Recently my partner and I went on a road trip to visit a friend in Southern California. This friend – I’ll call her Debbie – was the first friend I made with a similar neuromuscular disease diagnosis (not DM). We met at a support group over 16 years ago. Debbie’s a few years older than me, but we share many cultural similarities so it has always been easy to relate to one another.
Debbie chose to move south for warmer weather, but within a month of her relocation she suffered a stroke that has left her fairly incapacitated. She requires round-the-clock care that is provided by an attendant found on Craigslist. As I understand, her minimal savings precludes her from some government subsidies, yet her savings will only last so long. She has limited family but a network of close friends engaged in helping with paperwork and decision-making.
Over the years, our phone and in-person conversations have been somewhat sardonic and bordering on depressive. She openly shared about her physical and emotional pain but still made great strides to exercise and remain independent. Occasionally we did talk about what our “comfort zone” might look like, i.e. at what point we’d want to throw in the towel or give up. I’ve always appreciated the opportunity to speak with her about this because most people don’t want to go there. In our society it’s rare to find a person openly willing to talk about their decline.
The night before our anticipated arrival I didn’t sleep well.
We arrived in town a few hours later than planned, and with my diminished energy I just couldn’t face seeing her. After a good night’s rest we brought a New York style brunch to her home. It took 30 minutes for her caregiver to prepare Debbie to see us. She could barely keep her head raised and wasn’t able to speak in full sentences. My partner and her caregiver took turns helping Debbie eat, adjusting the thermostat, and responding to her requests from a wheelchair that she could not operate herself.
After a couple of hours we left so she could go to a doctor’s appointment and – quite honestly – so I could process the situation myself. She cried as we were leaving and we promised to return in the evening. We did, and thankfully she was much more lucid as we sat at her bedside, straining to hear her voice while the television was on. It was not an ideal situation, but I saw glimpses of the Debbie I remembered.
I never was able to have the conversation with her that I thought we might have.
Her friends have told me she talks about wanting to die, but she didn’t bring this up with me. She moaned a lot during our first visit, reminded me of how much weight she’s lost, but never talked about the future.
I don’t know what Debbie’s future is. I know I couldn’t live like that, but who am I to comment on what Debbie’s definition of quality of life is? We all have our comfort zones.
What I CAN do is learn as much as I can and prepare for my own eventual death. As part of my personal and professional goals for 2015, I will be involved in preparing webinars and perhaps other informational materials about end-of-life care from a few different perspectives – legal/financial, palliative/hospice care, and the psycho-emotional issues for caregivers and their family. I hope you will join me with this exploration.
[originally posted: http://www.myotonic.org/planning-our-future]