Mom naps and stays in bed most of the time. My mom has Alzheimer's, and no longer cleans her apartment or bathes, and she forgets to take care of her cats, though she loves them. As a result, I keep her apartment clean for her, feed/water the cats every day, and got her signed up with an organization that sees to her medical needs and also picks her up every day, M-F, for 4 hours at their center. While she's there, that's when I get her cleaning done, because she gets really angry when I help her with anything -- we tend to fight a lot if I try to clean anything up or help her with stuff. "I can do that!" she screams, if I try to help with anything.
ANYWAY, what makes me ask my question is that increasingly, she spends all of her time (when she's not at the senior center) napping on her bed. She's turned it into a kind of nest, as I find crackers, applesauce cups, newspapers, magazines, etc... in the covers when I go in to clean. When I call or go to her door (she lives in an apartment in my house), I usually wake her up, no matter what time of day or evening it is.
Today, when it snowed and the senior center was closed, I had her up to my part of the house for lunch and to watch TV while I was working, and after about 4 hours she wanted to go back downstairs. I'm working again and won't be going back down to see her until about 10 pm to give her pm medications.
Does anyone know what it's like in her head? She can't really read anymore (and she used to read all the time), as she labors to read me a headline in the paper if she's trying to make conversation. She doesn't watch TV, I think because she can't follow the show, no matter how simple. She'll watch a sitcom with me, and will laugh at the appropriate moments, but she's not following the plot as she often gets confused when the commercials break in. "Why is everyone driving?" she'll ask, because she can't tell it's not the show anymore and it's now a car commercial. I spend about 2 hours every workday evening with her, until she gets sleepy, so it's less likely she'll go outside or wander around after I've gone to bed back in my part of the house. She does sleep through the night now that she's getting melatonin with her p.m. meds.
SO... what should I do? I work from home some of the time, and much of my work requires quiet (I record training materials), and the rest of the time I'm out teaching. My husband's schedule is virtually the same. I can't have her with me every minute she's not at the senior center, and I can't go down to her apartment and hang out with her when I need to get work done. Is she bored and lonely and tormented when she's alone? Or are her thoughts getting so sketchy that she doesn't realize how much time has passed? I know if I was home-bound, I'd be reading and watching movies and calling friends, but she can't do any of that anymore. Is she miserable?
I can't afford to bring in companions, and she won't have it anyway - I tried having someone come to help her clean (and "visit") and she wouldn't let them in. The weekends are bad because she doesn't go to the senior center - and I'm often working or trying to spend some time with my husband - going to lunch or a movie - and I need time by myself to decompress. How horrible are those hours she's by herself, dozing in her bed and reading headlines over and over or looking at pictures in magazines?
I'd love to know how other people's parents are in the moderate to severe stages of Alzheimer's - to the best we can figure out, what is it like in their heads?
Her mobility and delusions could lead to a dangerous situation. My MIL had Lewy Body Dementia which is similar to Alzheimer's. No way could my MIL be left for such a long stretch in the mid to late range. It is scary for them.
When she refuses help, I'm afraid your going to have to resign yourself to the fact that you are not dealing with a rational person. It's tough love time for their own safety. Sorry to say, but you are the "parent" to your parent now.
My hope is you already have a DPOA (durable power of attorney) in place to make decisions for her. If she does not have the funds for a memory care unit or NH, you need to contact Medicaid as it sounds as if she'll need 24/7 care soon.
I don't envy you. You're between a rock and a hard place. A lot of us here on AC have had to forgo employment when the reality of our parent's disease hits. It's not a fun place to be. Their safety takes priority, be it in our own care or with a placement.
I wish you strength and wisdom in the days ahead.