Palliative care for the living

Today I went to a talk called, Planning End-of-life Care, given by Dr. Ira Byock, the author of Dying Well and The Best Care Possible. Dr. Byock is, among other things, the Director of Palliative Medicine at Dartmouth–Hitchcock Medical Center. He is a very polished, engaging speaker; authoritative, charming, and occasionally amusing. I picked up several one-liners that I hope I’ll remember when next I am in need of a bon mot at a cocktail party, but on the whole, I was disappointed.

My father is not aging well. No one has told us that he is dying; he could well live many more years, but how is one to know? While he has good days and bad days, the bad days are getting so much worse that the good days don’t have to be that good to qualify! He is very weak, his voice is soft, and he spends most of his time sitting with his eyes closed even if he is not actually sleeping. It is difficult not to interpret his condition as the beginning of the end. I was drawn to this talk, billed as “A Palliative Care & Advance Care Planning Public Forum,” seeking enlightenment about what’s down the road, even as we continue plan for his long term care.

I interpreted the phrase “Advance Care Planning” to mean that one could plan for the necessary care in advance. That was a mistake, because aside from hearing platitudes like, “Care involves physical, emotional, social and spiritual aspects,” I didn’t learn anything particularly actionable. I was hoping for answers to questions like, when do you give up and move your father to a nursing home; is it practical to teach home health aides how to use a hoyer lift; where do you get a hoyer lift anyway; and if the patient can’t walk does that necessarily mean they need to be confined to bed?

I did perk up when Dr. Byock said that for palliative care at his hospital, Dartmouth-Hitchcock, “You don’t have to be dying; you have to be mortal.” Hmm. Well, Dad’s mortal. If that’s the criteria, shouldn’t there be some palliative care group that we can call who will come in and show us how to provide him with a better quality of life while he’s alive? I’m sure that all the nurses in the audience who were collecting CEU for attending found the talk worthwhile. I could have stayed in bed.

Taking care of an elder at home can be a labor of love, or an act of desperation, or a little of both. Every day is a new adventure. Two bad days in a row are cause for grave concern. Two good days in a row are proof that we are worrying unnecessarily. Do you need more than that to understand how crazy making it can be? And if all the caretakers end up crazy, who is left to help my dad?

Please believe me when I say I’m not trying to hustle my dad along. But quick, unexpected deaths that result from a heart attack, an accident, or an “Act of God” (to quote insurance companies) have got to be easier than watching a slow decline. As Byock said, “Death is a natural disaster that awaits us all.” We can rail against it all we want, but, “We’re going to die. Let’s get over it!” I’m not ready to get over it yet, but that doesn’t mean I won’t quote him over drinks one night soon.

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9 responses to “Palliative care for the living

  1. Judy, I so know what you’re going through and my heart goes out to you. If you want to talk on the phone anytime, let me know good times to reach you.

    The problem is, it’s hospice care people who have all the information. So before you put your parent in hospice, you don’t get the social worker, the chaplain, the nurses, the home health aids, the information, etc. We had this same problem when my mother got sick. We had no idea how to care for her and services were limited before hospice. One needs training. Here’s the trick (at least in Texas). You can put someone in hospice care, and it can last for years. It means they get good care and more services (at less expensive). And you can take the person on and off of hospice whenever you want (to get them treatment that is not just palliative)! But many treatments can be covered during hospice if they also relieve symptoms and provide comfort.

    Nurses are the people to talk to, not doctors. Find a non-profit hospice in your area, call them, and book an appointment. Find a few and shop around. They will come to your home and talk to you at length about specific services that are offered, available, and some have other options for in-home care. This is from my limited knowledge though of course.

    You can also try to find a social worker who works with seniors. We didn’t do that so I’m not sure how it works. This person would help you coordinate care and figure out your needs and inform you about services.

    Don’t be afraid of the word hospice. It doesn’t mean you are resigned to death. In the U.S. it seems to be the main way to get humane care for a very ill person. And someday, if pain is involved, it’s very important. They give you easy access to all kinds of medications.

    These are just my quick thoughts on the matter and if they don’t match your situation, I apologize. It’s just what I learned during our journey with our mother.

    Sending my love,
    Annette

    • Annette, what helpful guidance! I’m really okay, truly. My blog is a convenient place to put some of my thoughts and reactions, but I may overstate in the name of readability. Not that what I write isn’t my current reality. Anyway, thank you for your kind offer. I’m sure you’ll hear from me someday!

  2. Ask around–you might be able to get in-home hospice care.

    • Absolutely, in-home! I assumed that’s how it would be! That’s what we did and we were able to provide much of the care and keep my mother at home. It’s the way to go, until it becomes too much for your mother or his needs become to complicated.

  3. I remember thinking that I wish I knew what my dad was thinking or what he wanted. Did he want to die, or did he still want to have more watermelon or ice cream or sun on his face or a glimpse of a grandchild or one more talk with my mom…..I was never really sure. It was frustrating and hard. I felt there was no one to say, at this point, here is what you need to do, so you just stumble along feeling guilty and unsure……………

    Hang in there.

  4. Judy – a lot of Annette’s experiences sound similar to my experience with my dad in California. The Hospice people were just the best. I think you can get a social worker that just works with seniors. We’ve been trying to figure out how to get my mother-in-law to move out of her house in Staten Island.
    What I can tell you about a little is a hoyer lift. CNA’s are taught to use them by themselves. I think anyone can learn. There are a lot of tools to help with elder care, like a slippery sheet that makes it easier to move the loved one.
    I used to work in Workers’ Comp for some nursing homes. It is a decent size industry.
    Check with your health insurance, they may have suggestions what’s next.
    Good luck!

  5. Hi Judy, thanks for being so open about this, and I’m sorry about what you’re going through. Like the people who posted above, I’ve heard wonderful things about Hospice. My mom is still living alone and is fairly healthy, but as she gets older and weaker, I imagine it’s only a matter of time before I’ll be dealing with similar frustrations. And as for what you said about sudden death strikes a chord. My dad was at my house one day–13 years ago– taking care of my son, and the following day, he had an aneurism and died. It was terrible–inexplicably terrible to the point where it made me numb for months–but in retrospect, I think it was easier than watching a slow decline. On the other hand, I never got a chance to say goodbye, or to really let him know how much I cared about him at the end of his life. I guess we all just need to take these things as they come and do our best.

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