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FIL has dementia and refuses to go to LTC  
Started by MaggiePJ
08 Aug 2017, 4:09 PM

I'm a new poster and I'm hoping for some advice.
Has anyone had to put a loved one into long term care against their will?

My husband and I have been caring for my 83-year-old FIL for the past 2 years. He has moderate dementia that seems to wax and wane, chronic pain, and is wasting away due to having no appetite. He's about 105 lbs. We have not as yet found any evidence of cancer, but he is very ill. He speaks no English and has had no schooling past grade 1, and is functionally illiterate. He lives alone.
We live close by, and are trying to attend to all of his needs. He has gradually deteriorated to the point of not being able to dress himself properly, needing assistance with bathing, toileting, and cooking. He is basically totally dependent on others. We have 1 hr of PSW care per day, recently increased to 2. He is alone 90% of the time, which is no longer safe. He has had several falls and the PSWs have found him on the floor. He has also become totally incontinent, and on a daily basis I have to clean up urine and feces in all the wrong places--bed, floor, carpet...
We had a capacity assessment done through CCAC a few months ago to try to get him to apply for long term care, at least to get on a waiting list. It happened to be on one of his most lucid days. He is completely and totally against leaving his apartment, and he has told us several times that if we ever put him into a home he will kill himself. He's always had the tendency to be unreasonable, but of course his dementia has amplified this trait. In the end the worker determined that he was capable of making his own decisions, and said we could not apply to long term care, although we told her that some of what he told her in the assessment was not true (i.e., he said he would hire someone privately to care for him at home--he is on OAS and CPP and has no savings. He would not in fact be able to afford to hire anyone). She said that we could conduct another capacity assessment in 3 months.
The past 3 months have been extremely difficult for us, and for him, and he has greatly deteriorated. Last week we finally called an ambulance, as he had grown so weak he could not even sit up, and he began sleeping 20+ hours a day. He is currently in hospital being treated with antibiotics for yet another UTI. His dementia has progressed quite a bit, but he still has some somewhat lucid days.
We are involving the hospital social worker and are hoping to have a functional assessment done in hospital so he can hopefully be moved directly to long term care. The hospital staff we've spoken to have agreed that this is the best course of action, as he's not even able to stand up or walk unassisted now. However, we still need to have a capacity assessment, and we sure he will never agree to go into long term care no matter how sick he is. My husband is the POA. We never wanted him to end up in a nursing home, but his needs have advanced beyond what we & home care can provide, and the hospital is agreeing with this course of action. 
Has anyone been in a similar position of needing to conduct a capactiy assessment to be able to move a loved one to long term care against their will?
I would really appreciate any input. Thanks, Maggie.

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Reply by Nouce
10 Aug 2017, 11:24 AM

Greetings, Maggie,

I wish I could say that I have been in the situation you describe. I haven't, although I've lived with the dementia of my mother and now the long-term decline and dementia of my husband. I do know the pain and grief (and guilt) that comes when you can no longer provide care for your loved one, and have to take the steps to get outside help so that you can stay alive! My heart goes out to you.


It sounds as if you have done absolutely the best you can do, and I salute your courage and resilience! My thoughts are with you as you continue this journey.



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Reply by JennJilks
11 Aug 2017, 12:02 AM

I'm wondering how they can do a capacity assessment when he doesn't speak English! Wow.
Anyway, you're going to have to have your husband be firm. Since the hospital is clear, you shouldn't have a problem.He's not making good decisions, and isn't acting rationally, if this is his position. You should get priority if he is in hospital. They get priority discharging patients to LTC.
You may be able to convince him that it's short-term. 
You cannot be cleaning him up like that. It's unsanitary, and, I presume, you aren't a PSW. 
Stick to you principles. It's dangerous for him to be alone, as you say.  The functional assessment should be clear. I don't know the 'rules' but common sense would indicate he cannot be discharged home.

So sorry to hear all this. I got my dad into a retirement home, but made a mistake since he deteriorated so quickly. Is there a timeline for discharge? Gosh. 
All the best.
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Reply by KathCull_admin
17 Aug 2017, 8:15 PM

How is this week unfolding for you MaggiePJ? Is your FIL more settled. This must be such a difficult time for you and your husband.

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Reply by Carlyn
18 Aug 2017, 6:58 PM

Hi everyone, 

I came in today and decided to read how people were doing. I can speak to this and will do my best in hopes it helps.

Maggie, I was in this situation, very similar, with my own Father 10 years ago. To answer your main question, being firm with both my Dad and the hospital staff and CCAC worked. 

Despite this experience, that was a decade ago. Things are quite different now. If i were in this situation today, I would ask for palliative care doctors to consult on everything. Does your hospital have a palliative care team of physicians? This is crucial I think, based on what you've shared.

sending good thoughts to you and yours.

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Reply by MaggiePJ
18 Aug 2017, 7:23 PM

Thank you so much for your replies Nouce, Jenn, Katherine, and Carlyn, and I'm sorry for my delayed response.

As it turned out, my father-in-law passed away this week in hospital. We went from one day talking to the social worker about doing a capacity assessment to apply for long-term care to a few days later talking about moving to palliative care and applying to go to a hospice. It was so abrupt because he suddenly stopped eating and drinking completely, and so things went very quickly after that. He was actually only in palliative care for about 7 hours before he died. So the past few days have been consumed with making arrangements and getting everything in order.

As awful as it was for him to go downhill so quickly and pass away, we do realize that he got his wish--he never did have to go to a nursing home.

I hope you all are well and thank you for your kind words and advice.

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Reply by Carlyn
19 Aug 2017, 1:46 AM

Dear Maggie,

My condolences to you and your family. We had similar experience...confusing events and changes. 

You did well for him. I'm keeping good thoughts for all of you.  

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