June 10, 2016

After Yesterday’s Shocking Parkinson’s Support Group Meeting, Planning My Final Exit is Now at the Top of my To-Do List

A month or two after I was diagnosed with Parkinson's in the fall of 2009, I joined a support group for people with Parkinson's. We meet every Friday at the Iona Senior Center, a ten-minute drive from my house. 

Our leader is Leon Paparella, a group therapist who’s had Parkinson's for 30 years. Most of the 12 regular attendees faithfully show up because we regard the meetings as incredibly useful.

Illness and death do take a toll, however. Two longtime members died earlier this year, making me now the senior member of the group… which makes me a little nervous.

Yesterday's Meeting
One of our members – we’ll call him Michael -- showed up yesterday after an absence of about two months. He arrived in a wheelchair pushed by his wife, and he didn’t look at all well. Before the meeting started, Michael's wife tried to give him spoonfuls of food or medicine, but without much success.

Many of our members come to the meetings assisted by spouses or other caregivers. These caregivers leave once participants are settled in place, and return later to pick them up.

Michael's wife remained, however, apparently with Leon's approval. She explained that Michael was now in an assisted living facility. It was clear that he could no longer use his arms or legs, and he showed little awareness of being with us. His wife said our meetings had always been very important to Michael. She had hoped that returning to the group might stimulate some awareness and pleasure for her husband.

We didn’t really see any signs of pleasure or awareness in Michael’s face. We told him how good it was to see him again, and how important he was to us. Nothing we said seemed to resister, and soon Michael and his wife left the meeting.

 The Support Group Reaction
A few moments of stunned silence followed their departure.  Then, as we talked, it became evident that others had reacted as I had: “That could be me.”

Much of the rest of the meeting was devoted to discussing these feelings. Clearly, this was the first time any of us had seen someone so completely disabled by Parkinson's.

Several of us tried reviving our spirits with reminders that Parkinson's disease is highly idiosyncratic. And, as an inspiring example, we only had to look at our leader Leon, who looks great and functions well after 30 years of living with Parkinson's.

Then I started to thinking about John Rehm, husband of beloved NPR radio host Diane Rehm. John had lived with Parkinson's for about tenyears. When he reached the point where he could no longer use his hands, arms, or legs, he asked his doctor for help in ending his life.

Told that it was not legally possible for his doctor to provide that assistance, John looked at other options. Eventually, he checked into a hospice where he signed papers certifying that he no longer wanted to take food, water, or medication… except what might be required for palliative care during the ten days it took for him to die of dehydration. The end came for John Rehm on June 23, 2014.

That searing experience thrust the award-winning public radio host, long known for moderating debates on controversial issues, into an unaccustomed role as a “Right to Die” advocate.

I heard Diane Rehm speak at my favorite DC bookstore about her memoir On My Own, which describes this intense period in her life. I read the book and liked it.

My End-Of-Life Plans
Even before I was diagnosed with Parkinson's, I had some tentative thoughts about when and how I might decide to end my life. Now, after much more study and reflection, I've come up with a plan I’m comfortable with.

Yesterday's meeting convinced me: it’s time to take some initial steps.

More about this subject next week.

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