I would very much like advice re: 89 y/o dad on hospice care.
Dad has severe aortic stenosis, atrial fib, non-operable parotid gland malignancy and vascular dementia. Two issues. One, I had a terrible confrontation with first hospice nurse who showed up without calling while my dad was upset with the two aides who did call and were offering him a shower. (He refused and was mad at me they were there, so I stepped outside) The nurse dismissed me as if I didn't matter, (I am his POA, she asked me NOTHING just took his vitals) I was very emotional trying to explain to her outside that my dad is delusional thinking for months now he has a young girlfriend, has no intention of dying as he has high hopes of this imaginary relationship and will not respond well to being told he is on hospice. He has not bathed (refuses ALL attempts) in months, REFUSES to go to hospital for ANY reason or even go in to see his Dr, who is a relative so came and did visit at home to assess for hospice. He has slept almost continually going on 12 days, eats hardly anything, refused all liquids yesterday.
The hospice nurse told me a week ago if he said he didn't want hospice they would not see him. This panicked me because it would place me in a very bad spot as he also refuses hospital care adamently, has been falling and is obviously medically declining. A social worker came out to address my hysterics and told me the same thing, either I tell him he's on hospice or she will, so he can "work on end of life issues."The only issues he wants to discuss when awake is his "SEXY young girlfriend." He tells anyone who will listen. My husband called the hospice administrator who said he does NOT have to be told and they will send a new nurse, who will call first. Only no one has called in 5 days or answered our phone call today. I think they think I'm the crazy one not my dad. I have cared for him 4.5 years, I'm tired and I'm caught between a rock and a hard place helping him stay at home all the way to the end comfortably if they decline to come back. Today his edema is way down in his feet, and he ate and drank for first time and back to talking about his girlfriend and how he's ready to conquer the world, only he still won't bath and now I'm afraid hospice really will back out. Should I find another company? or should I give up and force him to go to ER and probably be admitted to a hospital. I asked him about going to hospital again today and he says "I won't do it for ANY reason." I am stressed and would welcome input. (btw dr recommended us calling hospice today to ask WHEN a nurse will come, they have not yet called us back). Thank you in advance for any support, I very much appreciate this forum already.
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Ralph Robbins
Aug 14, 2018
It is true that Medicare will only pay for Hospice services in a nursing home; not room and board.
If, however, Hospice services are being delivered in a free-standing Hospice facility or in a dedicated portion of a hospital, Medicare will pay the full cost of care including room and board.
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"I know how to take care of someone in a hospital bed" is when the someone isn't your dad. I'll bet you could get your patients to bathe, right? And listen to their delusions of sexual escapades with patience and humor?
It's different when it's your parent.
So, houses and Medicaid. I believe that in ALL states, if you apply for and use Nursing Home Medicaid, one residence is a "non-countable" asset, but a lien will be placed on the property when the owner dies. There are some caregiver exemption rules (if you've kept the client out of a nursing home for two years, or something like that, then the lien doesn't have to get satisfied until the caregiver dies or moves.
If dad's savings were wiped out by copays, then you should CERTAINLY apply for Community Medicaid.
It really behooves you to talk to an eldercare attorney about this stuff; many will give you a free hour's consultation.
One thing you want to do, I think, is to stop taking what the Hospice provider is "recommending" as an "order". If you want to keep dad home, then do it, and keep hospice coming in. But I know that I was blessed to have caring nurses, LPNs, aides and therapists around at the NH when mom was actively dying. There were just too many questions in my mind about how to best manage her care. They did it all and allowed us to "be" with mom--playing her music, holding her hand, etc. We didn't have to worry about giving her morphine, changing her sheets, drying up secretions. It was a great privilege to have her in a caring place with experienced hands all around.
You need to be firm with them and say " there is no money available for him to be in a nursing home". If they won't work with you, get another organization.
I recently learned that if the Hospice organization has its own freestanding facility, patients are covered for residential care under Medicare for that service. You might look in to that.
Have you applied for Medicaid for your dad?
What end of life stuff are they referring to. They are to give comfort care, not judgment. My sister fired the hospice coordinator because she wanted to address end of life and my sister was having none of it.
Please get someone that will be understanding and compassionate in this very hard situation.
Tell dad his sexy girlfriend called and said no more nasty until he starts bathing on a regular basis 😁
Take care, you can do this, and make sure you utilize everything your Hospice has to offer to help you through this, your Nurse will become your best friend! Lean on her!
Not every nurse is a good fit. You have a right to have one you can get along with. REMEMBER this is your home. You have a right to ask that they come at a certain time. Mom had OT PT at home. I told them early morning was not good for me. I had to get myself up, Mom up and breakfasted. We compromised and agreed to 10am. I have never had trouble with hospice/homecare nurses but some have and say they walk in like they own the place. You do not have to deal with this. They are there to do vitals and make sure patient is pain free and comfortable. Not to intimidate the family.
Looks like you got your hands full. I feel your frustration. My Dad was on hospice for 7 days b-4 he passed. They were good when they came but they were not around a lot. They basically trained me to change his sheets while he was still in bed etc. His scenario was a bit different from your Dads His colon died and was given 3 days to live. But i do have a little bit of experience with hospice.
My experience with hospice is that i got a lot further with them when I built a re pore with them. Using their name in conversation so they know you know who they are. Asking for supervisor and humbling yourself helps a lot also. Tugging on their heart string as much as you can. They've got a hard shell so tug hard.
You may have already tried this with your Dad but just in case i'll answer anyways.
** Engage yourself with your Dad when he talks about his sexy girlfriend. Tell him " Thats great Dad. How exciting. I bet if you washed up a bit we would see her around more often" Offer him a package of the adult wash cloths that are pre moistened. Then slowly move into the idea of a quick shower. Give him a pot to soak his feet in and then do his nails. Always keeping the idea in his mind that he's gotta look good for his girlfriend. Maybe once he feels how good his feet feel he may move up to the shower or tub. If not the disposal wash cloths are better then nothing.
I dont believe you can lose hospice when someone has Alzheimer's or Dementia. They are not in their right mind to make that decision.
It's good to hear that he is feeling a bit better today and is eating. This maybe a good time to ease into the wash cloth idea.
My experience is tho when they feel better its usually means it wont be long now. Usually but not always.
As far as the nurse treating you poorly. Call the supervisor. Keep calling till you get through. Call every hour if you have to. but be sticky sweet. they'll put you through. Tug on their heart strings and say please and thank you
Good luck. keep us posted on how things are going with your dad. his girlfriend =0) bathing and hospice.
Take care