I have 20 years Nursing experience and spent 11 years working with veterans. The last 4 four of which were on a dementia care unit.

Often the most difficult thing to overcome is being able to let go of the responsibility of providing all the care and seeking help from family and friends. I was amazed with how long some of the families struggled to provide the care at home with little or no assistance and the relief they felt after accepting help.

I would suggest Sharon seek out support groups and keep in touch with friends.

She can also look for agencies or individuals for hire to provide some respite so she can run some errands, be social and catch her breath. Without outlets and time to herself she risks burnout and crisis.

Bob


Hi Sharon,

I know the feeling I'm caring for my 77-year-old mother. Sometimes I felt so isolated and physically drained that I just cried out to God. On day I was on Home Instead's website and saw where I could apply for a grant. I did and was so blessed to be given a grant from Hilarity for Charity to receive free caregiving from Home Instead. Apply for the grant and even if you hire them out of pocket for just 2 hours to get away it makes such a difference.

My grant will be ending soon but I've been so grateful for their help. I know other agencies may have funding for caregivers as well. You've already taken the step....asking for help. May God continue to bless you and your husband.

Love & Peace,
Shari


I try to accept help from family members or friends when it is offered. When people ask what they can do, have a list (mentally or handwritten) and give some thought ahead of time as to what people could do for you. Example, take the spouse or loved one for a ride, or a walk, or coffee and try to give you an actual time frame when they will have them back or cover for you so that you can go some where, do paper work, or just relax. Having an actual slot of time will allow you to plan the time to yourself to maybe what you need the most.

Try not to do everything your self. If possible hire some of the work to be done that is physically what you have always done. When cooking do extra so you can freeze things, buy things ready made or mixes to help you with your time. Put your self on top of your priority list. If anything happens to you, your loved ones have one more strike against them.

In reading what I have just written, I sound like I have it all together and believe me I do not. I give out advice easier than I practice it. I was told my a good friend to keep asking my self "How important is it?" Try and get enough sleep and eat healthy as well.


Ohh gosh! When ever I feel trapped and no where to get a way, I step into another room and take a pillow and scream in it as loud as I can and then cry. I feel so much better after releasing all my emotions and I seem to have a little more energy to push through.

~ Reg ~


Dear Sharon,

I had the same feeling while caring for my husband, that and the guilt that I felt that way. I finally set up a schedule with Home Instead to have a caregiver a few hours three days a week, it was the best thing I did, It relieved my stress, I was a better caregiver for it.


Hi,

If Sharon doesn’t have much outside support to help her have ‘Sharon time’, maybe contacting an area massage therapy school could provide a little break. The students have to get practice hours (free of charge) and could likely bring a massage table or chair to her house. A massage and some relaxing music will do wonders for physical and emotional fatigue. There may even be licensed massage therapists in her area that donate services to caregivers.

Best Wishes,
April


Hello,

I faced this exact situation. I finally experienced an actual anxiety attack where I felt a panic to get out of the entire situation. A person needs to take such feelings very seriously. They are like a wave you cannot control… It is not a crime to become tired. Dementia is tiring for everyone.

You need warmth for yourself and you need ways to have an actual regular change of scene and responsibility. People are hired in the medical system to provide exactly this service and people who love you will volunteer also. Advocate! Don't hesitate to admit your own weariness because it is normal. You are fine... you are loving... you are not alone. Simply put... you love your loved one which is a noble state of mind!

– Irene


Hi Lakelyn,

Re: being a caretaker and Sharon’s question on outlets: I feel very fortunate to have a dear friend to have a play date... I usually time my outings after my hubby and I have had lunch or a hearty breakfast...sometimes I leave him a sandwich with an Ensure chocolate drink, if I know I will be late. I know my hubby will take a nap after that. I am also fortunate in that I can leave my hubby alone for short periods.

If Sharon does not have a friend to get away with, perhaps joining a senior citizen group or church women's society will make some friends... There is a wonderful organization called "PEO"...whose main goal is to help women in need, especially with school. A whole network of friends will come from this group even if you move to different states.

I lean on my adult children if I need to take an overnight trip...but I am hoping to find an agency or day care help in the future. My heart goes out to Sharon. Maybe a quick trip to the library or one of its offerings is a way to start. Home Instead web site has been a big help to my sanity.

My Best,
Jill


I care for my mother-in-law in our home and use a Day Care Service three days/week. This allows me to spend time with my grandchildren (who are a wonderful tonic!) and also have time to get together with friends, do errands, or just rest/nap/putter in the garden. My Mother-in-law also benefits from the time away - she has made a friend there and is treated like a queen - we both benefit and our time together at home is less stressful.

– Barb


One of the ministries our church offers is a respite care program. I volunteer for this program. Volunteers (not necessarily with nursing experience; I don't have nursing experience although I was a caretaker to my mom) are screened by the director and are placed on a list.

We are called to help parishioners by providing respite in their homes while the caretakers go shopping, go to their own appointments, or just take a break. We are also called to help with transportation. This person might see if her church offers such a program. If not, maybe she could ask to have something put in the bulletin.

I hope that helps.
– Nancy


Activities to Reduce Anxiety: Q&A with Sue Paul

Recently I had the opportunity to chat with an occupational therapist who specializes in working with dementia patients and their families. We got to talking about how certain movements and activities can help reduce anxiety in someone with Alzheimer's. It was really interesting to hear her perspective! I hear from many caregivers who struggle with managing anxiety-related Alzheimer's behaviors, so I asked if she would mind me sharing our discussion with you. She agreed.

Before I get into our Q&A, let me give you a little introduction.

Her name is Sue Paul, but she's also known as "The Dementia Queen." Her OT work focuses on providing rehabilitation services to seniors with Alzheimer's or other dementias—but that's not all she does. She's also a writer, speaker, and advocate with an incredible amount of knowledge and passion for helping to maximize life for seniors and caregivers affected by the disease.

I think you'll find her insight and suggestions to be extremely practical! This is the gist of our conversation:

Me (Lakelyn): Why is anxiety so common in people with Alzheimer's and dementia?

Sue Paul: Anxiety is often caused when the person with the disease can't think something through, or they sense that something is wrong but can't put their finger on it. You lose memory function as the disease progresses, and you can't hold onto the thoughts long enough to generate a solution. So basically, you have an itch, but no way to scratch it.

Me: How can you tell if someone is feeling anxious?

Sue: Look for an increase in either sensory seeking or sensory avoiding behaviors. In the early stages of the disease, anxiety can manifest as repetitive questions or as changes in eating habits. You may see the person start to seek out comfort foods, seek constant reassurance, or seek attention. Avoidance is also common--avoiding things the person used to like, avoidance of noise or activity, or avoidance of any type of change. In the later stages, when language function starts to go, you'll see anxiety symptoms like hand wringing, pacing, compulsive behaviors, wandering, and an increased sense of urgency, which are all enhanced by the inability to articulate a problem or understand an answer. Due to a broken communication system, the person may try to make sense of their environment by touching or rummaging through things.

Me: Yes, those are all behaviors that make caring for someone a challenge! I never realized repetitive questioning was tied to anxiety. What are some ways to reduce anxiety?

Sue: First, I want to explain the difference between memory and attention. In the earlier stages when anxiety is caused by not remembering what time a doctor's appointment is, or by losing a set of car keys, attention might be part of the issue. Attention and memory are tied together. If you don't pay attention to where you put the keys down, you're not going to remember where you put them. Attention strategies to help aid memory could include having the person write down the appointment time (motor reinforcement), caregivers should make sure you have the person's full attention when you tell them the time, and have them repeat the time back to you.

Me: What about when someone is past the early stages? What activities can you suggest to help reduce anxiety?

Sue: Give them something to do with their hands. Motor activities that involve deconstruction, like taking a radio apart, work really well. Conceptually, putting something together isn't as easy as taking something apart. Once I got a box full of old eyeglasses and I had a patient snap out the lenses and unscrew the temples. Ripping up mail or ripping out pages from a magazine works really well too, especially for women. In the earlier stages of the disease, you could have the person fill out forms or those fly-away cards that come in magazines. Or put sticky notes around the house for them to find.

Something else you can do is create a rummage box. It's just a box full of random things. The items don't need to be meaningful because the person will assign meaning to them anyway. Intrigue them with interesting objects. The point is to have a box on hand so when the person gets up in the middle of the night, for example, and starts rummaging around, you have a safe place for them to rummage. Rummaging offers a form of stress management akin to reminiscing or problem solving. Using your hands helps channel random thoughts into more organized and purposeful action.

For later stages, gross motor movement like rocking in a rocking chair or on a porch swing, rocking a baby doll, marching, dancing, batting a balloon, or just walking can help alleviate anxiety.

Me: Those all sound like great suggestions to try. But what if the person stubbornly refuses to do the activities you suggest?

Sue: Sometimes that's apathy. Apathy comes from the brain's frontal lobe, which is where the some forms of dementia manifest. A decline in motivation and initiation can be disease related, not a conscious choice. For your own sanity as a caregiver, you have to understand that they're not choosing to be apathetic. To help "wake up" the part of the brain stuck in apathy, offer resistive activities. When the joints in the body are compressed, they release signals to the brain that offer information about what's happening around them. Resistive activities involve weighted pushing, pulling, carrying or lifting.

For example, hold a cane horizontally in both hands and push it in front of the person so they'll grab on and push and pull with you in a "row the boat" motion. Other activities might be pushing a shopping cart, or lifting a weighted bag. By "waking up" or "priming" the brain through these activities, the person may become more receptive to your suggestion to a different activity, like taking a walk.

Me: I feel like everyone caring for someone with Alzheimer's or dementia should know these care techniques. Thanks for sharing your expertise! It was great talking to you.

So there you have the gist of my conversation with Sue. What did you think of her suggestions for helping to reduce anxiety? Email me your thoughts at livechat@homeinstead.com.

Sincerely,
Lakelyn Hogan

P.S. To listen in on another conversation about Alzheimer's-friendly activities, check out the recording from our Live Chat last month.


Post-Diagnosis Journeys

At first my husband who was retired stayed home alone, with my neighbor checking in on him periodically. I thought I would be able to keep my husband home. My grandchildren helped at first, my neighbor helped also while I worked. But they burned out after a few months. Lack of sleep, urinating in inappropriate places, wandering, (so we bought house alarms) eventually began to number his days home. Plus my job was on the line, and I nodded off while stopped at a red light. I guess 3 hours of interrupted sleep and then working 8 hours was not good for me. He was home about a year and a half when I had to find a day program for him. That wasn't easy as he required a medical model program as he needed insulin at noon as he is a diabetic. I also needed transportation and an 8 hour program.

- Linda


What did we do?
I watched my husband more closely for signs of confusion, agitation, tec.
I read everything I could get my hands on about Alzheimers.
I joined a support group.
I spent more time with my husband.
We looked at legal things.
I began thinking about help at home.
We got a tracker for my husbands phone.
We got a wander guard anklet.
I cried.

- Linda


When my dad was first diagnosed with Alzheimer's in 2011, he was very proactive. He arranged his DPOA, POA, and updated his will. He continued to live independently and to drive until just a couple years ago. When he lost his license, he fell apart—it was an extremely rough time for him. He had to be admitted to a geriatric psych hospital for a few weeks to get straightened out. After a short rehab stay, he came to live with me and my husband for over a year. As his mental capacity declined, it became more and more uncomfortable for our teen-age granddaughter who lives with us.

This, more than any other reason, is why we decided to place him in a facility. At the moment, he is just in assisted living, not a memory unit. In some ways, the move has been good—he is much more social and engaged, but he still cries and asks to come home. He is still able to bathe, feed, and dress himself, but he is definitely declining. The hardest part is that he still knows he is losing his mind. I almost think it will be easier (at least on him!) when he no longer knows what is happening to him. My advice would be to make plans early—while your loved one can make decisions for themselves. Get financial advice from an estate planning lawyer—for instance, I didn't know how much I could "pay" myself for the assistance I was giving Dad.

If I had known, I would have taken the max amount and put aside that money for his use as needed. Have your loved one show you where all their valuables are and financial records. Talk about the future and the need to give up things like driving and paying bills. Good planning will make the process much easier!

- Tammie


Hi...with my mom I just started seeing her doing different things than normal...and the repetitive questions...it all started after she started have TIAs thou they weren't very frequent every time afterwards she seemed a little more different...I had promised her years ago I would never put her in a home and still to this day I haven't...and won't . As far as her care so far between my spouse and myself we take care of her at home...she also has many other health issues such as low functioning kidneys...congestive heart failure (and just had a pacemaker put a n this summer) she also had 2 bouts of cancer ...one breast removed as well as laryngeal cancer and having her voice box removed...she also suffered a broken hi last year in December...I work full time still and my spouse stays home during the day with her ...it definitely has been a hard road as I also lost my father to ALS just 3 years ago and was also helping take care of him...but I plan so far anyways to keep my mom at home with me where she and I want her to be

- Lavone


I decided to care for my father at home. I am his primary caregiver. My mom lives with me to0 but she's not patient enough to handle my father nor does she want to. Her goal is to put him in a home. He's still physically able to do most things by himself. I refuse to put him in a home as long I can take care of him myself. The one thing that has changed is I'm now the parent. I am the only one he will listen to. He refused to answer my mom as she can be quite rude with him. I am so delighted to still have him in my house. He's a joy and his sense of humor is still intact. I hope to have him here for many years to come. I do hire a sitter if I need to go anywhere and if I need a break


To your first question it was in 2005 when mom was diagnosed, and I was living in CA, and I didn't move to NM until a year later because mom was in the first stage and I felt that I had time to get thing ready for me to move, and when I got to NM she was doing fine until the end of the year 2011. That is when I made the decision to have mom move in with me and she has been here with me ever cents. Sometimes I wonder if I made the right decision, but as time goes on I know that I did make the right decision and I plain to keep mom at home where she is compatible and can get around without any problem.

To your second I have not considered putting my mom in a home at all no matter have hard it gets I will keep my promises to her.

I hope that this will help you.

- James


Dear Molly and 'home instead,

I am listening to your live chat site from Centerville Nova Scotia Canada.

I am not certain where you are posting from… however, in Canada, Nova Scotia has the greatest number of elderly per capita in our country. Nova Scotia is one of the smallest provinces in Canada. It's financial capabilities are limited, nova scotia is considerer one of the 'have not' provinces.

I am a trained Continuing Care Assistant, a form of training for those working in Home support services.

I believe i am seeing a sort of phenomena in early diagnosis of dementia and alzsheimers. I am meeting individuals who are diagnosed and having all their rights being removed from them as quickly as possible. In so doing 'individuals' are controlled by their families and decisions are made for the convenience the 'guardians of health care' as these right are removed, the individual lose control over important decisions out side of their finances. The family/caregivers are given voice to… but the person with the disability seems to lose their rights over their lives.

ie. where they want to live
who they wish to have with them or near them
important life information such as being involved in important family dates i.e... death, births.

I see family … for their convinence .. cannot have their family institutionalized fast enough, or controls in place fast enough.

I have witnessed a form of controlled isolation where every phone call, letter, visit photo, tv, is censored to control the desires and wished of the sick person.

The assessments that i have witnessed presently can be as simple as asking the patient a set of simple questions that show they are struggling with their memory.

Where can go to read about the legal rights of the patient.

I want to point out… that there are many good guardians caring for others who are still at home. however, I am not finding information regarding the legal rights of the patient.

personally, I will not allow myself to be diagnosed by any one in my fear of having all my rights removed as I have seen.

- Ardyth


Oh my Thank you for the most recent email with the stories for folks getting a diagnosis. My spouse will not even consider it.. He is, of course, oblivious to what is going on.. meanwhile, I am in a private hell. .. like living in 'One Flew Over the Cuckoo's Nest". Reading these stories I see that I am not alone..

Hope is the enemy in this disease..

- Lynda


When my husband was diagnosed with dementia, I thought I could handle the situation by keeping him at home with various accommodations to his needs. As the disease progressed, however, he was no longer able to get up from his recliner and he became incontinent. His primary care physician decided he could no longer stay at home without 24/7 care. Reluctantly, I found a nursing home where he now receives excellent care. This change was difficult for both of us, but we now accept this change as a necessity.

- Louise


Hi, My sister always makes a statement regarding what is happening to her. It goes something like this. "Just wait to you get old". When I think of all of the inferences that go with that statement I have had to make more in depth accountability regarding myself. Am I going through similar changes. Ones that I perceive in my sister. We live miles apart physically, but close in many ways. Our "baby" sister and I have recently moved "older" sister into an assisted living situation. She was very resistive in many ways in the beginning.

After being there for approximately four months her perception has changed in many ways. She states she loves the place. Although much of what she talks about is repetition, she delivers her expression with great enthusiasm and delight. This is wonderful to witness and helps others realize she is a great witness as to what is happening to her and potentially happen to others. I am one year younger part of the year and two years younger for the other part of the year. This is all very relative but then is this happening to me?


We determined at that point to keep Bob at home and to add and increase in home care as needed. This we have done. We have 15 hours of in home care weekly. He also goes to memory care adult day care for three hours one morning a week. If I get sick or should we not be able to keep him at home, he will have had an introduction to daily ADC and the staff there knows him. We want to honor his wanting to avoid being in a care center. This is all difficult because of my blindness and rheumatoid arthritis. The hardest thing is the emotional exhaustion of living with the Lewy body dementia that is part of his Parkinson's Disease.


When we received the formal diagnosis that my mother's CT scan revealed "changes consistent with Alzheimer's disease" we sat down with my mother and told her of the diagnosis. At that time, she really didn't understand what Alzheimer's was, although she was in the very early stage. I knew she would be able to live alone for quite a while. My father died when he was 49. She was 71 at the time of diagnosis. She didn't accept the news well, and said the doctors didn't know what they were talking about. They did. From diagnosis to death, she lived independently, had home care, moved in with my husband and I, and finally, entered a nursing home where she died in 2004. To answer your question, I think the diagnosis was most important for my sister and I, as it gave us time to "plan" for her future. I learned everything I could about Alzheimer's disease, and to this day, am still learning and teaching our staff caregivers how to care for Alzheimer's patients. I also have been a volunteer with the Alzheimer's Association since 2003 and facilitate 3 Alzheimer's Caregiver Support groups in the Louisville area.

- Pat


MY WIFE WAS DIAGNOSED WITH VASCULAR DEMENTIA OVER 8 YEARS AGO. FRANKLY, THE DOCTOR SAID SHE HAS IT AND THERE WASN'T MUCH THAT COULD BE DONE. AND NEVER SET UP A FOLLOW UP PROCEDURE.

WHILE THERE WERE SOME PHYSICAL CHANGES TAKING PLACE THE PROGRESS OF THE CHANGES WAS RATHER SLOW AND DID'NT REQUIRE ANY OUTSIDE HELP FOR 4 OR 5 YEARS.

AT THAT POINT I WAS ASSUMING THE FULL RESPONSIBILITY FOR HER CARE AND IT BEGAN TO HAVE AN EFFECT ON ME THE CARE GIVER. I THEN ACTIVATED MY WIFES LONG TERM CARE PROGRAM FOR HOME CARE WHICH ALLOWED ME TO HIRE AN AGENCY TO PROVIDE ASSISTANCE TWO DAYS A WEEK SO THAT I COULD GET OUT OF THE HOUSE, SHOP AND RUN OTHER ERRANDS.

I AM ATTEMPTING TO WORK IN OTHER DIVERSIONS FOR ME SUCH AS GROUP MEETINGS, LUNCHES WITH FRIENDS ETC.

MY WIFE SAND I ARE BOTH 84 YEARS OF AGE ANS I AM CONCERNED AS TO WHAT I AM GOING TO DO WHEN THE LONG TERM CARE INSURANCE RUNS OUT AND/OR MY HEALTH WHICH HAS BEEN PRETTY GOOD RUNS OUT.

EUGENE


My wife Jane was first diagnosed with vascular dementia. We sort of kept going with few changes. For example we went to China and on down to Bangkok in 2004. Then in 2005 we went to Holland in the tulip season. Things began to really fall apart that summer and we went to Mayo Clinic in September where she was diagnosed with "dementia of the Alzheimer's variety". I immediately set about reading and preparing for our future. I kept her at home for almost 8 years. Before long I was hiring girls from Home Instead for 3 hours a day, 3 days a week. This allowed me to do the grocery shopping and other necessary tasks.

Jane was a severe wanderer. Finally, after trying motion detectors and baby monitors, I settled for an additional lock high up on the entry door (out of her line of sight and probably out of easy reach). This living at home finally became impossible and after 7 weeks in the psychiatric ward of the hospital, we got her into a full skilled nursing home with a locked dementia unit.

This nursing home is 42.5 miles from the condo where we lived but I drive the 85 miles round trip 5 days a week to be with her. I feed her lunch and supper and get her into bed. She has had one major stroke and lots of TIAs since becoming a resident in the nursing home. She is 90 and I will be 88 in the spring. She was diagnosed at Mayo on her 80th birthday in 2005. We have been married 62 years.

I could say a lot more, but I better stop, but would be willing to answer any questions directed to me.


Lynn's condition was formally diagnosed medically approximately 5 years ago and at that time we did not begin formal home care services because she still seemed to have reasonable control of her normal physical and mental functions and started taking her prescribed medications and specific vitamins. I work out of our home and are here 24 hours a day so because of that situation we didn't feel at that time home care was not needed yet but it was noticeably slowly progressing so she relaxed and sat more. She occasional would walk in our backyard but even back then she would get dizzy very quickly so she mostly sat idle and then did walk around the house a few times every day. Then about two years later her condition began to start affecting her everyday life more. So again with myself here I started more and more helping her more and more with her personal care, meal preparation, dressing etc. Then within the past 6-8 months ago her condition began to quickly started changing for the worse which is when our family began searching for personal care services that were available.

Regards,
Steve


As you are aware, the process of diagnosing dementia is not straightforward. My mother started showing signs of memory loss and unusual behavior. Her family doctor had treated her for years and had provided her support through my father's various illnesses. I suspect that he really did not WANT to find dementia. My mother had a number of health problems that had to be sorted out before the doctor began to consider the possibility of dementia. First, she was having repeated UTI's - and we all know that causes confusion for elderly people. Then, she was complaining of debilitating headaches and I trekked around with her to several specialists recommended by her family doctor. (I suspect now that she was overdosing on her medications, forgetting that she had taken them - or possibly taking meds left over from my father, in the hopes that they would cure whatever was wrong with her.)

We finally ended up at a neurologist who specializes in dementia - and heard the diagnosis of dementia, which my mother refused to accept. But it was clear that she could no longer live alone. I enlisted the neurologist to be the "bad guy" to tell her that she could not stay by herself. I immediately moved my mother to my home - and after six weeks, I lost 25 lbs and was a wreck trying to deal with her. I decided on assisted living nearby my home and moved my mother in. She was mad at me, but after about two weeks, decided that it wasn't so bad.

What would I do differently? I had supported her decision to stay in the house my parents shared and told her that I would help her stay there. It would have been better to plant the seed that independent living was perhaps an unrealistic goal. (Of course, now I find myself doing the same thing for my aunt, helping her renovate her home for aging in place.) Getting Mom into assisted living was a good decision - and the care she has received is excellent. At times, I feel guilty that I am unwilling/unable to provide care for her - but I remember the toll it took to have her for six weeks.

- Peggy


Once we had a formal diagnosis, my mother needed to be moved to a facility. She was unable to care for herself. The doctor said that she should not live alone and I am unable to care for her 24/7. She needed someone to cook, make sure she has her meds, help with showers, etc... Lots of reminders and help. It seems like once we got the formal diagnosis, things changed quickly. This has been just over 3 years ago and I'm still learning something new each day.

