Survival. It is what all caregivers are trying to focus on. Just getting through each day. Sometimes, just getting through each moment of each day. It can be a struggle that is not only overwhelming, but is unfathomable to those not facing the grueling tasks faced by care providers.

If you are lucky enough to survive, you then face the guilt, the loneliness and the void left behind. The day you waited for and at times, ashamedly, looked forward to arrives and you long for the days of having your loved one back. Even if they weren’t really themselves.

I have tried over and over to put my finger on exactly why it is so much more difficult to be a caregiver for someone with dementia than say, a child, or a cancer patient or someone who has had an accident and is no longer able to care for themselves. What makes it more frustrating? More isolating? More incomprehensible?
Arguably, there are several reasons I have come up with and I am sure several I am missing.

I believe it starts with just trying to get a diagnosis. It isn’t a pain in your stomach or leg that leads you to the doctor to get tested. It is a change in your behavior. It is the inner workings of who a person is that’s morphing, almost at an indistinguishable rate, into a new and unknown being at times that causes the initial concern and frustration. So by the time you get to the doctor there is probably already family tension or things that have been said or done causing much stress. Then it isn’t a simple blood test you take, but a series of tests to tell you all of the things you don’t have. And you wait. And you wait. And you wait. Sometimes it can take years to actually get a diagnosis.

You are told it is Mild Cognitive Impairment (many doctors don’t go straight for the jugular with a dementia diagnosis, they lay it on easy at first). While giving this vague diagnosis, many families are not told what is REALLY going to happen. They aren’t told to get their legal affairs in order, get financially ready for help down the road, start taking those trips they have been putting off, making end of life decisions, funeral decisions, etc. All of these things should be done while the person afflicted still has some mental capacity to help, but all too often, no one is told. It seems they are fine for the most part and certainly will be for a while and things are put off. No one is there to guide you and tell you what is next, what you should be doing and what to prepare yourself for.

Time. Time is another component that makes this path unusual and stressful. I always thought I was just a morbid, uncaring person to want a timetable. I wanted to know how long we had as a family. I wanted to know how long Jim would be at home, how long he would be in a facility, how long he would be able to be a Dad, a husband, a lover. I kept focusing on how much time we may or may not have. It seems I am not alone in this thought process after all. As I speak about our journey and meet other caregivers I have learned most humans are programed to need some sort of guideline and have an idea of a start and finish. Dementia patients are all so different it is nearly impossible to get the timetable we search for.

Physical ailments are easier to spot, easier to understand and comprehend. Even with cancer, many going through treatments lose their hair, their skin changes, they may lose weight. It is something tangible to see, to understand and to empathize with. If you have a stroke and can not walk by yourself, it is visual. It is something you come up with a plan and a way to handle it and move forward. You may go to rehab. You may use a walker. You may eventually get a little better. Or not. Either way, you know the worst it is going to get and you restructure your world to fit your new self.

With dementia, you never know what the day will bring. The loss of faculties ebbs and flows with the growth of the plaques and tangles in the brain. One day they may block a persons ability to tie their shoes and the next day they may be able to recite word for word their favorite poem. They may know you, they may not. They may walk perfectly fine, they may shuffle along. They may understand time, they may not. It is all a crap shoot. Each day brings new challenges, new sadness and at times, lights of awareness and happiness that comes with a person you love so much recognizing something that was special to you both years ago. And it isn’t physical until much later. There were so many times I was told how good Jim looked, how he didn’t look sick, that they didn’t think anything was wrong with him because he looked so healthy…. Over and over I felt as if I was either imagining all of the things that I knew were wrong with Jim, or I felt as if others were second guessing us all the time. If he acted fine one night out with friends then we must be imagining his varied symptoms at home.

Although Alzheimer’s is a disease, the care needed for a person with this disease is not covered by insurance. For example, if you have something broken such as your arm, your insurance covers the cast, the rehabilitation and any other items needed for your physical ailment. Alzheimer’s affects the brain and although we all know the brain controls every function in our bodies, the affects of this disease is not covered by insurance. So, insurance may cover the doctors visits, the medications and even some cognitive therapies or occupational therapies, the daily assisted living help needed is not covered. Only if another medical condition is warranting assistance, such as monitoring of blood pressure, diabetes, or the like. What is called companion care is not covered, even though it is needed just as much as a cast or a pacemaker may be. So, there is a stress financially that is seldom seen with other ailments. This isn’t to say there is not financial burdens incurred with other maladies, but the costs are extremely high and very hard to determine for how long these costs will be incurred (again, we go back to that time thing).

There is still so much misunderstood and unknown about Alzheimer’s Disease and other dementias. Most people aren’t comfortable talking about their diagnosis or their constantly changing mind. They are scared. They are unsure of what to do or where to turn and as a society we have not caught up with this crisis.
So, caregivers are just trying to survive. And they will. You will. It won’t be easy and it may not be pretty, but you will survive and you will one day look back and not know how in the world you did. Then you will look back and know you would do it all over again for just one more day with them. One more smile. One more conversation. One more chance to not get frustrated or to sit quietly and know that there will eventually be an end. Stay strong my friends. We are all in this together.

16 thoughts on “Survival

  • Judi Knight

    Karen, you are so right about dealing with other people who say “George seems fine.” And then they look at you and you begin to defend, explain, justify, rationalize when you just really want to scream at them. I want to scream that he is not fine but he has worked extra hard to cover up, to compensate for his declining abilities.
    I want to scream, “Come live with him for a few days, a long weekend, or better yet, a full week. Then tell me he’s fine.”
    I really just want to scream… and scream …. and scream.
    Thank you for sharing your feelings so I don’t feel so crazy.

