New Year: New Lessons About Alzheimer’s Disease

Posted by in Louise Behiel | 23 comments

On Thursday, I took my mom to another specialist’s appointment.  She has Alzheimer’s Disease, a form of Dementia.

Dementia is the scourge of the modern era.  As more and more of us live longerr, the illness is increasingly common. We, the sandwich generation, are dealing with adult children and grandchildren while also dealing with our failing parents.

What is Alzheimer’s Disease?

Most of us think we know about the illness, but as my mother’s path into this terminal illness continues, I’m learning more than I ever wanted to know.

AD begins with the gradual loss of short term memory.  Mom tells the same story over and over and over again.  Usually in a five minute period.  We don’t have conversations. We are taken hostage by her need to share the details of her life – details she doesn’t remember sharing.

But AD is more than simple forgetfulness. (You can all wipe your brow now – this probably doesn’t apply to you.) AD begins with the normal forgetfulness of aging but morphs into a monster than takes away short term memory, eventually robbing us of our ability to recognize our loved ones. If we live long enough (and this is happening more often) we end up in a fetal position, unable to feed ourselves or control our body functions.

AD includes the loss of the ability to think and reason.  It is critical to have a personal directive, which names an agent to act on your behalf, and an enduring power of attorney to manage your finances. In a perfect world these are two different people, who can keep your best interests at heart and yet have different responsibilities. (More about this in a future post.)

AD may include a change of personality.  People go from sweet and kind to absolute terrors, nasty, bitchy and mean-spirited.  I have participated in a discussion of the placement of a white-haired ninety year old woman who’d become increasingly violent as her disease progressed.  She had become a real threat to the other residents in her long-term care facility. Unfortunately, nobody wanted this lady as a resident but she was much too far gone to live alone or with family.  Eventually, we were able to find a place, but only under a bit of duress and a living arrangement with a higher number than usual lock down hours – because the lady couldn’t be allowed to wonder the halls.

AD usually includes fixation. People get an idea in their heads and that becomes their only reality. For my mother it’s diarrhoea. To hear her tell it, she can’t leave her apartment because of this problem, and yet there is no evidence of chronic, on-going bowel problems. This fixation may center on noises around them, or bad neighbors, or adult children who are rude, never visit or are stealing.  The idea is irrelevant. What matters is that it becomes part of the fabric of their reality, even though the rest of us don’t see the same thing.

AD may also include depression and anxiety. Both are fairly predictable when we consider the realities of the illness.  Who wouldn’t be depressed if you honestly believed no one came to visit? If you honestly believe that you are all alone, isolated and forgotten?

And of course, if you’re unable to remember how to do simple tasks (recently mom couldn’t remember how to use her washing machine) you will be subject to panic attacks. In mom’s case this has resulted in one trip, via ambulance to the emergency department because her pulse skyrocketed and she had resulting chest pain.

Aging is not for sissies. And the diagnosis of Dementia is difficult. Alzheimer’s is a huge challenge – for the individual and their family. I’m lucky. We have a big family and we all play a role in helping mom, with each of us taking different roles at different times. But it is important to remember that dealing with this illness is a long haul. (Average life expectancy can be from five to twenty years.) Pace yourself. Be gentle. Know that it is not always easy and some days are plain awful.

I will be sharing more of what I learn and experience as we travel this road. Hopefully we can all learn something. I’m hoping these posts will help me remember that my mom has an illness. Her behaviour is not her fault. I can’t expect her to change. There is no point losing my patience; nor is there a point in sliding into her dramas.  Because none of this is real – it’s all about Alzheimer’s Disease and the price it demands from victim, family and friends.

 

 

23 Comments

  1. I am just stopping by to say I am thinking of you and hope you’re doing okay.

    This post pierced my heart when I first read it and does again re-reading it. My Dad passed away April 26, 2013, only after suffering with Dementia and the crazy brain stuff that goes with it. It broke my heart to see him declining, especially since I have a Brain Injury, I know a lot of the invisible and horrific path unseen to others. Dementia and Alzheimer’s are an insult to humanity, both I wish dearly, I had the power to change.

