Alzheimer`s Disease/End stage alzheimer's

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Question
Mary, it has been a year since I wrote you about my mom.  How she has lived another entire year has baffled everyone involved in her situation.  She weighs less than 60 pounds, and hasn't eaten real food in all that time.  She has existed on Ensure and ice cream, lying in the bed.

Two weeks ago she declined drastically and suddenly.  She is taking in about 4 oz of Ensure and a small helping of ice cream daily.  I am with her all day and this is the best we can manage.  

How long can she live like this?  Her vital signs yesterday were perfect.  She looks awful and can barely hold her eyes open.  She did manage a smile today though and it was such a gift.

Thanks, Mary.  This has been the most unbelievable journey,

Leigh

Answer
Hi Leigh, I remember your e-mail from a year ago! What a marathon you've both been on. Up hill through the thorns. I truly feel for you. You must be exhausted. You must be a very strong and loving woman.

Your mom is made of tough stuff - but as I've observed before, people in late stage are both as strong as steel and as fragile as glass. They live on when it seems impossible, but they also can be tipped into a final spiral by something that seems insignificant. Right now, I suspect she has no reserves at all left to fight with. Her body has been consuming itself to keep her going - she isn't taking in enough calories to keep even a 50 pound child alive. I suspect she's into the final time. It's very hard to predict how long - if she got even a minor infection like a cold, it would likely overwhelm her. At best, I would think another month or two.

What you are seeing is part of the natural process. My mother in law's last months were similar. We were carefully hand feeding her but she got thinner and thinner and slept more and more. She was like a shell - I just couldn't believe anyone that thin could be alive. About 6 weeks before her death, she started to refuse to open her mouth. I'm not sure it was a conscious refusal. I think she had just lost any idea of what food or drink was all about or why she should bother with it - and the whole process seemed like a tiring annoyance to her. I genuinely believe they don't feel hunger or thirst like a healthy person - or if they do, they don't recognize it means they need something. So, she took in less and less no matter how many times a day we tried and eventually just stopped. Even then she lived on for longer than expected - another week or so.  Honestly, she did not seem to be suffering at all. She was very peaceful and relaxed. We were the ones who were anguished, even though we knew it was her time.

All kinds of guilty thoughts run through your head - that belief you should be doing SOMETHING to help, when the only thing you can do is sit by them, hold their hand, moisten their lips, brush their hair - and wait. We also prayed that something would mercifully carry her off before the natural end of her dementia, and felt guilty about that as well.  We were like you - we just didn't want her to suffer at all.  The only good thing about dementia is that your mother will not be plagued by any fears or regrets. She's long past that - it means she will be serene and only in the moment.

Signs the end is closing in include being less and less responsive - in her last days, my mother in law was oblivious to her surroundings - like she had already vacated her body, but was being held to earth by a strand of spider silk.  Your mother's urine will get very dark (like strong tea) from the lack of liquids, and this means her kidneys are shutting down - which brings on a merciful coma. Her hands and feet will become cool and you may see some mottling of her skin and bluish nails from lack of circulation.  Her breathing may get irregular (they often will breathe rapidly and then have long pauses between breaths) and she may rattle a bit from secretions.

We're not used to witnessing the natural end of life in modern life. So often loved ones die in hospital and everything is a big crisis of tubes and drugs and procedures and machines and running around in a panic. I hope you have some hospice support to help you all through this - they can be wonderfully compassionate, which you need as much as she does. I looked on our experience as a privilege in some ways. It was a quiet space where nothing mattered but being there with her. We regret that my mother in law ever had to go through any of the indignities of dementia, but we don't regret the way she passed. She was as comfortable as was possible, and surrounded by peace and caring. It really was a good death in the end - and being there for her was a rare opportunity to grow as human beings. It was a profound experience - and put into perspective what really matters.

I know what you mean by the gift of a smile. It's the small memories and gestures that mean everything.

Thinking of you. Peace is coming.

Alzheimer`s Disease

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Mary Gordon

Expertise

Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.

Experience

Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!

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