  • Joanna

    Wow, cannot believe these words today. Could not have come at a better time for me. You reference everything I have been going through. Thank you for this article, much needed and perfect timing.

  • Pat Taubler

    Karen you hit the nail on the head, I have been through all of this for the past 15 years. These days I can not wait until I see Tom and I cry all the way home. I know our days are becoming limited and I just want to be with Tom. I long for the days of our closeness. I am constantly on the verge of tears.

  • Joyce Wyles

    Your story is amazing. This is exactly me how I feel about my Son he is 48 the Dr says Alzheimer’s . This is awful he is already wearing depends 24 hours a day. They put him on the Exelon patch and next. Week he will go on Numenda. Thank you for sharing your story I have been looking for someone with a story like ours and yours was May God give us strength as we look to him in this difficult time.

  • Anne Ondraka

    This is the first time I have gone into the help for caregivers site and found it comforting. I understand better what I am feeling at times, I understand better why outsiders don’t understand because my husband looks fine. It’s his mind that is sick and disappearing and no one can see that. But he is very angry and of course takes it out on me, the dirty looks are hurtful, he is constantly threatening to leave although he has no place to go. On the bright side he still complements the meals I prepare for him and he enjoys eating, so I am thankful.

  • margaret Janssen

    Karen, thank you for sharing, it does seem like the end will never come and sometimes I wish for it and then again I feel guilty because I love my husband, as the comments say, when people see him, “oh, he looks good” they don’t understand how lonely it is not having your best friend alongside and being able to discuss every day life with him, he hears but he doesn’t comprehend. After two years, only now I get a diagnosis of Vascular Dementia and maybe there might be a pill like Citalopram or Escalopram to help after all the blood tests are done. Thanks for listening. Mar

  • Vicky Hunter

    One yr ago today, my Dad, thankfully passed on. I know by the way he looked directly at me as he took his last breath he was saying Thank you & I Love you. Disparaging remarks to me in the early stages were slighted as I knew it wasn’t the loving Dad I’d always known.The 7.5yr endurance was a challenge then & today am still dealing with the effects.It was mentally,emotionally,physically & financially draining. Now as I ponder the next chptr in my life, all I would change about that one is that he would’ve felt great joy embracing wonderful memories. RIP Papa … Blessings!

  • Kathy

    Wow, you said everything I have always felt, spot on! My husband passed away in June 2015 after an almost 10 year battle and I survived. There are many days I wish I could have back now that he is gone even knowing how extremely difficult it was. Thanks for sharing this insight into our world, I think it will be very helpful to those still in the midst of it all.

  • Kay Sims

    Lost my Husband James to Alzheimer’s 1-17-13 still miss him so you have said what I’ve ask myself a million times (66 yrs old had since late 50s but didn’t know he hid it good until it really got bad) I took care of him for five years so right it was so confusing & I was exhausted all the time it 24/7 he was a very happy go lucky guy outdoors man cowboy Hunter I knew nothing about the damn DIEASE so I just did what he needed I’m still have health problems from trying care him but would do again we were married 46yrs. so we many times said or thought same thing we last yr &

  • Stella Tiscareno scarborough

    If only people knew what Inwent through. Doesn’t really matter. No one really understands unless they have been through it. My husband, a brilliant neurosurgeon had dementia. Not sure if it was Alzheimer’s or vascular dementia. Didn’t matter. They presented so similar. I was a critical care nurse who took care of him till his final breath. It was so incredibly hard. Even for a nurse. Approaching a year that he has been gone. I would give anything to spend one more day with him even though I went through hell. Hurts so bad

  • Mike Stanford

    In my case, my wife (Marcia) was diagnosed when our kids were 10 and 15. She passed away when they were 14 and 19. I was working full time too. Caregiving for me included not just caring for, or ensuring 24 hour care for Marcia, but balancing that with activities our kids were involved in. Trying to protect their childhood was critical. One could argue any other caregiving roles would require the same balance. But explaining to a 11 year old why their once vibrant mom didn’t know which end of the fork to hold is unique to Alz

  • deljerb@comcast.net

    Finally, told as it truly is!

  • Jenny

    This really hit the nail on the right spot! Thank you for sharing! It truly is the constant change of mind and mood that can be a maddening affair for the caregiver! God bless you.

  • Pam

    So true, Karen! In addition to all of the points you made, one that I feel makes this so hard is that the “patient” can do practically nothing while suffering from this affliction — with physical ailments, one can still read, talk, reflect on the past, tell you he appreciates all that you do for him and ask for help when he needs it. With this disease the caregiver often has to guess what to do and hope that it’s the right thing, always second-guessing. Thank you, Karen, for all you have done over the past few years to help us all feel less alone.

  • Susan

    Thank you Karen for your continued work for Alzheimer’s . I just wanted to make one comment. Alzheimer’s is an illness for the caregiver. If a person suffers from cancer, that person is in control of their destiny. They are usually in pain and suffering alone. A person helping to care for them is more of a support team. With Alzheimer’s, there generally is no pain until the end stages. The person having Alzheimer’s goes about their daily life not realizing the things they do or the impact of their behavior on others. It is the caregiver who suffers from their destiny. Sad.

  • Kelley

    Thank you for this. I am the only caregiver for my 90 year old Mom. It’s emotionally, psychologically and physically draining. The repeating over and over and over, the anger issues and everything else that comes with this disease is so overwhelming for me and it’s daily with no help.
    I love her she’s my Mom and she would take of me if the shoe was on the other foot. So, I continue on and I will survive. I don’t look forward to it being over because she will be forever gone…….

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