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My 86 yo father was hospitalized the third week in January then spent three weeks in rehab (he despised being there and does not want to be in a NH). He just came home February 29th. He has CHF and KF, terrible lower back pain, and vascular dementia. He went from someone who could walk around with only a cane in November to barley being able to take one step to his bedside commode and now is a total assist since returning home. I fear he is declining at a faster rate and I'm concerned that he is basically bedridden now. I try to encourage him to sit in his chair but sitting longer than a couple of minutes on the commode is unbearable. I turn him every 2 hours and I'm watching his skin on his buttocks for changes, none so far. Any suggestions would be greatly appreciated, especially skin care/products. I'm his sole care provider and feel overwhelmed at times. So sorry for the long story.

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I'm very sorry for your father's rapid decline. Here's the thing, though: He's a one person assist, it does seem as if he's basically bedridden as you say, and you're turning him every two hours. That's very difficult.

I don't know about what you can do to take care of his skin. But I do know this. It's going to get much more difficult for you, and he should be in a place where he has a team caring for him 24/7. It's not what he WANTS that's important now. It's what he NEEDS. The alternative is to keep on what you're doing, become exhausted and out of answers, and he goes to a skilled nursing facility anyway. In much worse condition than he is now.

Sometimes we must face the facts that we are not professionals and have to give up in order for our LO to receive the best possible care. My sympathies for the situation you're in. Has anyone suggested a hospice evaluation? It might be a good idea.
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If he is basically bedriddent then the "good" news is that Medicaid will pay for LTC. You could talk to a Medicaid Planner for your home state.

My MIL is in a great LTC facility on Medicaid (even in a private room). She enjoys the social activities that the staff takes her to and bantering with them. The medical team has been awesome. She would never be as content and well-cared for if she were cloistered in my home. My MIL has been bedridden since 2018 and never once has come close to having a bedsore. She's a 2-person assist.

You should at least consider having some aids come in to give you a break. This is what your Father saved his money for. He can be part of the decision while he still can. You can't be assumed into this role just because it's what your Father wants... that would be unreasonable. And if he has dementia... he doesn't get to drive the caregiving decision bus anymore. You do.
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So sorry about your father.

Would he be interested in home PT and OT? Sure they can be hard, but fun as well, plus it would give him something to do
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That's not a long story! I've posted rambling thoughts 10xs the length of yours!

Do you have outside help with your dad? Sounds like his care is going to be more than one person can handle. I kind of equate it to taking care of a really cranky newborn (that you can't lift!)--it's exhausting on many levels--however, the baby grows up and is 'easier'. Your dad is doing the opposite now.

Does he qualify for Hospice Care? Ask his doctor. You'll get support AND the correct supplies for his specific needs. The meds they give are used or not used, it's up the to patient and the CG, both.

I personally hope you hire some outside CG's. Turning him every 2 hrs? Your back is going to feel that, and if YOU aren't OK, then where will you be?

He is a 'total assist' but one person cannot maintain that "total assist' for very long before they begin to crack.

Look long range--of COURSE he doesn't want to be in a NH, but would he agree to an Assisted Living? His generation remembers the nasty NH's of the 50's-and while those still exist, I can attest to the existence of ALF's that are like all inclusive resorts, My MIL was moved to one right before she died and her kids were so impressed with the place. They realized they should have done this years ago. It was taking 3 adult children+ neighbors+ grandkids to keep her living 'independently'.

Be honest with yourself. You cannot do this all on your own, no matter how strong or tough you are. Just caring for his sores is almost a FT job. It's better to look to the future and plan ahead.

Good Luck. CG an elder is one of the most difficult jobs in the world.
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Igloocar Mar 4, 2024
There might be a problem with his going to an AL, which, as has been discussed here a lot, is only rarely covered by Medicaid, depending on the state. Since Zs60607 has been being paid through Medicaid, I'm assuming her father is on Medicaid.
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If you feel like caring for your dad at home is too much then look into placing him in a facility.

You have done an amazing job of caring for your father so far. Full time caregiving can certainly become overwhelming.

Know your limitations and choose to advocate for your dad, rather than doing all of the hands on care by yourself.
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Thank each and everyone for your responses. I had to move back home to care for dad and it's been 2.5 years. It wasn't too difficult to deal with, until now. I assume he is progressing in the final stages of dementia because he has lost his robust appetite and all he wants to do is sleep. He won't even watch t.v. or answer his cellphone.
I am only 2 days in since his return from rehab and I'm really feeling as though I may not be able to handle this on my own as I was before. I have been his CDPAP, medicaid funded, for the pass 2 years.
He is supposed to start at home PT and have a visiting nurse but I was told his MLTC only covers two weeks.
Would his primary care doctor be the one to do the hospice evaluation or any other placement?
Thanks again. This is rough.
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Igloocar Mar 4, 2024
If you think PT would be helpful and he responds to the small amount of therapy to which you've been told he is entitled, you may want to do some more checking on the rules, which should entitle him to at least what Medicare permits. I believe the issue here is that he was in rehab and was discharged as being able to go home. After rehab, Medicare permits only a small amount of in-home PT. They expect that after that, the patient should improve and be able to go to outpatient PT out of the home. If he progresses, your father thus should be entitled to additional PT outside the home.

However, it sounds as if taking him to an outpatient PT location would be extremely difficult, if not impossible, in his current condition. If he improves with the PT he gets in-home, but not yet enough to leave his home to go to outpatient PT, you might talk with his doctor and the physical therapist about possible alternatives. I don't know if Medicare ever allows more than a very limited amount of in-home PT after rehab, but it's worth asking. Otherwise, if his doctor agrees, he might do private-pay if he can swing it financially to get some more in-home PT. If he then continued to progress, his physician could prescribe outpatient PT to which you would take him. Whether there is a co-pay, and if so, how much, would be determined by his Medicare plan.
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Where I live "in home care" and Hospice are the same agency. So allow "in home" to come and let them access Dad. Sounds like he will not be able to do PT. They can either send in Hospice or suggest one.
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Zs60607 Mar 4, 2024
Thank you!
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