- Wanda


Decisions were not made at time of diagnosis. My husband lost the ability to communicate and I was able to deal with that. When he became incontinent I knew I needed in home help. However our sons felt that nursing home care would be much better than having in home care. That decision was difficult to accept but has proven to be the best one!


My husband and I really didn't do any thing different. Between four other siblings, moving my mom from SC to TN was the best choice. We all new that her short term memory was failing her. I did do a bit of research and reading. I learned different ways to handle situations. Mom would use three or four towels in a two day span. Then I realized, to her, they all looked a like, so I got several sets of bright colors. Now she know the different sets. It took me several months to get my mom in to see my Doctor. My mom really likes her and feels very comfortable with her. Mom has tried several different medications but none seem to agree with her. At this point, I think the medications are not worth the di side effects. Maybe we will try other medications later.


My husband thinks he will ALWAYS have mild alzheimers and insists he is okay. I double check him and that makes him angry. Since his dx I have had gastroparesis, depression and other medical issues. It has hit me hard as I know the downhill journey ahead. I used to be a social worker and worked with the elderly so I know what this disease can do. I have joined a support group but it makes it worse listening to the stories. I would like to join an online chat but do not know how to do it.

- Carol


The first thing that must be done is to see a lawyer. You will need a durable power of attorney, an estate plan if there assets, a will, a health care proxy and a living will for treatment decisions. If you are the primary caretaker you must decide what will happen if you die or are disabled.


After keeping doctors appointments became more and more an ordeal, I searched for homecare that provided medical assistance through CNAs, RNA. and wanted a doctor's to make home visits once every 3 months or when RNA thought a visit by doctor was necessary I know it cost but doctor use to make house call I think with cost of homecare one should have been included in the price already charged.


Your Diagnosis Experiences

As promised, I'd like to share with you some email responses I received from readers about their diagnosis experience. You'll get a touch of advice, a taste of reality, and the comfort of knowing you're not alone on this journey.

Kind regards,
Cat Koehler

P.S. After reading these responses, you might be as curious as I am to learn more about the diagnosis experience and next steps. Specifically,

  1. What, if anything, did you start doing differently once you got a formal diagnosis of Alzheimer's disease (or other dementia)?
  2. Did a formal diagnosis accelerate care decisions like hiring home care help or moving your loved one into a memory care facility? If so, what level of care were you looking for at that point?

Feel free to email your thoughts to me at livechat@homeinstead.com. I'll post your responses for other caregivers to read right here on this page. Thanks for your help!

Reader responses:

If you suspect any of the signs don't let the doctor brush it off. Get tested. 2 years before my husband was diagnosed with dementia I told the doctor the signs that I saw and asked point blank if it could be Alzheimer's and he was adamant that the answer was "NO." Push them to find out and don't stop till you are satisfied with the test results. My husband is now full-fledged dementia and lives in a VA home. Had we been better prepared he would probably still be at home.

Thank you,
Jane


Although the email on early detection was intended for caregivers deciding whether or not to get their loved ones diagnosed for the cause of their cognitive issues, there are important implications for the caregivers themselves. People with Alzheimer's or dementia conditions (diagnosed or not) in their own families should consider long term care insurance immediately. Insurance companies can legally include family history in evaluating applications for long term care insurance. This doesn't mean that people who have Alzheimer's in their families are automatically turned down for long term care insurance, but it may affect the benefits they can get or the premiums they will pay.


If you suspect someone has memory issues before you do anything consider getting long term care insurance. Yes is can be expensive but compared to the monthly costs of a memory care facility it is insignificant. Once you go and see a doctor for memory issues getting the insurance is impossible. This decision can be a matter of life and death - for the caregiver.


It is my personal opinion that Alzheimer's is affecting the patient LONG before it is causing enough concern that people seek a diagnosis. All the doctors ask "when did the symptoms begin" and each time I reach further back in time to noticeable changes that were dismissed at the time. I have real doubt that the meds my husband takes are doing anything for him as far as slowing down the disease progression. The time line is a mystery from the beginning and continues to be for the future.


It has been documented the importance of early detection. That is great but getting that diagnosis is a long process. And then follow up seems to be just as bad. Our example. My husband now 59 started showing symptoms years ago. We had him tested......no you do not have Alzheimer's. This spring things happened that couldn't be ignored however it took us over 5 months to even get an appointment at the Mayo clinic. After blood work, scans and 'interviews' we did get the official diagnosis. Alzheimers. 2 more month till an appointment with a physician. He then says he wants us back in 6 months. Great. But Trying to get that appointment.....they say 8 months out. It is just frustrating. Clinical trials. I decided I will start searching on my own. I don't want to wait for the system to catch up. Not enough Dr's, not enough money for research. I hope I don't run out of hope. Thank you Jennifer for ALL that you have done to bring these issues to the forefront. I know I need to be patient but it is so hard.


Hello Cat,
Thank you for all your thoughts and the work you do to assemble the newsletter.

It took a long time before there were specialists who could test our mother and father because there were no resident geriatricians in their area, let alone psychiatric geriatricians. While our family was trying to locate appropriate specialists, I was working with a gerontologist in the editing and writing of a text book to train business people working with seniors and boomers. I took special interest in researching with mental health professionals and those with expertise in dementia because of our parent's situation.

I believe that a big issue is that there is a lot of ignorance/ lack of knowledge about organic brain disease. The diagnosis of "Alzheimer's Disease" is not necessarily correct or accurate. This is unnecessary stress, mostly because, although Alzheimer's is the most common, it is one of several dementias. Alzheimer's Disease can only be definitively diagnosed at autopsy.

There are other symptoms that may present "like" a Alzheimer's. A urinary tract infection is the most common and can be treated with antibiotics, making the symptoms disappear. A stroke can also cause demential symptoms (vascular dementia). More frequently, I understand there is "mixed dementia" where more than one type of disease is present in the individual, which may or may not be with Alzheimer's. The increase in obesity is also known to increase the risk of cardiovascular issues and therefore an heightened possibility of dementia.

While our mother did receive a diagnosis of mild dementia, we noticed that increased activities in her care home along with daily physiotherapy proved a tremendous benefit. It was almost like having her back, cognitively. I believe the increased blood flow was a huge boost to her brain, along with the increased muscle mass in her weakened body. No doubt that the other activities were stimulating because they were fun! We're so grateful that the care home where she lives has the inventiveness as well as the compassion to see past the occasional poor short term memory.

Thanks again for your newsletter.
Best regards,
Diane


I definitely have seen the value of early diagnosis. When I first saw the signs in my husband a GP worked with me to organise further investigations. By the time I was able to get in to see a geriatrician who first diagnosed Mild Cognitive Impairment to a later assessment that involved a neuropsychologist as well, it was a process over a period of two years. He was then diagnosed with a crossover of 3 forms of dementia. Now I really had something I could work with as far as understanding the disease and informing myself as to how to handle the symptoms. I did an online course that a university offers without fees and have read extensively. I hoped my husband would be accepting once it had a specific name but it was still some time before he was able to do that. Once the sufferer accepts the problem it makes it a little easier for the carer. Having seen other carers who have been barely coping for some time without an understanding of the disease I am very grateful that I had an early understanding.

Regards
Louise


We are getting conflicting info from two different docs!


My husband (Gordon) is 63 years old now but I suspect he's been battling dementia for a few years now. My world came crashing down last summer (August 19th) to be exact. Now he is hardly communicating, cannot do many things on this own now, cannot even turn tv channels, or open a can of pop, he tries hard, but he is depending on me so much. I recently have had my own health issues, a rare brain aneurysm called a sigmoid sinus diverticulum associated with pulsatile tinnitus, as well as menieres' disease and chronic inflammation. I just recently went back to work part time and during those days he is not eating, or showering and gets angry at me when I get home. We recently found out he has skin cancer as well. I am his sole caregiver (his kids are grown up and not able to help).

I have given up on that scenario. When did you decide it was time to have your spouse put into a care home? I am really against this and even bought a three bedroom townhome to accommodate someone else to help me when the time comes when he is going to need 24 hour care. He not only has alzheimers, but vascular, frontemperol (sp) dementia as well as a bit of parkinsons. Do you think I should put him in a home or keep him here with me. He's not ready right now but I know I will have to make this decision on my own. He has gone downhill very fast. From working in Spring of 2014 to not able to cook, read, write, communicate, and so on.

I have no other family support. Its just me and the dog. I am hoping I can catch you online live chat - November 17th @ 5:00 pm but I am working at that time (as I live on the west coast of Canada). I look forward to your thoughts. Your feelings on your blog are exactly the way I feel. I am 54 years old and still have a lot of life left in me.

Lois


I've thought a lot about what you've said. My husband is 55. We have been together 5 years. At age 52, he was diagnosed with both Alzheimers and Frontotemporal Dementia. Before that time he had some other health concerns. Once the diagnosis of Alzheimer's came the doctors dropped everything else and no longer seemed concerned about other issues. So, sometimes, getting the Alzheimers label isn't always better. Our society isn't educated enough to understand and care as much as they should.

Not only that, people don't expect someone my husbands age to have this. And there is no one in our age group where we live that has this, to connect with. Even though I know there are more out there. Before you offer suggestions, I have reached out everywhere and continue to do so with no luck. These are just my thoughts on the subject.

Regards,
Dawn


Paying for Care

Thank you to everyone who filled my inbox with advice about paying for care! It's always wonderful to see how eager our community is to share their experiences for the benefit of other caregivers. As I read through your emails, what struck me most is that when you have a loved one with dementia, you're not just a caregiver. You're a financial manager.

Everyone faces challenges when it comes to managing a loved one's assets and coming up with funds to cover care costs. But we find ways to get by because we have to. We get resourceful like Linda, who realized she could save a lot of time and money by paying a nominal fee to eat meals at the care home with her husband, rather than grocery shopping and cooking on her own. And we seek assistance from professionals, like Tere and Tammie who consulted a financial planner, or Christina who familiarized herself with local resources available through her local council on aging.

I know many of you don't currently have a solution and are eager to hear what other caregivers had to say, so I included as many responses as I could below. Even if you don't find an answer here, I hope you'll find a good starting point.

Best wishes,
Cat Koehler

Reader Responses:

I supplement my mother's expenses with my own. My mother has AD and lives with me in our home. She attends an adult day program and I hire a caregiver when I want to take a quick vacation or break from my caregiving role. It is very expensive to care for a loved one with a dementing illness. Transportation is an issue, cost of at home care is expensive and at least where I live in Dauphin County, Pennsylvania, the department of aging moves excruciatingly slow and one must be vigilant to keep making calls to get benefits that our seniors deserve. Almost all options for senior care has the potential to bankrupt an individual.


Managing is not easy. I oversee my parents affairs and use their money to pay for their care at this time. I would talk to an eldercare attny & financial planner to find out what alternatives the parent has in getting any govt asst. Getting family members to take turns with the loved one is the best option to me. By doing so, helps keeps the cost down and everyone shares the responsibility.


You can never start too early. Get a Power of Attorney for your loved one, preferably prior to disease onset, and while you are at it, get one estabilished for yourself.

Do a lot of research to make sure you understand your loved one's income and any benefits that might be available.

Educate yourself on everything.

Do not forget about VA benefits.

Make sure you know what their long term care insurance benefit is, if applicable. Some of the early policies actually pay toward assisted living charges.

Check into your local council on aging and get on the list for services as soon as you can (even before your loved ones need them). My parents were on the list for 5 years and finally became eligible for reimbursement for some home health aide hours in their home when we were moving them to another county. Guess what – the benefit did not transfer to another county and they had to be placed on another county's waiting list!!!!!

Ask questions of everyone and don't accept the first answer you receive because unfortunately it could be wrong. Although, it is good to get input from people who are "in the trenches", be sure that you talk with professionals. This way you can get someone who knows the law, looks at the big picture, and really understands you and your family. Be sure that you interview this person (financial advisor, elder law attorney, etc.) to find someone who you have a connection with and who you can work with. Financial planning for this stage of life is very complex!!!!!!

Send in a request for missing savings bonds to Bureau of Public Debt. A lot of seniors have bonds, but may not have the hard copy. This is free and you can get the forms from their website.

I was blessed. My parent's gave me free reign to access their money at a very early stage of their disease. When Mom got a little funny about her money, it was really no big deal because I already had access. Also, her resistance did not last. My suggestion is if you get resistance at first to get a POA signed, etc., keep the papers handy, and try again.

Take advantage of anything you can to save money. I was amazed at the amount of free stuff you could get with rebates, coupons, etc. I treated every dollar of theirs like it was their last dollar. WATCH OUT FOR PREDATORS!!! While they were still in their home, we got wind that dad hired someone to do concrete work at their house. A scam artist. Boy, did he run when I talked with him.

Make friends with the banker that your loved one uses and of course give them a copy of the POA. Limit access to your love one's account. We actually put a password on my dad's account (which he could never guess) because he would have someone walk from town and clean his gutters and then drive him to the bank for payment. (We thought we were safe because dad was no longer driving…)

Revisit your loved one's prescription drug plan. I just read that 80% of all seniors are in the wrong plan for their particular situation and pay too much money. Our local council on aging gives free advice/council at election time. I did not do this and wish I would have carved out the time. On a side note - I did keep my parent's prescriptions at a local pharmacist. Although, it was probably more costly than doing mail order, you don't know how often I was able to consult with the pharmacist and get some great medication advice.

I managed the majority of my parent's finances/assets, but I did start to ask for help from my brother for the bigger items – house, car, taxes, etc. I did this partly because I was also managing their day-day care and I was just exhausted.

If you are trying to protect their money, you can have your loved one hire you to take care of him/her. This contractual agreement (hours are tracked, taxes are taken out, etc.), called a personal care agreement, allows you to draw a reasonable hourly wage for specific tasks you complete for him/her. This money is not included in the 5 year look back period in Medicaid. You can put this money into a savings account and then if they are ever placed in a nursing home, they will become eligible for Medicaid reimbursement faster and you can then supplement their monthly allowable income, so that they can afford new clothes, haircuts, special treats, etc. Of course, this is if you do not spend this money.

I started planning for increased care involvement by me approx. 5 years before it became a reality. I researched a profession that had more traditional hours, quit my job, went back to school, graduated with a new degree, and got a new job with more flexible hours. Not as much money, not really a life dream, but I do not regret it at all. It allowed me to spend so much more time with my parents before they both passed away in January 2015. I give God the glory for opening all of the doors that he did to make this happen.

Christina

Mom with Alzheimer's, Dad with Vascular Dementia, Both passed away in January 2015.


I would like to have some ideas re the financial concern. I am keeping my husband at home as long as possible even though it is getting more difficult because of limited finances.

Lyn


We've been told that, ultimately, we are probably looking at memory care. All of our assets are jointly held and we have a family trust. I think we are looking at some sort of continuing care facility, where we can both live. I have a govt pension, plus we own our home, which we would sell, and we have some stock investments. We will use my pension, as far as that goes, then the proceeds from sale of house, and finally our stocks. Terms of our trust allow us to make medical decisions for the other, etc.

Is there something else we should be doing? We are both in mid 80's.


My husband has Alzheimer's and doesn't qualify for Medicaid. Apparently to much money for Medicaid but not enough to pay out of pocket for assisted living or nursing home. So I need to know how to work the system so he can get what he should be entitled too.


My mother doesn't really have any assets except for a couple small share accounts. She does get her Social Security check. I get a part of that for expenses and more if I need it for her personal care. I, her daughter, and the main financial decision maker. If something comes up that needs a big decision on, then that is done with my sisters and I.


My folks did a terrific job of saving / investing which has helped tremendously in the care for my mom (92) who has been in a memory care center since 2008, 6 months after my dad died. To keep the private pay funds available, we have sold their house, her farm land and I have been closing out all bank accounts ever since. There is still a little money left, but it won't last long at over $6000 a month. Once she is out of money (the spend down) then we will have to apply for her to be a ward of the state and get a waiver.

I have POA for my mom, but I include my 6 brothers and sisters in major decision making. My brother rarely says anything, and one sister just says "You're doing a great job, I support you." Three other sisters actually have discussions with me and we go over options, pros and cons. The final sister has dementia, blindness and cognitive difficulties now so she is not capable of helping. I have POA for her, too.

Using a financial planner to help is a major help in planning for the expenses. If one does not have one, find one! If one cannot rely on siblings, get some support from a group or close friends. Trying to maintain all of the dementia plates in the air at the same time is way too difficult to handle alone.

Tere


I believe you can get medicaid but have to spend down all your money except about thirty thousand dollars. Adult daycare is a good option for caregivers. It is a tough journey and I am doing my best. I have no help at this time.


There is nothing easy about it. Early planning will make it easier. Wish that would have been the case for us. We have given up careers normal activity in immediate family. Lots of sacrifices. Those family members not dealing with the situation daily has know ideal of the hardship personally & financially. But all is good for them when they make their occasional visits of course. 24/7 care cannot be understood till you have to do it. There is so much hidden cost and emotional hardships. The only thing we keep saying is we are doing what is best for our love one. And we try and take time for self. It's just really hard. I pray I will not put my kids and wife through it as I age. Pray a lot.


My spouse has Alzheimers. I have always, in our marriage, been the financial person by mutual agreement. Now I see our retirement being stolen by an illness called Alzzheimers. Despite the fact that I have medicare and supplimenatary (BC/BS) health insurance, nothing is paid for care by either until all our hard earned savings are depleted. Where does that leave the "one left behind". It is a sin that it is so. My stepdaughter lives in Sweden and they take care of their people there. Yes they pay high taxes but add up all the various taxes we pay here and it is very comparable. What is not is what we get for our tax monies.


Hi Cat -

The first thing I would insure is the end of life documents are in order - meaning - Last Will & Testament or a Trust, Durable Power of Attorney with Health Care & Guardianship provided, and a Living Will.

Check with VA if either spouse was in the military for funds from the DIC (Dependency & Indemnity Compensation), or A&A (Aid & Attendance). Most people are not familiar with those programs. Check with Medicaid requirements.

Sell the assets as needed.

Vita


My husband has Dementia and I would like to know where to begin with this. We have caregivers 4 times a week but sometimes that just does not seem enough so I am looking as placing him but do not know where the finances will come from. Please give me some ideas of a starting point.

Mary


My mother has one of the older long term care policies that pays $150/day for an unlimited number of days. The policy was sold to her as something that, with social security and a very small pension would allow her to live in her own home for life. Obviously this was not true - so look closely at what you buy. She lives with my husband and I, and when she had the earliest hints of memory issues, had set me up as medical and financial power of attorney. Those agreements were prepared by a lawyer and needed a letter from her doctor to put them in force.

Theses medical arrangements get trickier as our new health system separates us from long term relationships with a single doctor.

My mother chose to have me buy a house that was more suitable for her to live with us - one one level, no stairs and bedrooms separated so we would have some privacy. I have managed her money for the last 4 years since she came to live with us. At first, we did not have care givers, then I introduced the idea to get her out more to activities, then after a fall, hip replacement and rehab, brought the caregivers on closer to full time. I needed night coverage to stop her from messing around in the kitchen at 3am and after waking up with her staring down at me confused and angry a couple of times and realizing that her personality was changing.

Long term care pays for about half of her care, with social security and draw down from other funds paying the rest. As her funds run down, she will become eligible for other limited services in illinois if the programs still exist after the budget cuts, or she will wind up in a memory care facility. As she gets goofier with the Alzheimer's, with more psycho anger episodes, and less willingness to alter her eating to avoid uncontrollable diarrhea,the nursing home becomes the solution. I have had to manage her investments, clean out and sell her house over her protests and generally deal with the tax and financial issues.

I have one sister, who takes my mom for 3 or 4 days about every two months. She spends her time as a lobbyist trying to change the world and generally has little involvement in my moms care.

It is tricky selling houses and dealing with disposing of property when the person you are helping is not in support of this it took three years to get the house taken care of which resulted in a lot of wasted real estate taxes and loss of value to the house. All I can say is that this stuff is a wake up call to those of us who are younger to clean up your garage and basement and get your finances in order and be realistic about how you are going to live in your elder years. Trying to hunker down in a little house with limited help is very lonely and then eventually the decisions get made for you.

T


Financing home care is a huge struggle. We are keeping my dad with alzheimers at home so he can remain home with my mom who has ALS. We are almost through their life savings and worried about how the 4 kids come up with 10,000 per month to give them 24 hour care when we kids can't be there.

I have called every agency I can think if and there doesn't seem to be financial help available for them at home. Medicaid only covers care in a nursing home. It would not be good to move him there at this point.

I haven't found any help with Obama care, but everyone I talk to gives me a different answer. I spend time researching erroneous info only to learn it was incorrect. We are ok for a few months, but very nervous about the near future.

There are four kids but some are retired or not making enough money to split the cost. Two kids live out of state and I live an hour away but go to them frequently. We don't know what we are going to do and it causes big stress. I am their financial POA and a CPA and can't find a solution.

Any suggestions would be very much appreciated


One of the things I am so glad my dad did was that he made me his POA/DPOA early after his diagnosis of Alz, while he was still alert and oriented. That cut down a lot of the potential issues as he appointed the person he wanted to manage his estate and medical decisions so there was no argument. On my part, I have always been up front with my siblings on everything I do so that they understand why certain things are being done. I have been blessed that they are behind everything I do and have been totally supportive of the decisions I have made.

I would highly suggest that families meet with an attorney or financial advisor for advice on managing the estate. I found an elder care lawyer who came to my house for an hour of free consultation just to make sure we were doing everything right. I don't know if all states have Pro Seniors, but it is a free service in Ohio for anyone over the age of 65 (or representing said person) and it is a free ½ hour consultation with an elder care lawyer on any issues being faced by an elderly person.

Also be aware of all the resources in your community—from the Council on Aging to any elderly services programs, private pay home care, to state-funded support in the home, even transportation; there are many options for keeping your loved one in their home if they are cooperative! If not, visit nursing homes early and often—make sure they take Medicaid or state funding if there is any chance your loved one will need that resource down the road—you don't want to have to move them after you get them settled in one place!.

One of the greatest blessings I have ever had was having my dad with me for a year. It wasn't always easy, but it was truly fulfilling. I am a big proponent of multi-generational families—such a wealth of caring and learning! And. Legally, you can be paid for your care-giving services—just be aware of the taxes you will need to pay and set that money aside.

Hope this is helpful to some of you out there!

Tammie


For those who find themselves in a position of having to place their loved one in a facility/memory care/assisted living...financing can be even more if a concern due to the cost. Know that there is a program out there that can assist veterans & spouses or widows/ers of veterans up to $1500/mo. The vet only had to serve not retire as a vet.


You can not take this journey without the advise of an excellent elder care lawyer. Do not even make decisions on your own without first consulting the lawyer. The Alzheimer's Association can recommend elder care lawyers in your state. Prior to going, list all your assets, acct #s, values, (inc your house, cars) to make the visit more productive.

Maureen


Story from a non-caregiver

Cat recently asked me if I would mind sharing my thoughts on caregiving with you. It's funny, though, because I don't consider myself a caregiver. I just happened to have a grandmother with dementia, who I loved a lot.

My grandmother--Grammy--passed away over a year ago, but I still think of her often. There's one memory in particular that stands out in my mind. At first, I was hesitant to share it with you because it's not really about caregiving. It doesn't give any insight about how to manage symptoms or how to cope with caregiver stress. But in a way, it has everything to do with caregiving.