    My heart is with you and your family.
    Resilient Heart recently posted..Days 9 and 10 with Dad (Thurs. April 25 and Friday, April 26, 2013)My Profile

    • thanks for stopping by. Yes I’m okay but between crazy times at work, my mother, my kids and writing, I have been busy. mom continues to decline and all I can pray for is that she doesn’t last too long. adult diapers and no independence is not the way she’d want to live, in my opinion. stay well

  2. Oh, Louise. I am so sorry about your mother. Understanding what we can about AD is helpful, so thank you for this post. But AD is a terrible disease that is very painful to watch progress in a loved one. And nearly everyone of your comments include stories about relatives with this awful disease. My heart goes out to each and every one of you.

  3. My uncle had Alzheimer’s and it was difficult to watch his decline. I hope one day someone will find a cure for this disease but sadly, it probably won’t come in our time. Thanks for the info.

  4. Alzheimer’s is such a horrible disease. My great aunt is living with it right now and she’s going through a terrible patch where she believes people are trying to drug her. She’s refusing to take her medication. It’s awful. She still lives at home with her husband but he’s elderly too. It’s so sad.

    • so often we find that the support of a person with AD is another fragile senior who is dealing with their own issues. so very sad.

      • He loves her but he’s battling cancer right now. She’s refusing to eat, drink or talk to anyone. Part of me wishes she would get better, part of me recognizes she probably can’t any longer. Tough tough road ahead for everyone.

  5. My great aunt has it. She is in a home and no longer recognizes any of us. At first her conversation would lag and then she would mix up sentences. Now she doesn’t say much at all. It’s sad and puzzling how it happens so fast. I even wrote a little about it in one of my stories. I mostly hope she is not aware of what’s happening–that seems terrifying to me. Thanks for the information Louise.

    • My mom is at the worst stage, I think – she’s forgetting and easily gets confused and knows what is happening, so she’s constantly anxious and depressed. very sad. I’m sorry to hear about your great aunt.

  6. My step-father’s mother went through this. It’s such a scary thing. My sympathies to you and your mother. I appreciate the extensive education on this sad and horrible disease. Thank you, Louise.
    Debra Kristi recently posted..Where In The World…My Profile

    • It seems that everyone’s life is touched by this illness, in some way. It is so scary to watch the progression of the illness. Take care Debra.

  7. Louise, At my mother’s funeral, I referred to Alzheimer’s as “the prison house of the soul.” It is a scourge that we must address. I write about it often, but still believe it is a hidden disease, a plague no one wants to acknowledge. Thanks for spreading the word about AD. Maybe we sill see a cure in our life times. Regards, Stephen Woodfin

    • My sympathies on your loss, Stephen. I totally agree – no one wants to talk about it, or get a diagnosis. it’s like it will go away if we ignore it. NOT. Here’s hoping for a cure.

  8. Alzheimer’s is a horrible, horrible disease. Both my husband and I had grandfathers with it, and one of our friends has lost his wife to it. She’s still alive but no longer even recognizes him. Thanks for the education on this devastating condition – I’ll look forward to learning more.
    Jennette Marie Powell recently posted..Blasting off for 2013My Profile

    • Jennette, how terrible for both you and your husband. and your friend – who’s wife is alive but no longer his wife. so tragic. I think it’s so important to talk about this illness and so many others – we seem to be afraid to look at so many things. Happy New Year

  9. Yikes Louise, that’s some scary disease. It’s so hard to watch our parents suffer as they get older. And some of us are right behind them. It’s so much stress not only on the patient, but also the family members. Thanks for the info and I’ll look forward to future posts on this subject. Oh, and it’s great to see you Louise! {{Hugs!}} 🙂

    • thanks Karen. it is very scary. I’m lucky we have a big family to share the load.

  10. Thank you for this post. It is so thoughtful and educational. My husband’s father ‘may’ have alzheimers and we know it might be a long haul with much heartache. I’m sorry about your mother.

    • The best thing is to get a diagnosis as soon as possible. there are good meds available today. they put off the losses of the illness and gives them a chance to live a good life. so sooner is better than later. get on meds and get to work on the modalities to help your brain function. good luck.

  11. Thanks, Louise. We went through this with our grandfather and I think grandma is in the beginning stages. She lives with mom and she constantly yells at her that we didn’t tell her something, when we’ve told her several times. Getting old is hard.

    • I’m so sorry to hear about your grandma. getting old is not easy.

  12. Another compassionate look at the things that plague the human mind. Thanks, Louise. My 85-year-old Dad is in care, too. Though his mind is still sharp, his body has quit on him. Growing old sucks!

    • It seems we lose out either physically or mentally, don’t we? such a shame.

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