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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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I think his only options are going to be hire in (or find methods for covering 24/7 care in home) or going to a facility, he will have to make a decision of one or the other because he has professional service overseeing his comfort and safety already. It isn't coming from you or even in your control to say ok Dad stay alone if that's what you want. You can help him put a satisfactory situation together but ultimately it will need to be approved by the palliative care service already coming in or his doctor (who has put it in the hands of palliative care) because they all have a legal responsibility to make sure he is "safe". They can't allow him to lie in his waste unable to eat, use the bathroom or do basic care for himself alone, effectively killing himself even though they already aren't taking measures to improve his health at this point if that's making sense. It's a bit of a catch 22 and exactly the reason Hemlock Society (I think that's the name) advocate for terminal patients controlling their own end of life timing, assisted suicide if you will for failing elderly who are of sound mind. But that's a different discussion.

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...
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Can you alternate in home care with hospice care? What area are you in?
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It's his last stand of independence. Find a place close to you, and visit it with him or without him. He is afraid of change and allowing someone to make choices for him...

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.
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It sounds like your dad is in EOL stage.
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Does he have a health problem that will cause gradual decline to being bedridden? Or, is he refusing to exercise/move in order to stay mobile?

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.
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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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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.
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Have you discussed and looked into hospice care?
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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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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 point...so 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!!
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Have a hospice evaluation by an agency that provides both in home and facility care. They may be able to assist in deciding.
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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
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Is your dad of sound mind or does he have some memory loss or symptoms of dementia? If so, has it been officially diagnosed? (This matters.) Unless he is totally alert and oriented, he may need guidance or decisions made for him.

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.
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That is when Protective Adult Services will Intervene, Keep them on Hand....God Bless.
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Lots of good perspectives and advice here. We’re also working with a palliative service, and a social worker is part of the ‘package’ - do you have one too? Talk to the SW and the doc about what your alternatives are, let them council him on what’s-what as well, that’s what they do. In most of this country, the elder does not get to choose when they die. I recently told my mother “who is coming this morning, who is coming tonight” to increase her care, we did not talk and agree about it. Good luck.
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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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You Need to get POA so you can make the decision a doctor can even write a statement saying he's not capable of making his own decisions anymore & judge will grant you poa to do what's best for him.
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Ignore what dad wants and tell him he cannot be alone.

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.
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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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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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LoopyLoo Jun 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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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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I am sure he doesn't, if you have his POA make the right decision for him, place him in a home.
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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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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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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.
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Hi, this is tough. But your dad is 97. At this point, what is best for your sanity? Knowing that he’s cared for 24/7/365 may be a huge burden off of you. Perhaps move him to a facility BEFORE he’s bedridden. Give him some choice? Good luck.
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