Even though I'm not a caregiver, Grammy most definitely was. A natural one. She cared for everybody. Family members. Neighbors. People at church. Even the guys who did her yard work. She would worry about them getting dehydrated in the heat, so she always set out cups of lemonade for them. Grammy just had a way of making everyone feel like they were important, loved and valued.

When I was a little girl, Grammy invited my older cousin Leanne and I to a tea party at her house. Although we lived nearby and saw Grammy and Pop-pop often with our parents and brothers, this was her way of creating special girl time for just the three of us—and our dolls, of course. We ate little finger sandwiches off of Grammy's fancy tea plates and drank pretend tea (apple juice) from her gold-rimmed pink teacups. We had fun acting grown-up and lady-like, with Grammy's guidance on proper etiquette and manners. Most of all, we loved the simple act of having special Grammy time—so much so that teatime with Grammy became a tradition we continued for many years.

As Leanne and I grew up and went off to college, Grammy and Pop-pop grew older too. Grammy began spending all of her days tending to Pop-pop in the nursing home, reluctant to ever leave him alone for long. She was the most loving, devoted wife and caregiver anyone could ever hope for. My mom and aunts would encourage her to take some time for herself, to go to her church group or come shopping with us, but she always insisted she had to get back to Pop-pop. He was well-taken care of by the nurses at the nursing home, but no one cared for him like Grammy did. He was her life. When Pop-pop died, Grammy withered.

Any hint of dementia we had noticed in Grammy before Pop-pop died became much more apparent. My aunt had to take over managing all of her bills and accounts, Grammy became fearful of driving anywhere "far," and she began talking to a picture of Pop-pop, telling him when it was time to eat and when to go to bed, as though he was still with her. It killed us to know that she now spent so much of her time alone at her small cottage, consumed with loneliness, grief and confusion.

Our grandmother, who always had so much love to give, now desperately needed it in return. So Leanne and I came up with an idea to bring some happiness and love back into her life: We would throw a tea party!

It would be just like old times. We'd dress up in nice dresses and fancy hats, we'd make finger sandwiches cut in flower shapes with a cookie cutter, and we'd spend the afternoon talking and enjoying each other's company.

Leanne and I showed up at her cottage with all the supplies we needed to throw our most special tea party yet. We had made plans ahead of time so Grammy would know when to expect us.

Yet when she greeted us at the door, instead of her usual open-armed welcome, her smile was mixed with confusion as to why we were there. As we began setting the dishes out, we noted that the Pop-pop photo now occupied the fourth place at the kitchen table where our menagerie of dolls would usually sit. No, things weren't just like old times. So much had changed.

But I'll never forget how Grammy's initial confusion melted into joy as we sat down to have our lunchtime tea together.

We drank real tea this time out of the gold-rimmed teacups that Leanne and I now owned. Grammy marveled over the wonderful sandwiches, scones and cookies that we had prepared. And we sat in her kitchen for hours talking and sharing stories. Although so much had changed, for one afternoon it didn't matter. What mattered was spending time together with Grammy.

We couldn't change the fact that Pop-pop died. We couldn't reverse Grammy's dementia. We couldn't be there to visit her every day. But we could love her. And we could create special, meaningful moments for her. Just as she did for us.

I think that's what caregiving is all about. Recognizing what you have no control over, and pouring love into the areas you do.

So maybe my story does have a lot to do with caregiving. And maybe I am a caregiver, after all. I suppose we all are in one way or another.

Do you consider yourself a caregiver? How have you poured love into an aging family member's life? It would mean a lot to me to hear your story. You can email your thoughts to livechat@homeinstead.com. Cat Koehler will be on the lookout for your emails. We hope to hear from you soon!

Sincerely,
Alison Roncin


I am a Caregiver Who

In an email I sent a few weeks ago, I asked how you would finish the statement, "I am a caregiver who_________." It was really interesting to see how many people filled in that blank with an emotional statement.

-- Cat

I am a caregiver who would just like to have someone to talk to about today's events and have an adult meaningful conversation.

I am a caregiver who…

Loves taking care of mom.
Wants mom to live many more years. She is 87.
Enjoys taking mom out.
Enjoys mom's fantasy world.

Doesn't want mom to suffer.

Wishes I could do more for mom.
Spends over $1500 a month for mom's care.
Thanks God she has 12 hour daily service paid for by the U.S. Government.

Finally understands I can't do it all.
Finally understands I need a break.
Finally entrusts someone else to help out.

Am doing the best I can.

Thank you for listening.

-- Anna

I am a Home Instead CAREGiver who serves with joy those assigned to me, because it is a way to lighten another caregiver's load and brighten a cared-for's day.

-- Sarah

I am a caregiver who wishes I didn't have to work so I could have quality time with my mom who lives with us. I'm also a widowed single mom of a 15 year old. I'm tired all the time and honestly, after working all day, I'm exhausted. I feel so guilty but mom doesn't have enough money to live and my brother & sister are no help at all.

But it's all good. God is in control and will lift me up. Tonight though... My feet are killing me!! Thanks for being here so we can vent. It helps knowing we have a support group. People that can relate and love their parents and only want to make their final years as comfortable as possible.

I am a caregiver who considers myself privileged to be the one to care for my dad as he transitions to be home with the Lord.

I am a caregiver who is tired. We've been staying with Mom for three years now. My schedule is every third night, so I feel guilty sometimes when I read your articles of people who never get a break or don't or won't ask for help with their loved one. I am a widowed single. I dated some last year, but it overwhelmed me working my schedule around even another someone else. I have a college age child still at home and trying to be there for her is also draining. I'm determined to schedule some "me" time this year, to help me and help me be a better caregiver.

I am a caregiver who loves her Mom and cares for her every day. I only wish that her 6 other children would see that she needs the rest of her family to be happy. Giving back to Mom is a blessing not a burden.

--Donna

I'm a caregiver who has outside help for my own peace of mind. 24/7 is hard to take, I'm ashamed to admitting this. I know I have to be strong in order for my husband to stay at home.

I took a vow in sickness and health, I didn't know what I was getting into 54 years later. I have a hard time letting go. I want my husband to be the same person that the children knew when they were growing up. I have a hard time letting go. I'm no longer hurt by the mean things that are said and actions taken. He thinks everyone is stealing from him, he loves to call 9ll. Our community has really trained the police force well for Alzheimer's patients... I feel like I'm in a black hole and will get like him. He could be great. He could still watch a movie, and get into a football, basketball or baseball game and completely understand it.

Sometimes he knows the children, sometimes not. He wants documentation of our marriage, who owns our house, and said he is afraid of me. He still has social graces. If you met him you wouldn't believe he has Alzheimer's disease. His brain seems to be best in the a.m. when he wakes up, if he is tired or hungry "Look out." Every morning we wake up to "where's my keys," and starts tearing the bed apart and moving everything. Feel guilty talking about... seem like I'm loosing my "positive attitude" which kept me going thru life. He also has a great sense of humor everything seems to come and go.

Amen.

I am a caregiver who loves my mom with all my heart and soul. She gave me life and I will do whatever I can to make her life more comfortable. I just wish I could do more. Dementia is such a mean disease.

I am a caregiver who is struggling to accommodate to the "moving target" of my partner's behaviors and capabilities that change from day to day; I am determined to help him have the best possible life for as long as possible.

-- Jennifer

I am a caregiver who gave up my job in 2008 to care for a mother-in-law with Alzheimer's (she passed away mid-2009), then a caregiver to my new born granddaughter (born in 2008), only to learn at the same time my husband was diagnosed with early onset Alzheimer's, which we are still suffering with.

I am a caregiver who is overwhelmed and ambivalent.

-- Tracy

I am a caregiver who cared for many people... at work, church, an aged mom, a friend's aged mom, and a teenaged daughter. For many years I have given out to others, MORE than I HAD to give. I tried to care with balance in my life, until the stress became so great... I broke. After hospital, I am now a caregiver that is learning slowly... to care for me.

I AM A CAREGIVER WHO CAN'T WRAP MYSELF AROUND THIS HORROR THAT IS COMING DOWN THE ROAD.


Dementia & Sex

It's so important for caregivers to have the opportunity to share their struggles with someone—and to know they're not the only one dealing with some of these "hidden" issues. Thank you to all the caregivers in our community who shamelessly shared what they're going through. Their anonymous, PG-13 responses are below.

-- Cat

My husband is unable to perform and in the end, he is sad. Although I know that having sexual relations are important, his lack of interest and follow through is more than evident. So, we have not bothered. He seems to just like to be hugged and cuddled. Should I keep initiating some sort of intimacy? Viagra is not an option!

My first indication that something was different about my husband was when he stopped wanting to hug me. He was only 50 and I was at the sexual prime of my life in my mid-40s. I was devastated! Although we continued to have sex, he became clumsy and it wasn't very enjoyable for me. It became very clear about 10 years in that he had forgotten completely how to kiss or how to be amorous. Pulling together all my gumption, I actually asked him if he forgot how to kiss.

He was so relieved when I asked him! He hung his head as if he had done something wrong and admitted to me that he had indeed forgotten. I forgave him and told him not to stress about sex or even kissing, that I didn't mind him not doing it anymore. Secretly, I was happy to not have to deal with his clumsiness. We had always had a wonderful sexual relationship, very fulfilling, and this awkwardness was hard for me to take. Great relief for me as well!

Now, seventeen years later, we kiss, but it's not the open-mouth kissing we did when we were young. And it's only once in a while. No make-out sessions, that's for sure. But we do hug. That's the extent of our intimacy. I cuddle up with him while we watch TV and lean my head on his shoulder when we're sitting next to each other. And, surprisingly, it really is fulfilling. I miss sex, to be sure. Showing my husband with nonsexual physical touch that I love him works so much better than words alone.

Thank you so much for broaching this difficult subject!

I have been a caregiver for the past 18 years. In all that time I have never had that issue come up. It actually had never even occurred to me! How awesome that you have brought this subject to the forefront for discussion if the need arises!

I will definitely keep this in my "go to list " for HELP!

Even with an active sex life during our "honeymoon" phase of dementia where my husband thought we had just married which lasted for about two years, he lost skills to the point where he forgot how to thrust. His kissing got to be like an unskilled teenager and even though I gently tried to take control to compensate for his diminishing skills it didn't work to my satisfaction. By the time I had to check him in the bathroom for cleanliness during this past year, my desire for it with him waned as I felt I was more of a caregiver than a wife even though he is still quite vital as I am too. I don't know what to do. It appears my role as a compassionate teacher or leader is over. He no longer remembers the experiences and I no longer get anything out of them when before we had no problems in that area at all. I am at a loss that the most we can do is cuddle. I'd love some advice, but people just don't want to talk about such a sensitive topic. I bet people who are newly paralyzed or who lose limbs talk about it as a normal part of medical protocol. Why not spouses with dementia? We don't necessarily know everything about dealing with this disease.

THANK GOD, SOMEONE KNOWS WHAT I AM GOING THRU. My husband started to have increase in desire too. He never was that way before.

Now he has had dementia for 2 years and he is in the stage of not wanting to take a bath, shave or brush his teeth. I also found out he had a yeast infection. Really bad one. I got him the cream and told him he had to use it daily after washing that area. He is better now, he says. I don't want to get his yeast infection, I have enough trouble with them.

He has been hinting for sex also. So sad to see him this way. I love him very much.

I am going on 69 and he is 73 in 22 days. He is on Aricept (1) and Namenda (2) each day. He has been on these for one year.

I get depressed over this stuff.

My father had vascular dementia. He started masturbating in public. Of course, I was appalled when I was told this and then I witnessed it. (I guess a part of me was hoping that I was being told incorrect info.) The facility at my request limited dad's exposure to others until we could come up with a solution. I did not want to make anybody uncomfortable.

I waited until I was calm and then I talked with my dad out of respect (knowing that he probably would not remember at all). I just felt that it was the right thing to do. I was careful with my word selection. I talked frankly, acknowledging that his sexual feelings were normal, but that he had to know there was a correct place for him to do this. I did not shame him, but just kept it factual. I gave him private time to see if this would help. It did not and our conversation did not change his behavior.

I dressed him in elastic waisted pants and disposable briefs to make it difficult to reach his genitals. This did not work either.

I involved his MD, who examined him, and then gave him a low dose of an anti-depressant medicine. The behavior stopped.

Hope this helps.

My father was in the late stages of Alzheimer's and in the nursing home when he began seducing women there and using sexual language to the staff. He persuaded a woman to climb into bed with him one night. Why can't there be specific nursing homes devoted to this problem?

We were made to feel like he was a real problem and that we should be able to do something about it. I took him home, but he began falling regularly at home. We tried to get him placement, but no nursing home would take him. We spent an entire day in the emergency room being interviewed by different facilities. At the end of all this humiliating process and telling our story numerous times, a facility 40 miles away agreed to take him.

My mom seems to have a problem sometimes. My hubby will give her a hug as he always has. But occasionally she puts her hands where they shouldn't be. So hubby tries to avoid her… which confuses her when she wants that hug… Sometimes I am her sister, her neighbor, sometimes Bob's wife. But she knows [who I am]…usually. She never has been grabby before… Usually still isn't.

When he was first diagnosed a year ago, sex continued as we have modified thru the years. Urinary tract infectious, irregular sleeping patterns, lack of sleep made even desire disappear. He occasionally asks for comfort of sex, but for me, I am grieving for that sexual passion we use to have. I grieve for the man I use to be married to. I find it extremely hard to be caretaker and wife. Lately I have come to the decision it is time for me to be a wife and less a caretaker and turn his care over to a professional home health staff.

I love him but I must find the love that was in this relationship so I can feel close to him again! He looks the same and sometimes to me--keeping him safe is as sexual as we can be at this time. Dancing and music, movies, getting dressed up and doing things we use to do makes us able to be close. I am 70 and he 84. We talk about the past sexual experiences. Those memories are as sexual as we can be right now. He wants to be touched but right now the anger for the situation that I am in as RN-to-patient puts a wall between us.

I like holding hands and I want to comfort him but his compulsiveness, obsessive, sun downing, agitation that I deal with--I wonder where the husband hides. AND SO IT GOES.!! I strongly feel that finding "me" time is hard--he shadows me when I am with him at night. I moved out of the bedroom when he was up so much at night, snoring and the doctor ordered sleep for me--7-8. He resents these things that I have had to do in order to maintain my health.

Can I participate emotionally -no. I can not go thru personality changes from the urinary tract infectious that seem to be the out come. Then doctor visits and medications. I guess I fear the outcome of sex at this stage of the disease. Moderate into severe. Would he remember it in an hour or day? Touch, hugs, massage, music and memories the Alzheimer's patient needs! At this stage the Alzheimer's patient is focused on himself, just trying to hold himself together to maintain the independence he has. A response to this would be helpful. Do others experience this???

That does need to be addressed in more detail though it probably wouldn't make a difference to me. My wife and I quit having sex at least a year ago. She's not interested in taking care of me on any level. She's stage 5 but would probably know if I had a girlfriend. Oh well. I'm 62 and she's 61 so I guess it's time to knock it off anyway. :-/

My husband is diagnosed with Alzheimer's. I'd like to know if that's what made him not interested in sex anymore. He is 70 years and it has been about 10 years that he has not been interested in sex. Is that normal for him?

I am male 96 and still could enjoy sex and my wife is a beautiful 94 with AD. I am very much afraid that any stimulation could cause my having a heart attack. My respect as her caregiver where I am cleaning her in the normal day to day responsibility cannot be sexual. I believe that women are not and do not even dream sex in their nightmare of AD. I wish I could find out what they do dream as they do not remember.

Thanks for your great article and discussing the taboo and often embarrassing subject of sex. If you have another discussion, please include "masturbation." Something women in general do not understand and take offense that something is wrong with them. Thank you.


Advice for Rita: How to Respond to Dad When He Becomes Frustrated

I asked our community of caregivers to help me answer the following email from Rita:

So many of the caregivers I know say their loved one with Alzheimer's understands they have the disease as in the case with Lisa and her mom in your previous "chat." My father is 89 and was diagnosed about three years ago but showed signs about six years ago. He has always been adamant that "there is nothing wrong with him." When he failed the three-hour driving exam, he was devastated and repeated over and over that he has never had an accident and he could not understand why he could not drive.

My mom and I are his main caregivers. He has lost almost all of his independence and he will say to me while I button his shirt, "I just can't make it go like I did." This is just one example and it breaks my heart because I truly believe he does not know what is happening to him. His day consists of mostly sleeping and eating and he refuses to do anything we suggest to get him active.

Why is it that some patients with Alzheimer's understand their situation but Dad does not?

How can I respond to him when he becomes frustrated and sad because he is no longer able to do the things he once did?

Thank you so much for your time and help.

Rita

An overwhelming number of caregivers responded with their helpful advice. Read some of their responses below:

Rita, His dementia sounds like Lewy Body Dementia a bit....he can remember things from his earlier life. My husband who had LBD was that way. For comfort, tell him that you will always take care of him...that he took care of you and now it is your turn to take care of him. I told my husband that...it was so true, too...and I always believed it was of great comfort to him. He was an easy patient to mange and tried so hard to please, as always. He passed away May 1st last year. Make the most of this time with him..lots of love and attention.

- Louise

Try something different to change what you are doing. Try to keep his mind active as much as possible. Playing games like skip boo dominoes. You make have to ask him things like what comes after the number on this stack. Or suggest he plays that card on top of the other stack. But let him do it. Let him watch interactive things on tv or play games on a game console like Xbox. Or a gaming system. Keep him as active as possible. And when it nice outside take for an outing of possible. Even sitting outside is good for him. Include all members of family when possible

I believe that this is a time in their lives when we adopt the "lets do it together" concept When my mom gets frustrated, that's what I tell her. I say,"Mom this is about doing it together." I am blessed because currently my Dad and Mom are alive to help each other along the way and I fill in the blanks But that is how we get things done Hope this helps

- Lisa

i was very lucky with my husband...he was the one who told me he shouldn't be driving anymore after he drove to our daughters and forgot that he had...he was always a very calm, matter of fact guy, so he attacked his illness the same way...I think your attitude has alot to do with it...you need to assure your dad that it really doesn't matter if he can button his shirt or not...that you are there and enjoy helping him in any way that you can....my husband enjoyed music all his life and he still "lights up" when I play it...concentrate on the things that will make your dad happy...it's really hard to act "light" when you see him going down hill but its imperative that your mood stay up-beat....good luck!!!

I faced the same situation when my husband started to show signs of dementia, he kept saying it's all in my head there is nothing wrong with him this was in 2010. For no reason he started to loose weight, even though he ate like a horse. In 2012 I went with him to the specialist and he was diagnosed with early dementia. He refused to give up driving, I prayed every day when he left the house to go to work until he returned that he would not have an accident as he was also driving a co-worker to work. In January of 2013 the doctor took away his license, it was very hard for him, like Rita's father he would say I have been driving for close to 40 years and have never had an accident. I finally was able to get the car keys from him and had a friend take his car to the scrap yard. In March of 2013, I was called to his work and told to take him home. I knew sooner or later the day would come when he would need to give up work, it was very difficult as he had been working since he was 15 years old.

When he was diagnosed in 2012, I contacted the Alzheimer's society here in the city where we live and got information about a day program, I talked to him about it but he flatly refused. After he left work he stayed at home for about 3 months alone while I went to work, finally he got a spot in the day program, that was in June of 2013 and he is still going there. I work full time and is finding it very hard to take care of him. On January 16th 2015 he saw the specialist and the diagnosis was "full blown dementia" my husband is only 67 years old. I find the weekends are very hard as I am his sole care giver and I have health problems of my own. I have to take him with me every time I go out, these days I go mainly to church and the grocery stores. I bought the book "the 36 hour day" for caregivers, Rita and her mom may want to get a copy as there are some vary good tips for coping. I wish them both good luck.

Rita's question illustrates the frustrations of many of us caregivers. My wife was diagnosed about 3 years ago and she has stopped driving voluntarily, but still thinks she can cook, and do most of the things she used to do. The sad truth is she can't. I think it is more than they can wrap their mind around and is not a denial. They are just not able to process the reality of their situation, particularly as it worsens. It is difficult, but important, to avoid contradicting the patient because this usually results in hostile feedback. The only comfort I can get is to remember that it is the disease not the patient that is demonstrating. I am sure that he was more than willing to participate in activities before the disease reduced his mental capacity. One thing I have determined is that even if they really wanted to participate, they are paralyzed by the fear of appearing stupid, I think we all would be.

I cannot give any advice as I struggle with the same issue but worse. My husband similarly cannot do these things now, but obviously considers it a degrading intrusion for me to help him.

- Kathie

I usually just tell my Mama that she can't help it and she is just having a bad day and them we move on to something else. We don't dwell on what she can't do. We read to each other and play Bingo. Sometimes we say and play games right and sometimes it is hit and miss but we still laugh and have some fun together.

She is wheel chair and bed bound due to her severe osteoporosis and Alzheimer's Disease. She ask about her deceased family members almost everyday because they are on her mind. I just tell her they are all playing in heaven and she will see them again when she gets there when the Lord is ready for her. It isn't her time yet. Encouragement to do something even if it a coloring in a coloring book is doing something and they feel useful and needed.Her little great grandson takes a book and reads to her and shows her the pictures. He loves it and so does she.

Thanks for this sounding board. I love it.

- Dianna

This is a hard one to know just how to answer. My husband would ask me what is wrong and I would tell him the truth. The he would say "I don't need that Doc. Why do I have to go?" and my answer to him was "I need you to go for me so I can understand what is happening" and he would agree to go then. All I can say when he is in denial just go along with him to keep him happy and tell him you are the one that is there to help him and you are the one trying to understand what is going on... You always need to take the blame for anything that goes on and not argue with him. I argued with my husband before I studied a lot about this disease and now wish I had just not gotten mad and taken all the blame for everything that went on. Praying for you that you can find a way to help him. Each person is different.

Depending upon how much her dad can comprehend, when he's frustrated, she could explain to him that he has Alzheimer's but that she and her mom are there to help him and will stay with him. If he cannot comprehend that, she could try something simpler, like telling him that his doctor said he is having some problems with his brain right now and it's not his fault, and give him the same reassurances that they will be there to help him. I think one of the main things is to make sure he knows he's not doing anything wrong and that they will help him through it. Make sure he knows there are no expectations of him to do these things (e.g. getting his clothes on) correctly.

As far as exercise and remaining active, we had the same problem with my mom. It was especially bad in the winter when we didn't want her going outside. We got her to move by blowing up balloons and batting them around the room with her. Also, if there has ever been a physical therapist involved, maybe they could encourage him to do those exercises again, "just 10 times and we'll leave you alone!"

I hope that helps. Sometimes the easier the solution, the better it works.

- Nancy

I understand. My brother is 86. He fell and broke his right hip. Was in hospital a month. With his dementia, they couldn't get through to him that he couldn't put full weight on his right leg so they gave up on him. He is now in a nursing home, in a specialized, expensive wheelchair. They have to use a lift to get him from bed to chair, etc. He does not realize that he cannot walk and gets upset when he wants to go to the bathroom. When they tell him he isn't able to walk, he says he doesn't know why they are telling him that because he has been doing it right along. I think you are supposed to change the subject when you can't explain things to them.

- Louise

My mother is the same and has been in denial since 2006. Somewhere deep down she knows she has a problem and puts the denial in place so that she can survive. It is a technique people with dementia decide to invoke otherwise they cannot continue to live with it. Denial may well be something that applies to the older generation as there was (and still is) much stigma to having Alzheimer's and as people go back in time this becomes more pronounced. Go with it and agree.

