What do I say when my father insists he can eventually live on his own?


My dad had a stroke in May 2016. He cannot move anything on his left side and get easily confused and forgetful. He is in a nursing home because he requires 24 hour care. It takes 2 aides to get him into and out of his wheelchair. Even though it's been over a year, he is convinced that he will be able to live on his own again. Even if he miraculously got full movement back, his mind is not clear enough to ever live in his own again. So my question is, do I continue to play along or gently let him know that he cannot live alone. He mentioned needing a car today and when I said that he may not be able to drive again, he got very angry and insisted he will. He is always wanting me to buy stuff for when he has his own place. He is on medicaid and doesn't understand that he has no money left. I generally try and change the subject when he starts talking about living on his own. Is that the right approach, or are we doInto him a disservice by not helping him accept that this is now his home? He is very distrusting of people and I'm afraid he will start not trusting his own family if we tell him what he doesn't want to hear. He told me that he was going to stop talking to me the other day because I disagreed with him in one small thing. Our visits are getting more and more strained because of this. I'm afraid to upset him for fear that could be the last time I talk to him. Any advice would be appreciated

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before his stroke, he really didn't have many activities. He would go to McDonald's 2 or three times a day for coffee. He would also go to goodwill and buy stuff he didn't need. when we had to sell his house, it was full of junk he didn't need. We counted 5 vacuums, about 20 winter jackets, 30 or 40 pairs of old shoes, 30 pairs of jeans, etc. It was getting close to a hoarding situation. He filled his time buying things. Now that he can't do that anymore, It is really hard on him.
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I definitely see signs of dementia. He goes through stages where he thinks the aides are leaving the building and all the patients alone. I tell him that is illegal, but his response is "well that doesn't mean they can't do it". He has a window to the parking lot in his room and he claims to see the workers leaving and never coming back. He also gets confused because the activity room in near his room. When they start bringing other patients down for an activity, he sometimes thinks they are evacuating the building and leaving him there alone. It's sad because I can't convince him that isn't happening.

He is in nursing home that is also a SNF on one side. He started out on the SNF side, but his Medicare insurance stopped covering physical therapy when he was not making any progress. He had physical therapy for about 2 months before it stopped. Now that he is on the nursing home side, he is put into a pool of other residents that request therapy. It is not nearly as intense as what he first got. It makes him mad that he can't have the therapy he first got, but his insurance will not pay, so there isn't really anything I can do.

His eyesight is not good so he has trouble reading magazines and books. I have brought him some reading material before, but he refuses to even look at it. He wants to walk so badly, but I just don't see that happening ever again. He was fairly anti-social before the stroke, so getting him to participate in activities is especially difficult. He says all the activities they do are stupid and he doesn't want to hang out with people who are just waiting to die. He is convinced that he is in better shape than anybody else there even though he can barely feed himself. I think a support group could be good so I will do some checking and see what is in my area.

My sister and brother-in-law both visit on a regular basis, so that is very helpful. Although I have 2 other brothers who live less than an hour away and they haven't seen him in over 6 months. My mom (his ex-) used to visit, but then he decided that he didn't want her coming anymore because he thinks she is after his money, even through he has none. He isolates himself and wants to complain about how bad it is there. I was hoping it would get easier with time, but it sometimes feels like it's getting harder. Thanks for letting me vent. I don't think people who have never been through this before can really understand how difficult it can be for everyone involved.
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I think that telling someone he or she can't do something, such as going home, is harder for an older person to accept, but is similar to parents telling their children they can't accomplish a specific thing, or doing something else that inadvertently discourages the child, withers his or her self esteem, and produces resentment.

I've found that it's better for both parties in a conversation to give encouragement, albeit false, and this especially applies to older people. Sometime ago a co-worker suggested I was old enough to retire and stay home, so why was I still working? I thought she was quite stupid to make such an idiotic comment. I was only in my 60s at the time.

Since then I've been told that I'm getting TOO OLD to garden so why don't I just turn my garden into a (high maintenance, non energy efficient) lawn. These are to me stupid questions and suggestions, but I also found them insulting. I've also noticed more people asking to help me carry out my laundry, pack my groceries, etc. And I'm only in my 70's. There is that presumption of older women becoming more frail, I suppose.

