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Dad is 78 with slight dementia. He’s stubborn as stubborn gets - always has been. He lived alone an hour away from me until December 2018, when he went into the hospital because he couldn’t walk. Since then, he’s been in a rehab facility, then back in the hospital, then in February, to a different rehab facility. To this day that is where he’s remained - NOT on Medicare anymore, but now private pay. He hates it. His room is down the hall from LTC so he’s resorted to “helping” with patients and saying he works there. I’ve taken him to visit 2 beautiful assisted livings close to my home. He says he likes them but wouldn't want to live there. He wants to go home. Truth is, he can’t. 80% of the time he’s in a wheelchair and his house is not equipped for that. He also wants to drive again. Not happening. Soooooo every day we have the same conversation...... he’s packed and ready to leave. Could I help him and bring him home. It breaks my heart when I have to have this conversation but I do because for my own sanity, I have to get off this crazy train. I try to explain to him how much better a small apartment in assisted-living would be. He said “you” think it would be better. I don’t. I beg him to just try..... but then he says I'm happy where I am. It’s fine here. But tomorrow comes and we’re back to the same conversation. I can’t take it. He’s always hated change and I’m starting to believe that the dementia has very little to do with it. Even when we’ve gone to see 3 assisted livings, so he could choose which one he likes best, he still goes back to the decision being mine to move to one. I don’t even know how to handle this anymore. I’be never been a controlling person (even in a case like this, when I know the decision to be in AL is best.). Many people would have just moved their parent by now because they know it’s for the best, but I just can’t. By leaving him where he is, is doing nothing for his QOL, not to mention MY QOL! I visit all the time to give him social interaction, but it’s consuming me. Please please please give me your thoughts! Side note, the facility where he is now, offers me no help at all. They would love for him to stay there for the $ he’s paying. They tell him he works there and they barely pay any attention to him at all. He has to move. Bottom line. Ugh

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Tell him the doctors want him to move to another facility for "therapy".
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Maybe showing him what it would cost to bring his home up to code, and make it wheelchair accessible may change his mind about moving closer to you. Point out the positives of being closer to you. Explain to him that being so far away and in a place he is not happy at is not working for either one of you. You are now unfortunately in the position of having to be the responsible one for him, making the safest, best choices. MIL moved in with us and telling / showing her cost to update her home helped. We also told her her house could not take care of her needs any longer. It made her transition a bit easier. We also made it a point to bring many of her things so it would feel like hers. Good luck. One other side note, they are NEVER happy or satisfied with their situation when it comes to the main caregiver, with others it's all peaches and cream.
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AT1234 Sep 2019
Wish that wasn’t true, but seems to be
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I may have misread something in your post so I reread it. I don't see where your Dad gave you the 'go ahead' to make his AL arrangements. Like some answers here have said, he told you to handle it. Didn't see that or you probably wouldn't have posted at all.
He may be more obliged to go check one out if he was included in the process? It seems like you have a decent relationship with him and maybe coming clean about how stressed you are might get him to soften up a little.
It's hard, all of this. I hope things will get easier for you somehow. Say a prayer before you go into visit with him and no matter what the visit is like, give a prayer of thanks when you leave. And then try to leave it there.
All of this is so much easier said than done. Take care.
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rocketjcat Sep 2019
Annabox posted “he still goes back to the decision being mine to move to one.” This is where we’ve gotten the idea that it’s annaboxs decision to make, otherwise she’d have said the decision is His to make. Hopefully we’ve interpreted her words correctly.
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Annabox;
I think I am safe in saying that none of us who had to make this decision were happy about it. It is one of life's unpleasant choices, but as you are well aware, he really shouldn't stay where he is.

Although there are many suggestions here, being stubborn with early dementia is a tough one. Although before dementia AL WAS in mom's plans (HER plans, not ours), after it kicked in, early stages, no way would she even consider one. She used to visit the ones local to her for the free lunch/tour, but when it was time, we tried bringing in aides, just for a hour to check on her and if she took her meds with the plan to increase as needed. That lasted less than 3 months and she refused to let them in. Brothers suggested moving in with one of them, NOPE. I asked what about assisted living - PAUGH, I wouldn't live in one of those places! POAs are hopefully in place, but they help you with signing paperwork for him, managing finances, coordinating medical, but not forcing a move or making the decision for him.

The problem you have is multi-faceted - he wants to return to his home and if not, he wants to stay where he is.

You have already stated that moving home, even with assistance, isn't happening, so let's just drop that.

