When I became Shearlean’s caregiver in August 2009, I was 71 years old and had no serious limitations. I’d held up well during the 18 months that Shearlean survived her cancer. When she died on February 2, 2011 I was tired and stressed, but healthy and unencumbered in my ability to care for her.
I had a lifetime of back problems that gradually turned into walking problems, which by October 2015 led to falling and eventually numbness in both legs, from my knee to, my toes, making it impossible to walk without a walker or cane.
In the last two months of her life, when Shearlean could not walk, I think I wrecked my back picking her up from falls, helping her in and out of the bathtub, on and off the toilet, in and out of bed. About two months after she died, the adrenalin that had kept me going wore off and I could barely stand or walk.
If my history were any indication, I believed that this would pass, as had other severe back problems. Instead I couldn’t walk in a straight line, both feet became numb, my ankles barely flexed and right leg atrophied, becoming three-quarters-inch smaller in diameter, from ankle to thigh than my left leg. I was dieting at the time and was shocked at how quickly I lost weight. I realized half of the 12 pounds I lost was muscle from my right leg.
“No diagnosis, no treatment!” is American healthcare’s prime directive. Its validity is obvious, its sanctity unchallenged. But what if you are elderly, falling down and denied timely treatment because of this directive? Then you just keep falling down until something can be diagnosed, such as a hip fracture. Fifty-percent of patients over age 75 die from a hip fracture and survivors often can’t walk or stand, but now I have a diagnosis and treatment can proceed.
Still I thought that by persisting to walk and dong strengthening exercises I could fix the problem. After six month, though, I was worse and so after a lifetime of avoiding surgery, I thought it might be now or never and submitted to a 2011 lumbar laminectomy. I had insisted I would accept surgery only if it would improve particular symptoms. I was assured it would, but it didn’t. All I gained was the ability to stand for long periods without back pain, but walking was unimproved.
Over time my stride shortened, my gait become erratic, balance worsened as peripheral nerves deteriorated and muscles no longer functioned. I was still walking if you can call a nearly out-of-control drunken-like stagger walking. I’d had hints of this condition as early as 2004. Treatment with the steroid prednisone temporarily cured the condition, but it eventually returned worse than ever.
For 11 months I fell continually. I was desperate for treatment and would agree to anything with even a slim possibility of helping me. Gratefully I accepted a left-foot orthotic brace on July 26, 2016 even though my left foot never caused me to fall and I had been falling since October 2015 caused by right leg weakness.
As my story of caregiving ended with the end of Shearlean’s story of terminal brain cancer, so I became my own story of aging and disability.
In 2017 I turned 79 years old, and am disabled and unable to walk without assistance. In the intervening years since Shearlean’s death I have remained in the healthcare system nearly full-time. I’ve had surgery at St. Joseph’s hospital in Bellingham, WA, Eisenhower Medical Center in Rancho Mirage, CA and UW Medical Center in Seattle, WA. I see my primary care physician monthly and routinely visit labs, imaging services, specialists and therapist, and so remain deeply imbedded in the healthcare system , which I share with you in the form of my blog and published articles and essays.