First-Time Poster Requesting Support

loyalandtrue86

Hello to you all. This is my first time to post in the forum. I have been reading a few posts that may help me with my father. At his most-recent visit with his neurologist, we were told he was at stage 6B of Alzheimer's. We have been living with what we were told was dementia for several years, and the Alzheimer's diagnosis was not a surprise.

I am an only child and the primary caregiver for my mother and father, 75 and 77, respectively. I moved them to a continuing care facility close to me last year, and they lived in independent living for 14 months. My mother has not been able to cope well with the diagnosis, and she constantly tries to correct him and ask him why he doesn't remember. A week ago, we moved him into the memory care wing of the same facility. She will remain in independent living.

Here are some issues I'm dealing with and could use some advice on if you have any. He is on a laundry list of medications, including Doneprizil, Memantine, Sertaline, and Trazadone.

• Lack of Energy/Desire: My father has had chronic back pain for 10 years following a bad fall. He can walk with a walker but constantly asks everyone around him to bring him things. This has led to decreased steadiness when he's on his feet, loss of muscle tone, etc.
• Loss of Appetite: We've also fought this problem for several years, and it keeps getting worse. He is not losing weight, which is what his doctor said would be a reason to consider changing his medication. He will normally only eat a few bites of any meal, and that's only if you basically force him. He has a full set of dentures that he normally won't use adhesive on, and once food gets under/above the dentures, he will remove them and complain that they need to be cleaned. He has so far refused to walk to the memory care dining room to eat, and I'm about to tell the staff to take him in his transport chair.
• Repeated Tasks: He has COPD and has been on oxygen 24 hours a day for about two years. He constantly expresses a need to blow his nose, whether he needs to or not, which leads to him removing the oxygen canula from his nose. Within the last few weeks, I have noticed he also thinks he has to go to the bathroom frequently. I've become used to the repeating questions (where are you working these days?).

His transition to memory care has been been a mixed bag in terms of results. He has taken well to his room and hasn't really questioned why he's there. He and my mother were already sleeping in separate rooms in their independent living apartment, so thankfully we didn't have to deal with that transition.

In my opinion, my mother is spending too much time with him now. Her message to me tonight was that she was exhausted and needed to sleep. I keep telling her this move was just as much for her as it was for him, and she needs to not stay for prolonged periods of times, especially during meal time, because it only frustrates her more. I'm considering taking her to a local support group in the coming weeks.

I know a lot of these issues are normal for patients at his stage. If anyone has any advice, I would love to hear it. Otherwise, I appreciate you reading to my venting session!

terei

I understand you are venting, but I am sure you are aware that your father is at the end of his life. The issues you mention are the progression of his terminal disease (AZ) and his other morbidities

I suggest you and probaby your mother read Being Mortal which I hope will help you come to terms with what you are experiencing. You are right, your mother is no longer his caretaker + helping her find her way under her new circumstances is the right thing to do. If your father is not wanting to eat and is losing weight, I would suggest that you have him assessed by hospice, which would be very helpful to him as well as you and your mother.

I am sorry you are having to deal with this.

Quilting brings calm

I would step back on some of these things for your own sanity and stress level.

Don’t force him to go get things himself thinking that’s going to help him be steadier with his walker. He’s going to continuing to get less steady - it’s just the natural progression of the disease. Yes, have them take him to the dining hall in his transport chair. Accept that he may be wheelchair bound at some point.

Apathy, lack of interest and motivation are also part of the disease. That’s ok- you don’t have to be his entertainment director. Too much excitement will just cause him aggravation.

Same for repeated movements. It is what it is. Yes, he isn’t getting as much of his oxygen as he should. No it’s not going to matter.

Older ill people don’t eat as much as the rest of us. If he isn’t losing weight, he Is taking in enough calories. No reason to force him to eat more. Let the MC staff monitor it.

As for your mom, ask the MC staff to help you redirect her back to her Independent living area after she’s been with him for 30-60 minutes. Have them tell her he needs to get involved with the NC activities to get adjusted. That he needs to take a nap etc.
Encourage her to start taking advantage of activities in her own area of the building now that your dad is being cared for by the MC staff.