FIL with dementia demanding to “go home”
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Anonymous
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FIL is 88, almost 89. He came to live with us about 6 months ago following a stroke. He has significant memory deficits and evaluations indicate moderate cognitive decline and recommend 24 hour care available with possibility of locked care unit. He cannot drive (stroke, memory, vision - his car had clearly been in numerous collisions in the few months before the latest stroke). He can’t remember that he can’t drive. He can’t remember that he has any cognitive decline. He doesn’t believe he hasn’t paid his taxes in years and has missed many appointments and stopped engaging in his regular routine of many years. He believes he’s 100% capable of living independently and caring for himself.
Things he can do: - physically very fit for age - mobile, capable of physical self-care but only engages in personal hygiene if reminded (otherwise wears the same clothes until filthy and doesn’t shave for weeks; hadn’t trimmed nails for several months) - pleasant conversation & generally sociable - can certainly express that he wants to go home Things he can’t do: - remember personal hygiene or complete it without multiple prompts/reminders - provide adequate nutrition for himself (had lost a lot of weight, had vitamin deficiencies, very dehydrated, fridge full of expired food) - drive (!!) - remember appointments - he’s lost his car several times and required someone else to help find it but didn’t know how to seek that help - isn’t keeping up on taxes, bills that aren’t on auto-pay - stopped household maintenance and yard care; yard was so bad neighbors called us and we set up lawn care. We also set up house cleaners. - medication management - thinks he takes one pill occasionally, actually takes about 8 medications between am and pm, which we manage for him - doesn’t remember conversations that you had five minutes before, like “we’re going to the doctor today” - tell him again and he’s surprised - not oriented to date/passage of time - thinks he’s been visiting us for two weeks but it’s been nearly six months - biggest issue is he has no recognition of any of his cognitive deficits, and even when given written documentation of evaluations doesn’t believe it, forgets he can’t drive and plans to drive extensively “when he goes home”, has no idea what health issues he has Today I had to take him to the doctor to discuss medication to address increasing agitation over “going home” and he did a top notch job of demonstrating his lack of awareness to the physician. It was a total display of dementia. YET: physician didn’t think there was enough info to say FIL isn’t competent to make his own decisions. I am at an absolute loss. He is a wandering risk. Got lost walking in the neighborhood he walks in daily. Has no idea his medical issues despite having them explained repeatedly. Can’t care for himself. Yet he’s...fine? Advice very much needed on next steps. We do have power of attorney (financial and health care) but they’re active upon incapacity. We feel so trapped but know there is no way it’s safe or appropriate for father in law to go home. What can we do next? He’s an “elopement risk” at this point because he’s so fired up about going home. Doctor’s advice was to take him to an ER if that happens. |
Anonymous
| Put him in a nursing home. Sounds like dementia. |
Anonymous
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What kind of doctor was this? Have you taken him to a specialist (neurologist or geriatrician)? Who diagnosed him with moderate cognitive decline?
It might benefit you to consult with a geriatric care manager - usually a social worker who specializes in elder care - including referring to community resources, helping navigate process of transitioning to a care community, mediating the complicated family dynamics and resistant dementia patient, etc. Where do you live? |
Anonymous
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This is the kind of service I’m talking about - this organization is in Bethesda but there are others, and they’re all over the country.