- Jane

My dad has alzeihmers as well, when he asks why things are happening, I just tell him it's an age thing, it happens to all of us. He won't remember me telling him that, but appeases him for that time. When he asks why he does not have his license, I tell him they have to be renewed, once again he forgets about it and yet at that moment, he is happy. I really think that we have to live in the moment, try not to upset them and if we need to tell them lil fibs to keep them happy, then so be it. Their happiness ranks above all else.

- Brenda

Everyone with a dementia is unique. My Dad had vascular dementia. He went from a get it done man to can't do it. Focus on what he CAN do. Learn his strengths and encourage them. If he can put socks and shoes on let him and you do the buttons. Praise him but be careful not to patronize him. Encourage and love him as he is. Give hugs freely and listen. Dont tell him you understand...you can't you aren't in his place. Encourage him to express his feelings. Most of all enjoy him...each moment is precious even the heartbreakers.

Above all else..know you are not alone and you and your Mom take care of each other.

- Kelly

I also have a father with Alzheimer's. He is in the moderate stage. When dad gets angry about his disease it is difficult to reason with him. Just listening to him his helpful but painful to see. First of all remain calm yourself. Focus on his accomplishments and the things that make him happy. Does he have a hobby that he likes to talk about? Any family videos or photos that make him happy? Remain calm and take one day at a time. I take advantage of the times he is clear to explain things even though I know he will not remember.

I have worked with dementia for 30 years in my nursing career so I have seen a lot however, it is different when it is your family. When I teach facilities about dementia and challenging behaviors I use a tool that was given to me years ago by the Alzheimer's Association. "Five things that make me smile". Things that made someone happy in the past may still give them enjoyment through the memory. I hope you find this helpful.

- Sue

My husband also refuses to acknowledge he has Alz which makes it hard for him to follow doctors advice in keeping up activities. They don't use the word "alzheimer's" but refer to his "memory problems".

When I see him struggling with dressing or anything else, I will just offer to help. I think he is embarrassed to ask for help as he is giving up his independence. It is a very delicate situation to know when to jump in or give them the space to try to complete the task.

- Judy

In regards to getting him to do things, I always go in prepared. When taking dad out for a walk, I go in with his coat and hat in hand. Then he looks forward to going. Preparation and planning works miracles. One day I tried to get him in the shower, which is sometimes hard to do. I started the shower, put out clean clothes and told him that the shower is on and there is a new shower gel he will love, he went in right away! It's the lil things!

- Brenda

Hi Rita, I would tell my mom it was time for me to do things I could do for her. Perhaps you can relate the topic to an interest he has. For example, it sounds like cars can be used as an example of something that requires maintenance but still breaks down due to natural wear and tear.

In regards to activity. Does he like music? My mom passed away minutes after humming a tune she hummed often. She never remembered the words but bits and pieces of the tune were still there.

As long as your dad questions his mastery of once familiar daily activities; he is still thinking. You and your mom are amazing! Continue to reach out for assistance and laugh at the absurd that will occur. Laughter is potent medicine!

With kind regards,
- Minerva

Oh Rita, the lack of understanding is probably the hardest thing for those afflicted with Alzheimer's disease and for us to watch as our loved ones deteriorate. My husband sometimes looks up at me with those beautiful eyes and says, I can't do this any more and I just tell him it is okay just let me. Personally it is much easier for me to just do rather than to guide and suffer the consequences of his inabilities. I do not know what stage your loved one is in, but I have watched my husband have days when he knows that something is wrong with his mind and then there are days that he has no clue and tries to carry on as normal. My only suggestion for you is to make sure that they know they are loved. I have seen where people have said, they may not remember who we are, they may not remember what we have done, they may not remember what to do, but they will remember how we made them feel. I hope this is true.

Don't try to make him understand. I found out yesterday that my hubby's mental state is approximately equal to a child between the ages of 5-7 but that doesn't mean that I can treat him like a child. The one big difference between him and my 7 yr old granddaughter is the fact that she has the capacity to learn, her brain is still growing and developing; His is not it is on the opposite path.

So what to do, love him with all of your heart, do for him what he needs help with, but be sure to let him do what he can, and above all take care of yourself.

- Kathy

Alzheimers does not affect all victims the same way. I believe trying to help your father to understand what is happening to him at this point is fruitless and will cause fear and frustration for him and the family.

I am currently a full time care giver for a man who suffers from dementia, but not Alzheimer's. He suffers a total loss of short term memory as most ALz. patients do but his long term memory is pretty good. He is aware that his memory is poor and it is frustrating for him. One day he commented that he didn't understand what happened to make him this way and he didn't like it. I could have gone into a lengthy medically based explanation but chose to simply look at him and smile and say "no one knows why this is happening and no one understands it. I am just so happy that I can be here to help you when you need me". His response was perfect he simply said thank you.

Please take comfort in knowing that even though he does not understand and he is frustrated, he has an emotional attachment with you and your family that will sustain his acceptance of help from you all. While you are buttoning that shirt smile at him and tell him how glad you are to be there and how much you love him.

- Denise

I would sidetrack his thinking by saying how about if you help me fold some towels. The folding of the towels or some form of folding I have been told makes the person feel needed and part of the group whatever the group is. I don't know where you live however if the temp is good outside help with some gardening. You could even have a garden that is just for him and if it is destroyed by whatever means so what. He could even have a garden if he lives in an apt. granted it would be a different one.

My DH was the same way in the beginning. Now he has asked to have things simplified. Shirts stay buttoned except for the top two, elastic pants with a zipper, elastic shoelaces. Dishes with a lip on them, everything precut before serving, hankies already in pant pocket. I was lucky in that he gave up driving on his own with a little maneuvering on my part that he didn't realize. Hugs to you as you descend to the next rung on the ladder.

- Poco

I wish I could help but I am in a similar situation. My mom is 79 and she is adamant there is nothing wrong with her.

She sees the ALZ commercials and comments on how sad it is and she's glad she doesn't have it.

It is very frustrating. She will call herself stupid, everyone else is crazy not her, etc. So I would be interested in any comments back to help us, the caregivers, learn how to respond to our loved one with ALZ.

- Donna

My mom knew when she was diagnosed 3 years ago , however doesn't remember learning that now due to the disease obviously. She will say "They said I'm sick, I'm not sick" or insist that she can walk like she always has. She gets frustrated when she can't help me around the house.

The way I handle her being frustrated, or my own sadness that she can't understand or do things she use to, is by saying "mom, you worked hard for so many years, cleaning, cooking, (whatever the appropriate subject is). Now it's your time to relax and let someone else do it. You deserve to relax"

I agree with her that she's not "sick", and tell her that her brain is tired so she can't remember as well or do things the same as she use to. When she was sad that she use to have her own car and wishing she could still drive, I told her she deserved to have a driver chauffeur her around!

I try not to say "do you remember....." And instead just tell my mom things that went on or when discussing memories, etc... I'll say things like "every Sunday you made the best dinners for us when i was younger and cooked (fill in the blank)" to remind her of a dish she doesn't remember having made. I feel like asking a person that has Alzheimer's if they remember something, it makes them feel like they've failed if they don't remember it. I've seen my mom get a depressed look when someone says "do you remember" and she has to answer "no".

There's no perfect way to handle this and each individual will respond to different approaches, but I hope my message will help some.

Blessings,

- Diane, Daughter/Caregiver

I don't think I'd try to get him to understand he has Alzheimer's. I would just say "Dad, you're almost 90 years old! Nobody almost 90 yrs. old can do things they did at 70 or 80 yrs of age. You took care of us soooooo many yrs. Let us help you where it is difficult for you now." That is what works best with my husband, who is 86. He too has dementia. It is tough any way you look at it. My heart goes out to you! Laure'

- Lauren

I share your questions and frustrations. I visited a dear friend yesterday who is in the middle stage of Alzheimer's. She is no longer able to dial a phone number on her cell phone -- a simple 3-step process which she no longer can think through on her own. With tears in her eyes, she asked me, "Why is this so hard for me to do when it seems so simple?" I am no expert, but perhaps the difference is not in the "knowing" someone has of the difficulty in doing things he/she could once do. Rather, it may be in the "accepting" of it. Perhaps in the early stages, if one can accept the diagnosis and facts of future limitations, it may be easier to cope. Of course, that assumes the person has access to loving people who can explain what is happening in terms they can understand. Plus it assumes the person can accept the news and make the best of the time, while they can -- knowing that it will only get worse. Accepting this type of news is difficult under the best of circumstances, which may be why it is so hard for most people to do it. Just some thoughts.

Hi Rita

I'm no expert, but I do have a wife who has mild dementia and denial seems the rule of the day. For her to feel encouraged to do her best when awake, I have had to switch gears and enter into her world. That takes a lot of thought and prayer.

Like your husband she sleeps many hours and eats and watches TV. I used to frustrate myself trying to clue her in on the truth as I saw it or others see it, until I read Bob DeMarco's "Alzheimer's Reading Room" about entering into Alzheimer's World. You can say what you feel is the truth until you are blue in the face, and it only frustrates your husband as it does my wife. But the emotional message you are sending is that you don't want them or love them and that makes them insecure and reverberates back to you.

A gentle word of encouragement such as "I know honey" or "That's OK honey" and a hug goes much further to help them to forget the negative and move on faster, and they feel your love and it gives them peace. The better they sleep, the more they can do physically. It's not a perfect solution and one size does not fit all situations.

Seek out a local support of your Neurologist and see if your Neurologist can recommend a support group from a hospital or Senior Center or a local Church.

Full blown Alzheimer's is a serious illness which must be supervised by a doctor or specialist, and you may not be able to handle all situations by yourself. Help is needed and you are taking the right steps.

That's my best advice.

Regards,

- Ron the Care Giver

I work with the diagnosis and treatment of cognitive disorders like Alzheimer's on a daily basis. The lack of insight to ones own decline that Rita is describing is a very common symptom. The neurological term for it is Anosognosia. This symptom of AD is so common it is one of the principal areas that I educate families about when they receive a new diagnosis. This lack of insight means patients are rarely the ones seeking out treatment for their cognitive disorder (the family is usually dragging them in to be evaluated). The important thing for caregivers to understand is that this lack of insight is neurological and not due to lack of information or a communication issue.

Often I see caregivers who think "if I just explain things better or say the right words my loved one will "get it"". Really the solution is less talking and arguing, and more empathizing and redirection. As much as you can focus on you father's current abilities and accomplishments and avoiding triggering reminders of what he has lost the more content he will be. If you can help him move past a difficult moment it may not linger and impact his day in the same way seeing these changes in him impacts yours. This is where the memory loss can actually help.

- Liz

find the thing that he can still do well and let him do them over and over as many times in the day as he wants. I had an instance of my client being left handed and I being right handed and I told him each time he couldn't do something, and I could, that it was because he was left handed and I was right handed. This satisfied his thinking for a long time. God Bless you and keep loving him and complimenting his achievements not matter how simple they are.

I have the same issue with my dad. He has lost his license and blames me for it. He lives with me so this can be difficult to handle. I always agree with him that yes, this "sucks" and it isn't him, but the Alzheimer's that has caused this. I try to remind him that the State took away his license. I don't get upset or argue with him. Then, I try to change the subject. Sometimes I try to inject humor and get him laughing about something else.

Hope this helps!

- Tammie

I was compelled to respond to Rita's questions about her dad.

Like Rita's dad, my mom has never admitted she has a problem and doesn't realize she has Alzheimer's. My mom was diagnosed about 6 years ago and showed signs years prior to her diagnosis. When we tried to get her to the doctor to discuss her forgetfulness and other signs, she too would say nothing was wrong with her. When we would suggest Alzheimer's or any other ailment, she would get upset and say that my dad is just as forgetful as her. We do tell her sometimes that she has a disease and will just need our help with things, but we don't tell her she has Alzheimer's so that we don't get her agitated.

As my mom struggles with daily things, she gets upset that she can't do them. We try to tell her that everyone needs help doing things, especially as we get older. I try to explain to her that there are things that I can't do myself anymore, hoping that this helps her accept the help we give her.

Like Rita, my dad has tried to get my mom more active and involved in some type of activity to keep her busy. Her doctor wanted her to do some physical therapy for some leg pain, but she refused to do her exercises. In the end, we told dad that he couldn't make her do the exercises and that he was doing all he could to get her to do them and stay active. My mom used to love to work on puzzles, but even a simple puzzle is too difficult for her now. The only thing we have found that keeps my mom busy is she loves going through cook books and just looking at the recipes in the books. She can't cook or bake anymore, but she seems to enjoy just looking at the pictures of the recipe. That doesn't keep her physically active, but at least it keeps her busy and she enjoys it.

My mom can no longer cook, clean or do other things around the house that she used to do all the time. She stopped driving several years ago and my dad has taken her car keys from her just in case she would try to go somewhere. I know that Rita's dad has failed his driving test, but she may want to still remove or hide the car keys so that he won't go and drive anyway or forget that he doesn't have a driver's license. If he still fights her on the driving issue, I would also suggest getting a note from his doctor ordering him not to drive. Sometimes an Alzheimer's patient may listen to a non-family member, such as a trusted doctor, over his own family. And if he forgets that he isn't supposed to drive, you can always show him the Doctor's Order to not drive.

The only other advice I could give to Rita is to keep doing what she and her mother is doing for her dad. It's not easy and what works for one person, may not work for another. And what may work one day for her dad, may not work the next day to ease his worry. Try finding things your dad can still do and hopefully he will feel better about the things he can do for himself than what he can't do for himself. Maybe even look into getting shirts without buttons (ie snaps, Velcro or even pull over shirts) if it will be something he can still do without help. This might make him feel less dependent on his family.

Good luck and God Bless!

- Trish

Vi's Alzheimer's Love Poem


A member of our Remember for Alzheimer's Facebook community, Dmitrius, told us about a moving moment his grandfather Jerry had. Jerry was going through some old notepads and found a poem that his wife, Vi, must have written five or six years ago during the beginning stages of her dementia. This was the poem she wrote:

Jerry,

Do not ask me to remember
Don't try to make me understand
Let me rest and know you're with me
Kiss my cheek and hold my hand

I'm confused beyond your concept
I'm sad and sick and lost
All I know is that I need you 
To be with me at all cost

Don't lose your patience with me
Do not scold or curse or cry
I can't help the way I'm acting
I can't be different though I try

Just remember that I need you
That the best of me is gone
Please don't fail to stand beside me
Love me till my life is gone

Vi

As Dmitrius said, this was a "must-share" because moments like this make life worth living.

But that's not the end of the story.

Judging from the comments Dmitrius' post received from folks who know his grandparents, Jerry has honored his wife's request. He has stayed close by Vi's side and takes very good care of her.

What a beautiful expression of love! Feel free to share Vi's poem with all your loved ones.

Warm regards,
Cat Koehler
livechat@homeinstead.com


Is there anything good about Alzheimer's?

I'm sorry Cat, I don't agree with you. My mom has Alzheimer's and has been in assisted living for 5 yrs now, as a matter of fact I'm going to spend the day with her today which I do 1 and sometimes 2 times a week. She knows she knows me, but she doesn't know how she knows me, which is very hard to handle at times. I am an only child, a widow and my father has been gone for 17 yrs, so I'm all alone to deal with this. When people ask me how she is doing with the expectation that I'm going to say she's getting better makes me want to scream!!! My aunt (my dad's sister) asks me that question every week, DON'T PEOPLE GET IT???? THERE'S NO CURE YET!!!!

This is how I see it I already lost my mom whom I was very close to and that is hard and when she passes I'll loose her again. Which makes it not fair, not only to the person but to the family members that have to go through this. So I find it difficult to find the good side of the cloud of this disease. I feel ostracized because of this demon disease.

Sorry to unload but this is where I'm coming from through all of this. Thanks for listening!

- Kathy

The silver lining I have found in the case of my 2 sisters who are suffering dementia is this. When really bad things happen like a death in the family, they don't seem to be effected by it. Maybe for a moment while you are talking to them but then it is forgotten. I have found a blessing in this.

Thank you.

- Patti

Caring for my dad who has dementia does have its special moments. He can no longer deal with medicinal schedules etc so he needs me here all the time but he can still tell stories of his youth and I'm learning things about him and how he grew up that I never would have had the opportunity to had I not come home to care for him.

- Marc

I just got message from you all about trying to look at the glass half full I'm sorry to say seems to me my glass is always dark and hopeless. My Mom has PD and Dementia--what stage or whatever I do not know because 4 years ago I was told to bring her home for her to get ready to pass away. I have been taking care of her for 14 years. Past 4 very intense and STRESSED not to even touch on my personal needs or husband who was told last year he has stage 3 Melanoma cancer. Have been with my Mom ever since married ,so trust me, I'm getting so sad being torn apart between the two. I'm not so healthy myself but wont even go there. Back to my Mom, she is now bedridden, been in bed for 4years now and the only thing I can say that I'm proud of is SHE HAS NO SORES. I'M NOT ONE OF THOSE PEOPLE THAT FEEL GOOD DUE TO TAKING CARE OF MOM, not that you shouldn't, I just don't.

Caregiving day by day and night by night has given me sadness, depression, a hopeless worthless feeling like nothing but a mop, no contact with people ever since I told people Mom gets confused. No one HONESTLY NO ONE THAT WAS SUPPOSE TO BE A FRIEND TO HER CALLS OR STOPS BY NOT EVEN ONCE A YEAR. They have made me feel like mom and I have a contagious disease-- don't go near them. I had father passed from lung cancer and 1 brother who was found dead in garage. So hard since I HAD a good happy childhood that my family life is like this. To all of you that take care of loved ones, friend, whoever it is, I know its very hard but I like to say to those who do God Bless you and if you do feel good for that keep yourself feeling like that. Have a good day. Thank you for reading

- Sandy

Hi Cat. As you know, this is stressful business. I feel like I have gone from the favored daughter, having had a great relationship with mom especially all of my adult life to the enemy who makes sure she gets her meds, changes her clothes…..

- Lynne

There are rare moments when I have seen bright spots in the lives of people I have helped take care of who have Alzheimer's. These moments help sustain me through the many challenges of care giving.

One is when a man somehow remembered it was his wife's birthday when there had been times when he couldn't remember her name or who she was exactly, and he and I sang Happy Birthday together to her. She had been dedicated to taking care of him for several years as well as their disabled son and was turning 80. He died less than a month after that.

I have observed several people with Alzheimer's really light up with joy when a small child talks to them. They seem to be in the same world with young children.

One of my Home Instead clients with Alzheimer's who was in an assisted care home generally was very belligerent toward me, but one day she took me to the dining room and "ordered" cocoa and toast for us as if she were in a restaurant and spoke to me warmly and happily about her family and her past.

- Judy

Yes, I am a very contemplative person who is always looking for ways God is working in our lives. My mother had dementia and passed after a lengthy illness in July of this year. I felt very close to her my entire life, but felt like a mother bird to her for the two years prior to her death. It began with a TIA for which I expected she would fully recover. That was not to be. She stayed on AL care for a while, then went home for a few months with help at home, then 4 hospital stays, then a decline, then back to skilled nursing home care, then AL, then back home (much to my dismay). The last stay home lasted only a few weeks. She fell in the bathroom, broke her shoulder and back to the hospital ER, surgery, nursing home again, bed sore, C-Diff, CVA and that was the end. I know it challenged me as a daughter, a Christian and, at times, I thought I would have a nervous breakdown. But God has done the ultimate healing for her- she had a smile on her face as she left this world!

Then, there was Dad. He did not do well by himself after Mom went to the AL a couple of years ago. He lost tons of weight and one cold February day in 2012, I found him weak, confused and helpless at home. I called 911 and he started his journey along with my Mon down the Alzheimer dementia road. He is still with us, though. And through his decline over the past two years, I have felt blessed to draw closer to my Dad. With the Alzheimer's, he has mellowed out, he laughs with staff, teases and makes good eye contact with me for the first time in my life. He had always been difficult to talk to (at least I thought so). I had always been a little afraid to ask him questions because sometimes he wasn't too kind in his responses. Its amazing that my unmet needs as a child are now being met through a connection with him I've never had before. I feel at ease to touch him, hug him and kiss him.

My silver lining is that I feel I can now relate well to other caregivers because of my experiences with my own parents. I can feel their pain and understand what they are going through in many ways. My greatest gift is a closer connection with my Dad that I never felt I had growing up and as an adult. My next prayer and hope is a closer connection with my sister who has been estranged much of the time all of this was going on. I'm hoping she, too, will feel that connection with Dad before he is gone forever and regret begins to show its ugly head.

Thanks!

- Carol

The silver lining of my mother's alzheimers was that I was able to spend more time with her. I was her caregiver - she lived with my husband and I and before the disease totally took hold of her, I was able to take her on some trips and holidays and just reconnect with her. And make wonderful memories that will stay with me for the rest of my life. And that is precious and priceless to me.

At the end of the day... I'm so worn out and think I'm not able to do another thing. After I put my mom to bed I say to her goodnight I love you and sleep good:) and she says the same to me :) and I think I hope I have many many many more of these nights to be so tired and be able to hear my mom say goodnight to me I love you and sleep good and then I go down to my room and finish up what's needed done for that day and get ready for bed after I sit and think and relax for a minute then go to bed myself and get up a few more times during the night just to make sure my mom is fine some nights I think I will not wake up to check on her for being so tired but I always do and she is always fine thank god every minute of the day she's here for me to get tired each day :)

I hope and wish that my wife's Dementia has brought us closer together. It hasn't, in fact she blames me for her present limitations, she just weeps, complains, hits me and does little in my opinion to help herself. While I realize that this behavior is all disease inspired it has become increasingly hard for me to not feel anger, disgust and resentment. I have become a full time caregiver to a stranger who looks like my wife but has become an angry disgruntled stranger. Her mom, 93 years old, lives close by and my wife visits with her every day. Thank heavens for that as it gives me a break. I know this is going to end up in my wife going to a 24 hour program. I grieve over that one minute and wish for it the next. I wish the hope and closer button would be pushed. I am ready for it.

Hello Kat -
and thank you for the email and messages; good timing of course, as this time of the year can really be more difficult....

My sister in Ontario has been diagnosed with early Alz and since I can't be there (I live in BC) and dont understand a lot about the disease, I have volunteered with the local BC Alzheimers Society here to help with one of their programs offered – and I picked up a number of brochures and articles about this condition to help me understand better, so I feel this is the least I can do to be supportive!

I am generally a positive living optimist, but do experience those other days too, so I appreciated your kind words today.

Thanks!

- Joan

Yes, Good does come out of caring for our loved ones in their infirmities, whether it be physical or mental. My Hubby & I took care of his Mom for about 16 1/2 years. She had a stroke in 1997 at age 76 1/2. This was a woman who for the previous 12 years had been an in home care giver herself to people who were totally incapacitated or bedridden. Now she was in a hospital bed, seeing herself as though she was 'done for'.

Talking with the hospital personnel, we managed to have her evaluated for depression, so that she could use the hospital's special unit that was designed for regulating patient's medical needs before moving towards further intense rehabilitation from the stroke. I think it was important to find what would help her mentally to have a more positive outlook on her current life condition. It did not take much for her. By the time she was able to come home and actually live with us, she was more ambulatory, more talkative, more involved, more with it.

