A snippet from my "advance directives..."

...which do not actually exist yet in written form, my bad. My state is a "Five Wishes" state, which means that I could, if I choose, use the very popular "Five Wishes" document to define what I do and don't want at the end of my life and most particularly identify the person to serve as my agent, medical durable power of attorney, whatever it is called where you live.

Now, I do have some problems with the Five Wishes--there are some twitchy items I could choose, like wanting everyone in my family to resolve any differences they may have if possible (talk about a good guilt trip to lay on the family as one trips out the door), and wanting all my loved ones to know that I see my death as a time of personal growth for them and me so that the end of my life will have meaning (hmmmmmmmmmm.... that is just too New Age for me and I think there are plenty of things that give life meaning that don't require me or anyone else to think about personal growth). The biggest thing about Five Wishes is that it is a wonderful vehicle to begin thinking about end-of-life issues, but it can't possibly, in itself, carry all the context-sensitive information that you'd want folks to act upon near the end of your life. Thus, you must choose your representative with care and have many conversations with that person, and/or write a lengthy addendum to the Five Wishes. If I choose the Addendum Option, I suspect mine will be about 30 pages long, ranging from the sublime, as:

If I have end-stage dementia and I hate my life and I fall and bust my hip, I truly do not want to do surgery and rehab for the busted hip. There are times and places for huge amounts of painkillers, frequent access to ice cream and mashed potatoes, and letting nature take its course. That's one of them.

To what may seem ridiculous:

If I am in your facility, and I am not able to speak, and you feel impelled to turn the TV to the "relaxing music" option, resist. Resist with all your might and main, because I WILL haunt you. Some "relaxing music" (stuff by Will Ackerman, very notably) is absolutely beautiful and I like it. But the rest? Elevator music. And that stuff sounds to me like fingernails on a chalk board. While the resulting increase in my pulse and blood pressure may be initially gratifying to you, it means I am going nonverbally nutso. And in this, as in so many areas of life, it is, truly, the little things that make a difference.

From time to time I'll put snippets of my Imagined Addendum into the blog with the hope that they will (a) inspire focused thought on your part about your own Advance Directives, and/or (b) make you laugh.

Sacred space in red flannel

In the past several months I've gotten to visit some patients who are receiving hospice care at home with relatives as their principal caregivers. I have seen some caregiving that is so exquisite, so tender, that even remembering brings me to tears. There was one man who was wearing his favorite blue striped pajamas along with a pair of shoes that were meant for serious walking. He was hours from death and not really responding to voices. His family told me he'd wanted those shoes on earlier in the day. "We don't know why," they said. "But he wanted them, so we put them on him, and he seemed to like that." His room was quiet, softly lit, comfortable in temperature, and the most restful place you can imagine. Friends as well as family would come and sit silently with him for a while, and his old dog wandered in and out. The love in the room was palpable, and so was the peace. The family had wanted a prayer and a blessing for him before he died, and that's why I got to meet them. I think his blessing had come, time and again, in the love with which he was cared for.

Another patient was tucked up in flowered nighties, amid a riot of flowered sheets and pillowcases. Her bed was placed so that she could look out into the garden if she liked. The room was full of family pictures and treasures. The caregiver and the patient were delighted to have days to simply be together. "I know the sheets don't match," said the caregiver. "But she likes flowers, and I found everything I could that had flowers on it." The effect was simply joyful.

Recently I visited a home where the patient, who had had dementia for some years, was dying. (She died the next day.) Her family had cared for her at home all those years and now were preparing for her death. Her caregiver had dressed her in soft, old, comfortable flannel, and all the sheets and pillowcases that touched her were also flannel. The caregiver told me she wanted only soft things to touch the patient, so that nothing would rub or chafe at her skin or cause her distress. Red flannel, blue flannel, flowered flannel, all washed and soft and arranged very lovingly around her. The room, again, was softly lit and quiet. Family members took turns sitting beside their loved one, whispering to her, stroking her hair, holding her hand. She looked as comfortable as a person can look and as peaceful as a person can look, and even though she'd had dementia for a long time, it was clear that her family members adored her and were focused, in their care, on who she was, what she liked, what she needed.