Next you try to explain and have a conversation with him about moving. A combination of dementia and being stubborn, you are expending energy that is going to get you nowhere. You can't argue, reason with or convince anyone with dementia if they've already made up their mind. Even in early stages.

What we had to do was resort to some trickery with mom. In her case, she developed cellulitis days before the move. It delayed her move a couple of days. YB wrote a letter from "Elder Services" at the hospital where she was seen for the cellulitis. In it he wrote she either moves to where we choose, or they will place her. Oh, madder than a wet hen, but she reluctantly went. Once there, she hounded YB every time he visited over the next NINE months to take her back to her condo. Thankfully she never asked me. Now if she remembers, it is their previous home, from 25 years ago. You WILL have to work on getting good at deflecting and redirecting. As the dementia progresses, you will need these tools in your kit. Although often it requires bending the truth, keep in mind the little fibs or white lies we have to use are NOT meant to hurt but rather to protect him. Some say tell the truth - this often doesn't work. It wouldn't for us.

Now, getting him to move. I can see some options for making the move, but first - you mentioned AL. Is this strictly AL or some kind of memory facility? Moving is hard for those with dementia, so it is best to avoid multiple moves. If this is only AL, I would suggest considering MC now, to avoid yet another move down the road.

* Just make the decision and go for it!
   This is NOT about control, it is about doing what is best for dad.
   He did say, at some point, he's leaving it up to you, so it isn't control.
   He is or can be packed and ready to go, just sign up in the place
   you think is the best fit for him, and bring him there. Just say that
   his house needed some repairs and he needs to stay here for a bit.
   Every time he asks (you should avoid going for a while) about going
   home, they haven't finished the work yet.
* The place tells him/he thinks he works there, so you found him a better job.
   If you explain this to the staff of the place you choose, they can let him "help."
* Tell him the facility he is in is closing and he needs to move. Excuse for not
   going home from there - doctor's orders, you still need to work on PT/OT
before you can go home. Repeat as needed.

You can always reuse some of the excuses above, every time he might bring up going home. It will happen, so again, you will need to hone your skills for excuses or changing the subject. Mom has been in MC 2 years 9 months, and still sometimes asks about going back to her own place.
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Can your dad apply for Medicaid since his private pay monies are running out?
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Maybe approach a move differently. He may or may not realize he is in rehab or what the difference is. Does he even know he is paying for it? Try telling him you only get to stay in that place for a limited time and insurance/Medicare won't keep paying. That he needs to move to another place for a while - and you'll keep trying to get everything straightened out so he can come back to this place.

Of the places you've looked at, was there one in particular that you really liked - considering location, activities and continued therapy he could get? If so, was it one that he liked..just didn't want to move there? Go with that one. Take him back and spend a while there with him. Ask if they would let him see the activities, mingle at lunch time, etc with you there to get the mingling going in the right direction. Then tell him that he will need to move here for a while so you can work to see if he can go back to other place. Talk up the good points - it's like 5 minutes from my house, they play dominoes every day, the food is much better here, etc. Don't rush in/out of his visit there. Make sure he has time to meet and have some chat time with someone else at the facility. Best of luck.
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We have found with my FIL that writing out a spreadsheet of his income, and assets and his outgo was very helpful. Even though he had been an accountant, without seeing it on paper he couldn’t grasp the concept that he was spending more than he could afford.
You need to write down what he is currently spending and how long that will last. Make sure to add in all the extra costs too-hospitalizations, etc. Then write down the cost/benefit of your top 2 AL. Tell him you will take him to visit each place next week and after you get done the two of you will make a choice. Tell him you will make the decision together but then it’s done.
It sounds as if you are a mercy and have difficulty making decisions because the emotion of all the “what if’s” ways on your heart and mind. It also sounds like you have always been happy to let others make decisions for you. Unfortunately that is no longer a luxury you can afford. It’s time to step up, and get it done. You can do it! We have faith in you and we’re here to help!
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Who is in control of the money?  If it is you, then move him.  If it is him, then you have no control over it.  If it is someone else, get together with them and come to a consensus and go with that.  I have moved my mom four times now.  The first time, she packed her stuff EVERY DAY and sat by the front door waiting for me to come and get her.  Due to other things besides this packing stuff, I did move her to a place I thought she would love--and she did once she met someone and became fast friends with her.  Then the friend moved after a couple of years, safety became an issue, the facility was in it for the $$$, so I moved her a third time.  Again, I picked out the facility ( the first three picks were my idea), and she loved that one until she progressed in her Alzheimer's disease/dementia, and then she was A & B x 2 there, so I moved her to #4 ( one she picked out).  She is unhappy there, but she hasn't been there long enough to really get to know the place, and they are trying to welcome her.  She has to "decide" for herself that she will like it.  In the meantime, I am her POA and Guardian, and I control the $$$.  If things agreed upon in the contracts that are signed with these agencies don't come about, I have the signed documents to "make changes" in them.  If there are no compliances, then I have the authority to move her.  Look at the contract that was signed, find out who controls the money, and you have your answer.
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You didn't mention if you had siblings? If so, share this responsibility. If not, allow me to share a friends experience. He, as an only son, had to make the decision to move his mom to an assisted living place. She went reluctantly and kicking and screaming. My friend felt awful. Within 3 months of her move, she was involved with the welcoming committee at the place! Always looked forward and dressed up for the community dinner every night! Hang in there.
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I think some posters are missing the point, he is acclimated to his current facility, BUT he can't stay, he has to move to a more affordable place.

