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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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it can seem like forever when you just want his anguish of all types to be over. Wish there was a magic answer. Only thing helps me is self care and knowing all the loving gestures I share are meaningful and a gift to us both.
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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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You have some helpful suggestions here. I share your concerns, as my wife is eight years into Alzheimer's after two years of Vascular Dementia, so it is known medically as "Mixed Dementia." Whatever the form of dementia the final journey is certainly both difficult and different for each person with dementia and each carer. However, if you love the person for whom you are caring, there is a sense of privilege that by caring for them you are returning their love to you over the years. Does that make sense?
My wife is now house bound, and essentially in bed all day, but it is a great "hospital bed" that goes up and down and adjusts to her needs. She is still at home and hopefully can stay here. As others have pointed out, if you have carers in they should be helpful. You can't do this on your own. If you try to "go it alone" you will burn out. My wife is being spoon-fed, but is still quite aware of her situation and secure with me and with other members of the family and carers. She may not know their names, but she knows they care about her.

I learned a lot from the book "Sully" by Chesley B. "Sully"Sullenberger III who landed the Airbus 320 on the Hudson River in 2009. The book does not mention dementia, but I think landing a big plane on a river is akin to the facing the final stages of dementia--incredibly difficult but possible with proper preparation. What did I learn?
1. You have to make a lot of decisions, and make them quickly. It is often difficult to know what to do. The first thing to do is to drop your lowest goals. In the case of the plane with two failed engines, it was lose the plane that was worth $80 million and so and seek to save the passengers. In the case of someone in the final stages of dementia, seek comfort and security and what is in their best interest. It is often tough to know what is the most important goal, but I find it a lot easier to drop off the lower goals (as Sully did); and then you get left with what needs to be done NOW.
2. You work with your professional carers (and hopefully other members of your family) as a team. When you are on your own, or when a crisis arises, you are the pilot. If you have other competent people around you, become copilot, and let others be pilot. When the Canadian geese flew into the plane engines, the copilot was in charge, but the pilot (Sully) took over. Then the pilot and copilot and airport controller worked together a team. None of them went by the rulebook. Neither the copilot nor the airport controller asked any questions, because they both understood that the pilot should not be distracted. However, both were helpful making occasional suggestions; and the copilot read the instrument panel readings to the pilot so that he could keep his eyes on the water.
Whatever your situation and no matter how different each person is, there are important guidelines when you care for someone in the final stages of life:
1. Maintain or find other interests. If you focus solely on caring for a loving one in the final stages of dementia, you will not be able to cope, whether the loved one is at home, in assisted living, a care home, a nursing home or a hospice for the dying. In fact, you will be able to care for the loved one better, because you will be stronger and more able to focus when you do see your loved one.
2. READ. It can save you a lot of trouble. What you read depends on your interests. If the person with dementia is still at home, you might find helpful Jane Nicol and Brian Nyatanga's "Palliative and End of Life Care in Nursing" (2nd edition, Sage Publications, 2017).  You might well have nurses coming in; watch them; talk to them; learn how to care better.  Judith London's book "Support for Alzheimer's and Dementia Caregivers: The Unsung Heroes (ISBN: 1482375915, published by CreateSpace4 Independent Publishing Platform, North Charleston, South Carolina, 2013) is helpful. I like her opening poem: "What have I lost? (p. 5) and the poem on p. 105.
Take care.
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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 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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I am so sorry you have to go through this too. My father is 93 with AD Stage 7 also. I wish I knew the answer to your question, but I don't think there is one. It is different for each person.
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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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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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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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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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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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I suggest to have therapy for release of pain.
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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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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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You obviously have adjusted to having your husband in a LTC facility. I hope you have family or friends that you can share your life, love and grief with. It's painful to have a LO fall to ALZ for all of us. Treasure the time you have left with him. Be with him and celebrate life as if he is not sick, the best you can.
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Thank you
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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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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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