Minding Our Elders: Caregivers benefit from hospice education ahead of need

Dear Carol: My dad is in a good assisted living facility (ALF). He’s 96, and other than congestive heart failure, he’s in fair health for his age. He has a good attitude overall. Dad was having physical therapy for knee problems but now refuses it. I feel that at his age he can do what he wants, so I haven’t pushed him. He uses a wheelchair to get around for the most part, but he can transfer himself. The nurse at the ALF said that he’d probably qualify for hospice care, though a doctor would have to make the determination. She said that it’s a good idea for us to check into hospice because they can offer types of assistance that the ALF can’t provide. She also said that most people wait too long to contact hospice for information. I’ve been curious about hospice because I know that Dad’s heart failure is getting worse and his overall health is declining. Should I contact hospice now? – SK

Dear SK: I’m happy to read that your dad’s spirits are good. Apparently, he’s content with his care and any pain must be well-controlled or he’d complain. That being said, educating yourself about hospice care now is a good idea. The nurse is right in that most people who have used hospice care regret waiting as long as they did to learn about it.

Considering your dad’s mental outlook, and the fact that he seems content as he is, he may not qualify unless he stops taking his medications. Therefore it’s likely too early for him to go on the program. It also sounds to me as if he is cognitively capable of being part of this decision, so I’d suggest talking to him now about his quality of life and what his choices will be as his health declines.

That doesn’t mean you shouldn’t check into hospice though, especially considering your dad’s worsening heart condition. Learn all that you can. If there is more than one hospice organization in your community, interview each of them to see which one seems to be the best fit. Information never hurts anyone and it’s always harder to make decisions under stress.

In general, people don’t understand that hospice isn’t just for the last weeks or days of life. If a doctor feels that your dad has six months or less to live, she may decide that he qualifies and would benefit from hospice care. If he lives longer, that’s great. The estimated time is simply an educated guess to use as a measuring tool.

I’m glad that you are supporting your dad’s decisions to do as he wishes. Keep enjoying him and encouraging him to do what makes him happy. That’s what life for him is about now. The assisted living nurse is right about hospice being a phenomenal help when the time is right, and that time is likely to come before too long. By educating yourself, you’ll be prepared.