Last week we were able to get my Dad onto Hospice. No, my Dad doesn’t have a terminal illness, although he sort of does: it’s called old age. I also pointed out to my sister that dementia actually does kill — people with dementia slowly lose their ability to move, and to eat properly. They are at higher risk for aspiration pneumonia because of this (when food goes down into their lungs).
I know this sounds very sad, and it is, but the fact that Hospice is still available to him gives us hope that his remaining days can be eased at least a little.
What is Hospice?
Hospice (you can access the Hospice site here) is covered 100% by Medicare. My parents have Long Term Health Insurance, and that covers part of the Nursing Home expenses — but not all. Not nearly enough, quite frankly. It was a big relief to hear that Hospice won’t be an extra expense.
Hospice is for people who are not expected to live more than 6 months, although people can get better on Hospice, to the point that they are on it much longer. They are re-evaluated every six months.
Hospice adds a whole other layer of care for my Dad, potentially including:
- A nurse who visits once a week and can help determine what medications will keep him comfortable — and what medications are not necessary (although the family has the final say about all medications)
- Aides who visit one or two times a week, who feed him, shampoo his hair, shave him, and a lot more
- A non-denominational minister
- A social worker
- Music therapy
- Pet therapy
Because this is all new to us, we don’t yet know what services will be recommended. There is also a 24/7 hotline that the family can call, even if we just need to talk.
How to know when a dementia patient can be eligible for Hospice?
There are guidelines for whether or not a dementia patient is eligible for Hospice. My Dad was right on the bubble, but thankfully the nurse deemed him eligible. If she had visited him before he entered the nursing home, I don’t think that would have been the case, but in the short amount of time he’s been there there’s been a sharp decline, including being non-verbal and not recognizing family; not even my Mom.
The Hospice Intake Nurse follows the Reisberg Functional Assessment STaging Scale (better known as FAST).
My Dad was definitely Stage 6 prior to going into the nursing home. He was still verbal sometimes. Often he wasn’t, but when he was, he was quite definitively — and not in a good way. Not in a way that he would ever had acted when healthy.
All the stays in rehab, hospital, the moves, the strange caregiver, and now the nursing home . . . change is very bad for a dementia patient. All these changes definitely seem to have driven him into Stage 7, and quite frankly, I thank God for that. The last day I say him (after New Years Day) he didn’t speak and he didn’t seem to recognize me, my sister, or my mother.
He wouldn’t have qualified for Hospice before, and would have spent his days in a recliner by the nursing station, because he gets up and tries to walk and he’s at risk to fall.
Hospice can be hopeful
Of course I am not happy to see my Dad this way. No one is. He doesn’t have cancer, although he does have some serious heart disease, but in the end, mainly what he has is old age. His birthday is the end of March. He will turn 94 if he lives that long, and no one really wants to see him live that long.
He is deeply depressed and unhappy, and has been for a long time. It will blessing for him to pass and be at peace, and I visualize that often.
Hospice is historically underutilized for dementia patients, and that is so sad. We didn’t really know it was an option until recently. I wish I’d known about it for my FIL, who also suffered from dementia for many years. I’m sure both my FIL and my MIL and SIL would have benefited greatly from Hospice care.
That’s why I’m writing this post: I hope that it will help others that are unaware that it’s an option for their loved ones.
Hospice means that my Dad has a whole team trying to make his remaining days as peaceful and comfortable as possible. The nursing home seems very caring and competent, but they can’t give him one on one attention.
My sister visits him often, as she lives close, and might begin to take my Mom on a weekly basis if she wants to go. I will go when I can, but it’s a long trip and the weather during Winter makes it impossible to go on any routine basis.
Hospice can give my Dad that individual attention. Hospice gives me hope that my Dad can finally have some peace.
Do you have loved ones with dementia?
Have you ever known anyone on Hospice?
Do you have any other resources to share for those with dementia, or caregiving for those with dementia?
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