He has a caretaker 4 hours a day 7 days a week. The company has told him that once he becomes bedridden he will need a live in caretaker that he will have to pay for or he can go to a facility paid by his insurance that can take care of him.
My dad does not want either, he just wants to die in the apt. and not pay for a live in caretaker.
Not sure what to do.
I feel for both you and your dad, it sounds like his mind is fairly sharp it's his body giving up on him (or being helped along) and in some ways this must be harder than those patients who aren't as aware of the here and now or their surroundings, their deterioration. I don't blame your dad for wanting control over the end of his life but unfortunately I think it's limited now. You could however find some ways to ease him into 24/7 care of his choice maybe as long as the professionals overseeing things are ok with not having it in place yet. My guess is they are telling him/you this now as a warning to start figuring it out so he does have options because without something in place they may come in one day and send him to the hospital where he will only be released to a facility, maybe not of his choosing and loose the home care choice. On the other hand this might be the best route if he can't been convinced to make a choice...
Make the decision together, it is not safe for him to be alone, and they may have actual activities that include other residents.
If he can be set in a wheelchair they may be able to get him around in the facility for some kind of socializing.
He has to make a choice, like it or not. Go to facility where he clearly does not want to be. Or, pay the caretaker to live in with him so he can go out like he wants to do. Tell him the state (protective services) will make the decisions for him if he doesn't do it. -- and it's the truth because if caretaker company finds out he is living alone when he cannot get out of bed, they would be required to report it.
How about finding someone to work a 4 hr shift after the current caretaker goes home? It would get him used to people being in his home for longer periods of the day. Do it with a future plan of round the clock care. You are going to need several shifts of people to cover 24 hrs and days off, or someone to actually move in. Any relatives that need a place to stay? Room/board can be considered as part of the pay.
Do you have Power of Attorney for health and financial decisions for your dad?
What is your dad’s physical state right now? Ambulatory? Able to bathe alone? Go to the bathroom independently? Can he fix a sandwich? I’m trying to get a picture of his abilities at this point. How quickly is he declining?
Are you caring for him the other hours when the caregiver and palliative care isn’t there? Or is he alone?
We all want things the way we want them but the reality of the situation is that he can NOT be left alone if he can’t care for his BASIC needs. That would be construed as Elder Neglect and, being next of kin, you would be responsible.
Also, he must have an escape route out of his apartment in case of emergency (fire, earthquake, tornado, etc.). A live-in c/g could qualify as an emergency assistant.
Any Social Worker following him would be mandated to report this to Adult Protective Services as an unsafe situation if he was immobile in the event of a disaster. Again, the responsibility may come back on you.
Do do you see where I’m going with this? It’s not as easy as letting him have his way.
Maybe you could explain the above to him to see if he will change his mind.
Does he have the finances to pay for a live-in c/g ($5,000.+/month)? If not, is he signed up for Medicaid to pay for his nursing home? If not, you may want to get started on that. He will have to “spend down” any saved money over $2000. on his care or physical needs to qualify.
If the nursing facility will agree, he could bring some of his furniture to his new room to make the place more like home. Some even accept pets.
I’m sorry for you both that he may have to give up his wishes in favor of better care and living conditions. It’s not easy getting old.
so...he must either immediately hire a live in caregiver....or you will have him moved to a facility.
either way...he cannot stay alone any more. Hey, I want to win a million dollars too.... there are just things that are beyond control..... at 97 years and palliative care, staying alone is one of those things he just cannot do.
The question is really always “Where can my dependent LO be made most comfortable, safest, and least likely to suffer?”
The issue of financial cost is not really a legitimate concern in this decision making. He will be obliged to pay for full time round the clock care OR to enter a facility.
If he is lucid, he must be asked to choose one or the other, with the only other possibility being that you choose for him.
If he is is no longer lucid, the decision making goes to those who have been caring for him.
She would have done the same for me, had our situation been reversed. (And of course, she did take very wonderful care of me when I was small).
No one can easily do this -of course there was sacrifice and sorrow over her declining health. To me, following Mom’s wishes was completely worth every sacrifice.
I’ll never regret the decision I made, and I treasure the extra time we had together. The time passed far too quickly.
I was surprised that I overheard a lot of unsupportive comments. Nearby relatives (ten minutes away) chose to not even visit.
I would do it all, a thousand times again.
Encouraging a facility is not being "unsupportive" in the least.
Not everyone has the ideal parent/child bond and not everyone can stay home to be a caretaker. As others have said, no one is happy to go, or send a relative to, a facility. Doubt anyone on here had a parent who said "I can't wait to go to a nursing home when I'm old!".
There's tons of posts on here from people who still love their LO dearly, but are about dead themselves from caretaking. They're beyond burnout, and others tell them it's time for a NH. Which 99% of the time is answered with "Oh, no I can't do that. I promised mom/dad I'd never put them in a home."
My grandmother-in-law (GMIL) had dementia. Her daughter (MIL) moved GMIL in with her. At the time GMIL was just a bit confused and had poor eyesight. MIL was single, no other financial support, and had to keep working full time. This went well for awhile, until GMIL fell off the deck step in the backyard while MIL was at work. MIL knew then that GMIL needed more help and supervision and put her in a very nice AL, until dementia progressed to needing NH. She has since passed away.
MIL still feels bad about having to do what she did, and I don't blame her. We all second-guess. Ultimately though, it was hurting GMIL to keep her home. She was isolated in the house and bored/lonely during the day. In AL she was around other people, had activities, and was happy.
Point is, sometimes a place where there's 24/7 care and supervision is a more loving way than caring for an LO at home. Nor is it selfishness or lack of love from people who have to make that choice.
Seems like he is quick to tell you what he does not want, but how does he operationalize how he "dies in his apartment" while not being able to manage on his own. People with dementia lose their "theory of self" so they only look at things from their point of view and no longer consider what they are putting families thru. So in his case, he may not have a useful plan as to how he is going to remain in that apartment. He may just think you will take care of him or he might have no plan at all.
If I were you, I think I'd give the company a ring and discuss the issue with them. Maybe some kind of compromise is achievable - night times only, on call only but backed up by an alarm, something. What's your father's main objection to the 24/7 live in - cost alone, intrusion on his privacy?
If your father is mentally competent, by the way, nobody can force him to accept care whether at home or in a facility. You can only do your best as far as he'll let you. But the same probably applies to the company, which is why I'd query their warning (let's not call it a threat).