My dad is 95 with advanced Alzheimer’s. Although he tries, he is no longer verbal and sleeps most of the time. Some days he’s very alert and interacts with smiles, laughs and seems to really be understanding the conversations around him. We He’s been in an assisted-living facility for two years that also allows some memory care mingled in with the other residents. Dad’s Alzheimer’s has gotten worse and he’s not much help anymore. Trying to transfer him from wheelchair to recliner and other positions. He is too heavy at 180 pounds because he’s deadweight. Once they do get him out of the recliner he can use his wheelchair, with their guidance, to go into the bathroom and walk back to his recliner. But it’s getting into the chairs and scooting him around, especially has gotten too much for them. So the ALF has given us two options. One is to have hospice come in and take over from the medical care and the other is to move him to a nursing facility that is more equipped with lifts and everything. I don’t understand how having hospice come in would help with any transferring because as I understand it, they’re not there all day and we do like him five times and 24 hours, breakfast, lunch, dinner and midnight, to prevent bed. Anyone have any experience with hospice at this level of care? It sounds like this decision is being made primarily for the transfer reasons. He does need help eating, but they do that with many of the patients and we are there for at least one meal every day. He has a friend there to help him eat at times.
Hospice care focuses on comfort and not on curative care. He probably would not be forced to get out of bed. He should still be turned every 2 hours and helped to toilet and feed.
It seems you have determined that it is time for a skilled nursing facility.
Schedule a tour of at least 3 and meet with an admissions director. Nursing homes can be vastly different. Some much better, or much worse than others. Find one that will best suit his needs and where you feel he will be most comfortable and cared for.
Ask about the food and the social activities. And take a look at the staff. Do they all look worn down and stressed? Many care workers are overworked due to being short staffed. Take a look at the rooms, patient rooms and common areas. Are they pleasant?
An upscale facility may even have a ceiling mounted track in lieu of a portable hoyer lift, making it easier and more convenient to move patients around.
I feel the same way about ALFs, SNFs, etc. Some are more helpful, better ran than others.
Why not try the hospice suggestion first and if that proves not to be successful, you can move to a SNF. I would get a hospice that would go with your dad to SNF for continuity of care should you later decide to move him.
You don’t have to use the hospice the ALF recommends although that one might be fine. Drill down with your questions so you aren’t assuming something will happen because someone else said it happened to them. you can change or cancel hospice at anytime. It’s on the contract. It’s not like paying a community fee at an ALF. Medicare pays for it.
You don’t have to remove dad from any meds. Hospice will provide the meds he needs to keep him comfortable if he needs those and for any meds needed to treat the condition for which he is on hospice. For instance, my DH aunt gets her Rx skin care and her antidepressants from hospice. She is on hospice for dementia . Her health insurance part d pays for her thyroid and her three BP meds. It’s your choice about the meds. Not the hospice company. I decided to take aunt off of the “memory” meds. She seemed more herself afterwards. Hospice had been and would have continued to pay for those. The hospice may recommend him stopping the meds. Mine never has but I know some do. Do it when you are comfortable with the decision. I liked that little insurance that aunt might not wind up with a stroke and dementia or all the issues an untreated thyroid can cause. Unless it’s life support they don’t just drop dead when the meds are removed. It’s not keeping them alive. Rather keeping them status quo.
Keep his regular insurance just in case he needs something you want him to have. I don’t use it often for aunt but it has been helpful.
My aunts hospice CNA gets her out of bed three times a week to shower. She is bed bound. She is not 180 lbs I hurry to add but the hospice cna is the only one who gets her up for a shower. She gives her a complete bed bath all other days.
My hospice CNA is there 5 days a week, sometimes feeds her breakfast and lets me know what’s going on. She has hospice CNAs on the weekend also. They aren’t as helpful as the weekday CNA but aunt has them. Not many have this service so don’t discount your company if they don’t offer that. Ask for what you need. Let them tell you what they can do or not. I do know many of the staff at the hospice and if I need something, I just call them. I like having the hospice be primary on the care because they are more familiar as we had their home health group for years before hospice.
She also has a longtime geriatrician that we do Telemed appointments with on occasion. You don’t have to subtract care. You are adding care.
Talk to the ALF about how they manage falls without hospice. You may already know that after two years.
With hospice, they can call the hospice nurse who will come check on dad and order an X-ray if needed to be done at the ALF.
