@Gatormama I would not think your dad would go to a hospice facility but (if Keytruda is still allowed, or when he wants to stop it) they can provide services in the home. Or maybe you are asking about respite care.
Yes, respite care, at least at this point. There are milestone moments coming up in the next year - college graduation, high school graduation, and my husbandâs 65th birthday.
Iâve read that hospice usually provides much less â nurse once a week maybe, aide a few times a week to help bathe (plus chaplain, SW). How many hours a day does the aide come for?
Doesnât Medicare pay for hospice? Why arenât Medicare hospice services standardized?
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Aide is for an hour. One aide stayed the full hour, washed my mother, walked her in the hall (almost like PT) and even organized her drawers. Current aide- I call her Magic Maggie- gets my mother up, toilets her washes and lotions her, makes the bed, gets her back in bed, does her hair- all things noone but me can get her to do. But she leaves when that is done, so probably 30 minutes.
There is a separate Hospice Medicare. Regular Medicare continues to cover things unrelated to the diagnosis. Often dementia is used when there is no other terminal diagnosis but a patient is declining. They used this for my mother. Different hospices vary in how they interpret the criteria- and we have seen that specifically with dementia, where one hospice wants the patient to be non-verbal. I think there are many factors involved, including the resources the particular hospice has. The one we are now using is a virtual empire, a non-profit not affiliated with a health care system, very well-funded, and actually welcoming business so to speak.
Thatâs interesting â thanks for the explanation. My friendâs mother was on hospice for years â she had dementia and was nonverbal. She never went off of it. She lived in my friendâs (large) home along with my friendâs father. They had money to pay for caregivers, also, and both ended up dying in the home.
Neither my father nor my mother had hospice â both of their declines were sudden and steep. My mother refused to allow it for my father. We never had time to get it for her.
Hospice takes a lot of forms. The hospital my mom was at had part of a floor that they designated for hospice cancer patients. I wish we had transferred her there but my dad and sis resisted hospice totally. Even being in the hospital it had a totally different vibe and they set it up for families.
Where I live hospice facilities run from the grand to the ânot for potted plantsâ. My FIL lucked out and got the grand oneâyou donât get much choice since it all depends on availability. And they certainly have a very long list of medical requirements that they go over for qualifying.
âIt dependsâ on amount of paperwork for Hospice. My dad was in the hospital for phlebitis in one leg after being treated only by radiation treatments (chemo was ineffective at the time) - and the hospital chaplain said his decline in one day was like a month for most patients. Dad was on the phone with me a long time on day of admission (Friday) - very unusual for him because he normally talks less than a minute or two on the phone (all business). Our flight in (DH, 1 YO and me) was for 8 days later. By Wednesday, it was âfamily onlyâ - he got so weak. Hospital had 2 in patient hospital rooms for Hospice, and he was in one of them by Wednesday. He died Friday, one week after hospital admission. Two days later was Fatherâs Day and his 64th birthday. We saw him over Motherâs Day, and as we left, I had the strong feeling then it was the last time I would see him. My long phone conversation with him was a gift.
My mother had a dramatic decline with her dementia, and I suggested Hospice evaluation â in her county the need for 3 MDs and easiest by going through local hospital ER. She was taken by brother to hospital on Monday - they approved her for Hospice but also treated her for what they believed was a gall bladder infection - IV antibiotics. Had a hospital bed delivered to her home on Thursday. She was dying, and died on Monday with brother and sister at bedside (she actually âleftâ when they went into the kitchen). Dad died with both sisters at bedside and they told him it was OK to go (he waited until brothers and mom were out of the room getting something to eat). Mom was ready when she went - sister said her face just glowed.
Hospice does indeed take many forms. Most patients receive care in their homes but almost all programs these days have contracts to provide service in facilities and have inpatient beds. Some hospices have their own stand alone building and others have contracts with hospitals for rooms. Weâve had both experiences and I prefer the stand alone hospice inpatient unit over the hospital but sometimes itâs not possible.
Ventâ my mother just moved into IL in a CCRC and there is a maintenance issue.
Me to maintenance-Will you call her first to tell her what time you come so she can be there?
Him- we knock on the door and never go in if the resident isnât there.
Me- oh good, you never go in if the person isnât there?
Him- no, what we do is knock on the door, if no answer, we open the door and announce ourself, and if no one is home, we go in and do the repair.
Me-
. So you do go into the apt even if the person isnât home?
Him- we knock first.
Me- there is a buzz in the phone line. Do you pay to fix it?
Him- usually they activate the outlet in the kitchen.
Me- all the outlets are activated, but if the problem is in your wiring, will you pay Verizon to fix it?
Him- wonder why they activated all the lines?
I finally went to the head office and learned my mother has to pay. Um, no, thatâs not happening.
