She lays in bed for up to 12 hours and will not get up to go to the bathroom because she wears depends, which, after 12 hours, makes her drenched—we try to explain to her that this is not good for her skin and will eventually cause breakdowns. She does not eat unless cooked, and we sit the plate in front of her. She has slipped down (not fallen), but uses these incidents and states, "I do not want to fall." She has home health twice 2x week for physical therapy and an aide that comes 3x weekly to assist in showering. What else can we do?
Then I would have her evaluated for dementia as it definitely sounds like she has some mental decline going on.
It also sounds like her care is really beyond what you or anyone else should be doing in the home.
Your mom really now needs to placed in a nursing facility where they will change her diaper every 2 hours or so, and will get her out of bed in a timely manner.
Maybe if she knows she's going to be placed in a facility, it may motivate her to do more for herself at home, who knows? But I wouldn't hold my breath on that. She really needs to be placed sooner than later so you and your family can get back to just being her family and advocates and not her caregivers. And if money is an issue you can apply for Medicaid for her.
I wish you the best in finding the appropriate facility for your mom.
The truth is that if she is COMPETENT and ABLE then it is time for the "sit-down" in which you lay down the law. I would simply say:
"I so sympathize mom with your exhaustion and your feeling you don't want to try anymore, but the truth is that you will not be able to stay with me if you make yourself, for the most part bedbound. We will have to seek placement and care for you if this continues".
I am sorry, but it is the simple truth.
You may first want to discuss with her a full physical and a discussion with MD about low-dose anti-depressant.
The truth is we get tired. I am 82. We get VERY tired and quite easily and I still can remember my Dad saying he loved life, had had a wonderful one, but at his early 90s and still well he was quite simply DONE WITH IT. He was simply EXHAUSTED with it. I so now identify with him. We get ready to go, to be honest. Why stick around for the further losses? For the next Survivor season on CBS? Really. We have been here and done this. We don't see a whole upside ahead.
I remain very active, but the reason is that I know as an old retired RN, if you stop at this point you are down for the full count. You HAVE TO keep moving. You HAVE TO find interests. It is not a luxury you can afford to simply go to bed and pull up the covers, tho that's what my dad wanted. He would laugh and say "I am SO ready for the last long nap."
Then after a while in AL she stopped getting out of bed. No real medical reason. I think depression, anger, childish rebellion. Now she's in LTC because she lost her muscle mass and can't walk. All this behavior was an indication of her dementia, which starts very gradually and then by time close family members really see it on display weekly or daily, means it is already moderate dementia, not mild.
Your Mom may need meds for depression to start with. This may help make any future changes possibly go better. Hopefully she has a PoA (is it you?) Once she gets a formal diagnosis she may no longer be able to legally assign a PoA so you need to have this happen in the right order.
When you ask, "What else can we do?" I'm wondering what is the "do" part that you haven't already tried? Perhaps you are in a little denial about her cognitive impairment. I get it... it takes a while to internalize this reality. There's no cure for dementia so you need to think about how much more "doing" you are wish to participate in daily? It may be time to ramp up her in-home aids and then think about whether a MC facility may be in her future.
You ask here what more you can do.
If you want to keep her at home, she will need more care. You need to start diaper changes every few hours. You will probably need to do it, unless you can hire someone 24 hours a day. Try adult diapers or incontinence "briefs" rather than depends. And you can place washable or disposable bed pads on the bed and her chair.
If she refuses to have someone change a diaper for her, and she is still able to toilet on her own, try a bedside commode. She can lift herself from bed to commode without the walk.
If you are unable to meet all her care needs at home, she needs to be placed in a care home.
Lastly, don't try to explain to her why her habits need to change. It's futile. I'm sure it hasn't made a difference so far, and it won't. But, you're right, she can't lay in urine for 12 hours. So, that's the first thing I'd try and find a solution for.
Good luck and hang in there. It's only going to get worse, not better.
sometimes parents battle with their siblings but they cooperate with others
Very annoying
they need to set a routine in then you can continue it
She’s been there two months and we’ve seen a marked decline and she is behaving in ways you have described.
She has been on antidepressants but it hasn’t helped. She just wants to lay in bed or sit in a chair and pretty much do nothing for herself.
I feel the AL environment, while wonderful, was a bad choice. We are now having to consider a nursing home because she won’t bathe or go to any of the meals at the dining room. She won’t even make a cup of coffee.
if you have the budget AL dementia care is where someone like this will receive round the clock care.
AL doesn’t seem to be the solution we were hoping for.
This type of decline with our loved ones is very difficult to understand and difficult to know what’s best for them.
If so what do the Physical Therapists say about her progress?
I can not imagine that insurance will continue to pay for therapy if she is making no progress.
Is mom cognizant?
If mom is cognizant and she can get up and move around why are you bring a plate to her? She can sit at the table and have a meal just like everyone else.
If mom is staying in bed then it is up to you or someone to change her out of her wet and or soiled disposable incontinence underwear.
Start trying to get her up out of bed at least every 2 hours. If she refuses or says she can't get out of bed then you must change her while she is laying in bed. (If she is cognizant I can not imagine that she would go along with this but it has to be done) The other problem with her remaining in bed with wet underwear is not just skin break down or possible UTI's but she may begin to develop Pressure Sores. They will be difficult to treat if not caught early and can be the beginning of the end.
If mom needs a walker to help her feel safer have the Physical Therapist fit her for one and show her how to safely use it.
You can not motivate her and you can not force her out of bed.
What you can do is decide if this is what you want to do for the next 5, 10, 15 years (you do not mention mom's age nor any possible medical conditions) or do you want to look for AL for mom? (given the fact that she refuses to get out of bed it is possible that no AL will take her and you will have to look for Skilled Nursing since AL facilities can not use equipment to transfer people and if she is more than a 1 person transfer then equipment will have to be used.
about this possibility .
Look at the AFDL and IADLs and see which of these she can manage. Feeding herself is the only one you mention. That can go away as well.