Annabox, you know what he enjoys and his temperament, find a continuing care facility that he can get his needs met at and not have to be moved as his care needs increase.

Some places are better than others, go have lunch, talk to the residents and staff, other visitors and get their opinion on the care. I also think that the food is important. Feeding seniors pig slop when they are paying thousands of dollars a month is a HUGE red flag for me. Means they don't care if they are meeting nutritional requirements and that means a pretty unhealthy group of people. Nutrition is so important as we age.

I know how hard this is for you. I bawled like a baby having to pick a facility that my dad could afford and having to move him in, it's not natural to be the authority for our parents. Unfortunately you have come to the place that you must. He is no longer able to make informed decisions, his executive function is not there. Hugs! You can do this.
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jacobsonbob Sep 2019
"Pig slop"--now I know how to describe some of the meals at my mother's NH! She tends not to have much of an appetite, so even when there is something that's appetizing she still only goes for the candied fruit and coffee. Sometimes I eat the food if it's something appetizing. By the way, I've noticed that her current facility doesn't seem to care who eats the food (unless they realize she doesn't eat it) while one she was in before (and my father, too) wanted to know if I ate it so they would know that my parent didn't.
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You have definitely explained the problem well. Dad needs to move because it is unaffordable. TELL HIM. Take him to see the best 2 ADLs you have selected in advance, Ask which ADL he likes best, then make arrangements to move him there. Side note, make sure that he can move from ADL to full care as needed.

Dementia patients always need consistency in their environment and routine. Of course, he wants to stay where he is already acclimated or go home to his house, which he also knows. A "new place" is kind of scary. Help him by making the move as easy as possible and make the "new home" more similar to what he already knows. He will not be happy until he adjusts to the "new home", but it will happen with time.
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DILKimba Sep 2019
Excellent advice! That’s exactly what we did!
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I suggest visiting every other day and not answering the phone if he calls you. If something is wrong, the facility could call you. (You are not who you think you are; You are who he thins you are.) Remember, he has mild dementia.

Later, you could go twice a week.

Best wishes,

Bob
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It's often such a struggle when you want what's best and they refuse. It's a fine line between it being their decision and yours. Make it about you, not him. "it would be easier for me", "I would worry less" etc. Ease him into the idea, not force it, that just makes him dig his heels in more. Here's a video that might help you, I made it to help people who are exactly in your situation, I hope it helps!
http://bit.ly/2ZBp57L
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jacobsonbob Sep 2019
Good video; thanks!
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Do you have financial and medical POA? If dad has put you in charge of this it shows his trust in you, his reliance on you to make decisions when he’s not capable of doing so. Now is that time, his brain is too muddled to be able to make this decision on his own. He’s lost the ability to picture what moving and change might look like. Trust yourself on this, find the place that can care for him both now and as his condition becomes harder to cope with. Don’t have the loop conversation, present moving right before doing it. Your dad is blessed to have you in his corner
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You do understand that you are not helping your father by not making this decision for him. He has asked you to. You are part of the problem, not the solution. He has asked you to make the decision, do it...for him, stop going round and round, nothing is being accomplished.

I also agree with the others, stop going there so often, being a helicopter caretaker is not the answer.

Your father is fortunate to have such a caring daughter, now do the right thing for him, turn the decision into a positive, as it is not a negative.
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what’s the cost at the ALs? Can you spend the same amount on caregivers? They will take care of him for the same price (or less) and he gets to live at home. Win-win.

If you were him, where would you like to live - at home or in a home?
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Isthisrealyreal Sep 2019
That having home caregivers was that easy. The whole situation would fall on his child to prop it up and step up when caregivers don't show or aren't handling things.

