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.
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.
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.
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?