The stroke itself had damaged her ability to be able to make new short term memories. She could still access her own old memories, and be involved with what was currently being decided upon, she just would not be able to quickly pick up on new things or quickly remember what was just transpiring a few minutes ago. She was very trusting with us, which was a good thing. However she was able to tell us IF we were doing something out of context or out of order for her. That was a good thing. For to her, things that must be, must be. Having a few set patterns helped to keep things running smoothly. If something was going to need to be different from the usual, then we talked about it first, so that whatever was thought to be a 'must be' could be easily dealt with and changed and understood & expected to be something different.

Over the years, the learning to be a conscientious care taker of Mom, has taught us how to handle many other situations in life. Such as take a moment to look over everything, discuss what needs to be different, then follow through with it, comfortably, without causing any undue upsets. That is a process that works on many fronts and many issues in life. When we need to do something differently, just Pause, Think, Discuss or Explain it, & then Do.

Keep in mind that the elderly are mostly living in the NOW moment. They may occasionally lock onto or fixate on an old memory, but even that 'old memory' is their 'NOW' thought.

- LVKDRA

I think that while it did bring some of her children together, it created a greater distance between those helping and those unable to help. And the non helpers had valid reasons but they were still left out of the process.

I was her caregiver from 9 July 2013 thru 31 March 2014 - she is still living but was with family friends 1 April 2014 - early October 2014 and is now with one of the previously non helping children who does NOTHING to communicate with the rest of us. She went to visit and elected to stay on with our friends because the doctor had advised she needed more care than I could give and she is terrified of a "nursing home" even tho' it is very nice and 7 tenths of a mile from my home. Then the wife was injured and had to spend a week in the hospital (and will be months recovering) so mom panicked and bought a car for a previously non helping child to come get her before the stable children could get to her to help. Geography was against us. The first thing my youngest brother did was to drive her to her property so she could get the title to sign her 4 wheeler over to him. With her SS income his income has more than doubled but none of us expect it to last. The best we can do is believe she is not in danger due to the money she brings in to the household. Her property is safe, another brother purchased it in 2006 and pays her a mortgage payment as well as a large sum upfront at the time of sale.

The major change for me is that I will NOT fight my children when they want to send me to a care facility. I would NEVER want to put them thru the hell I experienced living with and caring for someone that resembled my mother less with each passing day. She had no hobbies beyond reading and she could no longer follow a story line though she could still read. I don't know if she can now. She was never a warm, caring person and dementia brought out the worst in her. Often she thought I was her cousin (Aunt Teddy) even though she called me by my name. My mom was adopted, I do NOT resemble my "Aunt Teddy" who is a year older than my mom.

My oldest brother was with our father when he died from diabetic complications and his major shift is that he wants to die quickly, a broken neck from a fall down the stairs, as opposed to the slow lingering death our father experienced. Whenever I worried about mom's safety he would repeat that he would rather she go quickly in an accident than linger and suffer. Our father had remarried and lived on the east coast, as did my brother, so no others of us were involved in his care. His wife had him cremated and interred 3 days later so none of us were able to be there except 2 of my brothers,and one of them arrived as the service began. Dad's dementia seemed to be from depression/ despair, he gave up. My stepmother was in tears because "I never supposed Wayne wasn't a fighter" and I had to tell her that all my life it things didn't go his way, he walked away. He had a temper but that does not a fighter make...

This whole experience is devastating. I did, and still do, appreciate your newsletter. It helped me a lot. From the beginning I knew I wasn't the one to care for her but I was the only one who could. My youngest brother was stealing her pain meds (which we could not prove but his wife admitted later when I cut off his supply by becoming caregiver and he started taking HER meds) and her money. When I balanced her checkbook and there were large checks to him, he draws SSI, she would say, oh he needed money... We accept he will bankrupt her but she will never know and she will be happy that she is "helping" him. She was 43 when he was born...

Thank you for all you do to encourage and uplift.

Every moment of every day, I try to find something positive while I am being a part time caregiver to my mom and dad. I think when I look back on these years of dealing w/ a mom w/ Alzheimer's and a dad w/ vascular dementia that I will have no regrets for the sacrifices I have made, but I don't think I will consider it a good time of my life or a positive experience at all. Maybe my cup is half empty because I am so tired. Maybe it is because it is a gloomy day… All I know is that I am grateful for my faith. Without faith, I would have been done a long time ago.

Ah my Dearest Cat,

My wife of 56, almost 57 years is in the 6th stage of Alzheimer's and each day I count my blessings that she is still with me and for our wonderful children.

Indeed our family have grown closer out of need.

From my side my love has grown stronger and having her at home is a gift that I am thankful for. As corny as it sounds my goal now is to live one day longer than her, Jan whom I met when we were both 17. The delay was the result of my four years of service during the Korean War we did not marry until 25, January 1958.

All best Cat!

- Robert

Dear Ms. Koehler:

Thank you so much for your newsletter which has helped me tremendously and that I look forward to reading always.

There are four siblings left in my family. I am my mom's sole Caregiver, as I am the one who lives here in NYC. One of my sisters and her husband helps me out financially. The other sister cannot. My brother use to be available, but now he is not.

My mother has 12 hour care and although VNS offered her 24 hour care – it was with the stipulation that because my mother has dementia and alzheimers and cannot care for herself – that the Home Attendant still COULD NOT administer her insulin in the mornings. [I would have to come over and administer the insulin] I opted to simply take the 12 hour care for mom. I currently spend about $1500-$2,000 monthly on her care as I work from 4-11pm and need someone from 8-11pm. Additionally, I pay someone to sleep overnight when I am exhausted and that costs me about $90.00 per night.

I tell mom constantly: It is my pleasure to take care of you mom. I don't care if she remembers me 'sometimes' or 'other' times. I don't care if she wakes up I the morning and says: "Who are you"? I usually say "I'm your daughter" and she will say "Oh, well that's nice".

I'm okay with the forgetfulness and although mom tries to "cover it up" – she too is trying – I know that just by being with her empowers me to know I am doing the best I can for her care. I have stepped up to the plate – and it is not so hard when you love someone so much – especially a sweet little 87 year old lady that you just want to squeeze forever.

I make sure I take care of mama – cuz mama took care of me. God give me the strength to keep on going.

have been married to my English bride for 71 years. I TREASURE EVERY MOMENT TO BE WITH HER AND TO KISS AND CONSOLE WHEN SHE ASKS 'AM I GOING TO DIE'. This is my moment of panic as I envision my reaction when that occurs.

My battle is my own and I do not see any value in togetherness as people come do their short stuff and leave while we as caregivers continue our virgule. Holidays especially Christmas with families with their own families is the most unhappy time of the year. Please forget about me I am just an instrument that we all accept, a caregiver. Stay healthy dad.

My mom has been battling with this disease - she lives with me. Her whole personality has changed from sweet to sometimes mean. She always listened to me, when it was med time, or anything just simple. But, now it has become very stressful for me as her caretaker to be patient. I love her so much, I don't want to place her in a home. But, I don't know what to expect on a daily basis at this time and it scares me. I have so many things on my plate at the present time, and I am so thankful that I have an understanding husband. I don't know what to do when she refuses to take her meds, or listen to me at all.

Hi there, I'm Warren. My mother lives in Ontario and I live in B.C. Despite the distance. between; my 2 older brothers' and sister-in-laws have been able, through pictures and my occasional visit, to let me be better prepared for the demise of 'mum', now 95. She has reached the final stage ' all the lights are out and no one is home' phase of Alzhiemers' Disease. The dementia started as early as 1998 and progressed quickly.

Recently, I visited home for a quick visit, to see my siblings and 'mum'. Despite pictures and verbal descriptions and a visit 3 years before, the lack of quality of life mum, now faces made it the hardest to witness. As an active golfer and bowler right to her 80 th birthday, I had hope she would have had more happy times.

I know the medications keep her stable, but considering her systems are starting to break down, restrained in a wheel chair [ seat-belt and shoulder belt]...I am reminded of many peoples' pets' that would get more humane care / and would end suffering of a pet [also with no way of communicating]; than those that brought us into this life. As for a silver lining, I have to say there seems little to glow about. I do play Santa Claus in this festive season and often meet women of my mothers' age, and cherish 'their' company and good humor to make my 'events' more personally 'fun'!

- Warren


Do you feel people look down on dementia sufferers?

I am the Alzheimer's Association Facilitator for a Caregiver Support Group in Land O' Lakes area. We meet every first Wednesday of the month at the Land O' Lakes Library at 11:00 a.m. We often talk about the embarrassment caregivers can feel when their loved ones say or do something inappropriate while out in public. When my own mother and aunt were alive and had been diagnosed with Alzheimer's, when I took them out to dinner I too felt embarrassment, along with guilt of course, because I knew that they could not help their behavior. I recommend that caregivers/family members carry cards that they can hand out to folks that states "My companion has dementia...Please be kind."

I am the Alzheimer's Association Facilitator Our loved ones deserve to go out to dinner, or for a walk in the mall...They don't deserve negative feedback. Such a card may stop folks from staring, and therefore from hurting the feelings of sick people who do not deserve it.

- Phyllis

Yes, I have had people say to me, "Exercise is supposed to help." John has always been active and even now, is in good physical health. I know people mean well, but they should not jump to conclusions.

- Betsy

I'm not sure it's "looking down upon". I would say it's more of a withdrawal reaction to my husband's dementia. The word "Alzheimer's" is frightening to someone not knowing what he may do. People do not treat me any differently, however. Health-wise, my husband is probably healthier than I am. He sleeps many more hours and eats balanced meals. Problem: he hates to exercise--even walking only happens when coerced.

I work with people with dementia. While not everyone looks down on people with dementia, there are definitely some who do. I have heard them say "it is because of their lifestyle/diet/ never stimulated their brains/lack of exercise." I have heard some say they brought it on themselves. Many others, though, while not necessarily 'looking down' on people with dementia, have no clue on how to relate to those with dementia, are uncomfortable in their presence and thus come across as looking down on them. And families can be embarrassed by the parent's behaviour or inappropriate words etc and thus isolate the person with dementia.

Many people are selfish and unless it happens to their family or friends they really don't take mind. We live in a world where many people take pride in being judgmental and act if it is their job to make and say an opinion. Awareness is key and you are a part of that solution. Are there any studies that show a relationship of drug and alcohol addiction to dementia? thank you.

Unquestionably--and I agree with Peggy that the various reports on ways to live healthy and reduce risk only add to it. My husband has younger-onset Alzheimer's, first noticeably symptomatic at just 59 years old. He is a lifetime non-smoker, light drinker (most red wine), and dedicated walker/hiker. All his life, he has eaten a healthy (basically Mediterranean) diet and maintained an average weight--on the thinner side, in fact. There is NOTHING that he did to bring about his current state of ill health. Much to the contrary, he did everything possible to maintain good health. Other than Alzheimer's disease (and slightly high blood pressure, which is treated with medication), he is the picture of health. Sadly, this may result in his living for many years in a cognitive state that severely compromises the quality of his life.

Awhile back, we were watching an episode of Dr. Oz, in which the good doctor was explaining different ways to reduce risk of dementia. My husband took such offense from it that he refuses to watch the show even today.

I see his point. He did everything right--and wound up with everything wrong.

Alzheimer's is enough of a nightmare without anybody inferring that sufferers somehow are deserving of their own misery.

- Donna

I have had many years of experience with members of my family who suffered from dementia/Alzheimer.s First I gave conflicting definition of both and it would be great to get a definition of both if possible.

My parental grand-parents both suffered from Alzheimer and that is was they called it back then as well as my maternal grandmother, my father and now my mother.

My dad was in a nursing home for one year to the day and he had many medical issues but my mom was a vibrant woman never stopped. She walked daily she was very social and now she has been in a nursing home since Feb 2014. She was at camp by herself til Aug 2013 and almost overnight she was experiencing many forgetful moments. When she first went into the nursing home she was using a walker now and for about 2-3 months she no longer has the ability to work so if confined to a wheelchair.

There is a family member who visits her every night but she is at the stage where she is afraid when we leave for the night, she is more confused and yet she can remember moments from the past. We find that there is not enough activities in the evening for the residents and try to get more but of course the government doesn't give the nursing homes enough funds.

So I cannot say that we have experienced any negativity regarding mom have Alzheimer but rather people from our community are very supportive. I just wish the Nursing home would have more activities for the residents to keep motivated and active.

Thanks

Where we live in central Fl there is a large adult community. They go to the stores, shops and restaurants close by. They have their golf carts and go all over.

My husband has Alzheimer's, Parkinson's disease and other concerns. No one has looked at my husband any differently. His tremors have caused kids to look at him but no adult has treated or looked at him differently.

Even when we go into town no only looks down at him. In fact they treat him with care and compassion. They open the doors for him, pull carts out for him at the stores.

So my answer is no, people are not looking down at my husband because he has dementia.

-Nonia

Absolutely no. I am my 92 year old Mothers caretaker . She has advanced Alzheimer's, but everyone is so kind and understanding.

Yes. And I agree with the person who wrote in. Lifestyle can only decrease the damage a small percentage in a large population. Maybe a disclaimer should accompany these articles. Nothing my mother did or didn't do caused her dementia or made it worse. She lived to age 94 in overall very good health. The prejudice came from the other women in her residence facilities. This age group is heartless.

I don't feel that they look down on my husband or me...in contrast I find people very supportive and sympathetic

– Rosalie

Historically, mental illness -- especially depression -- was stigmatized because it was viewed as a character defect and/or moral failing. That is now decreasing, though hardly eliminated in our society, as the biological etiology of psychiatric illnesses has come to light.

Similarly with dementia, once viewed as a category of mental illness, which is increasingly seen by the public as a medical condition/disease.

The growing incidence of dementia has also forced people to acknowledge that it must be more than a personal weakness or moral failing. We don't stigmatize (usually) patients with cancer or lupus or diabetes, and that's now true of Alzheimer's, at least among the well-educated folks in my circle.

My 89 y.o. mother with moderately advanced (and progressing) dementia was a highly successful, accomplished, recognized and beloved educator in the community. As far as I can tell, no one attaches ANY stigma to her condition -- rather just sadness, regret, sympathy that her life is ending in a way that is so at odds with the life of intellect and engagement she used to lead.

Regards,
Bruce

In my case as the caregiver I get the sympathy not the patient my wife. Poor Norman is what I hear. My wife was a runner and jumped the hurdles in her youth, French speaking from living in France and now does not understand the language. She has trouble transferring plus dementia but I am able to cope. Her main topic I do not want to fall. We have been married over 70 years.

- Norman

I don't know if it's looking down on, but avoidance is a reality. I think the disease makes most people uncomfortable. In general, if a person has no history of contact with a loved one with dementia, there is very little knowledge or understanding of the disease. I'm only fully aware because I'm caring for a loved one and have done much research.

I have found that friends/family distance themselves from diseases they don't understand and from those that may not rember them or memories that they should have in common.

At 84, 85 our geriatric dr. Says our bodies just outlive our minds. It is like they are now the child and the caretaker is the mama or papa.

I do not know if it is looked down upon--but there is a difference once others know he has Dementia--friends stop calling--visits stop--family that does not understand stays away! Call it what you will--our whole life has changed!

I am not hesitant to talk about my husband's dementia, and I find others to be concerned and understanding; so many know someone with the disease, so it's not like a rarity anymore. Perhaps when someone has a drug or alcohol addiction, they may be looked down upon for perhaps contributing to the problem, but with AD, it seems that intelligent, health-conscious, fun-loving and educated folks are struck down with it, and they didn't contribute to this in any way. My husband was a nonsmoker, drank a little wine (Italian fellow!) did a lot of activity and always planned to live to be 100.

He's 81 now and in a nursing home, having began noticeable symptoms about 15 years ago, at age 65, but he has quite a few family members who have passed away with AD, his sister, and a few cousins. It's so sad to see him, wheel-chair bound, getting stiffer, unable to talk, combative at times, but still able to smile every now and then, roll his eyes, squeeze my hand and share a kiss. No, no one would knowingly denigrate such unfortunate people or their families.

- Louise

I think people are afraid of dementia sufferers because they don't know how to act or converse with them. also if they are close to someone with dementia there is the grief that they try to escape by staying away.

But I think Peggy has a good point that too much emphasis on "preventive measures" can make people believe that "they brought it on themselves". Also can encourage people to drive themselves into taking "preventive measures" that are motivated by fear instead of just a healthy desire to be healthy. We also need to be educated in the art of coping with whatever life hands us and seeing the humor in difficult situations. Dementia gives both the patient and the caregiver great opportunities for personal growth. Humor and thankfulness for what we have instead of grief or anger over what we do not have are essential qualities for coping--and I think are not being taught much in our culture.

- Maridine

My husband was the epitome of what to do to keep from getting Alzheimer's!! He ate right, biked or ran everyday, and watched his weight! He also worked on computers and read before bed at least an hour every night! In fact he was healthy enough that his doctor was in denial for a long time!!!!

This is a dreadful disease! What is worse is when people don't realize the situation and give him odd looks and are mean to him if he tries to talk to them! He has always been a very caring person and today that is manifested in talking to everyone! I miss who he used to be but still love who he is!!!

It's like any other disease, they don't know what to say or how to communicate with someone with dementia. What can you say to a dementia patient. It's awkward situation. I see it all the time with my Mother who lives with me. She has had several strokes also which make communication difficult. People don't want to be around her. I am her daughter. All I can do is give love and comfort, and wait for her to say something to me.

- Becky

Haven't noticed this but after the initial short conversation the speaker usually turns to me or others that do not have this disease for reassurance that they are saying the right things and they often feel awkward or embarrassed particularly if the sufferer is not understood.

My mother developed dementia as a result of a stroke at the age of 90. Because of her healthy lifestyle and my feeding her lots of fresh fruits and vegetables and fiber, she lived to the age of 94 in great physical health. My brother even let her cut a small bit of grass in her yard the year before she died. She always loved to cut the grass.

I don't think they really understand what is happening to that person. Luckily I live in a community where everyone is aware of my husband's Alzheimer's and they treat him with kindness and respect. They are not fully aware of what is happening to him because they only see him at social events but my true friends understand and try to help me out as much as they can.

I find that once they know that person has dementia they tend to try to be nicer to the person. They are always try to help me with my husband.

Definitely! And I am so upset that people in the health care field can be the worst offenders! They need to include sensitivity training regarding ALZ to their entire staff. They often mistake direction from the care giving spouse as "being bossy"......I have left many an office in tears but no more! Now I tell them exactly what is going on and why I am being "bossy"! I would love to trade places with them if they so desire.

Yes I do . People seem to think that others with dementia should be kept at home and not taken out in public. My husband is only 71 and still enjoys being around others.

- Sandy

Yes. At first the family was telling friends my husband has Alzheimer's and we were met with a lot of pity especially odd from those I had not talked to about it. When his MRI show no signs nor markers of Alzheimer's, it felt like a cloud was lifted. Though he has vascular dementia and seems to have an occasional TIA, just being able to say that is different from the A word.

I guess I have been very fortunate, I have had sympathy and empathy when I tell them about my mom. She is at the moderate Alzheimer's stage. Some people don't believe, they actually still believe the myth that all people get forgetful when they get old. Luckily her doctor was responsive when I went with her. I had asked her several times if she told him all her symptoms, but by the time she got to his office, she would say she was fine and felt fine. Be militarily trained, I had taken notes and went back in with her and gave him a litany of her symptoms. Now he had a clearer picture of her health, it's been a slight declining. She is wheelchair bound now. I'm grateful she never learned to drive, and she doesn't try to go outside. The sad part is many of her family members have shunned her, rarely visiting or calling her. The "GOOD" thing, if there can be a good thing to Alzheimer's is that those that don't take part of her life now are wiped from her memory. She has asked me who is that young man over there, (her sons, and her grandsons).

- Mary Lou

Funny, when I read this article, I thought of my sister. She had the nerve to state after our Momma went to be with Jesus, that she (Momma) brought Alzheimer's on by choice. I was dumbfounded! I said nothing to her in response because I was so much in shock that she even thought that! The facility that I chose was rated as 'gold seal' care level, but in the end, I think the demise was attributed to mishandling of my Momma while they turned her in bed.

I was Momma's medical surrogate and I lived in Florida where my parents lived, while my brother and sister and their families both live in Texas. I witnessed her decline over a 10-year period and it broke my heart every day until that day when she breathed her last breath and was freed from the decaying body that she had been imprisoned in during that stretch of time. I so much appreciate anyone that serves to inform others about the effects of Alzheimer's on the patient AND on the family. Thank you for your advocacy on their behalf. I've asked the Lord to bless your organization.

Yes, I do believe that those with memory issues are 'taken for granted' and also sometimes rejected by family members who cannot endure the path that the disease leads those who suffer from a mental deterioration. Once verbal communication ends, many people don't take the time to find other forms of communication with the dementia patient. My father even said, "when she no longer recognizes me, I'll stop going to see her". I aggressively told him that he needed to keep visiting her, she needed to not be forgotten by family. I could go on, but I have other things I have to get to right now.

I truly appreciate all you do.

- Amy

Not so much, but a lot of my friends are nurses and know better. Another thing that upsets me is that a lot of folks believe it's hereditary. Both my parents died of Alz but I never saw any of it among my four grandparents, aunts, uncles, great aunts, etc. None. Because both my parents worked at the university with radiation, I believe that was the primary cause. My father worked around particle accelerators (cyclotrons) for 30 years, wore a dosimeter badge and occasionally overdosed and wasn't allowed in their proximity for periods of time. My mother worked in a chem lab and DID receive an award from the Department of Energy which agreed that her colon cancer which onset at age 78 was caused by radiation. BTW, that was $187,000 of your tax dollars. Anyway, I believe that living well -- and my parents were total (common sense) health food freaks LONG before it was fashionable (because my mother's advanced degree was in nutrition) does NOT protect you if there are other risk factors.

So, you might want to take on the hereditary thing. Sometimes people look at me and I think they're thinking I'll get it too and seem to feel sorry for me. I'm 65, Dad would be 100 if he were alive today but died 7 years ago, and mom is 94 but I expect she will pass fairly soon.

Thanks for caring.

- Carolyn

If 2/3 of dementia sufferers are women - how can personal responsibility possibly play a part in developing this affliction?

Some people probably do look down on dementia sufferers, just as with any type of mental illness. It seems easier to accept other illness' that are not directly related to the mind. My mother also led a healthy lifestyle and does not suffer from other physical symptoms at 76 other than dementia. Sometimes she feels she does not need to be in a care facility because as she puts it," I am not in a wheelchair and don't need a walker." It's hard to know what to say to her when she starts that kind of talk. Also, I face the issue of people not understanding why she can't live with me in my household.

Along with the dementia you have a lot of "baggage" from the past that seems to just intensify with the dementia. I would never tell someone what to do in my situation because everyone's situation is different and the dementia effects people differently. It's very complicated and there is so much that no one really understands, even the healthcare providers.

- Peggy

I don't feel they look down on sufferers, but we have lived the purest, simple lifestyle and it didn't prevent my husband from getting Alzheimer's. I think heredity plays a major role in it.

There is a strange ostracism that began occurring for my mother and me years before she was diagnosed with Alzheimer's Disease which I can only surmise was because adult women are expected to be seen at public events with their husbands, boyfriends, peers, etc. – not their aging mothers. I had coworkers who found it strange that I included her occasionally in my activities. Our culture has a largely undiscussed notion that the elderly are somehow separate from, and different from, the rest of society and that they are best kept out of the mainstream. "Honor thy mother and father" seems fine in the abstract but those of us who actually practice it can experience mixed messages.

