How to know when to use hospice
Hello, I don't know where to start. My Dad is 88 and has alzheimers and its getting worse. His short term memory is almost gone, now some long term and he has can't understand things very much anymore. He lives in assisted living, but he is getting worse and his physical health is failing. My sister and I are durable medical POA. He didn't have a living will. He has signed a DNR. He has had a mobile dr since being in the hospital but now we have to change due to insurance. The assisted living had us talk to hospice care. They have said that they, this specific company, do not stop all medications, they keep them on what they are and add what will make them comfortable. He has stated that he doesn't want any more procedures, surgery or tests. So, do I find another mobile care or go on hospice. Does it save money? His costs have sky rocketed for care and i don't want to run out of money to keep him where he is. He can't handle change. I am afraid of choosing hospice and then he goes down hill faster and I will feel it's my fault, even though that doesn't make sense in this situation. Can anyone share their experience with hospice?
Comments
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I wanted to add that he is still walking with a walker and dressing himself, doing daily care with just an attendant for showering. He has had issue swallowing, has a suprapubic catheter, and gets some infections with catheter from him touching it.
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sorry y to I hear about your situation. It doesn’t hurt to have hospice come and do an evaluation of your Dad. They will tell you if he is ready or not I believe.
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First of all try to let go of the “all my fault” self talk. You sound like a loving daughter trying to do your best by your father. I can’t speak to if hospice saves money. But my mother was in hospice for about her last 6 months in AL. They were wonderful. She too did not want anymore trips to the hospital for anything. I don’t think hospice changed the trajectory of her last days except to make her more comfortable. Also, towards the end she had run out of money after 7 years there but they did not kick her out. They took her SS, and I applied for veterans benefits and then Medicaid paid half. A good AL often has one or two Medicaid beds for those who have been there awhile on self pay and do not have long to live. They truly cared about my mom and didn’t want her to have to move either. Sending big hugs as you navigate this phase.
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Thank you both for the replies. He would be getting hospice care while still in his apartment at the assisted living for as long as he can stay there safely.
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My DH went on hospice in April and passed in June. I struggle like crazy thinking that I was killing him, or letting him just die by not seeking medical intervention. Once I wrestled with those thoughts, I came to the conclusion that Hospice would be the kindest decision for his situation.
Here’s text I sent to his children explaining the decision.
I want to let you know that I have officially enrolled your Dad in hospice care today.
This was not an easy decision, but it is the right one. After a lot of thought, prayer, and conversations with drs, I have finally accepted that he is living with a terminal illness that is not going to improve.
We’ve reached a point where continuing to chase treatments would not change the outcome. This was the hardest part for me to make peace with. But knowing that the only thing chasing treatment would do is put him through more procedures, discomfort, and more disruption, without giving him more meaningful time or quality of life made it easier to make.
Choosing hospice means the focus is shifting from trying to prolong life at all costs to making sure he is as comfortable, peaceful, and cared for as possible. My focus now is on comfort care and the time left with him.
This decision is not about giving up. I struggled mightily with this one, but it’s about loving him well in this season and not asking his body to keep fighting something it can no longer overcome.
Right now, the most important thing is making sure he is surrounded by peace, love, and care.
In the end, I wish I would have chosen hospice a bit earlier. These are very difficult decisions to make, be gentle with yourself.
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Very well said - you really did the very best you could. I may borrow a few of your phrases when the time comes here.
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In my opinion, go with hospice as soon as you can qualify. They will provide all medications and care supplies/equipment, so it can save money. More importantly for me, they will assure that your loved one does not get shipped off to the hospital for some bogus reason. He's already said he doesn't want procedures, care, or tests, so that is not you making the decision, rather you are respecting his wishes. There is no room for guilt here. Everyone dies—we just hope for some control in how we go.
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@Jodikay
Sometimes it's a chicken or the egg situation. Decisions made around care are often driven progression in the disease that seems subtle in the moment. This can make it seem like "dad went downhill once we placed him" when in fact, you picked up on the start of the final decline and added help.
I would bring on hospice asap. We missed out of hospice because it was suggested late. Dad was still mobile, self-feeding, and very verbal so his silent aspiration was missed. He was due to have an evaluation hours after he'd died from pneumonia.
You can interview several before making a choice— I would specifically ask how they would respond to infections related to the catheter and to pneumonia.
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My husband kept his own Drs.
Please interview more than one Hospice. While they must all do the same thing personalities differ and you will not like all the same.