https://agingnetworkservices.com/ |
Anonymous
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I feel for you OP. Both of my parents - my Mom about a year before she died and now my Dad -- although not so much frequently -- insisted on "going home" .... sigh. For us to insist that they are home (and they were/are) would only create an agitated argument. What did work was to engage in a sort of round about not disagreeing conversation:
Dad: I want to go home. Me: Ok. Wow -- going to be a lot of packing..... Dad: Oh Me: I guess you would have to change doctors. oh boy -- Dr. Somebody is so good. It's great he is your doctor. Dad: Oh So you get the idea -- the point is not to argue. Just agree and try to diffuse. It worked with us..... mostly. I remember my mother insisting I go get her suitcase and "tell your father we need to check out of this hotel to get home...." It's like redirecting a toddler. It's hard, I know. I agree with getting a care manager. We have the same one that worked with my Mother -- so my Dad really trusts her. Good luck. |
Anonymous
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Can you doctor shop to get him declared incapacitated? I've never been in this situation, and I'm sure other posters will have better insight, but I've heard that the bar to declare someone incapacitated is very high. Best of luck, OP. It sounds exhausting. |
Anonymous
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I agree with PPs that
1) you need a new doctor, a neurologist. But that said, I’ve never found a doctor who can help. I don’t say that to be hopeless, it’s just that there’s not much medicine for many of us at that stage. 2) redirect, redirect and distract. For example, if he says “I want to drive” say “okay, tomorrow you’ll have to call the DMV to schedule an appointment. Oh look, it’s 3pm. Should we watch that show you like?” You just have to keep doing it. He will keep circling back, and you just keep gently steering him away. Or tell him the “solution” knowing he won’t be able to do it. You might worry that he’ll just get fixated or upset about making the DMV appointment but 9x/10 ime it just solves the immediate problem and then fades away. |
Anonymous
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Make sure that you hide all of your car keys.
Get him to sign a new power of attorney that does not have that springing clause. you want the power of attorney to be durable and in effect now. He will still have the capacity to sign things as well, but at least this way you have the capacity to. It’s very hard to get someone declared incompetent incapacitated. So I would just get a new power of attorney in place. That assumes if he will sign it. Arguably, he may not be truly confident to sign such documents right now, but the doctor just said he is, so now is the time to do it. |
Anonymous
| Competent not confident |
Anonymous
| My father has dementia and he is still living in his own house that he has lived in for over 50 years and he says he wants to go home all the time. This is common for people with dementia because they don’t know where they are and they think themselves, oh if I could just go home I would know where I am and I would feel better. The social worker told us that |
Anonymous
I feel for you. I'm in a similar position but have full POA. Even with that, my mom is still considered to have enough capacity to make her own decisions. I would go to another doc, and maybe find an eldercare attorney and see what your options are for changing the POA so that you can make decisions. It doesn't mean you have guardianship or that he is declared incapacitated, but you could get him placed in a locked dementia care facility where they can handle this behavior. Otherwise, I guess you wait until something catastrophic happens and ends up in the hospital. From there he can be moved to a facility. Sending you hugs - this is exhausting and so stressful. |
Anonymous
DP but can you recommend your care manager? Or share how you found them? |
Anonymous
| God. This is so hard. Hugs to all of you. My biggest fears are Alzheimer's/Dementia and going blind. I would want to go before that. Is that a selfish wish? I know my kids would want me to remain as long as I can, but I would just want to go. |
Anonymous
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You punt and keep punting.
"Your house is not ready for you." "It is nice to have you here today, let's plan for tomorrow's doctor's appointment" "Is there something you want from your house?" I would start getting POAs "temporarily". "Dad, I can do your bills much easier if you sign this. You can always revoke it." For the Health POA, when you are with him at each appointment- make sure he signs that you can be called and have information relayed to you". If he balks at the paper work, "I hate all the paperwork too, if you sign this- I can take care of it for you. You can always revoke it." If he insists on keeping his keys, do what the nuns did in 'Sound of Music" and disable his car. You can have his doctor notify DMV that he has been diagnosed with dementia. My MIL would not give up her car, so it sat in the assisted living facility parking lot where she could see it from her window. We disabled it and she kept one set of keys. It was comforting to her until she eventually forgot about it. Each day is a punting day and will be repetitive to you. When you need to go on vacation, have the long term care facility be the place he goes "temporarily". Or if he gets sick and needs to be hospitalized, he can be released to a "rehab" facility. But you have have to do your homework and figure out where he will be going and work with them to make it work when the time comes. For my FIL/MIL, my FIL got sick and need surgery so they moved into the assisted living center for his procedure and recovery. He ended up going receiving hospice from there and died 4 months later. But MIL was already there and we kept her there punting- her dementia has progressed too far to go home. |
Anonymous
Wow. So heartbreaking. |