Unabridged from my Bonus Years column in the Lifestyle section of The Sunday Capital, Annapolis, Maryland.
It began 12 days ago when we received a phone call from family friends who retired in Florida. They had stopped by to visit my mother, known to her friends as Ginny.
Ginny is “97 and three-fourths” — her words — and has lived independently on Fort Myers Beach since 1982 where she and my father retired, though my father, a picture of good health at the time, passed away a few months later.
When we answered the phone around 5 p.m., we learned she had a worrisome inflammation of the tissues in her legs (called cellulitis) — a serious and sometimes life-threatening condition. Our friends, one a retired physician, called 911 to get her to the emergency room. Mary Sue was able to get a flight to Florida that same evening.
After two days in the hospital, Ginny was on the mend, so the doctors transferred her to a rehab center, where she was expected to stay for a week or so, just to get back in shape.
On the second day in rehab, at about 7 p.m., I received a text from Mary Sue: “Your mother is having a stroke.”
I immediately left for Fort Myers.
It was a severe stroke. After a series of tests, we found she could not speak, could not swallow and was disabled on her left side. These findings were material because she had long-established DNR (do not resuscitate) and advance directives rejecting heroic measures that precluded intravenous hydration, feeding tubes and the like.
Given her severe disabilities from the stroke and her clearly-stated directives — which she has reaffirmed many times in casual conversations over the years — the decision was made to move her to Hospice House, a wonderful and inviting facility adjacent to and affiliated with the regional medical center operated by Lee County.
As I write this, Ginny has been in hospice for seven days. For the first four days, she was clearly aware of the many visitors and loving good-byes from family members and friends she has made here in Florida over the past 32 years.
Today she is sleeping, almost continuously for three days now. Last night I sent the following text to our children:
“I just arrived for the night shift. Your grandmother is resting peacefully and has been most of the day. Though she had some labored breathing for about an hour mid-afternoon, she is lost in sleep most of the time. There is absolutely no evidence of pain or suffering, so we can be thankful for that — and thankful for Cicely Saunders, the British registered nurse who pioneered the modern hospice movement in the last century.
“The past few days have been full of sweet memories and long-forgotten thoughts about my life with your grandmother and grandfather — and what a great team they were in every way and great parents, too. And what a remarkable woman she was at every stage of her life. Think about it: Her life included the Roaring 20s, the Great Depression, World War II, the postwar boom, an Ozzie and Harriet home life, becoming a two-car family, Dad’s career victories and defeats where she was always 110 percent on board no matter what.
“She witnessed the first jet airplanes, TV (which I was not allowed to watch), the civil rights movement, school integration, moon landings … devoted huge amounts of time to community activities and especially volunteer work for the schools I attended, sports and girls’ activities (she loved girls) and many behind-the-scenes activities to facilitate school integration, especially after Brown v. Topeka Board of Education. And she also worked part-time after I entered high school.
“Our matriarch was a truly great lady who loved and honored her family, loved her neighbors and worked hard to repair the world. You can all be proud of her. Love you, Dad.”
American professor and acclaimed science fiction writer, Isaac Asimov, wrote “Life is pleasant. Death is peaceful. It’s the transition that’s troublesome.”
The American actor, filmmaker and playwright Woody Allen said much the same when he noted, “I’m not afraid of death; I just don’t want to be there when it happens.”
As a person of faith, I have never feared death. But, like Asimov and Allen, I’ve had anxieties about dying. I’ve found this anxiety is a bonus years issue for most of us.
But my experience with hospice is reshaping my thinking. Sitting with my mother and chatting with friends and family who have stopped by have been wonderful experiences — for my mother and for Mary Sue and me.
Ginny communicates joy and appreciation to those who come to visit. She also communicates that she wants to go home to be with the Lord and my dad. You want to help her get there. But all you can do is love her, hold her hand and assure her that the welcome mat is out.
Hospice and the medical innovation called “palliative care” (as opposed to “curative care”) provide relief from the symptoms, pain and distress — physical, emotional, social and spiritual — of a serious illness or life-threatening condition. The result: Hospice and palliative care are making a huge difference in the transition we are now experiencing with Ginny.
Because of the influence of nurse Saunders, who later became a physician, hospice focuses on the patient rather than the disease. She introduced the idea of “total pain,” which included psychological and spiritual as well as the physical aspects. And hospice doctors and nurses involve the entire family and not just the patient.
Our experience with the hospice doctors and nurses these past days can only be described as breathtaking. Their knowledge, attitudes and practices are awe-inspiring. They are responsive and involve the family at every turn. They explain. They educate. They care.
They bring an upbeat and can-do approach to everything they do. Still, they show tenderness, mercy and grace in the way they listen, talk to, touch and move loved ones who are in extremis.
To Asimov, who says the transition is troublesome, I would say many of the troubles — for the dying and for those who love them — are mitigated by the philosophy, dignities and practices of hospice. To Allen, I would say, “You can’t escape being there when you die, but you can make sure hospice is along side you.” It’s even covered by Medicare.
To my mother, I say every hour or so, “I love you, thank you for your many blessings and be peaceful because good things are coming your way.”