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I am going to look into Hospice for my DW. She is stage 5-6ish, and at home with me. She needs assistance with dressing, toileting etc. however not in need of MC yet. I was told by someone that they had a family member getting Hospice aid in home, therapies and some caretaking whatever that means. I'm going to get evaluated to see if we qualify for anything. I am not hopeful because Medicare doesn't seem to pay for much caregiving assistance. At the moment we can't afford private home health care aids.
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Hospice will provide the medications, Adult diapers, wipes, a hospital bed if needed. Shower help, a chaplain, a social worker for you, a visiting nurse. These are all extra sets of eyes to help provide comfort care in addition to the AL staff. My parent’s AL allowed them to stay until death once they were on hospice. On mom’s case, she had dementia and hospice was called in to provide her extra help- she was not expected to die. Although she did - but that was nothing that hospice did.
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My experience was similar to what @Quilting brings calm experienced. I was told later that most hospices work in teams - an RN, a social worker, a chaplain, and then aides who help with showers or bed baths. Medications are all managed by them, which I was also grateful for.
My sister was in stage 7 and in memory care when I called hospice - I wish I had had her evaluated sooner. They were so wonderful with her.
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We had a nurse, home health aide, Chaplain, and music therapy. My husband was many things in life, one of which was a music teacher, so he thoroughly enjoyed the music therapy. They came and sat by his bedside and sang to him music that I provided them with that he enjoyed. Each one came and performed their specialty, but no one stayed longer than a half an hour.
Regarding in-home care, some states have programs that help with that. I live in Minnesota and I was on a DHS program called Alternative Care. It’s meant for people who qualify for nursing home care but prefer to stay at home. The program paid 85% of what it cost for someone to come into our home 0 to 77 hours per week. It was up to me to decide how to and when to use those hours. I never got close to 77 but it was nice to know that 85% of the charges would be covered. And I understand VA has something, but I don’t have information on what that is. Take a look at your state DHS and see if there’s a program that would help you within Home Caregiving. It might be worth looking into.2 -
Your story is gripping and an inspiration to me. We hopefully are a little away from hospice but you give me the strength to know when to put him in hospice when the time comes. My heart and prayers go out to you - you are a strong person.
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💕 I believe everyone in the battle of dementia, caregiving is strong, is brave, is being asked to give things they never knew they had. I often would say that dementia caregiving kidnapped me, dumped me in a foreign land where I did not know the culture nor the language, and I had to learn on the go or get eaten up by the natives.
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I have never heard anyone say they should have waited LONGER to bring in hospice. When families experience what hospice really does for the benefit of the patient as well as the caregivers and families, their eyes are opened to what hospice really does. It is not about giving up, it is an acceptance of the fact of terminal disease and making sure the PWD and caregivers are supported during one of the most stressful experiences that anyone experiences, whether that is for days, weeks or months. It is NOT about hastening death. There are misconceptions and stereotypes you must look beyond to see the facts of hospice care. Don’t let misplaced ‘guilt’ prevent you, as a caretaker, from enlisting help where you can get it and that includes hospice. I also recommend (again) families try to read ‘Being Mortal’ which can be very helpful in coming to grips with the inevitable end that we will all experience.
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So yeah, everyone is right - bring hospice in now. Tonyac2 really summed it up nicely. As for costs, there shouldn’t be any if he’s under Medicare. But you will save by not going down any more health related paths with other doctors. It’s about comfort at this point.
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This Thursday I will begin the grief counseling that they offer. Hospice provides up to 13 months of free counseling. Oddly enough, I am not only grieving loosing my husband, but I’m grieving the loss of my caregiver identity. Complicated for sure. The night after burying my husband one of my granddaughters looked at my stove without out the knobs and gently said, “grandma, you can put the knobs back on the stove now.” I immediately broke down crying. She apologized for saying what she said. I told her, “it’s not you honey, Grandma lost her caregiving job last Friday and she can’t figure out how to clock out.”
I’m going to need help with that.12 -
Tonya, a giant «HUG» going out to you. One step at a time, one moment at a time you will begin. There is no rules about when or how to walk this journey. Your grace as you enter into stage 8 is inspiring.
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Thank you so much for sharing this and being so vulnerable and caring. This is really helpful. He was evaluated and currently didn't qualify but I know it's down the road so it was good to learn some of the process. They are going to put him on a bridge program. Your letter to your kids was beautiful. Thank you so much!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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