Tag Archives: elderly parents

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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Hope I Don’t Die Before I Get Old

I just finished reading Hope I Don’t Die Before I Get Old, a collaboration between two friends, Mary Boone Wellington and Tracey Bowman, who are the primary caregivers for their elderly parents. They share their stories in alternating chapters and include useful information on all kinds of things you might not know you need to know about, like common medical problems of the elderly, Long Term health insurance, how to clear clutter and more.

There are probably a bunch of books like this on the market, and as baby boomers age there will be more. The appeal here is the conversational style; it’s like listening to friends tell stories over coffee at Panera’s, only with more candor. If you approach the book with that expectation you can excuse the occasional typo and abundance of exclamation points. It is, after all, self-published, but don’t let that stop you. When I met co-author Mary, she observed that it was “…pretty well written considering the fact that I’m a visual artist.” That honesty is a big part of the book’s charm.

Both Mary and Tracey struggled in their roles as caregivers. They were, occasionally, resentful of the time and effort it took, and the sense that their elders were not as cooperative or appreciative as they should have been. That may sound shocking, but I’m guessing it’s not unusual. I’ll bet every child of an elderly parent has had similar thoughts, and then been horrified and guilt-ridden. However, Hope I Don’t Die Before I Get Old posits that the negative feelings may actually make you a more effective caregiver (which may be why the sub-title is How to Survive Old Age: Your Own or Someone You Love) if you pay attention to what those thoughts are really telling you.

After expending effort to make her mother’s house safer and enduring a scolding in response, Mary was hurt, even as she realized that her mother “…longed to be on her own again…without me asking her how she felt, or what she wanted for lunch, or whether she wanted a nightlight in the kitchen.” Her frustration caused her to vent to her friend, Tracey, who helped her understand that “…this process was a kind of orphaning, and my anger was transparent cover for my sadness and fear.”

Who wouldn’t be scared by the prospect of becoming an orphan? That primal fear may be what drives children to worry about their parents long before their parents are inclined to worry about themselves. There may come a day when you have to intervene and take away the car keys, but what if your elder decides on their own that they no longer feel safe behind the wheel? Aging isn’t easy and elders need to be able to maintain some control over their lives.

Reading Hope I Don’t Die Before I Get Old will undoubtedly make you think about your own aging as well as that of your elders. Everyone is different and YMMV, but buying the book is a small investment to make in the future that, if you’re lucky, is still a long way away.

You can buy a copy of Hope I Don’t Die Before I Get Old here.