With Alzheimer's Disease and my mother's advanced age (she will be 101 this November) the problem has become worse. Last September my mother and I were flooded out of our house by a washing machine that continued to fill all day while I was at work and she was at daycare. We lived in a local hotel room for two months during the restoration and repair. There was a small breakfast eating area in the lobby where I fed my mother breakfast and it occurred to me over our stay there that it would have been an excellent laboratory for a sociology major. Although a few guests greeted us both pleasantly, many spoke only to me, ignoring my mother as if she were not present or they would look at us and say nothing at all, even more uncomfortable. My mother, a beautiful woman who can still turn heads, was always in her wheelchair, well dressed and carefully groomed and mostly silent. The feeding process takes a very long time and requires verbal, loving encouragement from me. I spoke softly, not wanting to interrupt newspaper readers and morning TV watchers in the café.

Even so, some people were clearly ill at ease. Frequently, conversation in the café came to a complete stop when we entered, people stared fixedly at their plates, laps or newspapers and left quickly. On at least two occasions, people sitting at the table next to ours got up and moved to the other side of the café. Since there was plenty of space for us to get to the table without disrupting anyone I could not think of any particular reason for them to move except some personal discomfort with caregiving. Fortunately, the hotel staff were kind and loving and friendly and expressed their admiration for us.

I still take my mother out to musical events and occasionally to author programs at a local bookstore. The staff are generally cordial and helpful in finding us a good spot but we experience glares and distancing attitudes from some members of the public. I have wondered if they think that taking my very old mother out in public is somehow abusing her – that she should be in bed in a nursing home. Or if it reminds them of their own future, or of past decisions regarding caregiving that trigger memories that in turn trigger guilt. I simply don't know.

I do know that this has been and continues to be a very real phenomenon in our lives. I don't let it stop me from taking her out but I go braced for disapproval from total strangers. I only hope my mother is not aware of it and that if she is, it doesn't bother her.

A longtime friend of mine just suddenly stopped inviting me/us out anywhere when I took on my mother's care. She lives close by and sends a card once in awhile. I keep in touch with my mother's friends for her and they are always glad to hear about her and praise me for my commitment to her. But they do not initiate contact or inquire about her on their own and no one comes to visit. They are aging, too, and I surmise that her dementia is a terrifying reminder.

Our culture simply has not matured or gentled when it comes to our elders, a frightening prospect when so many of us are growing older.

- Margaret

Yes

- Mary Beth

Yes!!! This is huge.

My mom is still very smart. Dementia has claimed her memory but she can reason in the moment and retains how she feels about people and events. She has accomplished more in her lifetime than most do in ten and yet she has been treated very badly by some people and is dismissed as inconsequential by many. It breaks my heart.

My mother has dementia and lives in a senior high rise, she is never alone. It gets me very upset when we are walking to get her mail in the lobby and when she isn't looking a person will look at me and put a finger in the air next to his head, Twirling it in circles, like signaling that she is crazy. I looked at him very seriously, and quietly said, NO, she is ill! I wish people wouldn't act that way, we caregivers who love them are already hurting because we can't help with a cure it doesn't help having them act so ignorant!

People who know my husband witnessed the health lifestyle that he leads. So there is sadness, confusion, and a how is that possible questioning. There is a helpless feeling from the younger population that is thinking the question, Will that be me at 83?

I think they do in a way towards those tat have Alzheimer's. there is so much out there about doing puzzles and mind stimulating things; that they forget that it isn't just at the end of life stimulation can effect the individual. It is a whole lot of factors including inheritance. There is also the belief that INHERITED ALZHEIMERS IS only for those that get it when they are older ( 0ver 65).

My mother was extremely active all of her live and was always very conscious of diet , exercise and interactions with others. Bit puzzles were never her thing. She was a math wiz until she got ALZHEIMERS. And that was one of the first things that went at age 89. I think a comment she made about 6 months ago to my uncle( he was an engineer), ( who ALSO has Alzheimer's, (not related) neither of them know they have it and each for a different reason they have it) "that we are just living too long;" is part of the difficulties. We have done many wonderful things to extend life but very little to make that extended time to be quality of time.

My mom is 93 years now and I am at a lost as to how to keep her stimulated at this point. She is in a memory care unit(and they really only give them the best physical care they can. Stimulation and other types of activities is certainly not there strong point.) But she is happy and pretty healthy otherwise. She had back pain in the past and it went away when the Alzheimer's came along. THANK GOODNESS for that.

It is a dilemma we as a society have to face. It is not an easy disease for anyone especially the families that have to watch through a hundred deaths the deterioration of their loved one. I am certainly not one that wants to end life early; just stating facts that we as a society are now facing.

Hi...

I'm looking after my Dad with developing dementia.

I fear he looks down on himself for having dementia... gets embarrassed whenever he can't remember an old friends name... And because of that... He is getting less and less social.

Any suggestions?

yes people do. but that part about care for ones self I don't believe. my mom was one of the cleanest people on the earth. she took good care of her self and many others. she had gotten sick and then started getting dementia at about 68 it hit her hard and fast she past away at 72 about 4 months after putting her in a place. that was very hard to do put her in a place. but when she would call me and tell me that I was in her car and wouldn't get out I had no choice plus she got very violent. mostly toward me.


Book Recommendations from Alzheimer's Caregivers

Learning to Speak Alzheimer's by Joanne Koenig Coste
"Her instructions to live in the care patient's world, to not try to orient them to the reality the caregiver knows, have made for a still-happy husband with advanced Alzheimer's and our still-happy marriage." - Jenny

Thanks! by Robert A. Emmons, Ph.D.
"On how the science of gratitude can make you happier. I recommend this to caregivers." - Teri

The Five Secrets You Must Discover Before You Die by Joanne Koenig Coste
"This book reminds me to listen to our clients who share their experience." - Teri

Creating Moments of Joy by Jolene Brackey
"It's an easy read and has great ideas that I have utilized with my Mom." - Marsha

Taking Flight by Adrian R. Magnuson
"A good read and bittersweet fictional story of a man with Alzheimer's and a young adolescent boy." - Pat

Stuck in the Middle by Barbara McVicker
Before Things Fall Apart by Barbara McVicker
Never Say Die by Susan Jocoby
From Surviving to Thriving by Dr. Amy D'Aprix
When the Time Comes by Paula Span
The 36-Hour Day by Nancy Mace and Peter Rabins
How to Say it to Seniors by David Solie
The Best Friends Approach by Virginia Bell and David Troxel
- Marilyn

Bring Back the Fun by Marcie Jones
"This book is written from the perspective of a person with dementia…and is based on what I learned as a caregiver for my grandma as well as what we've learned as caregivers in our adult day program. It's a fun, quick read for family caregivers and offers lots of ideas for bringing the fun back into their lives." - Marcie

The 36-Hour Day by Nancy Mace and Peter Rabins
"This book doesn't need to be read entirely at once, but chapter by chapter covering the problem needing to be solved at that time."
- Syl

Singing in the Rain – Weathering the Storm of Dementia with Humor, Love, and Patience by Vicky Ruppert and Ann Henderberg
"Great book." - Al


How to Create Special Moments

A few weeks ago, I told you about a wedding ceremony that a dementia care facility in Iowa holds regularly for its residents — for no other reason than to bring them joy.

In response, many of you wrote in to share about the special moments you create to bring joy to your loved one with Alzheimer's disease or other dementias. Thank you for sharing!

I wanted to pass those ideas along to the rest of our readers, so here they are, below. Enjoy!
–Cat Koehler

"I create special moments with my loved one by listening to the music of her era, her favorite artists and we sing and dance together. This is done at family gatherings as well." –Jo

Things I do with my fabulous Mom are:

  • Go shopping, just for her
  • Take her to a play, example: Les Miserables ( she loved it)
  • Would like to take her to Il Divo, but we missed them in May
  • Make a beautiful meal for just the 2 of us, and purchase fake red wine, candles, etc.
  • I also bought her an iPod, and put all her old favorites on it, and a couple of books
  • This winter we're going to go to the city pool and take a water exercise class
  • Go to the market and bring home all the fresh vegetables, and eat them together
  • She also likes to get her fingernails and toenails manicured so we do this every 2 weeks.
  • She loves getting her hair done, and will not let it go Grey, so we take her to have this done once every 4/5 weeks
  • We went to Dairy Queen yesterday and had a great waffle cone ice cream
  • I bought her a special clock that just has the day and date, in big letters

As you can see I'll do anything for her, even shave her legs, rub her feet, she loves that. I even answer all her questions, over and over again, without making her feel that she just asked it a second ago.

Today I gave her a facial, and I always make sure she has makeup on and looks well dressed.

Not exactly along the lines of a wedding memory, but here is what we recently did for my mother who was in the advanced stages of dementia. She was at a stage where she was somewhat agitated & restless, seeming to recognize she needed to do something & that she should be helping with the house, but unsure what it was and not able to focus on anything that had many steps. So we looked at what was a familiar memory for her that she could maybe latch onto. And we were always prompt with thanking her for her help when she finished.

We came up with 3 things:

  1. She loved fresh laundry and folding it so we made a basket of hand towels, socks and washcloths for her to fold and put back into the basket. She would fold the pile, we would carry it into the other room and "put them away" by unfolding them all for later when she could again help with folding the laundry. They were not folded perfectly but that really wasn't the point; she felt like she had helped and was pleased.
  2. We had a hand push sweeper like the ones restaurants have to sweep around the tables. Asking her if she could help with sweeping would keep her busy for a half hour or more vacuuming. She had been an obsessive housekeeper -- white gloves used to check dusting almost -- so that memory clicked and she seemed to feel a sense of accomplishment again.
  3. And the last is a bit unconventional, but she had worked her entire life in a factory manufacturing zippers. One of her jobs had been as an inspector. So we got her a basket of zippers - all ones she had saved from clothes that wore out, etc. and asked her if she could help us by inspecting them. She would work at it for an hour carefully inspecting each zipper, stacking them in neat piles like they had at work and then stacking them neatly into the basket. There was a broken one in the mix -she always had it to the side as failing inspection. If you watched her you could see she was doing it just exactly like she had for all those years at work. It was a familiar memory to her hands even when her mind had trouble.

All 3 tasks seemed to give her pleasure - she was non-verbal pretty much at that point and struggled with dressing and eating, but those things she knew how to do and seemed to give her a little bit of control and dignity back. She has since passed away - we can only hope that they gave her a little pleasure at a time where she was still trying to connect with us on some level. -Janet G.


Honoring Our Veterans

This is my dad. He suffered with Alzheimer's/dementia for nine years and on March 27, 2014 he left this cruel disease behind him and went home to be with our heavenly father. I just finished reading the story of the lady who is caring for her mother who has this disease, and I could see my dad in this story. It was a battle to get him to change his clothes and get cleaned up for the day and for bedtime at night. Life shouldn't have to be like that. There was no hope that things would get better. It was pretty much always the same. After the battles were over he was ok, as in calmer. I wished so many times I could go inside his head and find out what was going on in there. I would see him direct planes when we were outside like he did in the Navy and point to the sky. There were people telling him what to do and he would reach for things that weren't there. Mom would go behind and put throw rugs back down because he would move them out of the way. I read that someone with this disease thinks they are holes in the floor, so I believe this was the reasoning behind this. He got to a point that he stopped eating and drinking for the most part and became dehydrated. He went into the hospital for a week to get him stabilized. Once he came home he did ok for about three weeks and then he made a very steady decline in one week and passed away a month after coming home.

I love my dad and I miss him dearly. I would give anything to have him back, even if it was the way that he was. I would take that, but I know if he knew what he was doing to us it would rip his heart out. I know he wouldn't want to come back like that. He is happy now and disease free and I know one day I'll see him again.


I have been married to Earl for 23 years.

He was diagnosed with Alzheimer's about 6 years ago. He participated in a study at Bay Pines Medical Center in Florida where they gave him different tests and recorded his decline. When the study was over, he was still in the early stages of the disease. It is just this year that his decline has accelerated, and he becomes very confused with everyday living.

I must answer the same questions 100 times a day. He still recognizes that he can't remember things and it upsets him.

It is very difficult to watch his decline. He was a CPA and very intelligent. He can't even add or subtract simple numbers now.

I find myself getting angry and then regretting it instantly. I am fighting my own health problems and am tired all the time. Luckily he still sleeps pretty well at night and I am able to get a full night's sleep most of the time.

I want to keep him at home as long as I can because I think they do better in familiar surroundings. I know that I will have to find some help in caring for him in the near future.

Janet


I am a 26-year veteran of the Navy, retired in 2003 taking care of my husband who is also a six-year veteran of the USMC. I realized John had a memory problem the year I was retiring. He has Frontal Temporal Dementia. It affects memory, speech and gait. I felt like the Lord was giving us a few good years to travel and enjoy each other. By 2008 John had a manic spell and was quite wild, outgoing and willing to try anything and say anything. After about a year he went back to his quiet, gentle personality. Now he needs my help with everything 24/7.

I am his gym partner/trainer, cook, chauffer, personal attendant for shower, dressing, tying shoes. He does not remember how to use the toilet so each time I take him into the bathroom and hope he does not fight me getting him positioned in front of the toilet. He does not remember how to sit so I push on his shoulders. Often he is afraid and I need to reassure him its ok and I won't hurt him. He sits then panics and wants me right there. He cannot understand it is OK to have a BM. It's scary for him. He goes and thinks he is finished but then stands up then goes on the seat and floor and toilet. At least he has not stepped in it.

I put him down for a nap in the living room. We had to move onto the first floor for John's safety. I had to put a safety lock on the cellar door. It's like having a toddler to keep safe. He falls asleep and I have a little time to myself. I take my kayak out on the pond, so peaceful. I'm only gone 45 min., but John woke up to use the bathroom. Pants are off and in the tub, socks are wet, and urine surrounds the toilet. He tried but just can't remember how to use a toilet. I reassure him it's OK, get him and the floor cleaned up and John redressed. John is back for a nap and I go out to plant some seeds and mow the lawn. I get back before he wakes up.

Note: I must get a monitor so I can be outside and hear him when he stirs.

So often I resent the interruptions, get impatient, and get so tired, especially when I need to get up at night 4-5 times at night. Now he is mumbling and I am having a hard time understanding what he wants. This happens often. I can usually guess. Oh, when can we have sex again? Tomorrow is a gym day, Sat. morning is OK. He is like a happy kid looking forward to a prize. Is it easy continuing to be a lover to a spouse who wears depends and has accidents? No, but it is one of the things he still enjoys and looks forward too. I won't take away the one thing he still does pretty well. Some things we do just out of love.

Our family does not live close by and John's son seldom calls. It makes me sad but I try to manage what I can control and not spend energy on those things I can't control. In the end it takes lots of patience, lots of love and someone to talk to, friends to see. My faith and God with me everyday is my strength because some days are good and John and I laugh a lot while other days I am discouraged and just pray for the strength to survive the day.

Sharyn


Good evening!!!! I'm sorry if my English is not perfect. I'm a born Canadian, but I have lived in Mexico since I was 4 years old and I don't practice it much.

My father lives here in Toronto and I try to visit him once or twice a year.

I'll tell you a little about his story.

He was born in Austria (Jochberg, Tirol) in 1929 (he turned 85 years old this past 2nd of May). He was in the 2nd World War. He arrived to Canada more or less about 60 years ago, with his brother Helmut (5 years younger than he is) and became Canadians. He went to Mexico with his best friend called Nick Hansen for vacations and he met my mother in Acapulco. He loved that country. They married, came to live to Canada and after a few years decided to move to Mexico (after I was born).

After 9 years of marriage, they split, but still were good friends. He lived in Mexico until 16 years ago more or less, because he wanted to come back to Canada to arrange his old age pension. When he came back, he arrived to Nick's house and they arranged that my dad pays him his part of the rent and other expenses. Helmut (his brother) also was living there. Everything was well organized.

Since 2001 I started to come almost once a year to visit, but in those days, everything was still fine with him. He used to go to Mexico also every year and spend 6 months there and 6 months here (avoiding the winter and cold weather). He used to rent a house in Cuernavaca (the town where I live) from a good friend of his.

More or less around 2008, while he was visiting Cuernavaca, one day he told me: "You know what happened to me yesterday evening? I was washing the dinner dishes and when I was finished, I walked to the dining room and I got very dizzy. I had to lean on the table ar

KARLA


Are people suffering from Alzheimer's really suffering, or are they just as happy as anyone else?

I'm humbled by how many of you wrote back to share your thoughts and your heart. Thank you.

For some of those who responded, the answer was obvious. For others, there's no easy answer, at least not a cut-and-dry one. You just take it day by day, moment by moment, and try to care for your loved one as best you can.

Below are a few responses I received that describe what these caregivers believe their loved ones are really feeling. While I can't always include every single response I receive, please know that I read every one.

Whether or not our loved ones with dementia experience some level of suffering, we ought to take Doris' advice to heart:

"Respect, dignity and love are what we all deserve at all times."

That means striving to do what will bring the most amount of respect, dignity and love to your loved one and to you as the caregiver.

Some things you can control. Some things you can't. Save your energy to focus on only those things that you can control that may help maximize your loved one's contentment and quality of life. For example, I encourage you to visit the dementia support network to learn about care techniques that can help minimize your loved one's aggression and anger, agitation and anxiety, or other mood changes.

As one of our friends said, "In this disease, knowledge is powerful. Understanding how to care for the person is paramount…love, patience, understanding, and humor is all part of helping them." Hearing from all of you helps me to better understand the disease and gives me a better perspective. Let me know if it helps you: livechat@homeinstead.com.

All the best,
Cat Koehler

Caregiver Responses:

"I think there is suffering. My mom has mild dementia and suffered a mild stroke that leaves her in a wheelchair. She is in skilled nursing, as we cannot care for her at home. She screams whenever a nurse touches her. She absolutely hates someone taking her to the bathroom and bathing her. She cries when she sees me. She tells me she wants to go home all the time. Yes, I definitely think there is some suffering, maybe not physical, but most likely emotional."

"I wholeheartedly believe that our loved ones with Alzheimer's suffer and feel happy and get frustrated and feel all of the same emotions that they have always felt. My mother had a ten-year battle with this disease. We kept her at home and she was so much more content than many I have known with the same condition. That is not to say that she did not at times have her moments of frustration, anxiety, grief, bewilderment, anger, fear, desperation. She experienced all of those, but not to the extent and degree I have seen in others. I believe in my heart it is because she was in familiar surroundings that even though she may not have always recognized she felt safe and secure in. She knew the scents of the place, she knew the noises of the place, she knew somehow that she was home."

"I think it's both: sometimes my mom is terrified and upset, and other times she's smiling and joking and seems blissfully unaware of her condition."

"For the last 8 years, I have been my father's primary caregiver. I do have some help during the day because I also work a full time job. I can tell you from experience that people with dementia feel the entire range of fear, anxiety, frustration, and anger. But they can also be happy. It took me a few years to get the hang of this, but through educating myself about the disease and learning how to deal with my father, we are in a really good place."

"I am lucky; my mother is one of the blissfully happy people with AD. I have asked repeatedly if she is bothered by not remembering and she could not care less."

"My mother lives with Alz dementia. She lives with me and is still able to communicate her feelings about her situation. She says it is awful, she knows what she wants to say, but is unable to articulate her thought which is very frustrating. She is also discouraged with her loss of motor skills and it makes her want to cry often. She has also had many moments of muted joy when she is around positive people…Unfortunately, most of the emotions my mom shows are feelings of sadness & helplessness. She still recognizes her losses. The key to our moments of joy is to stay positive and not try too hard."

"I believe that many are deeply affected emotionally by their experience. My husband certainly is…We would have moments of peace and actual fun, but they did not last long and soon he was back in his grumpiness, anger and telling me how unfair it was that this was happening to him and that I was an awful person to let it be this way. Even though I don't refer to his disease in his presence, except to say words of comfort when he expresses his sadness or discomfort with how things are. Then I acknowledge he is hurting and try to assure him that I am here for him, that I love him and will walk the road with him. He said to me the other day, in his halting and limited way (Lack of ability to form complete sentences now) "Why is this…" "Why do I have to….". I finished the first sentence with "….happening?" and he said a resounding "Yes". The second one was harder: I finished with "….be here?" The answer was another strong "Yes."

"My mom suffers daily. There is no doubt that she is completely aware of what is happening to her. This is my third trip down this road, and I think each one has been different. But this time it's the saddest, and most heartbreaking."

"Yes, of course they suffer. It's the only disease that you know how will end when you get the diagnosis. They know it will take their memories, their familiar interactions with family, friends and all the other loved ones before they die. Yes, they can be at peace, too. Put yourself (as much as you can) in their shoes and their (and your) life will be better. God bless all you caregivers."

"There is no single answer to this question—as with any other aspect of human experience. People respond differently to environmental inputs and stressors; plus dementia is a progressive disease so that awareness, powers of self-observation, and emotional range are continuously evolving.

My observation is that different aspects of brain functioning become "unplugged" or scrambled, and not in a predictable or linear fashion. Further, some Alzheimer's patients have more compliant styles or personalities or are more or less comfortable or trusting of others (caretakers, strangers).

All these factors affect "quality of life," fearfulness, "suffering," etc. That's why caretaking needs to be individualized and constantly adjusted as the patient/client changes (or deteriorates)."

"If you have helped someone live with this disease you know the answer to this question. My first reaction to this question was outrage: How dare someone ask this stupid question? But after some thought, I realized that there are people that need to hear the answer. We need to get all the info out about the disease that we can. In this disease knowledge is powerful; understanding how to care for the person is paramount. Helping the person to live with it is most important. Love, patience, understanding, and humor, are all a part of helping them."


Exchange Practical Advice and Experiences

While following along on last week's live chat with Dr. Amy and reading the transcript, it occurred to me how "raw" caregiving can be at times, and how adaptable caregivers become.

Not that it's easy, of course, but we adapt because we have to. We get creative, like Sandra who is trying a variety ways to deal with the fact that her father has started using the heating register as a urinal in the night. Or Sue, who's doing her best to avoid putting her dad in a full-time care facility and was hoping Dr. Amy had suggestions for countering his resistance to adult day care.

The chats are great for exchanging practical advice and experiences, such as one participant's success with putting a male urinal in her husband's bedroom, and Dr. Amy's suggestion that Sue make her dad feel he's needed at the day care center. But the chats, and the Remember for Alzheimer's Facebook community, are also a chance to be reminded that you're not alone in dealing with things that never would have occurred to you a few years ago. As one poster on the Facebook page said "All we ask for is respect and someone to talk to us." He could have been speaking of the Alzheimer's patient or of the caregiver; this statement is true either way. And it's amazing how just a few lines exchanged with someone who understands our struggles can lift us up a little, whether we know that person or not.

The next live chat will be on Wednesday August 14 at 5:00 pm Eastern time, when David Troxel will offer advice on Activities to Engage Loved Ones with Alzheimer's and Other Dementias. And don't forget, during each live chat five attendees are selected at random to each win a caregiver package. It includes a deck of 52 Caring Cards to help spur meaningful conversations seniors; a copy of the book Stages of Senior Care: Your Step-by-Step Guide to Making the Best Decisions by Paul and Lori Hogan; a copy of Lori's inspirational book for caregivers, Strength for the Moment; and a life journal , which can be a valuable resource to help you handle challenging behaviors.

So please join the live chat with your questions, or with advice for others based on your caregiving experiences. If you can't make the live chat, you can read all the chat transcripts in the chat archive on the Help for Alzheimer's Families website. Either way, the chats are a great way to get, and give, support for some of the tough situations that define caring for someone with dementia.

