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My husband although healthy, in that Alzheimer's is his only medical problem. He can walk without assistance, he has no long or short term memory, he can't do anything for himself. He eats well, food is minced, they have trouble getting him to drink enough. He has a few words, but mostly garbled when he does speak, which is getting less and less. He stands all the time and they have trouble getting him to sit. He just came through a bout of pneumonia and has recovered. He knows I am the one who visits, but not my name or that I am his wife. He is getting wonderful care in a Long Term Care Facility. It just seems a forever journey he is 74.

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People did get dementia before we had long term care facilities. Then family members, almost always female wives or daughters, took care of them. What they did NOT get was anything that would prolong their lives, and when they stopped eating that was it. Cruel? No more so than today's insistence on prolonging life at all cost. My great-grandmother had dementia, but because both my grandparents worked my mother with my newborn baby sister, was brought in to take care of her. My father was a traveling salesman and not around much, he appreciated the "free room and board" we received. My great-grandmother lived about a year and they never had a doctor see her, according to what my mom told me. When she quit eating, they let her die, keeping her out of my sight. Is that any more cruel than keeping someone with dementia alive and burdening younger family members? I think not. My Advance Directives say that if I get pneumonia, which used to be called the "old people's friend," it won't be treated with antibiotics, I will just be given palliative care. Why do we insist on thinking that life is better than death? I am not religious, but it amazes me that religious people seem to be the ones most afraid of dying and going to their glory.
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Mac124 Oct 2018
Arleeda - 👍
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Oh yes! Oh my yes! The last stages can seem to go on forever, and we are so helpless to fix anything. Realize that just your presence as the lady who visits is a huge contribution to his quality of life. Of course you wish you could do more, but what you can do is important.

Does the facility worry about dehydration for him? If he is eating well he is getting moisture from his food. Could he have his minced meat and vegetables in soup? His minced canned peaches in lots of syrup? The food itself provides water, and it could be prepared to enhance that.

Would he like a beer?

The dementia journey is heartbreaking! Hang in there, and be gentle with yourself.
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Carolecatherine Oct 2018
Yes they do worry about dehydration and to get liquids into him any way they can. He has never been a beer drinker, so don't think we can start now. Thanks for the suggestions.
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Hi -- I would like to suggest a support group. My dad was in the "final" stage for over two years after a long 10 year journey. He was 76 when he passed away. He was immobile, ate pureed food and drank milk shakes (if he ate). My mom and I turned down the Alzheimer's support group invitations many times, but finally decided to join. My mom thought it was depressing, but I thoroughly enjoyed it. There were people who had walk before us in the journey and those that were just beginning. I turned my heartbreak into a focus on helping others through the journey and learning from those who had traveled before me through the darkness. I don't think there's any one answer, but I received many suggestions on how to handle lots of situations and a "shoulder to cry on" from those who truly understand the journey in a way many friends and family can't. Hospice was a part of my group and they had so much information. My dad had Hospice care the last 6 - 8 months and those girls were angels on earth. I visited him every day, twice a day on weekends, at the Alzheimer's unit and, like you, he didn't know who I was or my name, but he was always glad to see me. I also joined a group exercise class twice a week (which was really outside my comfort zone) to get some stress relief after working all day and visiting my dad. You have to be sure to take care of yourself too! Don't feel guilty about taking time for your hobbies and friends.
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Alzheimer's is basically diabetes of the brain. If you treat him like a diabetic with a low carb, ketogenic diet, adding in a good multivitamin, making sure he isn't B12 deficient, and 2T of coconut oil in the am, you should see an improvement. Add some exercise, like walking. My Dad's improvement was dramatic, making life happy again. However, he suffered a fall, and that put him into the grips of Big Medicine. They refused his regimen and he relapsed (just like they wanted). I worked in medicine 34 years, retiring in 2008. Something has happened since then. Money is their all consuming concern, not health and healing. I would avoid any hospitals like the plague these days. The Shared Saving Program puts a target on every Medicare patient's forehead. And the body count is rising.
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anonymous594015 Oct 2018
It's best not to start off with two tablespoons of coconut oil. Ease into it or you might have to deal with "disaster pants!" (It can have a laxative effect.)
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I now what you mean. My mom is 93 and doesn't talk at all; doesn't open her eyes has to be fed and cannot do one single thing for herself. She is in AL facility and has been on hospice now for 10 months. I feel like it will never end. She just goes from wheelchair to bed. will it ever end?
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Yes, I can relate Carolcatherine. My LO (cousin, that I am responsible for) is in end stage dementia. (Vascular, possibly mixed with AZ.) She's 67, after diagnosis 5 years ago. In MC. She's on Hospice, can't walk or sit unassisted, can't feed herself, on soft food, double incontinent, can't talk, doesn't know anyone and is not aware of her surroundings. She does have a good appetite though. So, I'm not sure how long she has. It breaks my heart and I find it more and more difficult to visit.
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Welcome Carolecatherine.

You will find many friends here who have shared similar experiences and understand.

You have been dealing with this heart break for many years now, I see from your profile. What about you? How are you coping from day to day?
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Carolecatherine Oct 2018
Most days I feel that I am coping pretty well, but I sometimes come away from visiting him feeling depressed and angry that this disease has roubbed us of our retirement years together.
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After 12 years dealing with PPA dementia (front lobe dementia which robs him of all language) he will be moved to nursing care with hospice this week. Things progressed slowly the first few years. We moved to assisted living in March and since then he has been rapidly declining. It was a good choice for both of us since he got more care and I got to resume the roll of wife. He who does know who I am but can no longer say it. He is only 76.
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yes I feel that way. My 93 year old mother is in stage 7. She is on hospice but is not near dying, that is, she is not bedridden, still eats some if fed by spoon. Her eyes are closed all the time and she does not speak. She is mostly unaware. She has been on hospice for 10 months. I appreciate all the suggestions, however, there is nothing to enjoy; no one ever talks about what happens when the money runs out. Medicare pays for hospice but not for the AL facility which is running about $8,000 per month. Not everyone has cooperative family members.
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I read your statement with much compassion and also dread for what is to come for my mother. At present she can communicate with anyone, but only recognizes me, cannot remember from one minute to the next, and often has no idea where she is or what happened to my dad, why he is not with her. She is very healthy physically at 89. I visit her daily and right now she can be quite delightful to be with, as her intelligence and sense of humor is still the same, but looking forward I am really frightened. This disease is horrifying. I have no advice further than the other suggestions here, but my heart goes out to you.
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