When it’s just the ALF they usually have to send him off to the hospital.
Ditto with SNF w/o hospice and some of the SNFs will send them a long distance due to contracts.
When your dad passes while on hospice the hospice nurse will come.
Without hospice the procedure is different. Ask your ALF about this.
It can be daunting to sign the paperwork for hospice due to the awareness that life is growing short. But hospice is a service, not a sentence.
Oh and the only sitters you will get, regardless of where he lives, will be those you pay for.
Your dad sounds like a sweet and well loved man. Let us know how things go.
It sounds like you have a wonderful hospice provider.
I however do agree with them that your father is now too deibilitated for ALF care. I think he requires nursing home care, and turns, and likely SHOULD have hospice, but not for movement.
I am amazed your father has made it to this age with this amount of weight. It is unusual. I wish you the very best of luck. It is looking like you are moving toward the end and I would DEFINITELY discuss palliative and hospice care now, and get Dad moved where he can more or less be bedridden with turns. He will be too difficult to maneuver soon any other way. I am so sorry.
My FIL weighed almost 300lbs when he entered SNF. And he was very little help when transferring. So either two people would assist with the lift straps or they would use the hoyer lift if they couldn't do it any other way.
You do want to make sure they allow hospice though, not all do and you do not want to be looking for a place for dad when hospice is truly needed.
He can walk a distance but can't get himself out of bed? Or *won't* due to his dementia?
So he still has some mobility? I can see why the facility isn't sure what to do with him... I agree that SNF may be the most appropriate place for him, for now.
He needs to be in a facility with a competent CNA staff who knows how to properly and safely use a Hoyer to get him from bed to chair. A nursing home would be the place for him now. That is where you will find Hoyer lifts and CNA staff.
It is possible that they can use equipment IF the resident is on Hospice that might be what they want to do for your dad.
If Hospice comes in the facility will keep your dad until End of Life.
The staff will still have the same problems transferring him that they do now. but because he is on Hospice they will allow him to remain.
He will probably be better remaining with the staff he has now and a familiar room, dining room and other locations he has now.
There is a GOOD possibility that he will not be getting out of his room as much if the staff can not safely transfer him.
Hospice will take over some of the things that the facility now does.
The CNA from Hospice will now be giving your dad a bath or shower the facility staff will not do that.
The Hospice doctor will order medications not the facility doctor.
If there is a medical problem or question the facility staff will contact Hospice not the facility doctor.
If there is an emergency Hospice will be contacted, no transport to the ER.
You will be asked to sign a POLST. It is NOT a requirement though to get Hospice service. (good idea though as IV's, Tube feedings and CPR are not well tolerated at end of life and can cause problems rather than help)
Hospice will provide all the supplies that he needs briefs, wipes, gloves, creams, ointments, under pads.
So as difficult as the decision is I would opt for Hospice rather than transfer dad to a Skilled Nursing facility
Hospice nurses and CNAs will come in max 3 days a week for an hour each time. But the CNA will bathe him, so that's another task the AL doesn't have to manage. The hospital bed is also a blessing, and makes tending to dad easier for staff. MUCH easier to transfer him bc the bed raises and lowers, unlike a regular bed.
If I were you, I'd get the hospice evaluation for dad and keep him right where he is. AL in a private room is better, imo, than a SNF on Medicaid with a roommate especially at end of life when comfort is paramount. Now, if you're self paying and dad can get into a great SNF with a private room, and you don't think he'll further decline due to the move, then consider it.
Best of luck.
Hospice will provide them nothing unless he goes to a hospice facility. Traveling hospice or hospice 'at-home' is a joke. This part of the racket. The guy will be drugged up and in bed. That's what they will do.
Hospice is not going to send two CNA's (this is the protocol for proper and safe use of a Hoyer lift) to get him out of bed and into wheelchair twice a day.
If the father is at the end of his life, actively dying, and needs serious medications to manage pain and other conditions like anxiety and agitation, then hospice is the people to deal with. At least he will as you said be able to remain where he is in a private room.
My father's situation is similar to how you describe yours with the weight and cognitive issues. My dad will be 96 in October. He has adjusted to life in the facility, he has been there since January 2023. His transfers which I think are twice a day take two people and a lift, he is about 200 pounds.
The important thing is your father receives the care he needs now that his needs have increased.