TO: Friends and Family…
My wife of nearly 48 years, your mother, sister, daughter, cousin, or friend is dying of amyotrophic lateral sclerosis. The person I have loved the most, hurt the most, and shared the most joy, the most challenges, and the most adventures with is leaving me – and I don’t want her to go. Phyl has been the center of our family, the hub around which our holidays and family events all revolve – and we don’t want her to go. She has been a good friend to many of you, some of you have known her for more than the 50+ years that I can claim – and you don’t want her to go. But for Phyl who is suffering emotionally and physically, who has lost so much – I think it time that we to begin to let her go.
As some of you know, the air hunger caused by poor (no) lung function has increased to the point that she is getting small doses of morphine most of the day to treat or prevent air hunger. While this reduces the anxiety of not being able to get enough air, it also makes her sleepy. She is sleeping much of the day and night. When she has visitors, she struggles to stay awake to listen to the conversation but after a while this makes her fidgety and anxious. Since she can’t talk and her hand movements are limited, she has difficult time telling us what she needs. We play a guessing game that seems exhausting to Phyl and sometimes she just quits trying to tell us what she needs. Sometimes she moans quietly (a few nights ago it went on for 3 hours) and we can’t figure out what is wrong.
She is on all liquid nutrition through her belly port, which also allows us to administer meds. We have a hospice nurse check on her twice a week and a hospice aide is coming in to give her a bed bath since she can’t sit up long enough in the shower chair for me to wash her without causing pain. And of course, her respirator mask can not be taken off for more than 30 seconds at a time. It is a miserable way to live.
As many of you know, I have been working for the past (almost) 5 years to help her live with this horrible disease. We both feel grateful for this time as about 80% of the people who developed symptoms of ALS at the same time as Phyl have already passed. During this time, I have searched for possible cures, gotten her involved in several experimental drug trials, acquired all of the adaptive equipment I could find to help her stay as active and comfortable as possible as she adjusted to her ever-increasing physical limitations. We have traveled to Arizona, Costa Rica, Aruba, Florida, and rented beach houses in Rhode Island several times. We have laughed and cried together, been frustrated and joyful together, and very often remarked about how lucky we have been to have such good friends and loving family. And most of all we have so very often thought how proud we are of our three sons and the men they have become. Phyl’s greatest pride and her legacy may be seen every day in how Jake, Brian and Jeremy interact in each other and within their own families. One of her friends wrote in an email last week…
“Life is hard. You just need to be so grateful that you have such a wonderful caring family. You did that! You should be so proud.”
I’ve read that quote to each of our sons and each time I teared up. “You did that!” You did that Phyl. You are the reason, our sons are the caring, thoughtful, and compassionate men that they are. On Monday morning, Phyl was uncomfortable and agitated. She had a really difficult night. Her breathing was labored, and she had already had her third dose of morphine to try to control the air hunger. I thought it was over and I texted Jake, Brian and Jeremy and asked them to come home. I got almost the exact same text back from each of them within minutes saying “I’m on the road in about 5 minutes… be there soon.” You did that Phyl….
I don’t want her to go….
But just as I have tried to help prepare her for each of her many loses, her legs, her arms and hands, and her ability to speak, I believe it is now time to help her prepare for next transition beyond this life. Yes, I do believe in “life after death”. I’m attracted to the term “devekut” from the Jewish mystical literature as the idea of “melting into the divine.” I wrote about my thoughts on the afterlife, the melting into the divine, in a recent blog post that you may have seen here: https://changingthestory.net/2020/05/26/the-afterlife/