Hi,
I have only posted here once before, but I literally go on here every day because I find it such a comfort. My parents both fell ill at the same time and they were unable to move back to their house. I had asked and then begged them to move closer to me or sell their house and move to somewhere in their area more friendly to seniors, but my Dad refused to move.
After they fell ill it was suggested I move them into a nursing home from rehab, but I found them a place in assisted living (the place they are in can take people who should be in a nursing home). My mom ended up dying about 16 months ago. My Dad moved into another room in assisted living about a year ago to get a fresh start (he picked the room and made the decisions). Now lately he has been very insistent he wants to move back to the house. He is in a wheelchair and paralyzed on his left side and cannot walk anymore. He is incontinent and has a history of severe urinary tract infections. When he gets a cold or gets ill he gets very, very sick and more and more his throat gets impacted and he has to go on a special diet with ground up food (they do that for him there). They take great care of him and they really like him. He hasn't had a bad UTI in a long, long time and he was getting them constantly when he lived at home with my mom.
I feel for safety reasons he shouldn't move back home. I am worried about trying to juggle care takers and figure out medication and food and feel something catastrophic would happen. I come back and visit a lot, but even if I lived in the house with him I wouldn't be able to help much because he is like dead weight and he needs trained professionals because of all of his special health concerns.
He seems unable to process how precarious his health is and believes he is in better health than he is. He doesn't think he needs 24/7 health care.
Does anyone have any suggestions or tips for me? He's upset he isn't getting PT, but he was cut off from medicare PT because they say he is at his baseline. I then was able to get him PT to help him transfer from the bed to the wheelchair, but he reached his baseline on that as well.
With that said, give him options for what he can do. PT (physical therapy) doesn't stop when the perceived baseline is reached, he can and should continue to exercise his ability to care for his self. Make sure he does everything he can for his self even pouring is own drink, cutting his meat so small to not choke. (Safely) Change his own clothes, brush his teeth, shaving (and cleaning the sink up) get in and out of the bathroom....... these everyday challenges we take for granted are impossible after loss of these functions. Give him things to occupy him and help with moving.... even a checker board takes control of hand, thinking and socializing. Get out of his room and make friends!
You are in a difficult place. It is emotionally upsetting to not be able to do all we want to for our parents. He lives in an assisted living facility, does he still have a house he owns? Let him know you love him and you are more than happy to do whatever you can within your means to make him comfortable. Love him, visit him and keep the thought that you are doing what is best for him. He sounds medically complex. Unless you have the means to hire appropriate care, it sounds unsafe to take him home. That may not make him super happy but that is OK because you know he is safe. Maybe he would like company for dinner or ride in his chair around the grounds. Play cards and visit as often as you can. Do the best you can to make him comfortable. The results of that will be much better than taking him home to live alone. He may not even realize he cannot take care of himself. Hugs and strength.
The thing here is this: needs are one thing, preferences are another. Sounds like Dad's needs are being met in this facility. Preferences? ONLY if it works for EVERYONE who would be helping. It is simply a matter of common sense and fairness. Fact is Dad's health is in decline - of course he wishes he could go back to the pre-decline past, but there is no time-machine. And the caregivers are just as much entitled to their lives as Dad is! And that is the real issue as far as I'm concerned. None of us have the "right" to devour another's life. And what parent, thinking clearly, would wish to?
I told my dad that he could do whatever he could pull off. No help from me whatsoever.
Can you encourage your dad to start going grocery shopping and start taking care of things that he would be handling at home? This might show him how compromised his health and mobility is. Get him to go out to lunch by himself via uber or taxi. Maybe someone you know that you could ask to pretend to be a rideshare driver to ensure that he is safe but no help from the driver. Might be a round trip with no lunch, but a lesson learned.
You can tell him that you will not be propping him up in anyway, shape or form if he chooses to make this really bad choice. Make it clear that he will be doing this 100% on his own.
If he thinks that he can manipulate you into doing things that you don't want to you may find disconnecting when the subject of moving home comes up. Ya know dad, I love you and I believe that you are exactly where you need to be to get the best care possible, I am not even going to talk to you about moving home, I think that you would die a painful death and I refuse to be a part of it. If you move, know that I won't be around. I can't watch the train wreck happen, I love you to much. Repeat as needed.
Make it as uncomfortable for him as possible to go and as comforting as possible to stay.
Can he afford to have PT come in? Maybe a personal trainer that can be trained by PT to get him as mobile as possible? Is he doing all the exercises that PT has given him for homework?
I am sorry that you are going through this. It is difficult enough without constant demands to go home.
Medicare used to stop physical therapy when the patient STOPPED SHOWING IMPROVEMENT...
Several several years back, that requirement was changed to it being acceptable to continue physical therapy if it's helping the patient MAINTAIN their abilities or functionality.
Unfortunately, some facilities either seem not to know this or never updated their standards, so they still go by "the old way"...
You might want to call for more updated information directly from Medicare about this - - having PT might be an interim reason in your dad's mind to keep him at the AL - - every little bit helps.
You are his guardian, correct? Meaning that YOU are the person charged with keeping him safe and with using his money wisely. Keeping him "happy" is a distant third.
It must be excruciating being a guardian for one's parent. There is no shame in going back to the court and asking for an impartial stranger to take over. That might be less of a trigger for your dad.
If it were me at that last "review", I would have straightened them out big time! Perhaps they would think me unhinged and take away the guardianship, at which point I would say fine, you're soooo smart, YOU do it!
