making the most of it

I offer a unique perspective on making the most of it, or, as I like to describe it, making lemons into lemonade. I have the stories of my own health struggles including congestive heart failure, mini-strokes, and brain surgery, as well as being a survivor of love, divorce, custody-battling, and I also survived being a caretaker of a loved one who died from the cousin of Parkinson’s, ALS. In addition, I offer the perspective of a yogi, and a mindfulness practitioner, as well as a holistic health coach.  I guess that all makes me a compassionate sympathizer as well as a survivor.

My dad prepared me for his death, my whole life. One of his favorite sayings was, “if I don’t see you in the future, I’ll see you in the pasture.” My father was diagnosed with ALS only 20 months before passing away. Of course it took 18 months to be diagnosed, but then again, time always passes too quickly when suffering with a time-based illness. We referred to my dad as the mayor, because he never met someone who didn’t love him, and he always did whatever he could to help a friend in need. I often reminded my father that the one thing he always said he didn’t wanna lose was his mind, and ALS took away his ability to walk, talk, eat on his own, attend to his own personal needs, and eventually his ability to breathe. 

Regardless of the end, my dad always made the most of what he had. He told stories often about when he was young and would make complete meals out of tomatoes and toast. Without a doubt, my dad was resourceful. He could find any parts that anyone needed for an obscure household project. 

The first thing my dad did after being diagnosed was to plan a trip to Disney World, where he could make his two granddaughters dreams come true. Although I know it was difficult for his pride to ride on a scooter,  I also know that he would do anything for his granddaughters.

And so I always argue that my dad prepared me for this debilitating loss, my whole life. He blessed me with his incredible positive attitude and generosity for helping others. He also gave me the skills I needed to be independent and prepared for whatever life placed in front of me.  He also ingrained in me, the sense that no matter where I was, he was always there, supporting me and encouraging me.

My dad always made the most of it. He was present and did everything he could do to fulfill a promise. He taught me everything I needed to survive his death by being a committed dad in life.

When my dad was diagnosed, there was the first stage of preparation, and doing everything that can be done in his current state, while planning for the inevitable progression of the disease. While my dad could talk, he visited friends and family and shared stories of better days. There were lots of visits from friends and family, in the beginning as my dad’s ability is decreased, he had less of a desire to be out of the house. When his independence was replaced by incontinence, there was less of a desire to leave the comfort and privacy of home. Less friends came to visit, and everything became harder and sadder.

The physical, emotional, financial, logistical… stresses increased tremendously as the disease progressed. I, just a secondary caretaker, have never experienced stress on this level before. My husband and I pledged to get my dad to his happy place, a cottage on Lake Ontario, as much as we could the two summers before my father passed away. These trips were exhausting for my dad, and for my family, but we were making the most of it. 

My dad loved camp, and I was willing to do whatever I could, and beyond, to make that possible. That meant long days of constantly repositioning my father’s, legs and arms, feeding him, and toileting him, as well as helping to translate as well when his voice started to fail. By the time I fell into bed at night, I would cry myself to sleep from the exhaustion and sadness.

I witnessed my mother suffer the same, but her shift was 24 hours a day for 20 months. I witnessed my mother's, physical and mental health diminish during my father’s illness, some of which she still struggles with even now, five years later. My father also, witnessed my mother, my sister, and I, agonize through the simplest decisions, made more difficult by frustration, anger, bitterness, and the belief that this just wasn’t fair. All of these emotions and more were caused by the stress of a fatal diagnosis.

All my dad could do is listen and witness the decline of his caretakers' health along with his own.

Talk presented at Empower Parkinson's Care Partner Program on April 27, 2023.