So I think that being truthful and realistic is not always appropriate for us old folks, but especially so when someone's facing recovery from what could be considered a catastrophic medical event. I won't deny that I fall into this trap myself. So I'm trying to focus on what CAN be done, and providing encouragement all the way. And it's not always easy to deal with unrealistic thinking.

But it does create a better mood and relationship.

One thing you could do to stall the attitude your father's is developing is ask what he thinks SHOULD be done in therapy - what does he want to work on? Then make arrangements with the therapist to focus on those aspects, and complement him even if he's not making much progress.

Getting his mind to focus on positive outcomes can be a major task, but could be the trick to rehab (assuming his regular doctors haven't ruled out recovery of his functional ability).

In the meantime, what did he do before the stroke? What are his interests? I've had some success in rechanneling activities into ones in which only decisions are required. I.e., Dad gets a lot of junk mail, including cards, some of which are quite nice.

We both have more cards than we can use, so I've called the local senior center, the VA, and I believe at one time the United Way 411 to find places to donate cards. So we go through cards (therapy in itself b/c of the beauty of some), choose ones for the VA, others for various local rehab facilities, some for the senior center to sell at low prices.

We also select cards to send to people who help us; the process of making those decisions and seeing the beautiful designs is uplifting and helps stabilize our moods. I'd like to add a project to send cards to our military men and women, especially those in country. I began this a few decades ago and really felt as though I was making a contribution to their morale.

Another thing you can do when he wants something specific, is not only provide a catalogue of lots and lots of items to review and on which to decide, but tell him that his funds are a bit short this month and you need to wait until next month's SS check arrive. Then of course you'll still short on funds the next month.

Redirect and substitute.

And kudos to you for your insight in recognizing the elements of the current situation.
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Lots of great ideas for playing along with where dad is in his mind. That's where you should go with your converstaions. But even better, if you can bring him back to being suspicious of everyone else in the home...

Tell him, in great secrecy, that you are reporting on this to the federal comptroller's office, but they need an agent on the inside. He's the one.

He needs to befriend the other people and find out what they enjoy spending money on, who are their relatives, and what they do.

This is a top secret operation, and he can't reveal his purpose or job to anyone, but his work is desperately needed!

This will give him a motivation. If you can photoshop an official looking card for him and laminate it, all the better. Allow him to have purpose, and in the mean time, make friends and be friendly.
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Bobbigrl27, from what you had written, I think I am seeing some signs of dementia starting with your Dad. Especially the way he is talking about the Staff in the nursing home. Either it is that or gossiping.

Thus, if dementia is starting, you will find that Dad will continue to talk about going home, but eventually down the road home will be his childhood home, back when life was innocent and fun. It took me a while to realize that with my Mom, when she was in a nursing home, as I thought she was talking about the house that she and Dad had owned. Until one day she asked if the cattle were out in the field. Ok, now I know, as the last house she lived in where there was cattle was her childhood home. I let my Dad know about that so that he could play along.

My Mom kept falling out of bed, as her mind thought she could stand and walk, but in reality she couldn't.

So while your Dad is planning on moving back to his previous house, setting it up to be his home again, it is best to play along, as that limits any arguments trying to to get the patient to believe that is not reality. If Dad wants a new cellphone, tell him you can't get to the store until next week, hopefully he will have forgotten about the cellphone. Just keep making excuses for not taking him.
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CM, your post included suggestions I also thought of but foolishly lost when I checked Bobbi's profile to see what state she and her father live in. Thanks for suggesting the catalogue issue -it's exactly what I had written, plus other topics which I can no longer remember. I'm glad someone else is on the same wave length and posted while I was goofing up my own post!

Bobbi, like MacArthur, I shall return, when my mind is capable of remembering what I wrote.

I do have one question though, and that's what kind of nursing facility is your father in? Is it a rehab facility, skilled nursing? I ask b/c I'm wondering if he's getting stroke therapy that could be enhanced by a different facility that has a specific stroke program.

When I had knee therapy at the Rehab Center of Michigan (part of the Detroit Medical Center complex), I saw patients there with severe mobility injuries; one was on crutches and looked as if he might have had a stroke from the way his limbs were so rigid, yet he was struggling and successful in getting out of his wheelchair and onto a therapy bed for a workout.

