Coping with Grief Associated with Alzheimer's
(11/02/2012)
Kelsey - Home Instead: We’ll be beginning the chat shortly. The topic for today's chat is “Coping with Grief Associated with Alzheimer’s.” You can start submitting your questions at any time.- A few things about asking questions:
- 1) We’ll try our best to answer as many questions as we can.
- 2) We will look for similarities in the questions and try to answer those especially.
- 3) All questions will be moderated, so they will not show up until they are chosen to be answered.
- 5 random attendees will win a free Caregiver Package. Those winners will be notified by email *after* the chat.
Hi, this is Cat Koehler from Home Instead Senior Care.
- This chat is brought to you by Home Instead Senior Care, a family network of locally owned franchise offices striving to be your trusted in-home care agency, to help keep your aging loved ones in their home as they grow older.
- Our expert for today’s chat, Dr. Amy D’Aprix, is an expert in aging, retirement, and caregiving, and a frequent guest on radio and television programs. She has authored two books on caregiving and friendship, has written numerous articles for various media publications and is highly sought-after as a trainer and speaker throughout North America.
- We’re very pleased to have Dr. Amy with us today to answer your questions on coping with grief associated with Alzheimer’s.
- If you want to tweet this chat on Twitter, please use hashtag #AlzChat
- We’ll jump start our conversation with a video telling the story of the Mauk Family (winners of our “Remember for Alzheimer’s” Family Reunion contest).
- Make sure to enable sound on your computer.
- Here is the video.
- Hopefully, everyone has had a chance to watch the video.
- We’ve received a lot of questions so far! Thanks and keep them coming. We’ll start with a question we received from a registrant before the chat.
- This question comes from Karen in Hartsville.
- My mother has not been diagnosed with Dementia, but is showing signs that are very concerning to her family, such as memory loss, misplacing things, and accusing family members of wrongdoing. She is in denial and has even fooled her doctor that she is just an eccentric person even though she failed memory tests with other doctors. What can we do if her family doctor is not interested in listening to her families concerns?
The best way to diagnose/assess dementia is through in-depth testing by specialists.- You could ask your Mom's doctor for a referral to a geriatrician - a doctor who specializes in caring for older people
- or to an Alzheimer'ss Assessment Clinic - which are often affiliated with hospitals or Universities.
- If the doctor will not give you a referral, you might consider contacting the Alzheimer's Association in your community and ask them whom they recommend for assessing dementia.
- Thanks, Dr. Amy! Next we have a question from Jan in North Carolina.
- I am a caregiver for a 93 year old woman with Alzheimer’s. She has great difficulty finding words to express herself, she will often start with “let me see, let me see,” but is unable to finish a sentence. I see her become very frustrated and was wondering if there were some technique to ease her frustration.
- That must be frustrating, Jan.
- Unfortunately, Alzheimer's disease can rob people of speech. I had a similar experience with my Mother who had dementia and lost speech in a stroke.
- I found that I could "carry" the conversation simply by helping to fill in the blanks.
- You can suggest the words she may be trying t find and then ask her if that is what she wanted to say.
- Because of the confusion that is part of Alzheimer's disease, she may not actually know what she wants to say.
- I found that "keeping it light" was very useful - being playful with my Mother is a tender way.
- If she is able to enjoy that, I recommend taking a light approach. Also, consider redirecting the conversation or the activity if you find her getting too frustrated.
- Those are some great ideas!
- Let's take a questions from Emily in Maryland.
- I cared for my mom two years before she went into a memory care facility. My mom has been in a memory care facility since January of this year. I struggle with visiting her. I'm not sure why. Sometimes I drive to the facility, which is very near my home, but once I get there, often times I can't go in. I love her, and it saddens me for what she is experiencing, but that doesn't seem to help. Should I seek counseling? I fear some day I will regret my lack of strength to face her.
- First, it is very normal to having mixed feelings like you are describing.
- It sounds to me like you are experiencing grief and are quite sad - again, very normal under the circumstances.
- I do think you could use support to help you with these feelings.
- There are several places you can find that support.
- You mentioned counselling - and that is certainly an option you might want to explore.
- You might also want to think about getting support from people who are in a similar situation as you are in.
- There Is also a great Facebook page that has over 190,000 fans.
- Another place to get support is through a caregiver support group sponsored by your local Alzheimer's Association or another community group.
- I am sure you are - and have been a great daughter and getting support will help you deal with these difficult emotions in a way that will help you not regret this time when you look back - Good luck!!
- Thanks, Dr. Amy!