Sincerely,
Cat Koehler


The Snake in the Dishwasher

My mother saw a snake in the dishwasher, where the glasses are supposed to go. At least she thought she did, so she slammed the door shut, set it on its hottest setting and "cooked the sucker." Afterward she couldn't figure out how it had escaped! This happened a few years ago while I was visiting my parents who lived in a remote area of Northern Wisconsin. Both of them were in their mid-80s and Mom was starting to repeat herself a lot and forget things, but hadn't been diagnosed with anything. Dad, who was mentally very sharp but had other serious health issues, chose to explain away her "fuzziness" and accepted her snake encounter as fact.

They were fiercely independent and, even though all of us "kids" lived in other states, getting them to accept any sort of paid help was nearly impossible at this stage. They refused to even consider the idea of moving into town, never mind a retirement or assisted living facility. Mom often declared that the only way she was leaving her cozy house on the lake was feet-first!

Anyway, nobody else saw the dishwasher snake, but to this day I'm not 100% sure she was hallucinating. There had been the occasional snake in the house before. Dad, who hated snakes to begin with, once used his wheelchair and a long "grabber" tool to keep one cornered in the dining room until Mom came back from the mailbox at the end of the road. Never a shrinking violet, she grabbed that snake with the tool and threw it into the nearby woods.

So maybe there really was a snake in the dishwasher. Or maybe it was one more sign that something wasn't right—like the fact that a woman known for her cooking gradually lost all interest in food. She used to whip together a full meal so fast Rachel Ray would have been impressed, but in those last years she'd sit down in front of the television half-way through making dinner and forget that they hadn't eaten. Dad would snack and pretend it was no big deal, in part because Mom got angry so easily. He kept quiet and both of them started losing weight.

I had read about the signs of dementia because of my acquaintance with Cat and Home Instead, and it scared me to death. That was before the family caregiver Alzheimer's training or the live chats with Dr. Amy and David Troxel. But I shared other Home Instead resources with my sister and brothers, hoping we'd be more ready to deal with things as Mom's symptoms worsened. We were determined to, somehow, care for her as she had cared for the five of us her entire life.

As it turned out, we never got the chance. On her 88th birthday Mom was diagnosed with liver cancer and a few short weeks later she was gone. As I read the comments on these live chat reflections, I think of my parents and how fortunate we were that Mom didn't have to suffer through years of increasing dementia. It sounds horrible to say "thank God it was 'only' cancer," but that's how our family felt when it was over relatively quickly. It was how Mom wanted it, almost. She stayed in her home with the sparkling lake view up until the last week, when she was in the kind and capable hands of the local hospice. As my brother said, Mom had friends and family who loved and honored her through 88 good years, and one bad month.

My heart goes out to all of you daughters and sons, husbands and wives who are doing your very best to care for a declining loved one year after year. I hope you will take some comfort from the supportive community that has grown more than 200,000 strong on the Remember for Alzheimer's Facebook page. And reach out for help from Dr. Amy, David Troxel, and the folks at Home Instead. They're good people who really do care and are working hard to provide you with resources to help you carry the weight that's been placed on your shoulders.

As the musician Bob Marley once said, "You never know how strong you are, until being strong is your only choice."

Stay strong,
- Lisa Bradshaw


"Love them. Remember who they were. Agree with them, even if they are seeing things that you don't see. Sing to them. Love them. Pray for them. Love them. Remember all the things they once did for you. Love them. Be patient. Give hugs. Look into their eyes, even when it pains you to see their eyes! Really love them! Be with them as much as possible. Talk about past times that you shared. Don't feel sorry for yourself. Take breaks. Love them. I lost my Dad to Alzheimer's on April 30, 2004. Look for God's blessings in the days before your loved one leaves you for eternity. God blessed Daddy and me amazingly in the week before he suddenly was gone!"

- C.P., Remember for Alzheimer's Facebook page

This is just one of hundreds of comments posted nearly every day by members of our Remember for Alzheimer's Facebook Community. It is a really valuable resource, full of supportive friends and family going through this most difficult period in their lives.

Join our Facebook community today, and I think you'll be glad you did.

Last week, we had a terrific live chat with David Troxel about "Bedtime Struggles". Based upon the hundreds of comments we received on the Facebook page about this topic, it's probably something you've encountered as well. Here are some of the tips from this live chat. For information about upcoming live chats, make sure to check our Facebook page.

Most dementias in older persons are slow to develop. Alzheimer's disease, the leading cause of dementia, progresses over many years.

Late-stage dementia is tough on everyone. The person with dementia may be fully incontinent, need help with eating, have difficulty walking, no longer be able to communicate, and almost certainly requires significant care. Families grieve their loss, particularly if the person no longer recognizes close friends and relatives.

How can you help someone during this part of life's journey? Dementia expert David Troxel, who worked with the Home Instead Senior Care® network to develop its Alzheimer's and Other Dementias Training Program, recommends these approaches:

Always approach persons with late-stage dementia with dignity. Never talk about them in their presence as though they aren't there. Encourage caregivers to keep them well groomed, neatly dressed and clean.

Provide a reassuring touch. A gentle shoulder massage, hand rub, or friendly hug creates that needed human connection and shows the person he or she is valued.

Enjoy music. Music and song lyrics are stored in a different part of the brain from speech. Many individuals with late-stage dementia respond to beautiful music. They may even be able to sing an old familiar song. Music brings happiness and joy.

Manage pain. Most persons with late-stage dementia are not able to let you know in words that they are in pain. If the person cries out, grimaces when touched, or shows other signs of pain, talk to your medical provider about appropriate medications. Watch for skin tears or bruises. Consult with a physical therapist about chair exercises or other simple stretches that can help keep them limber.

Consider a visit from a friendly cat or dog. Animals give unconditional love and the late-stage person will often take great joy from the wet nose or kiss of a dog. A cat in the lap provides an opportunity to pet the cat and enjoy its soothing purr. While it is always important to treat the person as an adult, some individuals in this stage do take comfort from holding a soft teddy bear (or substitute a baby doll).

Go outside. When possible, take the person outside to get some fresh air and sunshine, and to experience the beauty of nature. Use a wheelchair if needed. Going outside is sensory, spiritual and life-affirming. The person will likely enjoy feeling the sun's warmth and seeing flowers, birds, and neighborhood children.

Take care of yourself. Seek out a support group or counselor to share your feelings of loss and obtain necessary support. Try to make time to exercise, eat well and spend time with family and friends.

Take a break. When you need a break, consider a professional caregiver who is trained in all stages of dementia care. "My goal was to get one smile an hour, but guess what? I often ended up with two or three," Angela G., a Home Instead CAREGiverSM said about her experience with a late-stage person. "He seemed to understand some of my silly jokes. I enjoyed my time with him and I hope he enjoyed his time with me too."

Take advantage of hospice care. Hospice offers wonderful services for home-bound individuals in the late stages of dementia, including assistance with nursing and medication, help with bathing, all-important respite, and spiritual support for the patient and his or her family.

Remember, the most important thing you can do during this part of life's journey is to make sure the person with dementia knows the love and warmth of family and friends, and for you, the caregiver, to enjoy the special moments when they happen. Be sure to focus on taking care of yourself or you won't be able to do either.

If you have strategies you've used in the past that have worked and you would like to share those with our community or would like to request a transcript from this live chat, please email us today.

Get moral support and Alzheimer's resources in your Facebook feed by liking Remember for Alzheimer's on Facebook.


My Story

Cat asked me recently to share my experience and what caregiving meant to me. At first, I was really hesitant. I wasn't sure what I could add to the conversation you have been having, but she encouraged me that just sharing from the heart; the good, bad and ugly is what this journey is all about.

If it helps even one person, I'm glad to share.

My caregiving experience isn't the typical 24/7 type of caregiving that many of you live. When I was younger, my grandmother and I weren't all that close. She spent time on the weekends and at Christmas and Easter with us, and we saw her on special occasions.

I best remember her house for everything that was breakable in it, and for everything we couldn't touch. Well, to be fair, the thing I really remember about her house growing up was her Redskins- themed basement. Pillows, upholstery, wall coverings, memorabilia…Redskins.

After a series of knee surgeries, she moved closer to the family leaving her friends and neighbors. It was much more difficult on her than anyone imagined. She had a tough time adjusting to the new community.

Slowly, what started as a little help replacing light bulbs and moving furniture, turned into weekly visits and runs to the store. And the more we spent time together, the more I discovered someone vastly more complex and interesting than I knew growing up. She was actually a heck of a lot more interesting than even her Redskins room (which for lifelong Redskins fans may be hard to believe, I know).

She told me stories about growing up in DC in the 30's, about the nightclubs, the dates she went on to soda shops, the family life down at the shore. She told me about her heartaches and even about the gossip they used to have about the girls at the office including a young girl named Jacqueline Bouvier (long before she was known as "Jackie Kennedy").

It wasn't long though before her lack of mobility (since the last knee surgery she had lost the ability to get around) changed the spry woman I had come to know and love. She was now facing a much more difficult struggle.

Her struggle lasted much longer than I imagined. I thought many times that she was going to pass, only to come back seemingly stronger than before. After a while though, the barrage of medications, tranquilizers, pain medication and anesthesia seemed to take its toll on her mind, and she began to suffer from paranoia and forgetfulness.

Was it dementia? I never knew.

The doctors didn't either, and frankly, they never seemed like they were in too much of a hurry to find out. They had seen it too many times. It was sad. I don't know if it was sadder because of the loss of the grandmother I loved, or because the doctors treated her demise as some kind of commodity, something that happens all the time.

That makes me sad.

Don't get me wrong. I understand, and I forgive them, but I don't want this time I spent with my grandmother, this precious time of discovery, to be just another "patient", just another fading memory.

It's my grandmother, and I'm just getting to know her after 35 years.

I dreaded this for a long time. Dreaded seeing my grandmother immobilized, forgetful.

But suddenly, I found that while this was by no means easy, I wouldn't give this time back for anything. For the first time, it was my chance to give something back, to say thank you. It mattered.

That's the crazy thing. Could you ever have a time in life that is so densely packed with meaning and opportunity to know someone deeply than at this time? And yet at the same time, be so filled with suffering. Every day was a new revelation. One day, it was about a man she had loved and lost. Another, it was a fear she had for her son. We spent time reading from the Bible, praying together, chatting with the priest about Ireland. At one point, she asked for a moment alone so that she could have Confession from the priest she had come to know. Every moment filled with significance.

She eventually passed away in the night, peacefully I assume. I was sorry I wasn't there to be there with her. Caregiving…in retrospect I think it's kind of a strange term when I think about it. It's just something you do when you love someone. It's not a thing. It's just what we do for those we love. Because in my eyes, she's not a chart, a patient, a medical record. These aren't "stages". She's not "progressing" or "regressing". She's my grandma, and this was my time to be with her.

- Joe Ford


Stories from the Community

I am my sister's caregiver; she suffers from Alzheimer's and needs twenty-four hour care. I could use more support and suggestions to help my own temperament. I find myself giving into frustration and reduced to arguing.

We do have many good times; my sister and I have running jokes about the past. She remembers the distant past, but can't remember what day it is. When she becomes agitated or embarrassed about her abilities, I play the "remember when" game. Usually it's about something she taught me when I was young. Sometimes it's a song we both knew from the past. Sometimes it's some pre electronic or pre tech object we relied on. Usually the memory conjures up a laugh or two and we both feel better.

I should keep a journal of our journey together because after writing this short paragraph, I feel a little better!


My mother was diagnosed with Alzheimer's almost 5 years ago. We were fortunate enough to be in a position to have her move in with us so I could care for her. It has meant a lot to me to take care of mom, because she had a lot of hardships in her life, and I wanted her to be able to experience what it was like to be loved, spoiled a little, and cared for the last part of her life. There have been challenges along the way, but mom has taught me how to laugh. She has brought such humor, love, and joy into our home. There have been times that we laugh until we cry. Even as the disease is progressing, she still has a sense of humor, and laughs at herself. Recently she was talking to her sister on the phone and started laughing because she couldn't get the words out. She laughed so much, she got me laughing. She is the sweetest little lady I have ever known, and everyone who knows her would agree. It has been an honor and pleasure to be able to spend these years with her caring for her, and hopefully making a difference in her life! She truly is a blessing to me, and I'm grateful for what she has taught me these last 5 years.


My wife lost her nouns about three years ago—everything was and is a ‘thing'. The last few months, her husband has not been with her, but some other nice guy has always been in his place. I made the cute remark to friends, "well at least she likes both of us". A couple of days ago, I explained that I was gong with a friend to do a little project to help prepare one of his properties to sell. I always call her when I arrive where I am going (and have for years), I call periodically while I am gone a when I am headed home. This time, when I arrived home she was so upset. Finally, she said, "You are gone so much. I miss you." I told her was only gone a little over 2 hours and that wasn't long, and doesn't happen very often. She said, "But, you are always gone." If finally dawned on me, all of those times when the other guy has been with her, I was gone. She was right, I had been gone a lot.

Many times it is so difficult to see things from her eyes and especially since she had always been the decision maker. In all truth, about the time I think I have it figured out, just like a lady; it changes. I praise God still still has her music. She plays the piano and keyboard by ear. She is playing 3 times a week at assisted living facilities and does a good job and really enjoys it. Quite often on he way home she fusses at me because he didn't get to play. Sometimes I record it, sometimes I take pictures, but if you don't remember it, well it didn't happen. This is the line I keep trying to remember.


I remember a long time ago when I was a little girl; ( I came from a family of 6 girls, & my father was 1 of 12 ) we use to go visit my grandparents who lived in a small town in the country. I remember my cousins, sisters, & I would go jumping on her big, brass feather bed. She used to beat the ceiling with the handle of her broom; "now I just know you'al are not jumping on my bed are you? " there were such fun, hot days picking corn, & collecting peaches off the trees. Helping her, & watching her make peach cobbler was 1 of the best times of my childhood.

Then they moved to the city, & my grandmother was placed in a long term center. My cousins & I would go visit her, & it would make us very sad; & so hard not to cry, & be angry. (my grandmother was a double amputee ) she had dirty clothes on from the previous day. She some times had clothes on that had food from the previous day. I know the worst times for me were when we would come see her, & she was dirty, smelly, & her sheets would be wet. So then my cousins & I would come every day to see her; feed her, clean her, & change her… I loved my grandmother very much, I miss her every day. She used to write her own daily proverbs, & read them to us. As I got older; the nurses would tell me I should be a nursing assistant. When I got old enough, I did. I swore to my grandmother that all the people I met, all the families I came in contact with would never see, or find their loved ones, or them selves being treated this way. I am proud of what I do, caring for people with disabilities, or seniors is a passion for me. And I hope when I reach that stage in my life, I hope I am lucky enough to find some one like me that truly cares about what they are doing, & the people they are touching with their time, their hearts, & their skills as much as I do…


My mother was homebound for 51/2 years before her death. she finally died from TIAs She also was afflicted with rheumatoid arthritis she never complained about anything , but providing 24-7 care was difficult because good help was hard to find. I decided to take it on myself. Seeing your mother and best friend go down hill, you lose a little part of you as they lose ground. My brother is a recently retired nuclear pathologist. He was ready to start his retirement when his wife has been diagnosed with Alzheimer's. He cannot leave her for anything because she panics when he is not there. I know from personal experience there is so much more to caring for your love one's than presents the eye.


Paying for Care

Please remind everyone that the VA has respite care available. It is not a lot, but it can relieve the burden for some families. The VA will pay for 30 days a year and up to 6 hours per day maximum. Most Alzheimer's association has grant money…again not a lot but it can get a family started. Our local chapter provides $400.00 per year.


You asked how we pay for home and doctor care. My husband is a veteran of the Korean War, and the VA has been very helpful. Contact your local VA rep for your county if your husband is a vet…regardless if he served overseas or not. There are benefits available.


My Dad started out in an assisted living two years ago. Thankfully, I heard about and applied for the Aid and Attendance through the Veteran's Administration. It's basically a pension provided by them and pays, $1732 per month for a single person. With his Social Security, the $2500 plus was paid in full. Anything extra came out of a small savings account he had, until this past January when that ran out. I put him on Medicaid at that point and they tell the care centers how much they will allow for daily care. His dementia is gradually getting worse and I've had to move him to a secure facility. It's much smaller and he gets the attention he needs for his arthritic knees which seems to be helping his general outlook on life. I had not had to deal with anything like this before and any information provided through your e-mails does help. Thank you.


Good morning, I am an 82-year-old woman caring for my sister who is 78, and has no children or husband. She is in a memory-care' unit associated with an assisted living facility. Fortunately she has savings in stocks, and owns a house in Long Beach, which I am going to sell when she needs the money. There are lots of extra expenses. I pay $5000.00 per month for a double room, going up to $6,000 for incontinence. I am a little disappointed with the care there, and with her plethora of medications, and am thinking of changing her to another place which has much better food, more included services, but which starts at $7000.00 a month for a double room. When she was still at the Assisted Living place, we paid $4000. a month.


Question:

My husband has Alzheimer's and does not want to bathe, shower, change his underclothes, or clothing. Any tips on how to get him to do these things once or twice a week? He does not need help doing his personal care, but does not see the need to do it. Thanks

Responses:

I am caring for my 84 year old brother. He has osteoarthritis in knees and hips. Uses a walker. He hasn't been diagnosed with Alzheimer's, but definitely has some sort of dementia. Will not take a bath. Usually shaves every evening but lately goes for a day or two without. Doesn't want to change his clothes. Continuing Care came in, but he refuses to have someone come and help him bathe. Any suggestions as to what I can do?


My wife has Parkinson's with Lewy Body Dementia, and has developed a fear for the shower. She doesn't want others besides me to help her in the shower. She has a leaning problem and can not bathe herself. I wait and let her tell me when she wants a shower. In the meantime, I clean her up daily with No Rinse bathing wipes. Once a week or every other week, I give her like a sponge bath. I sometimes have to trick her into this by doing it while getting her dressed for the day. It's not easy, but we all do what we can. There is no right or wrong—just do what you can. If they have no desire to clean up, just trick them.


In our house, we make bath time in the evening, and I try to make it spa-like. Bubble bath, I use baby shampoo to wash hair in case soap gets in the eyes. Afterwards, we do lavender lotion. Also, before bed, I spray lavender in the bedroom and do a heated neck wrap at bedtime. I intend to add nature music at some point. This is relaxing for me and my husband, whom I am caring for at the early age of 60.


These are just a few things that have worked for me to manage hygiene and dressing with my mom who has Alzheimer's disease and my dad who has vascular dementia. Please remember that what works one time, may not work another time and what works for one person may not work for another.

  1. Based on the fact that there are probably memory issues, you can wrap up existing clothing, tell them it is a present, and then ask them to try it on to see if it fits. Or, if you have disposable income, buy clothing and wrap it up. Almost everyone loves a gift, and almost everyone remembers how to open a present (either by ripping wrapping paper, or by pulling out clothing from a gift bag).

  2. My mom and dad will do very little when they are "told to change clothing or to take a bath." They will many times comply with my request if I ask if they can help me out or if they can try a new soap, lotion, etc.

  3. We have home health in several times a day. One of the ladies told me that she recently asked mom if she would clean up because if mom did not, then this lady would lose her job. Mom quickly responded that she did not want this lady to lose her job and she ended up with a sponge bath.

  4. I follow mom into the bathroom and as she is using the bathroom, I give her a wash cloth with the liquid soap that does not have to be rinsed off. I just hand her the wash cloth and she'll say "What do you want me to do with this?" I'll say, "Oh, I thought it would save a lot of time if you could just wipe your face while you are sitting there." It works sometimes.

  5. I let my dad get into his pajamas and then when he goes to bed, I grab his clothes and underwear and put them in the wash. Of course, I am fortunate in that dad removes his underwear at night.

  6. I've not had to do this yet, but I have heard of some people who want to wear the same thing every day, so their caregivers just buy them the same shirts and pants. This way they can always wear the same looking outfit, but at least it is clean.

  7. I am fortunate in that my mom goes out once a week to get her hair done.

  8. Mom really enjoys having her back cleaned and scrubbed, so sometimes I can start there and then go on to other parts.

  9. Use dry shampoo and brush his/her hair. Almost everyone enjoys having their hair brushed. You can start this out by asking them to brush your hair and then say "Oh, that felt so good, let me brush yours."

  10. Timing is everything. If you leave changing clothes without any intervention from you, you will probably not end up with a very positive outcome.

  11. My dad is forgetting to look into a closet for clothes now. He doesn't look into the dresser for socks and underwear, so we just have clean clothes hanging on door knobs, clean underwear and socks scattered around the room, and several pairs of shoes and slippers in plain sight.

  12. See if you can get someone from the family to say that they are going to beauty school and need to practice washing and curling hair in order to pass. If there are memory problems, you can use the same person, if not, pay a high school student to play along and to come in and wash your loved ones hair. I know it is not really truthful, but in the scheme of things, I feel it is something that has to be done. We actually had a hair stylist come into the house short-term.

  13. If the person is suddenly noncompliant with bathing, etc.: has anything changed? Look at the situation from a global perspective. Do they have safety concerns because they slipped getting in and out of the tub? Maybe they need a mat or a bathtub bench transfer unit. Maybe they cannot bend over at the sink anymore to wash their hair because they feel like they are losing their balance. You could purchase a handheld sprayer to help wash hair. Mom pushed back on bathing in a bathtub, and I pushed back until I helped her bathe. She couldn't get out of the bathtub. I ended up having to get into the tub with her and had to pull her up and out. Thank goodness she is not heavy. (I will say that we ended up laughing so hard that this is one of my most happy memories of late. Laughter sometimes disappears when dementia is on the scene.) Remember, sometimes people with dementia have trouble communicating their concerns, so they just say "no". We, as caregivers, have to put our detective hats on and see if there is something more going on.

  14. When my parents pushed back on bathing in a bathtub or in a shower, I had to become content with sponge bathing whether it is sitting on the bed, the toilet, the sofa. I really don't care where.

  15. I can tell you that I get more cooperation than my brother because I spend at least one night at their house every other week. I know that this would not be possible for everyone, but it gives me an opportunity to take advantage of a situation when it presents itself. The times I have come in, in a hurry which is also typically what my brother does, I find that I am demanding and pushier and it just does not go over as well. My parents are so attuned to my attitude.

  16. I always bring my dog with me when I visit. They love my dog (better than me at times!) and it generally puts them in good or at least better moods. Sometimes that is all I need to get some things initiated. Especially when trying to get my mom to eat. She ends up feeding my dog while she is eating. Do I really want her to feed my dog and to reinforce bad habits? No. Do I want mom to eat? Yes. In the scheme of things, it is not a hard decision to make.

  17. Are there any messy activities you can involve your loved ones in? Maybe once they get dirty, they will be willing to wash up. What did they used to do when they worked? Did they clean up as soon as they got home? Maybe you can capitatlize on that by telling them that they just got home from work and you will eat when they get done cleaning up.

  18. Also, sensory activities like washing and bathing might be too much stimulus for a person with dementia. Find out the time of day that is best for them and take advantage of it. Both my parents are much better in the morning. My mom is now sundowning, so evening times are never a good time to consider things like washing up.

  19. I am rarely ever able to reason with my parents. If I start in that mode of trying to prove them wrong, or getting them to admit to anything that they have forgotten, I know it is time for me to leave the room and come back later. It only creates a tense, unproductive situation. It does not matter who is right or how it gets done, just that it gets done.


