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.

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Well, he might "want to die in his apartment" but unless he plans to do that in the next 24 hours, it is not that simple. It is the care needed while he is "dying" that is a problem. If he cannot take care of his basic needs, get himself up to bathroom etc, and is bedridden, then he needs care 24/7. He might not want it but once he cannot take care of himself, he really does not get to choose. He must have care, and either you provide it yourself, you hire in staff for 24 hrs/day or he goes to facility. My inlaws were just in independent living and suddenly, he needed care as he could not take care of himself. He had been taking care of her already so neither of them could manage. So we hired caregivers to care for them in their apartment until we could get them moved to Memory Care. That cost was $7000/month for a 24 hour live in. If the live in was not able to sleep at least 5 hours a night, because the LO kept them up, we had to get 2 shifts of 12 hour each and that cost more.

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.
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Reply to dogparkmomma

Unless you or another family member can provide 24 hour care, your dad really won’t have much of a choice. He’s going to become bedridden and won’t be able to take care of himself. I really don’t think anyone wants to go to the hospital or in to a nursing home to die but.....the alternative would be for your dad to lie in human waste for hours. Without access to food. He’ll developed painful bedsores because he’s been in the spot too long. Hospice only provides so much. So if he doesn’t have family members who care for him in shifts, he’ll have to pay for caregivers or go to a facility.
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Reply to worriedinCali

At the end of my parent’s life. I personally provided care, and was relieved by a wonderful care provider for a few hours every day. . My mom did not want to go to a nursing home either and I made sure she got what she wanted.

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.
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Reply to ACaringDaughter
LoopyLoo Jun 17, 2019
That's great it worked for you and your mother. However... this comes across as pretty sanctimonious. I'm sure you didn't mean it that way and sometimes context is lost on an online platform like this.

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.
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No one EVER really WANTS to go to a facility.

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.
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Reply to AnnReid

I would say go by his wishes, many years ago people just passed at home and dies comfortably, I know it seems harsh, but also Hospice could get involved, If he has the money let it go to home health care, nobody wants to die in a facility with strangers
Helpful Answer (7)
Reply to brtrains

Is the company saying that it will refuse to supply care at all if he does not agree to have somebody living in? I'm not sure that they will be able to force him to accept more hours, but I suppose it's possible they can end their contract with him - for example, if they're concerned that they may be held liable for not meeting his needs adequately.

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).
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Reply to Countrymouse
worriedinCali Jun 15, 2019
I highly doubt the company requires a live in caretaker, that is not the norm. What is the norm, is having someone with the patient 24/7. Again it doesn’t have to be someone who lives in the home. It can be hired caregivers working shifts, it can be family members.
Have him diagnosed by his doctor as failure to thrive and released to hospice care. I dont know how it works in each state, but my dad came home under hospice qith their end of life care until he passed. We had to still have additional caregiver. My mother in law got hospice in her ALF, so it was good. It was her home. Look into it.
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Reply to Mom1928
worriedinCali Jun 19, 2019
He’s already on a branch of hospice care. There’s no need for the OP go this route. It won’t come anywhere near to solving her dilemma.....hospice will want someone with him 24/7, and he doesn’t want to hire someone to do that.
You need to think about what is best for him and that is sometimes hard. So if a facility is the safest place for him, then find him a nice one. If I am not mistaken POA has the power to make decisions for someone who is not capable. If you didn't have POA, that would make things so much more difficult. Good luck.
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Reply to Isabelsdaughter

Yukii007 ; Hello ! Pallitive care is connected to HOSPICE so your father must be in earlier stages of a terminal illness or there would not be any type of Hospice ,so here is how it works per say in my case Dad diagnosed with bile duct cancer,pallitive care is an option only for COMFORT MAINTENCE OF A UNCURABLE SICKNESS such as CANCER if you look it up on internet it will explain all of it to you now you can move to full hospice but that can last for YEARS I KNEW A WOMAN THAT HAD HOSPICE 6 YEARS !! But they are telling you hes nearing the time where his sickness requires more than what hospice can offer at this your father is declineing and to the stage where he can NO LONGER LIVE ALONE & that is according to the LAW ,so unless you move in with him or another child of his or a relative of his MOVES IN WITH HIM...father must NEVER NEVER BE 100% alone in his apartment you do not have to be in the same room but in the same home this is what they are telling your dad and you .So if there is not anyone, able to take on this life changeing MOVE then there will be NO OTHER CHOICE AT ALL EXCEPT FOR NURSEING HOME ,the rooms are very nice and he can make it his home maybe he can go to assisted liveing on HOSPICE thats more like being at home there are Not many choices at that point . It is what it is !!So Sorry you are going through this, I do understand !! Please keep up with this site it really helps and keep us updated every one has advice but really GOOD LUCK bless you all!!
Helpful Answer (4)
Reply to Lorraine12

Have you discussed and looked into hospice care?
Helpful Answer (3)
Reply to AlvaDeer
worriedinCali Jun 19, 2019
Palliative care is connected to palliative care and moving up to hospice will NOT solve her dilemma because they will not provide the 24/7 care he will need.....
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