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Things I have learned today:
My dadâs Medicare Advantage plan is a regional HMO and is not taken by anyone here, for obvious reasons. Changeover to a suitable regional plan here can only be done on the first of the month.
Dadâs next Keytruda infusion is 9/30 in Seattle.
My husband and I are steeling ourselves for bureaucratic snafus; these infusions are something like $20k a pop and we fear the 9/30 procedure will fall through some insurance crack. Dates are non-negotiable. Weâll do our best to ride herd on that process.
I think my PCP will work to be his PCP; heâs amenable but we need to get a PPO with the new insurance, not HMOâŠhe wonât take that. The insurance rep we talked with says that is not a problem and wonât cost more⊠the benefits of going from a high-cost region to a low-cost region, maybe?
Awaiting oncology appointment dates for âestablishing careâ and then first infusion a week later. There should be a window around mid-October that gets us able to celebrate D19âs 21st birthday, visit CWRU with S23 and get dad over here via plane in time for the next infusion. My fall foliage week is toast, however.
He has nothing but 2x2x2 boxes of stuff, no furniture, and he will be shipping stuff via UPS, a couple boxes a day. Shrug, itâs his money. Easiest cross-country move ever, in terms of logistics.
The local aging office is even more bureaucratic than I feared. I called today just to get a sense of services and such. They did not want to talk to me because my father is not a county resident. Sigh. I left a message on a voicemail that Iâm sure will never get returned.
These changes are so frustrating!
Here is another number to try
1-800-753-8827
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[keep a notebook of every phone call you make â the date, the person you talked to, and what happens. It is amazing how much further you can get when you say âI spoke to Person on Date and he advised me Thisâ . I just kept a notebook next to the phone (okay, oldschool landline time). itâs a lot of information to remember, so writing it down made all of us able to check who said what and when.
Youâre doing fine. thatâs a lot of good information harvested for so soon â even if the answers arenât what you want
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This!!!
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@Gatormama Some counties are better than others. I have some names if you are in the Eastern part of PA, feel free to PM me. Also, if your town has a senior citizens center, they often have advocates there. Our local one has reps from an agency that helps you figure out the best Medicare or health plan etc. I went myself on behalf of my parents, so itâs not like you need to wait until your dad is here. Also, $4/month sounds like a bargain! I know itâs a lot of money, but from my research, that is not a bad price for a decent AL.
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Glad you got the ball rolling on these important insurance and health care issues.
Look on line and see if local aging office handles people your age - and if you know anyone that uses local aging services, check with them. Maybe check with area senior centers - people there are often very helpful.
âNot a county residentâ - you are and he will be under your home care. See if you need to sign something as his caregiver - and get that ball rolling as well. Sometimes you have to get around the ânoâ diplomatically.
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@Gatormama . So much great advice above. I need to bookmark this site!
Another suggestion: Do you know any Occupational Therapists? They are invaluable (at least those I know), and can suggest modifications specific to your fatherâs abilities, both now and in the future. Even if alterations meet ADA standards regarding handrails, turning radii, clearances, etc., they are still guidelines for âgeneralâ challenges. Sometimes a specific change (handrail on the left vs. right for instance), makes a huge difference for the particular need.
One small reminder if youâre renovating a bathroom: Make sure the door swings OUT. Too often, when thereâs a problem (fainting, fall, etc.), the occupant falls against a door, making it very difficult for a caregiver or EMT to access without removing the door. A contractor who specializes in senior renovations may know this, but usually not, since an outswinging bathroom door it is not the norm.
Youâre father is fortunate to have your concern and assistance! Hugs deserved.
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If there is no space for a swing out door, a barn door or a pocket door might be a solution.
(Our friendsâ toddler gave them a big scare by âlockingâ himself in the bathroom: he pulled out a drawer that completely blocked the door from being open and then freaked out because he somehow could not figure out that to get out, the drawer must be closed)
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For both my parents and in laws, we wound up removing the bathroom door (and in one case the moldings to clear a wheelchair.) We hung a curtain.
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(Donât mean to derail this useful conversationâŠjust need to scream into my pillow.)
talking to Mom early this morning, she affirms that my father does indeed intend to do the driving â 6 days a week he volunteersâ once he gets his new glasses in a week or so. Canât read, print is too small. Canât hear well. Processing ability and right hand impaired from two 2022 mini strokes. On O2, which he sometimes takes apart because he feels it doesnât work right. (Retired engineer) Cancelled his PCP appointment as a waste of his time (and heâs not entirely wrong on that). No way he is ready to drive (he hasnât in more than a year)
Local sibling and preferred sibling think there is no real problem with this plan, and as the Anger Magnet, I have no traction on this. Ooof.