At this point, clearly he is where he needs to be. They like him, they take good care of him and there is no way someone who has issues like his can live "alone." I hear you about the "dead" weight - it is one (only one) of the reasons there is no way I could care for my mother. She outweighs me by a lot and was unstable enough before the walker and now refuses to stand/walk without someone's assistance (the less she tries, the more reliant she will become, but you can't get that through the thick skull!)
While it is hard on you to say no, it would be harder to try to take this on (not to mention WAY more expensive!) Bring him little treats. Try to change the subject. Maybe you could hire someone who could come in to "play" as PT.
It doesn't sound like actual PT/OT would do any more good. We had them come in for mom, but she refused to work with them, so Medicare won't pay and they released her stating "Goals Met." What goal would that be, making you go away??? :-D
You did say they offer exercise classes in his place, but he doesn't go. Someone working with him one-to-one might work better, as perhaps he is self-conscious in front of others. If it does, it can occupy some of his time. It likely won't make things any better, but maybe he would "do" the exercises suggested when the person is not there, like PT has you practice. If not, well, only a little money wasted.
Take ❤ care.
It might be helpful and necessary to go over your understanding of the reasons they don’t feel he’s ready to live on his own, can’t walk on his own, cant move from wheelchair to bed on his own, incontinence causes UTI’s that need to be recognized quickly...ability to exercise (maybe PT to teach him how to exercise on his own, take advantage of classes and equipment available, could be ordered). But if I were in your position I wouldn’t take the hard line as though you are insisting he stay where he is I would kind of ride that line of understanding his desire to go back to the house and the barriers keeping that from happening now. He may need that carrot of possibility in the future he will be able to to go back, that he has some ability to control that but the out to decide for himself that it isn’t time yet. If someone is living at the house that might be another reason now isn’t the time or maybe the relationships he and your mom built where he is living before she passed.
If he is not able to cognitively grasp it and there is some dementia or decline in that area it’s also possible when he says he wants to go home he isn’t actually talking about the home you think. If that could be the case maybe it’s worth exploring a bit.
Does he long for familiar surroundings?
Does he long for more privacy?
Does he long for the good ol' days?
Has there been a recent change in his environment that upsets him?
For the 1st 3 answers, reminiscing may help. Ask him to tell you about the earlier times in his life and what he enjoyed about those days. Try to incorporate occasional surprises that recall those earlier times: favorite dessert (modified for his diet needs, of course), favorite hobbies or activities, or playing music from an earlier time that he loves.
For the last answer, knowing about recent changes helps to figure ways to deal with change. If he misses PT, maybe his place has a group exercise class that he would be willing to attend. If his new room is noisier or has an unpleasant neighbor, maybe he would enjoy headphones during the "noisy period" and listening to music or the radio. Maybe he misses mom and he needs to be able to talk about her with family, friends, or a grief group.
That about sums it up everyone! Happiness comes from within. We cannot make anyone else happy - we might temporarily see smiles and a little happiness, but that's about it.
I just keep telling her how nice the place is where she is, how good the food is, nice the staff is. etc. etc. all of those she agrees with.
its taken me a long time to come to terms with all this and accept.
i now say it’s out of my hands to him and Doctor will never allow. He argues doc is hopeless but I say you will still need to convince him and probably a second opinion. If he gets aggressive I leave.
If he says he’s well enough I go down the doctor route and say full picture will be looked at and not snapshot of today a good day.
I visit once a week now as too draining and have hardened up. Takes practice so I empathise.
This is also about you and you need to care for yourself. They become selfish and don’t care how you are affected .
Whether or not you are dealing with early or moderate dementia, sometimes a small trial dose of medication can mean the difference between “placid” and “panicked”.
In our situation, it’s been a huge Blessing.
I hope he finds peace in his heart. I guess all you can do is empathize with his feelings.
Best wishes for your family. 💗
Maybe make your answers more vague instead of telling him no? "Oh, you want to move back home? I'm not sure if that would work out. Let me check into it."
Might be best to not expect him to understand your explanations. Try to change the topic (have one in mind!) and maybe get him to go for a walk or do an activity of some sort (also, one you have planned already just for this type of situation).
At my last visit, I explained to her returning to live on her own was not possible, she then became verbally abusive to me, it was hard to grasp this was my mother. I’m hurt that mom thinks I’m in a conspiracy with doctors and caregivers to keep her in assisted living, but I know in my heart I’m doing the right thing for her. I’m at peace that mom may never understand why these choices were made, She has be diagnosed by medical doctors as no longer having the cognitive ability to manage her affairs and live safely on her own.
Since she has dementia, can you try different tactics? Don't TELL her she can't move back, try to change the subject, make some excuse or lay the blame on her doctor. You can't really argue with or explain to someone with dementia.
Sometimes leaving an "opening" for them is enough. Later, after you get a little better, when the work needed on the place is done, when the doctor says it is okay. whatever "excuse" might work - just don't put a hard date on that! I've done this with mom, leaving the "door" open for "later" and she might be a little sad, but says okay.
As stated already, he doesn't have to like it. But he needs WAY too much care to live at home alone. Or with one other person, who would burn out in a very short amount of time. It's just not worth it.
I think you should make the choice and be firm about it in your own mind so that you can stop wondering and worrying and waffling, etc. You probably know that letting him go home would be a disaster. So, find ways to deflect the comment, give a vague answer and let it roll off your back.
Talk to the staff and make sure they are on the same page and that they won't encourage any talk of going home. This is your home!
I wonder why he wants his PT? Do they have any exercise classes there? That's kind of like PT. Or you could pay someone to give him PT/exercise with him?
Good luck