Monthly Archives: April 2014

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.

Open-faced sandwich generation

The “sandwich” generation takes care of their children and their parents at the same time. My only child is pushing eighteen, drives herself pretty much everywhere she has to go, and doesn’t require much in the way of mothering. I can’t really lay claim to taking care of two constituencies at the same time.

To be honest, I’m not even taking care of my parents. I’m helping my mom take care of my dad. Actually, I’m helping my mom take care of the business of taking care of my dad. I arrange for and keep track of caretakers, schedule and attend doctor’s appointments, and roll over CDs when they mature. I’m a jack-of-all-trades and if there’s something I can’t do, I have a husband I can press into service. Today, however, I was stumped.

My father’s driver’s license is about to expire. Now, don’t tell him, but he’s unlikely to need a driver’s license again. Regular readers may remember the post, Keep on keepin’ on, from last summer, at which time we had every intention of letting him get back behind the wheel someday. That, however, is no longer an option, even if by some miracle he recovers enough to drive: I donated his beloved 1988 Chevy Celebrity wagon to Habitat for Humanity for the tax deduction. What’s the problem then, you’re wondering? Who cares if his license expires? Well, for one, he cares. Giving up your license is a rite of passage (or whatever you call the reverse of that) that no one contemplates happily. If you have your license you can hang onto your pride by maintaining that you choose not to drive. I understand completely. It’s probably the same reason I pay extra to renew the motorcycle license I haven’t needed in thirty years.

There’s also a practical use for a driver’s license that is unrelated to driving. A driver’s license is one of the few ways that you can prove you are you. It is the “picture ID” that you take everywhere, perhaps hoping that one day you’ll be carded again when you try to buy a beer, even though you know it’s more likely that you’ll be hit by a truck crossing the street, in which case it’s important that the police are able to identify your body. For those who do not drive, but still wish to purchase alcohol and be able to prove they are who they say they are, there is an official Massachusetts ID. To get an ID, however, you have to present yourself in person to the Registry of Motor Vehicles and prove that you are you.

You also have to go to the Registry in person if you want to renew your driver’s license after the age of seventy-five. Dad has good days and bad days. On a bad day it can be difficult to get him into the car. I searched the Registry’s web site for a loophole that would allow him to turn his license into an ID online, but alas, found none, which means we won’t be heading for the Registry any time soon.

My father can’t be the only elderly gentleman in this situation. People who give up their licenses are clearly not as mobile as they once were. Shouldn’t they be able to use the RMV web site to trade their driver’s license for the more pedestrian form of ID? Given that a license is the gold standard for proving who you are, that’s all they should need, don’t you think? Someone needs to convince the registry to change that rule. Anyone else want to take that on? I’m just too tired. Hey, I may not be as busy as a genuine member of the sandwich generation, but even us open-faced sandwich types run out of energy for tilting at windmills. For now, if someone needs to see a picture ID for my father we’ll hand them an expired license, and if they won’t sell him the beer, I’ll buy it for him.