She sits staring blankly or sleeping unless I entertain her with picture books. She won't read, play piano, X-words. Do I need to keep her entertained by MAKING her look at picture books, taking her for walks, looking for what is different between 2 similar pictures, make her play hymns on piano etc etc or is there no benefit in forcing her to stay entertained? She never argues about doing the activities but I am doing all the work and entertaining because I feel guilty letting her just doze in the chair all day after sleeping 12-14 hours all night. She sleeps 8pm until 10:30 AM and I have to wake her up to eat breakfast. She is ready to go back to bed at 1:30 and sleeps all afternoon until I wake her up for supper at 6pm. If I constantly keep her entertained by taking her outside for walks in the wheelchair, doing her PT exercises with cans of soup and getting in and out of the chair without using arms, and marching around the house, or looking at books, she will stay awake, but I can't tell if she enjoys it or would rather I just leave her alone and let her sleep. Is there any real BENEFIT to keeping a 98-year-old with moderately severe Alzheimer's entertained? It takes a lot of my time and is emotionally exhausting when she won't remember 5 minutes later that I did anything with her. I do the PT and walking so she won't lose her ability to walk around the house and help me get her out of the bathtub.
Given your mom is 98, you are presumably in your late 60s or 70s. I think you should spend more time on what you want and need. No matter how much effort you put in on your mom, both her mental and physical abilities are going to diminish. Sadly. But you still have time to see friends, work on hobbies, get enjoyment out of life. And when she passes, it will be good that you already have a regular lunch with friends or garden club or church or whatever it is that brings you joy.
Health professionals will sometimes tell us to do all the things that prolong life, as that is what their training gears them towards. However, I think that they should also consider the health and wellbeing of the family caregivers. Especially in the US. (I'll explain why I think this at the end.)
Here, in the UK, the GP was much more pragmatic. He told me to stop doing so much for Mum (not to stop caring for her, but to not wear myself out trying to keep her active and engaged all the time) and to look after myself more. He explained that Mum would continue to deteriorate - dementia can't be fixed - but that I still had my own life to live. His words were that this is "a marathon, not a sprint" and that I had to pace myself.
The reason I feel that American healthcare is slightly different is from the reading I did when my dad had cancer. He was abroad during Covid when he became paralysed from cancer spreading to his spine. The doctors there were not giving us enough information, or even the truth, so I had to read up on it myself.
I was fortunate to get hold of his doctor's notes (I spoke with admin and as I was also in charge of ensuring the hospital was paid, they just sent everything!) from which I worked out that my dad had lung cancer (we weren't told this) and that the bone cancer was secondary. So, he had advanced stage 4 cancer, with little time left. He was dying.
The doctors told him that they would treat it aggressively and cure him. I knew this wasn't true, but I didn't know what should be done instead. This was March 2020 and I had nowhere to turn, but the internet.
I read medical papers from Kings College Hospital University and from Harvard, as well as other medical centres and universities. I found out that the American medical standard practice (until fairly recently) had also been to continue treatment, even when there was no hope of recovery.
However, that was changing; the paper in question was advocating palliative care for end stage cancer, which is the standard in the UK. I got the impression that many practitioners were already moving towards this model, but that more still were wary about stopping aggressive treatment for cancer.
This particular paper accounted for the difference in treatments for incurable cancer by proposing that there are differences of perspectives about healthcare in the US compared with Europe, which meant that many doctors in America were uncomfortable with stopping attempts at curing cancer even when there was no realistic hope. The paper's author was an American palliative care doctor and he wanted to persuade oncologists to work with palliative care teams for their patients with incurable cancer.
I wonder if this attitude, about trying to preserve life at all costs, is why so many people feel they have to continue PT for their loved ones way past the point that it can actually have any real positive effect, or why so many are concerned about their LO's with late stage dementia not eating proper meals, but wanting sweets and milkshakes.
Movement is necessary, but not when a person is clearly winding down and is unlikely to live long. Then, it's just a matter of keeping the person comfortable and pain free. And of the family caregiver to continue living and being present in the world. Otherwise, what do they have to fall back on when they, inevitably, are left grieving for their loved one?