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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.

Here's the post from Ralph Robbins I was referring to:



R

EXPERT
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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Rose, from my perspective, when it's your parent who is ill or dying, having a professional background might help with the lingo, but not with a lot of the other stuff! Give yourself permission to be lost and overwhelmed and to reach out for help from others!

"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.
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Rose118 Aug 17, 2018
My own experience proves the truth of what you are saying. In fact in some ways its harder because I expected more out of myself. I think I am burned out on all geriatric care, something I loved for 24 years, and is part of why I am not seeing any patients now, along with the seemingly never-ending needs of my dad, who looks like he's dying one minute and then tottering to the bathroom without his cane the next. I was told by hospital cardiac dr he was hospice appropriate in 2015. Well, here we are finally doing it. I found a free standing hospice less than 30 min away, and I am going to talk to them about options so I'm prepared. I appreciate your freely- given, well thought out advice. Thank you.
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Rosie; the "freestanding hospice" information was posted recently here by Ralph Robbins (I think) one the experts on this site. I don't have personal experience with a freestanding Hospice, so I think it's worth a couple of calls to find out.

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.
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Rose118 Aug 16, 2018
I will call an attorney tomorrow, I can think of two in my area which I've heard are good. You know a real problem in these situations as caregiver with parent on hospice is we lose our professional perspective and almost feel like a child again. It also goes on and on and we get tired and just wish someone would take over for a little while. I have a new appreciation for clients I've dealt with in similiar situations where I did make internal judgments, now I truly understand the tremendous pressure one feels in this situation to get it right. Thank you for your good advice, words of support. I appreciate them very much.
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Rose, just because the hospice provider is recommending moving dad, they can't insist that you do it.

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?
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Rose118 Aug 16, 2018
Hi Barb - I haven't applied for Medicaid but I surely should have. He had a small savings that was wiped out with his radiation treatment copay last year and gets $900/mo social security only. I maybe mistakenly thought applying for Medicaid meant they could take his home. Is it too late to do that now? Also, my family member who is a physician says if my das gets to a point where he can't get up from his easy chair just ask for a hospital bed. I know how to care for someone in a hospital bed and she feels that we can handle it as a family so no need to put him ANYWHERE. From what you are saying, if it really came to that it could be covered 100 percent under hospice care if I find a nearby company that has a free standing facility. I had no idea. Thank you so much for your answers and encouragement!!!
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I think you need to have a talk with the hospice administrator or social worker about their philosophy and your goal and whether or not the two mesh. End of life care for someone in old age and dementia is much different from caring for someone younger with something like cancer or als - the timeline is less certain and the belief in self directed care doesn't apply. If they can't assure you will get timely care from a nurse who knows the difference I would look for someone else.
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Rose118 Aug 16, 2018
I agree!! I have worked in home health for 24 years and I'm privy to this stuff professionally, unfortunately its like a crazy mirror house when you are on the other end!!!
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Rose, call and get a new hospice on board. That they are ignoring you and forcing him to hear what he refuses to hear is a huge red flag.

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 😁
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Rose118 Aug 16, 2018
You know what, that's hilarious...I've gotten to know a side of my dad I'd rather have left to hearsay legend LOL!!
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Rose, my husband and I cared for my FIL in our home on Hospice care til the end (9 weeks). He had lung cancer, a goofball size mass and metastases to his rib bones, so lots of pain, and ultimately he had a lot of agitation too. Thankfully our Hospice team was Wonderful and provided all of the support medications necessary, as well as supportive care and the education on what to expect in the end, so it wasn't as scary as I thought it might be. He passed quietly and comfortably, just as he wanted, with us and here in our home.

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!
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The new hospice nurse came, was nice and helpful, did not insist on telling my dad about hospice but did say by the time he reaches a point of no responsiveness they strongly recommend sending him to a hospice bed at a nursing home. I promised my dad to die at home. So I'm using the hospice for what they can provide now, and we'll go it alone at the end if need be with the medications they left. I am a medical professional and POA its time to stand strong and take some authority, I'm tired of crying and wishing it would all magically go away. I appreciate the positive feedback.
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Not sure why they would except a no hospice from a Dementia patient. You could tell him one minute and the next minute not remember it.
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.
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Rose118 Aug 15, 2018
The first nurse did act this way. The second came in very respectfully and showed me how to use all the meds in the kit as well as the nebulizer. The only problem, this nurse strongly recommends sending dad to a nursing home bed "at the end" and we would have to pay a daily fee. We do not have it. If we had any extra money I would pay a sitter to givr my spouse and I a break, although a friend just did this for us so we could get out to lunch together. My dad is going to die at home, we are not moving him from his home of 60 years while he's dying.
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Buehller?
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Rose118 Aug 15, 2018
huh? sorry!
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Dear Rose,
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
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Rose118 Aug 14, 2018
This is great advice and you made me laugh out loud - haven't done that all day! The first thing that goes under stress is sense of humor and creativity with options. You gave me both!
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Is there an advocate to help you? Can you call office for the aging and ask for someone to help you get results?
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Rose118 Aug 15, 2018
The hospice sent a new nurse, they were nice and helpful. They have no idea whatsoever how long this is going to last, I understand its hard to say. So we are just hanging in for the duration.
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Also - the hospice nurse was our first nurse after the admitting nurse came, who was very good.
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