At another facility, also a hospital facility, I saw another patient in some kind of stroke support cage. It extended up almost to her shoulders, with a ring around her body for holding onto. There was another ring at the bottom, spaced to allow foot movement. I think both rings were not only for support but also protection if she fell, which she probably wouldn't have b/c 2 therapists were walking with her.

I've tried to find a similar device to illustrate this technique, which I've never seen in any ordinary rehab facility, but was unsuccessful. I did learn though that some stroke specific therapy places have similar support devices for rehab or for therapy for neuro degenerative conditions. Google "universal spider cage" and you'll see examples, although these aren't like the "walking cage" I saw.

Some of these hospital affiliated programs have really top notch programs, specifically catered to stroke rehab. They're well beyond the leg lift and arm lift exercises that are literally a staple of elder rehab.

I was wondering if there are any such facilities in your area.

You might also call local hospitals, especially if they're teaching hospitals, and ask if there are stroke support groups. There's one in my area. This might help provide support for you in connecting not only with other stroke survivors but their families.

I would also wonder just how realistic his goals are, especially is they're set with the assistance of a SW. My experience has been that PT and OT set the goals. Are the SW's assisted goals more social and for re-integration back into society and to home than physically oriented?
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Catalogues. Lots of catalogues. And make lists. That might help with the stuff. And if they include the prices, you can also (tentatively) see if you can compare what's on his bank statement with what sort of bills he's planning to run up. But do this gently, and stop if he begins to get upset. It's not about the money, as such. It's about the reality of his position. If you successfully spell it out to him, making him see what's real, that in itself could be quite upsetting. Well! - wouldn't you be upset if it were you?

Oh gosh. I'm so sorry that both you and he are having to go through this.

Rest your mind that you can either encourage or prevent his thinking that he is able bodied and could get well enough to go home. It really does sound as if his brain's ability to retain, process and retrieve information has deteriorated past the point where anything you say makes much, if any, difference to what he understands in the present moment.

And the refusal to participate or to socialise: well, that could be "there's no point, I'll be out of here in five minutes." But actually, it's far more likely that he hasn't the energy or the mental ability to handle what are quite demanding activities when you break them down into their component parts. Still! - you can encourage them as far as possible; especially things like not eating alone, making sure he does use the shared spaces and the garden if there is one. Tell him that there's no time like the present, and if it's a nice day he may as well make the best of it while it's there.

Have you, yourself, just privately, discussed his prognosis with anyone?
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he is being treated for depression and anxiety. One concern I have for playing along with his desire to live alone is that he doesn't understand that he has no money and he wants me to buy stuff that he can't afford. He wants me to take him next weekend to buy a new cell phone. He can't afford it and doesn't need one right now, so I have to make excuses why we can't. The nursing home has a van that family can use to take patients out. He is always asking to go out and shop for stuff he will need to live on his own. I just tell him we will cross that bridge when we get to it, but that sometimes upsets him as well.

His social workers have helped him set goals for recovery, but unfortunately he has not hit any goals that he has set. He gets mad because he thinks the facility is sabotaging him. For example, he wants to use a walker but for safety reasons the nursing home won't let him try because he literally has zero use of his left side. They will not let him try something that is not safe. He falls out of bed at least once a month because he thinks he can get up on his own. Sometimes I feel like playing along with his insistence to live independently is encouraging his behavior of trying to get out of bed and getting mad at the nursing home for not allowing him to do things that he thinks we can. He also gets upset that he is not getting enough physical therapy. His insurance will not pay for therapy anymore so what he does get is limited. I try to explain the insurance coverage to him, but he doesn't understand that either. He refuses to participate in any activities or socialize with anyone at the NH because he thinks he is getting out soon and doesn't want to make friends. I just wish he could get to a place where he at least accepts his current situation, while still maintaining a goal of living independently at some point.
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Why not make him happy by planning this? A goal in life is so essential

Help him create milestones to this goal. Goals for rehab, but also as another poster remarked...goals for the creation of his home. What he needs to assist..medical equip, aides, etc.

I see a lot of benefit to him doing this and giving him life goals.
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Oh dear.

Has your father's doctor assessed his mental state? Just wondering if anyone's considered treatment for depression, which is very common post-stroke.

I can't blame him for wanting to find things to be angry about. Very rough on you, though - and trying to the patience, too. But I'm sure the staff will be taking his comment in their stride as something that just goes with the territory. Hugs.
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