- Marion has a question about dealing with feelings of loss.
- What measures can I take to help with the feelings of loss I have as I "lose" my Mom before my eyes?
- It is very common to begin feeling loss while our family member with dementia is still alive.
- That is because we are watching them change in ways that are difficult - often we feel like the person we knew and loved isn't really there anymore
- However, there are ways to still embrace who your Mom is and remember who she has been
- You might want to try connecting with your Mom through old photographs that she can still look at with you and enjoy
- Or, depending on what stage your Mom is at, she may still be able to engage in simplified versions of activities she liked
- So, for example, if she liked to cook, she may not be able to make a complicated meal, but may be able to help you make a sandwich
- Think about the things your Mom has really enjoyed over the years and try to use those as ways to connect- smells, music, activities..
- On www.helpforAlzheimersFamilies.com there are free online training sessions that you can watch for ideas about keeping your Mother engaged
- After you watch the segment, you have an opportunity to download a free version of a Life Journey Journal that will guide you to think about things that may be helpful in coming up with ways to connect with your mother still
- One more thing, the feelings of loss are completely normal and you may need support to help you manage those. As I mentioned in the last question - support groups are a wonderful way to do that
- Thanks, Dr. Amy.
- Carol has a question, I hope you can help her with.
- My husband went into long term care (a nursing home) in April of this year. I was caring for him, pretty much alone, in our home. I feel so sad and lonely sometimes but also relieved to have my life back. With each change I have felt so guilty and sad. He is not the man I married. He was intelligent, articulate and curious about so many things and this was an important part of our 23 years together. That has been slowly fading to point that he is now a shell of who he was. I don't know what to talk about with him when I visit him. Also, I feel very sad that some of his adult children have abandoned us. These are his children, my step children. I am disappointed and angry with them, with his daughter in particular (the other 4 are boys). Most times I just push my feeling aside and get busy doing things I enjoy. What else can I do.
- While we’re waiting for Dr. Amy to answer this question, we’ll post a small poll.
How often do you feel resentful toward your loved one for your caregiving situation?
Most of the time.
Sometimes.
Every now and then.
Not very often.
Never.
- We’ll take another 15 seconds for people to answer.
- Thank you for sharing your heart with us. Everyone here understands what a difficult journey this can be.
- Dr. Amy, what can you say to Carol?
- Carol, it sounds like you have had a very difficult situation to deal with and that you have been a great caregiver to your husband. The mixed emotions you describe are normal. Relief, sadness, guilt are all emotions we may feel about a situation. Most of us think we "should" only feel one emotion at a time...
- However, I like to think about emotions more like a pie - you might have a big slice of sadness, a smaller slice of resentment or relief
- In other words, emotions aren't "neat", we can feel things that seem conflicting at the same time.
- So...what can you do about the emotions? It is good to acknowledge that you feel them and to just accept that emotions will happen - and they are all ok
- When we try to push them away - either by ignoring them or by keeping busy and distracting ourselves, we may find that they are like a rubber ball we are trying to hold under the water - it eventually pops up!
- Again, as I've mentioned to a couple of other people - having someone we can talk to about these emotions - someone who will just listen to us and not try to "fix it", can be very helpful.
- You also asked about connecting with your husband.... Try to remember the things he and you loved and see if there are any threads from those things that you can draw on now.
- For example, if you loved to travel, you may not be able to do that now, but perhaps you could watch travel videos together or shows about travel...creativity is the key here! Good luck!
- I hope that helps, Carol!
- Our next question is from Tonza in Phoenix.
- In my family, we have had multiple people who have been diagnosed or passed away from Alzheimer's, including my mother and close aunt. I have gone through the grief of losing them and now I am depressed on if I will someday get diagnosed and the pain it will have for my own children. How do I handle this anxiety and how to I talk to my children about this?
- It might be helpful for you to talk to your doctor and get more facts about this situation
- Often we spend a lot of time worrying about things that, if we only knew the facts, we could relax and let go of the anxiety.
- I am not a medical doctor so can't advise you on this, but I do suggest you get information from a reputable source.
- If your doctor isn't helpful, contact the Alzheimer's Association and ask them where you can get answers to your questions.
- David has a question for Dr. Amy.
- I recently found out that my grandmother was wondering the neighborhood looking for her purse. Does this sound like someone who has Alzheimer's to you? She definitely seems confused over the past couple of years.
- There are several types of dementia of which Alzheimer's is the most common.
- This situation with your Grandmother definitely needs to be addressed - through proper diagnosis/assessment.