I keep a dry erase board on the fireplace so my husband can see it from his chair. Every evening, after he goes to bed, I put the date and day, and what we are going to do the next day. I had a terrible time getting him to shave and shower, so every other day it is on the schedule. He doesn't always want to do it, but it has made a difference when he reads it for himself. He is unable to stand and shave himself, so I shave him and then move the shower chair into the shower so he can sit while I wash his hair and bathe him. I also keep baby wipes close by for when he stands at the end of the shower. This way I can make sure his bottom is clean. While he's in the shower, I remove the clothes he has slept in, and have fresh clothes ready in the bedroom for him to put on. In the evening I have a chair by a small wooden file cabinet that only has his sleeping clothes in it. It has now become routine for him to sit in the chair to get dressed. Trying to stick to a routine and having everything he needs close by has been a big help. He would never think of deodorant, but when I hand it to him he uses it correctly. The same with his aftershave. I don't put it on his fingertips, like I would use a cream, but I put it in his palm like he has done the 37+ years we've been married. Brushing teeth is another matter. He thinks he has brushed and I have to feel the toothbrush to see if it is wet.

I know I am very blessed that he is at a stage that he will do what I ask of him. We get through each day and see what tomorrow will bring.


My husband's mother, age 88 with Alzheimer's, has lived with us for over a year now. She used to be a person who was always clean, clothes clean, nails done, etc. She took very good care of herself.

Now the only thing she will put in the clothes hamper in her room is her underpants. If left to her own choices, she would wear the same outfit and same socks every day, and very rarely shower. I have asked her to put her socks in the hamper, and she tells me they are still clean. I try very hard not to argue and to maintain as much of her dignity as possible. My solution on the socks and clothes is to wait until she is in the bathroom and go take the dirty clothes out of her room. I will often replace the outfit with another laid out on her bed or on the hanger close by. Her memory is extremely short, so I assume she thinks she has laid the outfit out to wear. She has never asked me about where her other clothes are. Sometimes when I bring the clothes back to her room after laundry, she tells me that I didn't have to do that. I just respond "that's okay; I was going to wash our clothes anyway".

On the shower issue. If she showers without my help, she will turn on the water, maybe get in, rinse a bit and get out. No soap or washrag used. I try reminding her about needing a shower because we are going somewhere. It works much better if there is a purpose in mind. I tell her I will be in to help just a little. I wait until she gets in then go in, help with the water temperature, scrub her back and feet telling her I am just helping because she has trouble reaching and then give her the soapy washrag and tell her I will leave her to finish up. We do have reach bars and a shower seat to help. I think since she is doing some of it she feels more like she has done it. If she argues and says she can do it herself, I don't help that day and wait until the next day.


The bathing issue was a tough one for me, too. I finally got mom to wash her face with me: I would wash my face, and then give her her face cloth (a baby one much smaller for her, I used baby wash just in case she would'nt).


We found that a bath/shower goes more smoothly by putting a rubber mat in the bathtub. adding a few inches of warm water, then I assist patient to step in holding a grab bar and my hand.

Then I place a shower bench in the bathtub, he sits down on the bench and I use a hand-held shower to assist the patient as he washes his face, chest, abdomen, arms & legs. After washing his back, I shampoo his hair and provide the final rinse.


When I worked for Hospice we had a good training video "Battle over Baths" or something like that. Might have a few ideas for folks.


Sounds just like my mom was—now she's bedridden so gets bed baths three times per week by Hospice Nurse. - which she hates and is verbally abusive - and her arms are still strong, and "we" have to watch out for her teeth, which are all hers! (as she will bite if given the opportunity…)

My advice is have her doctor recommend home health at least, if she is not ready for hospice yet. Home health aide will come in and get her in the shower at least two times per week - it won't be easy, but if you find a good caring patient aide, it will work! Home health is paid for by Medicare if requested by Doctor, as is Hospice—so it is really a blessing!


Interesting! Another problem I have is getting my Mom to use the hamper for dirty clothes. She takes her dirty clothes and hides the undies in various places in her closet -- I have found purses stuffed with dirty panties! And she hangs the dirty clothes back up, so I am constantly having to go through the closet and pull out dirty clothes. Otherwise, she will put them back on and wear them…


I care for husband with dementia. He repeats things all the time, and also exaggerates the stories. If I try to tell him the truth of matters, he does not believe me.

I am starting to stay home more with him and not socialize because his stores gets old so quickly and I get very uptight.

I have sitters two days per week for four hours each day, but probably need more or take him to day care.

He only realizes he has a problem sometimes, and can take care of himself bathing and personal hygeine. but I must give meds, meals, appts. etc.

How does one tell their spouse that he is getting on her nerves without making him feel a lesser person. Help


I encounter my mothers resistance to hygiene upkeep on a daily basis. It really is a difficult task. What works in the morning may not work an hour from now. She is mobile but has taken to refusing to get out of the bed in the morning. She has her bed from medical services so I elevate the bed to prevent backpain for me and bathe her in bed. Since incontenence is now a reality, she must be cleansed. Not an easy feat. I mentally try to prepre myself for her reisistance by telling myself not to take what she says personally. I zone to a peaceful place in my mind while I cleanse from head to toe. Wipes, no rinse bathing products, and towels are within my reach along wit her clothes for the day. I sing with her to distract her as well or I play her favorite music. If she rsponds with body movement to music, I cleanse that area. Take your time if time is there to adjust. Again, hygiene is not an easy feat.

Soap and water is just as good. DO NOT BEAT YOURSELF UP! You care for the entire person. Focus on the good you do from your heart.


I have taken the path of least resistance. My husband hates to shower and brush his teeth. I have talked to the doctor and others and decided that bathing a couple of times a week is sufficient. Sometimes, if he has a bathroom accident, it is more often. I make sure he brushes his teeth by telling him he can't have lunch or dinner until he has brushed them. Or maybe I'll tell him I am going to turn off the TV until he does the basic hygiene chores. He is in bed most of the time, and isn't able to get around much, so I go in the bathroom and help him. Shaving is another problem and I let him go for a few days before insisting he shave. I realize that I cannot impose my standards of hygiene on him. As for the withholding of something, that is how I taught my kids to be responsible, and I feel it does work with the AD patient. At some point this may no longer work, but for now it is.


As a caregiver, I can tell you that each person you work with the bathing subject is a little different. One client you can make a joke out of the process the other client you may have to use a little coaxing to get them into the shower. I had one client that wanted to shower without anyone around and was subject to falling and getting hurt.

One thing that seems universal is that a family member or spouse has a bigger challenge than I do as a caregiver to get them to bath because when I walk in it is as a friend who visits with them first and than we bath or shower, change clothes, etc. After all is completed we take 10 minutes to visit some more. This is not a production line or assembly program that goes the same every time we visit. The client can be in a good mood or a sour mood when you arrive and visiting changes their temperament before you begin working with them. Most spouses will tell you that the mate does not take orders given very well.

To me the key is visit with the Client as a friend. Discuss how they are doing, what they are currently interested in or even what they did as children growing up when they had a day off from school because of a blizzard and school was closed. Most Alzheimer patients will remember funny things that you can bring up about your own experiences as a child because they to had a similar experience when they were children.

My main concern is controlling the conversation around the client with family or a spouse as if the client were not even present. We all have feelings and even if we forget the feelings are real for the moment. Personal things may be spoken in another room or out of ear's reach and as a caregiver it is my responsibility to help the client feel good while I am around.

Little children's games also are good to keep the brain active—24- or 36-piece puzzles, or tic-tac-toe, etc. are games that some clients enjoy. I find the Home Instead Exercises book to be very helpful with most of my clients as they sit many hours in front of a TV with no movement other than to get up for the bathroom.

Keeping the body active helps the brain stay active as well.

Last thing I always try to remember is that we must treat the client like we would like to be treated. Encourage them always, lift them up in all that they do, keep them in your prayers while away.


I have found that church is very important to my dad. So, he bathes the day he is going to church.

For a while he was going daily, so that worked out great. He goes less often now, so he is bathing less often.

But if I mention that I will take him to church, or we may go, he will get himself ready, and that includes bathing.

So my hint is to find out what makes a person bathe, and use that event during the week. Hopefully everyone will bathe for something!


I am having the same problem with my mother about bathing: "No, I'm fine, and if people don't like it, they can stay away" is the response I get. Other than arguing with her, I don't know what to do. My parents have recently moved in with my husband and I so I can help with mom. But even my dad, who doesn't have anything mentally wrong, refuses to take a shower, only "wipe off with the wash cloth because I don't do anything to get dirty" so I am doing double duty with them! We are remodeling the bathroom to take out the tub and just have a shower so it will be easier for them and maybe not so scary for them. But in the meantime, I'm ready to pull my hair out and can't hardly stand to be around them for the smell, and neither one of them ever used to be this way.

Any suggestions would be greatly appreciated. (I also offered to have someone come in to help and he/she flatly refused).


Question:

"What is the best way of dealing with my mom not accepting that her mother is deceased? She keeps wanting me to pick up the phone and dial the old phone number and she becomes very angry and volatile with me."

Responses:

Hi. I have experienced this situation from former patients. You can't change their mindset, because they are in a different time frame. You just have to go with the flow, as it will pass. Then use some interventions so that their mind will be focused to something else.


My mother comes from a large family—all deceased. When she asks about them, we tell little white lies, like they're at work, or doing garden work, or went to the store, and then try to change the subject. It usually works. We used to tell her the truth, but that made her sad like losing them all over again.

Question: anybody know any tips to keep food hot? My mother is bedbound and on the second floor. We have a microwave up there, but the food gets cold so fast. We try smaller portions, but [that's] more work up and down [the] stairs. Any suggestions?


My mother almost every night wants to go home where she grew up. That home has been gone for probably 30 years. She wants to go see her parents. What my father did was take pictures of my grandparent's tombstones to prove they are no longer with us. That seems to work a lot of the time—and sometimes it doesn't, and we just have to wait it out. Other times, she wants the kids and is worried sick over them, which I am one of those kids and am 56. We have my daughter call her and tell her she picked them up for the night cause she wanted to spend sometime with them. That too seems to work. These are our two big deals, every night when the sun sets. I hope this can possibly help someone else. Thank you for having this site.


My name is Dorothy, and I have experienced something like this with my mother. Although it wasn't about her mother—it was her best friend. When she passed away, my mother was shattered. She was so upset about it. I have to say, she has never exhibited that kind of emotion over the loss of anyone—not even my father. Several times she's mentioned that Betty hasn't called, and wonders how she is. The first few times, I reminded her that she had passed—the same reaction every time. So as not to hurt my mother, I have decided that I would spare my mother the pain she feels every time she hears her friend has passed and I no longer tell her the truth. I avoid a response, and usually change the subject. As for the volatile behavior: since my mother has been medicated, it has diminished her aggressive behavior. However, her anxiety level is still the same.

Hope this helps. I realize every situation and person is different, but every experience is education and may help somebody else. Good luck, and God bless.


Question:

"Should I let my husband know he has Alzheimer's? So far we have avoided the subject and told him he has Parkinson's dementia."

Responses:

Since my husband was diagnosed and as the disease progresses, I struggle maintaining wifely relations with him. I am so much the caregiver that the wife part is failing. I feel like Emily in the way of I just can't see our relationship the same. There is great sorrow in me that I try to hide because I don't want to hurt him. He is losing lots of functioning and I am watching it dwindle. He at times is wanting our life in the bedroom to continue and I am having a tough time doing so. I think I know why. I struggle with abandonment issues here. I go back and forth between a bit of denial, sorrow and anger as he is my best friend. I don't want this disease. I struggle with selfishness and love, I behave poorly I feel at times trying to keep enough distance to keep up his care in a loving way, full of quality. Just having trouble with the wifely part then I feel guilty. Then I get mad a me. Is there a way to end this circle?


My father, 85, has dementia, brought on by uncontrolled diabetes causing "vascular dementia". His disease process mirrors Alzheimer's. My mother, 87, has been struggling to care for him in their home for the past 5 years. She has now been diagnosed with Parkinson's and her memory is noticeably worsening. The stress on her is unbearable. Both my parents are on a waiting list for the local nursing home.

My father has never been told he has Alzheimer's. Though I believe there are times when he is very aware something is wrong. This, to me, is the saddest of all. This is a man who once commanded an army battalion; who read books faster than anyone I knew; who could answer any question with his vast self-taught knowledge. He had an answer for any question I ever asked him. He was my "go-to" person for so many things.

He now reads only magazines since he cannot remember prior chapters in books. One magazine will last months, as it's all new to him from minute to minute.

At times he says, "I think I'm getting forgetful." and will vehemently deny it moments later. This comes in to play when we remind him to take his insulin and he insists he already took it. I prefer the soft approach, i.e., "Dad, you're an old fart! And you're getting forgetful like Aunt Leah did when she was older. I forget things too! But I know you haven't taken your insulin." Sometimes this works; sometimes it doesn't.

I have learned over the years to just repeat something as many times as I have to, in the same tone I did the first time. I have learned to cherish the five minutes when his eyes clear and I can see he's present.

Last week was the first time he didn't know my name.

I'm not sure telling someone they have Alzheimer's does any good at this stage. For one thing, you'll have to repeat it over and over—that seems cruel to me. How does knowing improve their lives? Medications can be given, usually at that age along with a handful of others, without knowing "this is for your Alzheimer's".

I tell myself that he is comfortable, well cared for, and happy, that most of the horror of this disease belongs to the family and friends. I know, though, at one point early on, he had to have been terrified to be "losing it". He was always in such control.

My heart goes out to anyone dealing with dementia in a loved one. I am a nurse and have cared for many patients in various stages of this disease. I have seen, what's right for one may not be for another. Some deal quite well knowing the reason they are fading away. Others respond with denial and anger. It's very individual.

All you can do is your very best—nothing more. Guilt is a wasted emotion, and does no one any good. My sister says, "When this is over, I will sleep well knowing I did everything I possibly could to make their lives better." And don't forget to laugh. There is humor in everything and laughter is good for the soul.


My mom is currently living with me. Her memory loss is still classified as dementia. I will probably never tell her when that changes to Alzheimer's. Over the last year, as her memory loss has worsened, I have seen the look on her face when she realizes that she has "lost" several days, or she doesn't remember living with me. The pain and fear I see at those times is something I have promised myself I would not knowingly cause her. At this point, we can joke about it, and she seems happy to let the topic of her forgetfulness drop. Other times I feel she knows what is going on and is choosing to ignore this elephant in the corner. Should the day come that she pins me down with questions, I will be as honest as I can and go from there.


I know the pain and anxiety associated with the question … Both my parents had Alzheimer's, and with each I took a different approach. My father became ill first, so I didn't have the same knowledge going into his illness as I did with my mother. I decided upon the direct approach, since that is my personality and always was his, but to no avail. My father denied that he was sick, denied he had anything wrong with him and throughout the whole time that he suffered with Alzheimer's. I learned that the direct approach did not work with him. He had a history of denial when it came to acknowledging something of a "negative" connotation. For years, he kept asking "when can I go home?", and I learned that the easiest way to deal with that question was to tell him that it was up to his doctor. I told him he was sick and when he got better he may be able to go home. Needless to say, it was very difficult, as I am not prone to lying. But it worked, and avoided angry and hurtful feelings, and I used what I could to ease his mind. Let me stress to those in this situation: there is no right or wrong way to deal with these issues! Do what works for you and your loved one, what eases their mind and helps you to cope in the situation. You will not be judged by anyone who knows what you are going through! With my mother, I told her that she had memory problems and that I was there for her, and that I would take care of her. This seemed to alleviate her anxiety when she was confused, and she trusted me. Thank God! Again, to those who are experiencing this issue, go with your gut feelings and use whatever method you think your loved one will respond to in a positive or at least accepting way. Again, there is no right or wrong way. Whatever you do, do it with love and compassion. They will feel that, even if they don't or aren't able to tell you.


The problem I face is not … taking care of my husband, … [who] has Alzheimer's/dementia as well as Parkinson's. He is so good to care for. My problem is that not one of his family members have come to see/visit or called him since he was told he had it. I think that is very cruel. Right now he needs the love and support from his family. On my side of the family, my daughter and son-in-law do all they can to help out. But, no one—I mean, no one—calls or visits us. It's a very lonely life to take care of one with Alzheimer's and [have] no one to talk to about it. I feel so alone. Why don't people see how hard it is to be a caregiver? I love taking care of him and will 'til death do us part, but I do wish someone would call or visit once in a while.


I really haven't come right [out] and told my husband. I've told all the family and friends. I don't think he would really understand. Now he wouldn't even know what I was talking about. I don't want to confuse him any more. I'm trying to keep him at home as long as I can. He's under hospice care, which is lot of help. I don't want to put him in a facility—it would be harder than keeping him at home.


For a few years, I struggled with the "forgetfulness" of my Mum. No one in the family wanted to face the large question of dementia or Alzheimer's. Circumstances made it imperative that we put a name to what we could see. Mum had homecare and they were wonderful at letting me know if they noticed something I should be aware of. I attended her doctor appointments with her, and the doctor was more than reluctant to act on her forgetfulness and to take the next step to have her tested. One Monday morning, the homecare supervisor called to tell me that Mum had been very confused that morning and seemed to be unable to remember how to dress. It was noticed by her thyroid doctor, and he wrote a strongly worded email to her general physician, who reluctantly contacted the local seniors center to have a specialist come out and do the tests.

After the test was administered, they called and told me from all that they had learned in being with her and testing her that she had dementia and that they recommended Aricept be prescribed so that hopefully this would help slow the progress.

I contacted our local Alzheimer's society, [and] got all the information I could so that I could know how to help her. When my Dad was ill, he had asked me to promise that I would look after her after he died—now it was the time to put the promise into action. I spoke to the rest of the family with the news and my plan for her going forward. Then came the hard part: telling her the results.

She had suspected herself that she had a problem, but not that. She was angry, hurt and wanted desperately to have no one know. I should tell everyone that she had Parkinson's, anything but the truth.

We reached a deal, her and I. I would honor the promise to my dad, with the qualifier that she could remain in her own home as long as I knew she was safe. Homecare was increased, I went up every night after work, took her shopping, helped with her banking, encouraged her to enjoy herself, to get out with friends (that knew the truth).

Then came the horrible night when I got to her home, and she was lying in the bath, having tried to take a bath on her own. She had a brain hemorrhage and actually was given 48 hours to live. That was almost 2 years ago, she recovered, somewhat, she now lives in a care home. She is no longer able to walk on her own, she is a fall risk, and the dementia has become worse. She still tries to convince me and whoever else she can that she has cured herself of the dementia and the brain damage that she suffered.

I am her voice of reality, and we love each other. It is not easy, but for her and I she knows that no matter how bad things get I will be the constant in her life. Just like I promised both her and my Dad.


The word "Alzheimer's" is too scary. If you use it in the beginning, many become filled with fear and anxiety. I used the word "confusion", and told my husband not to worry—that I loved him, and I loved helping him whenever he needed me. I told him that all people get confused and forgetful as they aged.

It didn't matter later, because he didn't know what it meant.


I called my husband's doctor (who is also a friend of mine) and told him about the symptoms I was noticing. [I] asked if he could address that at my husband's next appointment. "Sure," he said, "We do that all the time. Just tell him there are some tests we like to run for people at his age." My husband came home from the testing and said, "They told me I have Alzheimer's." This was two years ago. I'm wondering if he's going to forget he has it, but he knows his brain


My family is in the position [that] he (Dad) has not yet truly been told. We have tried, but he is in total denial, regardless of the fact that he watched his older brother and sister die of [Alzheimer's]. The situation is he lives with Mom, and I live five minutes away. We are well into this (I suspect between stages five and six), and he is pretending a surgery (caused by his avoidance of the doctor for two years due to his [Alzheimer's]) gave him a mental decline that he is now recovering from, and is insisting that the things he can no longer handle are simply things that if he still did himself would keep him okay (banking, taxes, etc.). It's gotten very "ugly". I myself took [care of] my 99-year-old grandmother for her last year of life when she had full blown dementia, and that has led me to become a licensed CNA, so I deal with dementia clients better than anyone, but (and I knew this was going to happen) not my Dad. I cannot change the father-daughter relationship in his mind, and it has caused many "incidents" for myself and my mother. Friday is a "critical" day, as he is returning to the primary care physician for the results of his MMSE that sent him immediately for a CAT scan, and we never got the results of the CAT scan. (Turns out: "Thank God you called—we've been trying to get him back, and he keeps cancelling.") I am really worried how he will react, but I have people in place to get Mom out of the house (I will be with a client) if anything goes wrong. Hopefully I will follow up with positive news instead of the disaster I am expecting.


My mother lived to age ninety-nine, and didn't show signs of dementia until her mid-nineties. Occurring so late in life was, in a sense, a blessing for both of us. That is not to say I wasn't affected by her journey. We cared for her in our home until a broken hip forced placement in a nursing home dementia ward. Visiting her and the other residents led me to end a twenty-seven year employment career, and start a new one working on the nursing home's dementia units. During my time there, I cared for hundreds of patients, and grew close to many of the families. Some who visited nearly every day, laughing, still able to enjoy the company of their loved one. Others who were brought to tears. Still others who sat mortified, frozen by their surroundings. The residents towards whom I felt the greatest empathy were those who never saw a visitor. Ever. And there were many. My mother has been gone for a decade, and though I still volunteer, I am far removed from the war of emotions this relentless disease creates.

What tears at me now are the expressions of guilt expressed by so many. I wish you knew what I have learned. I wish your emotions wouldn't blind you from what I'm able to see. God bless and strengthen you. You are all heroes. Lay down your guilt—it does not belong to you. It is owned, entirely, by those who walked away.


I live two and a half hours away from my only sister. We are the only family left. She is younger than me and developed this disease in her fifties. She is now 63. We have gone through many trials involving losing her job, taking away her car and her mail. She is still living in her house with the help of several caregivers. I manage everything from my house.

She didn't want to live with me, but I do travel up to visit with her. I can't begin to tell you the experiences we have been through from the inception. It would take a book. What I can say is, this experience has been the hardest, saddest and dare I say most enlightening experience I have lived through.


I have told my mother that she has Alzheimer's—mainly because dr's forced the diagnosis on her. In reply, she blamed me for the diagnosis, and was very angry about it, then promptly forgot it. She is constantly telling me her memory is bad, but I have decided not to tell her anymore. It would have been nice if we could have planned for this, but I guess she is not that kind of person, and that's the way it goes.


My husband of 65 years was placed in an Alzheimer's unit at an assisted living facility. It has been extremely hard on me, as he was put there unwillingly. He says there is nothing wrong with him, he knows where he lives, how old he is, etc. (but [is] usually incorrect). My first visit with him was ten days after he was placed, and it was wonderful. Every visit since then has been horrible. He is an escape risk, and cannot understand why he is locked up because he has never hurt anyone, never broken the law, on and on. "Please get me out of here...I need to go home", and all of this while he is crying. He cries most of the time I'm with him. This behavior continues after I leave, and the staff then has to deal with it. I have decided to stay away for longer periods of time, and perhaps he will forget about going home. He misses me and I miss him, but God knows I have put him in His hands as I can no longer deal with it, but I know God is there for me and has been with me through this ordeal. This is the worse disease I have ever known, and it is on the rise.


To all families out there caring for loved ones with the different dementias: I [have worked] with seniors for 27 years as a care aide, and now in recreation. I can assure you I have seen time and again how painful these visits are for family. But I encourage you to visit. They may not respond in [the] way that you expect or need them to, but love crosses all boundaries. A smile and kind voice.


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Thoughts and stories from others

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