Outliving My Mom

This photo is about 30 years old. It’s one of the last ones I have with both of us before her cancer diagnosis. In older photos she wore those awful turbans to cover her nearly bald head.

My mother was diagnosed with myotonic dystrophy (DM) circa 1990 before there was a DNA test available. When my parents told me of this diagnosis they never mentioned it was a genetic condition nor that it was serious. All I knew was that she appeared before medical students at the University of Miami School of Medicine so they could see that one leg calf had less muscle tone than the other. She had more severe health situations than thin calf muscles and had been repeatedly hospitalized.

In 1990 there was minimal information available about DM. As it turned out, so many of her health issues (gallbladder and GI problems, early cataracts, daily fatigue, respiratory problems, etc.) were related to the disorder. In the last few years there have been scientific studies looking at DM and cancer which suggest that people with DM are twice as likely to have certain cancers. My mother smoked her entire adult life, was often depressed, and drank alcohol daily — creating a fertile environment for the lung and brain cancer which caused her death.

We have also learned through scientific research that myotonic dystrophy, in addition to being passed on with 50% probability for each offspring, has a component called anticipation. Essentially this means that the severity of the condition increases with each generation and often with each birth. My parents had another daughter nearly two years after I was born but she lived only three days. Now I know this child had the more severe congenital form of DM.

So tomorrow I turn 56 years old; my mother died 6 weeks before her 56th birthday.

Searching the Internet, shortly after I was diagnosed in the late ’90s, I discovered a table with data showing the average life span for adult-onset DM being between 48-55. My mother fit that data set.

So tomorrow is bittersweet. I like to think that all of my self-care and positive attitude has pivoted me beyond the dire expectations. Yet these past few months have proven to be physically and emotionally challenging. My respiratory issues, and subsequent sleep study, show that I need breathing assistance at night. My energy has a marked decline and I worry that I won’t be able to recapture it.

Birthdays can be difficult for anyone after a certain age but perhaps more so when you have this anticipated early decline…each year represents more loss to come. I’ll be celebrating with a few friends at a karaoke bar and hopefully that will kick my butt into a more glass half full perspective.


Letting Go

My neurologist recently confessed that what he does for people with my disease is really palliative care, which, according to Wikipedia, “focuses on providing people with relief from the symptoms, pain, physical stress, and mental stress of the terminal diagnosis. The goal of such therapy is to improve quality of life for both the person and their family.”

For the past two years my spouse and I have been providing what I hope to be the best palliative care for one of our cats, Ginger. Ginger used to spend nightly bath time with me but hasn’t in the past several months. Nearly two years ago — November 11, 2015 — she was diagnosed with kidney failure. Since then we’ve had someone help us with administering weekly, then 2x/week, and now every day, subcutaneous fluids. We’ve kept up with her finicky eating requests and have tried all sorts of special cat foods and baby foods. We’ve spoon and finger fed her. She’s had two urinary tract infections and I’ve prepared myself for her final stretch at least 3x in the last year. But I think now is really her final stretch. And I’m taking it a lot harder than I imagined I would.

I love all of my cats — past and current — but Ginger is special. We found her through a rescue group and her only back story was, “found at the San Leandro BART (train) station.” I would do anything to know her real back story. The foster rescuer said she wasn’t a lap cat but Ginger proved her wrong. Not only is Ginger a lap cat but she slept on my arm for years. As my body muscles diminished I had to change that practice since I’d wake up really sore. But we’ve always continued our close relationship. She’s wise, has a sense of humor, and she has proven to have an amazing fighting spirit.

Last week she had a stroke, or seizure, that was so frightening and surreal because she didn’t seem to show a lasting impact. Granted, she has lost a lot of weight and has stopped grooming in the last couple of weeks. But as I held her during the seizure I talked her through “letting go” and was awe struck that she survived and within a few hours back to her somewhat-diminished self.

I made an appointment for in-home euthanasia services, then cancelled, and now have rescheduled. I’ve been in this situation before and there was no ambiguity that the previous cats were in discomfort and ready to go. But Ginger just keeps proving me wrong. Until this afternoon. I hate having this control.

Update

We put Ginger to sleep on Saturday morning. She came out of her heated pocket bed to be in our arms. She leaned back, smiled, and as the veterinarian said, she was “set free.”


Moving Through Loss & Transition

Like nature, our lives are filled with change. This episode explores how to move through loss and transition. For many of us the loss may be diminished physical strength, our career, or the death of a loved one. Roz Leiser, R.N. and the Executive Director of Life Transitions Network, talks about workshops – based on the pioneering work of Dr. Elisabeth Kübler-Ross – that help people move through loss and transition.

Podcast listeners can qualify for the early-bird discount for the March 2017 workshop. Workshops outside of the San Francisco Bay Area are listed here.