- It's impossible to say whether or not its Alzheimer's disease - or what is going on - without proper diagnosis. Start with her doctor but make sure she gets a thorough and accurate diagnosis through a specialist.
- Thanks for the questions, David!
- A question from a guest is coming up.
- My 90-year-old mother-in-law forgot my husband's birthday for the first time ever last month. That made us all a little sad since she's always sent a card and made a call. Anything we can do to prepare for more of the same?
- Well, I sometimes forget to send birthday cards and I'm a lot younger than 90! What I mean by that, is not all forgetfulness necessarily means someone has dementia.
- It is very good that you are right on top of this, because it is important to find out if there is anything serious going on. However, some forgetfulness is not uncommon as people age - especially in later years.
- I would definitely recommend that you talk to your Mom and see if she is willing to talk to her doctor about this.
- And, I would also recommend to the family that you continue to monitor how she is doing - both mentally and physically. It sounds like she has done remarkably well.
- You might want to consider using a resource to talk to your Mom - it is the 40/70 rule. We will put the link in below.
- I hope you have many more great years together!
- Thanks, Dr. Amy! Next we have a great question from Anne about feeling disconnected.
- How do you deal with the emotions of feeling disconnected to my mother because she doesn't know who I am and I avoid visiting her because it is hard on me?
- It is extremely hard when someone we love no longer recognizes us - I'm sorry you are going through this with your Mom.
- Often, feeling disconnected is a sign of grief or sadness - it is almost a way to protect ourselves.
- I recommend that you get support for these feelings - they are a lot to manage alone.
- Also, you might want to try simple ways to connect with your Mom - despite her not knowing you.
- If she is comfortable with touch, you might just sit and hold her hand.
- You could also simply sit with her and listen to music or have the television on.
- This will be much easier if you talk to someone about your feelings - express them, allow yourself to acknowledge the grief and sadness.
- I am sure this is a very difficult time for you and I wish you the best.
- Great tips, Dr. Amy. I hope those help, Anne.
- LeAnn has a question about Alzheimer's running in the family.
- Both of my grandmothers have/had ALZ? My maternal grandma passed 9 years ago with ALZ & my paternal grandma is under hospice care with it currently. I don't know anything about my maternal grandmas parents, but my paternal grandma's mother had dementia, though they said it wasn't ALZ? How much does this family history increase my risk?
- Hi LeAnn. I am sure you have concerns and I want to encourage you to talk with your doctor about this situation. I am not a medical doctor and can't offer you medical advice, but I know that you can get this information either from your doctor or another expert source - such as the Alzheimers Association.
- I really encourage you to get this information-you simply need facts from a good source - good luck!
- We'll take our final question from Janet in San Diego who is a long-distance caregiver.
- While we wait on Dr. Amy's response, we want you to know that if your question did not get answered today, we have several resources for you:
- 1) Check out our “Ask Dr. Amy” feature on CaregiverStress.com:
- 2) Take an online e-learning course designed for caregivers on Alzheimer’s & Dementia
- 3) If you haven’t yet liked our “Remember for Alzheimer’s” page on Facebook, we encourage you to become a member of this vibrant support community. Go here and click the “Like Page” button:
- Janet had a question about caring for her mother from a long distance. How to handle dealing with her delusions from so far away.
- It's important that you have someone who is near your Mom involved to monitor this situation - from both a safety and quality of life standpoint. It is just too hard to monitor these situations long distance without some local support.
- You might consider a home care company or a Geriatric Care Manager.
- You can find a Geriatric Care Manager at caremanager.org
- You may also consider contacting your local Home Instead Senior Care office.
- I think it is important not to ignore this situation - safety is always first!
- Thanks, Dr. Amy! This has been a great chat, and we’d love to hear about other chat topics that may interest you:
Which other topic would interest you most for a live chat with an expert?
More topics on Alzheimer’s & Other Dementias
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Caring for an Older Adult with Arthritis
Caring for an Older Adult with Multiple Sclerosis
Nutrition for Older Adults
Caring for Yourself while Caring for Others
- Thanks for your great feedback!
Everyone who attended will receive a link to the transcript of today’s chat by email.
- Join us on Twitter immediately following this chat, where we will continue this discussion using hashtag #AlzChat
- Please join us for our next live chat on November 16, 2012 at 12pm EST on the topic of “Capturing Memories for Someone with Alzheimer’s” with Alzheimer’s expert Laurie Owen.
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- Thank you Dr. Amy! Have a great day everyone!