Each of these families was concerned that they do caring "right." In each case, the patient looked so comfortable and so peaceful that a piece of me wished I could crawl in beside them and rest with them. Not every family can do this, but the families of these patients had found a way to make caring an act of love, acknowledgment, and even joy. The dying time, in each home, was a special time to "fuss over" the patients for the last days, to accommodate their whims or to respond to their special likes or simply to cherish and comfort a beloved body by surrounding it in softness. Homely things--a pair of shoes, a flowered pillowcase, a soft red flannel sheet--seemed imbued with sacredness because of the tenderness with which they were offered. There was absolutely nothing on earth that anyone could suggest to any of these families to improve their care. The patients were blessed in their surroundings, and I was renewed, and deeply humbled, at the sight of "family" at its very best.

The Power of the Bible (YIKES!)

If you are familiar with folk remedies in the USA, you'll remember that folks with ganglion cysts were advised to "cure" them by smashing them with the family Bible. A ganglion cyst is a fluid-filled bulge in a joint capsule, usually in the hand or wrist. Smashing them, aside from the obvious possibility of collateral damage (too bad about all those little bones in your hand), CAN reduce the swelling, but it does nothing for the weak spot in the joint capsule that bulges. Well, maybe if the capsule leaks and then scar tissue forms, the fix is more permanent. I don't know. In any case this folk remedy seems to me to be taking the phrase "healing power of the Word" farther than I tend to want to do.

Nonetheless the Bible is cherished by many, and what translation you bring to visits does matter. Based on some stories in Oliver Sacks' incredible book The Man Who Mistook His Wife For A Hat, it has seemed right to me to use the King James version when reading to elderly patients, especially those with dementia. I found in my student placements that singing "old standard" hymns, or sounding them without words, could be very connecting to patients with dementia, perhaps because the familiar sounds connected these patients with a sense of peace and comfort. So it made sense to me that, for these patients and perhaps for most, hearing cherished texts in the translation most familiar to them would be particularly comforting. For most older Protestant patients, that means the King James version, complete with "thee" and "thou."

Once I was at the bedside of a patient quite near death. Family members mentioned that they had felt a pull to read Bible passages to their loved one who had been a faithful member of a LCMS (Lutheran Church, Missouri Synod) church for many years. They'd been reading from a Bible they found in the care facility, one of the more modern translations. I mentioned offhand my thought about the King James. When I was about to leave, a family member asked if I'd read from that version. So, I read psalm 23 and then psalm 121. At the end of 121, as I closed my book, the family members said "Amen." The patient exhaled--and then did not inhale again, having slipped away on the "Amen." It took me a moment to realize what had happened because it was so peaceful, and once I did realize, my instantaneous thought (luckily a silent one) was, "Oh crap, I've killed her." The family members, tearful and joyful all at the same time, said, "See? She just needed her King James Bible." Who knows.

Ah, blessed humility

Once I met a patient and family who were just arriving at the facility. The patient was a bit older and wore glasses, as do I. The whole family was pretty stressed out--electing hospice care is not a milestone any family looks forward to or takes lightly--so I asked if there was anything they might like: coffee, tea, some ice water. The patient asked for coffee. I asked about cream and sugar but heard no answer. So I brought a cup of black coffee; the patient took a sip and bellowed, "How come you didn't put sugar in my coffee?" At this point I realized the patient had trouble hearing, and I was really embarrassed. No point in attempting to disguise the obvious, so I bellowed back, "I guess because I am DUMB. How many sugars would you like?" Patient answered, I went and got the sugar, and a spoon, and a napkin, and brought it back with an apology. Now, I wear my hair cut very short--my hair doesn't hold a curl well at all and, if left long, clings flat to my head in a most unappealing manner, so a very short cut is the most practical thing I can do. Our patient added the sugar to the coffee, took another sip, was far more satisfied, and looked up at me and said, "Well, I think you're a nice fella anyway."