Not similar in anyway to having a whole village care for him.
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Talk to the Facility's Social Worker Department, They may be able o Help. Sad Dad doesn't Belong Home, Call also Too, Adul Protective Services if you Need to. Hiss Doctor as well.
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Of course he’s happy where he is. He doesn’t like change, all his needs are met, he’s familiar with the place, he’s oblivious to how much it’s costing, and doesn’t care about the toll it’s taking on you. Or maybe he doesn’t know about the toll on you? Have you told him You can’t continue on like this? Would it matter to him? Have you laid out the finances of how much this rehab place must be costing and how AL would be better for him and conserve his resources longer? Would he understand that?
I’m afraid somebody is going to have to be the adult in the room and decide what is best for him. He’s already told you that the decision is yours to make, so you’ve already won 99% of the battle! Make the decision and go for it!
Having POA will definitely help with the paperwork etc so if you don’t have that already, now is the time.
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Besides the advice above, pray hard for help. When things seem impossible, turn to the One who can do anything
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Are you able to discuss relative costs of nursing home vs. assisted living with your dad? How able is he to process financial issues?
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I have to agree with everyone else here, by me not visiting my dad as often as I was in the beginning, I have found that by following everyone's advice to not visit as often has been a godsend. Dad tells me how much he hates being there but then there's the nurse and CNAs that tell me he goes to activities and comes out in the day room to play dominoes and checkers with the other residents and even eats out there once in a while. Trying to deflect his questions is going to be a bit difficult but it works - like just the other day, my father looked at me and the first thing out of his mouth was "you're fat" - of course it hurt my feelings terribly but I just looked at him and said, pardon me here - I said f*** you! And we laughed about it, but I still got hurt. It's going to happen more I know, I just have to ready myself for it.

Good luck with your father, and take these suggestions to heart, they will really help you!
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Isthisrealyreal Sep 2019
Lacey, if he says that again, you can tell him, "Oh yeah! Well you are ugly, at least I can diet!"

My dads family are all large people yet comment on my weight every time I see them. Really! It's good to see you too. (By the way, I am the smallest person in the house and I still get criticized for my weight)
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You could type out his choices and photo copy them to hand him when he asks the same questions.  Before I had POA, my aunt's doctor told her she could no longer drive or live alone.  She was in the hospital at the time, and I told her we'd help her with whatever she chose on the short list that I wrote down for her.  (AL, every-day aides, or come to Maine and stay with us till Christmas, then decide.) She read it over for awhile, then said, ' I choose number three.'

I agree, it is so annoying to have the repeat conversations, with no resolve.  Good luck.  I like all the suggestions.
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disgustedtoo Sep 2019
If writing it down and/or giving a list of choices works, by all means go for it! If OPs dad is like my mother (sounds like he is!) this may/may not work. I often have to write things down due to a hearing issues she has, BUT, if she gets her mind set, she won't read it. Last time I tried that, she picked it up, without reading a single word and tossed it away.
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I was thinking what AlvaDeer already wrote. Visit less often. Dad has had no chance to accustom himself to his situation because sounds like you’re always there trying to make things better for him and pressing him to make a decision. Try going a week with no visit. If he asks where you were, tell him you had car trouble. Allow him to be on his own for a while. Things may resolve themselves.
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AT1234 Sep 2019
No, tell him you went on VACATION had a wonderful time!
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I think the "attract the bees by moving the honey" is brilliant advice! If he wants to stay put and he's happy in his "job", you can get on with your life, all the while preparing for the time when you can move him.

And by the way, @Annabox, you sound like a wonderful, loving daughter. Your dad is blessed to have you in his corner, even if he doesn't realize it.
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rovana Sep 2019
But if the status quo is not financially workable?  Then the questions of continuing the status quo is answered - not feasible.
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I think your Dad is no longer capable of making this decision. I think it has much more to do with his dementia than you realize. Are you his POA or guardian? Is all of that taken care of at all? If it is not you have zero power in all of this, and cannot do it against his will. I think one key may be that you tell him you cannot visit as often as the impact of the hours on the road to get to him is too tough on your busy life.
You have done everything you can. If he doesn't allow you to help in this, and if you have no power to act, there is nothing you can do, and the more you PUSH, with his personality, the harder he will fight you.
I would try to attract the bees by moving the honey. Visit much less. Tell him you long for the day he will agree to move closer where you can see him every day and help him more, but that you won't make the decision for him.
If you have POA, and if you want it you should be getting it now, when he is less capable you can move him, but at that point the choices may also be less attractive. Wishing you luck. Hope you update us.
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AT1234 Sep 2019
In the end I’d make all the arrangements and get on with it.
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