When is it time for HOSPICE in dementia?


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Today’s topic that a lot of people don’t love chatting about, is the H word…hospice. When do you know that it’s time to transition a person living with dementia into hospice?

A lot of people think hospice and they think, oh, the person has to go somewhere. And that’s not necessarily true. In fact, for the most part, hospice companies will come to your house where your loved one is, or they will go into the dementia care community or assisted living or what have you, and visit your loved one. So, the real answer here is probably before you’re comfortable with the concept of hospice, that’s probably the time for hospice.

I just talked with a woman about this on Clubhouse. If you have an iPhone and you want to download the Clubhouse app, you can join my group called Dementia Conversations, where we talk about this kind of stuff. It’s free and it’s pretty cool. And this woman said, you know, I talked to our family physician about hospice. And he said, well, I don’t think your mom’s ready for hospice yet. Another caregiver chimed in and said, do you know what? Our family doctor said the same thing. I knew better, went to a hospice company, and got my mom on hospice. Family physicians can’t know everything that’s maybe not their specialty, like dementia. They can’t be an expert on dementia. And the decline in progression in dementia is really different than if someone has chronic heart failure or C O P D or something like that.

So people will wait and go, oh, well, you know, my so-and-so was on hospice and they looked like this, but this person with dementia looks totally fine. Or, you know, they look about the same as they did before. They’re just sleeping more. They’re just not eating as much. They don’t seem to take pleasure in much anymore. You know, these kinds of signs and they’re going, well, it’s just a sign of dementia and it is. But that could also be a flashing red light that it’s time to look into a hospice company. So the short answer is probably before you’re even really comfortable with the idea. People hear hospice though when they freak out because they’re like, well, you know, I don’t want my loved one to die. Why do I want to put ’em on hospice? Hospice means we’re not doing any life-saving measures, so we’re not taking this person to the hospital, et cetera, et cetera. But this is a good thing. Hospice is a wonderful program. It’s paid, free for you, paid for by Medicare, and you can get pretty much whatever you want. So if you’re like, Ooh, we need a hospital bed, it’ll be there tomorrow. We need adult briefs, we need wipes, we need gloves, it’ll be on your doorstep in a couple of hours. It is a great program. I’ve had personal experience with it, and I’ve had professional experience with it. And anytime I helped a family get a loved one on hospice, in the beginning, they were like, whoa, whoa, whoa, I don’t think it’s time for hospice. They’d get the loved one on hospice. The loved one would do so well on hospice that they would be ready to like leave hospice, like graduate from hospice care because they were doing so well. And the family would come to me and say, Hey, ooh, we want to keep mom on hospice because she’s getting excellent care. You know, we got counseling through hospice.

We have this music volunteer. I mean, they have a lot of great resources. So the short answer is to look into it before you think it’s time. And the worst case scenario is hospice says to you, oh, they’re not ready for hospice yet. Okay, well then we try again in six months, we try again in a year, whatever. No harm, no foul. I hope that this helps you a little bit today.

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of three published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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