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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Chocolaterunsjudy 
What a useful post for others going through this pathway. Much love to you for having the strength and compassion to think of helping others when you’re going through such a tough time.
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Thanks, Liz.
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Judy, thank you for writing this post. I can’t even imagine what you and your family are going through. It’s comforting to know that the hospice provides some relief for the patient and the family.
At the moment, I can see some signs of dementia creeping up in a loved aquaintance of ours. She is “only” 76, and looking at your table, she seems to be between stage 2 and 3. It’s good to think of all the options well before severe dementia sets in!
All the best to you, your family and your dad.
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Thanks, Catrina. I know that many people don’t even know it’s an option — even after going through it with my FIL, I had no clue. I want to make sure people do know!
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My MIL was put in hospice when she had lung cancer. A very different situation from what you are describing. She had chosen not to do anymore treatments and it was the best for her at the time. My own grandmother passed from Alzheimer’s 5 years ago and that was in a way harder bc it lasted so much longer. Once she couldn’t remember any of us it was really hard. Sounds like hospice for your dad will make him safer and more comfortable as he lives out his days. That is all we can hope for for our loved ones. I hope it gives you some peace to know he is safer and taken care of. xoxo
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I never can decide whether diseases like cancer or dementia are worse. It’s horrible to see someone in pain, but the truth is, my father is in mental anguish (and so was my FIL).
Yes, knowing there are people there for him, when we can’t be — it helps a great deal.
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I am so sorry to read about your father, Judy. It must be hard for you to see this decline.
My dad, who had prostate cancer, had hospice for less than a day (at my parents’ house) before he passed. The hospice worker was just explaining how hospice would work to my mom, they looked over and Dad wasn’t breathing. I had just seen him a few hours before, but I don’t think he knew I was there.
My mom had dementia for 3 years after a stroke. It was sad to see that once-dynamic woman struggling so much. Mom used to say “getting old isn’t for sissies” and she was right! When I look at the 7 stages, I can remember mom’s progression through them.
You are a good daughter to care for your parents and I am sure you have helped others with this informational post. Thinking about you, Judy!
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You went through a lot with your parents. 😦 So you know first hand how hard it can be. I don’t think my Dad has 3 years left, and I sincerely hope that he doesn’t.
My FIL suffered with it for about a decade. I really wish I’d known about this then.
My Dad’s decline since his hospital stay in September has been shocking. Even after just one week in the hospital he was a different man.
It’s very true, getting old is not easy — even if you manage to remain healthy.
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Looks like you made the right decision with your father.
My MIL is mentally alert but has limitations due to eyesight and hearing. She has been probably depressed since her husband died. She would be better off in a facility with other older adults. She is stubborn and wants to die in her house. So you have to sometimes abide by their wishes even if it’s not in their best interests.
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If we’d abided by my parents wishes, they’d still be living in my childhood home. With no easy way to get anywhere since they don’t drive. My Dad no doubt would already be gone, because he would have probably killed himself on the stairs. Maybe that would have been a good thing, actually.
OTOH, as much as my mom is not happy living where she is, she has a support system there. She would have been so isolated living in that house.
Sometimes you have to do the hard things and do the right thing.
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My MIL has her son and grandson nearby. It works. And she is happy
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Thank you for sharing your experience. I’m very sorry you’re going through this, Judy. My FIL had dementia and passed away a couple of years ago. I had no idea hospice was an option for patients with dementia. It will be good to know going forward with my MIL, who also has dementia. Right now she’s about stage 5 with some aspects of stage 6.
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That’s exactly why I wrote the post. I had no clue, and I’m so glad I found out before it was too late.
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❤ ❤ ❤ ❤
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I’m so sorry to hear that you’re dealing with all this but it sounds like this is a good solution. I didn’t know hospice was an option for some people suffering from dementia. That’s really useful information, thank you for sharing!
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Yes, a lot of people don’t know — and I think it’s such valuable information to have. That’s why I shared it.
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Oh this breaks my heart, but also shines a lot of brightness on your situation. Your father’s comfort and safety are paramount; it sounds like he’s in a great place for the care and attention he needs. I sincerely hope this helps bring some peace to you and your family, Judy ❤
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I do feel blessed that he qualified. The intake nurse said it’s often very heartbreaking when they don’t.
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My heart goes out to you and yours, Judy. It’s such a tough, tough time. My husband’s grandmother had dementia. It’s so difficult when they know longer recognize family.
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Thanks, Marcia. My father has had a mostly good, and obviously very long life. The end has been very sad, but not much we can do about that. Knowing that there are wonderful people who will do this — I think it’s amazing. I don’t think I could for complete strangers. I can’t even imagine how draining it must be, although sometimes it’s not as bad when you’re more emotionally distance, I suppose.
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Oh Judy, I am so sorry you are going through this. It is so hard to watch our loved ones age. My Grandmother did have cancer and had hospice. This was 12 years ago now and I don’t think I had ever heard of hospice before. The day I found out what hospice actually was, I was devastated! I had to come to terms that she wasn’t getting any better and that we were just keeping her comfortable until that time….
Hugs to you -M
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I have had to say to my mom that there is no getting better, it will only get worse many times. It’s a bitter pill to swallow.
Thanks, Meranda. Hugs appreciated!
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My father was on hospice. He had 4th stage cancer. He chose to die at home. He was still doing things for himself until the last few weeks of his life. I cannot speak highly enough of the team to cared for him the last few weeks. They provided dignity & care. They gave the family the support they needed as well. I am so very sorry for your situation. It is so sad. The cancer got to my father’s brain so I can relate to your situation. My father would become so upset because he could not communicate. You made the right choice with choosing Hospice care.
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As hard as it must have been, I’m glad he was able to stay in his home. With no one close enough to help out, it was not an option for my parents. In fact, even with help, it truly was just not an option; their house was dangerous for them.
My FIL would be upset at not communicating. My father is not aware enough, really. Although he does get upset when he wants to do something he thinks he can do — and is told he can’t. So there have been falls, because even if you’re right there, it’s just impossible to prevent.
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Hospice is a wonderful resource and it seems that people don’t access it early enough. I’m glad you had the foresight to get it in place. ❤
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Hospice is absolutely a wonderful resource. I think many just aren’t aware of what it can offer. I can think of many relatives who really could have benefited from it but it was never used for them. It’s sad. That’s why I wrote this post.
My hat is really off to those who choose to do Hospice work. They are wonderful, wonderful people.
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Oh, Judy, I am so sorry to hear how quickly your father’s health is declining. You’ve provided a lot of very good information for your readers about hospice – it serves far more people than I realized. Sending hugs your way as you navigate these coming months.
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Thanks, Debbie. Yes, I think it’s important information too many don’t know.
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Super helpful post. Hospice was great for my aunt — unrelated health issues. The staff was amazing when we visited. Mom went to the hospice support group after Dad passed, although he never went on it. SUch a giving people.
My grandmother was supposed to start hospice on a Monday for dementia and related complications – well she had other ideas and died Sunday night
Will be thinking of all of you
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I’m so sorry for your loss, Cari. Big hugs.
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