On March 11, actor Micah Fowler will be the recipient of the Trailblazer Award at the United Cerebral Palsy of Los Angeles' (UCPLA) fourth annual Art of Care gala, at the Petersen …
“You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.” ― Anne Lamott
It’s been nearly 14 months since my mom died at the age of 86 after a long, lingering series of health issues, and my life has become a series of transitions. Some, like my relationship with a sweet, loving woman from my high school days, have been a source of joy and calm. Others, such as having to deal with the day-to-day care of a house and deciding what to do with it next, are physically and emotionally challenging, especially for someone with cerebral palsy.
It is a harsh reality of the human condition that most adults have to deal with their parents’ aging and eventual passing. With rare exceptions when one or both parents have died young, many of my 50-something-year-old friends are dealing with similar issues, and even under the best of circumstances, it’s never easy. And for me, my disability has a “multiplier effect” that makes it difficult for me to handle stress and negativity.
Not that I’m a stranger to difficult situations. I was my mother’s primary caregiver from June of 2010 till she died on July 19, 2015. This was the biggest – and hardest – challenges that I have faced in my life.
Of course, I wasn’t the only caregiver my mother had. The state of Florida provided home care aides through its Medicaid program, and the Department of Children and Families gave us Supplemental Nutrition Assistance Program (aka “food stamps”) benefits during the last five years of Mom’s life. I also had some help from a family member, even though that assistance was often more problematic than it was helpful.
Nevertheless, as the legally-recognized primary caregiver for a physically incapacitated elderly parent, I had to deal with challenges and situations I wasn’t prepared for. One day I was a forty-something-year-old writer with cerebral palsy who lived with his mom, only to be appointed as the sole decision-maker in our home because Mom could no longer run the household.
At first, the role switch was difficult, even overwhelming. I wasn’t well-versed in the nuts-and-bolts details of paying all the bills, grocery shopping, doing laundry, or taking care of a sick elderly person. In fact, I tried delegating some of these responsibilities to my older relative, but I soon discovered that the old adage, “If you want something done right, do it yourself” is often true. After several unpleasant incidents regarding grocery shopping and laundry took place, I decided that it was best if I handled those duties myself. It wasn’t easy, but I believed at the time it was the right thing to do. I still believe that, too.
For me, grocery shopping proved to be the more difficult of my new responsibilities. I wasn’t fond of doing laundry, but it entailed very little risk to life and limb. All I had to do when washing clothes and bedsheets was separate colored items from white ones and follow the instructions for the washing machine and the dryer.
However, going to the supermarket entailed walking across a busy avenue – sometimes on extremely hot or rainy summer afternoons – and pushing a shopping cart filled with $100 or more worth of food a third of a mile back to the house because I can’t drive a car. Sometimes one of Mom’s home health aides would drive me to the Winn-Dixie store close to home, help me with the shopping, and take me back, but more often than not, I had to rely on the Heels-and-Toes Express to buy food, hygiene products, and household supplies.
When I was my mother’s caregiver, my day-to-day routine was physically tiring, partly because of the many activities I had to do even when Mom had home health aides watching over her, and partly because even mild cases of cerebral palsy can leave a person feeling exhausted. My muscles have a tendency to constrict and relax involuntarily even under the best of circumstances, so imagine how my back, neck, and arms feel when they really get tense in stressful situations.
The effects are extremely painful and tiring! Additionally, I suffered from a combination of headaches, lack of sleep, an extremely home-bound existence, constant worrying about finances, and a gnawing dread of a future of either living alone, in a nursing home for the disabled, or with a relative that I don’t get along well with. This, in a nutshell, was my existence from June 2010, when Mom had to move to the downstairs bedroom (she could no longer walk up and down the stairs) until July 19, 2015, when she slipped away in her sleep less than two months before her 87th birthday.
Now, of course, I don’t have the soul-killing responsibilities of taking care of a dying parent – which is one of the most frightening experiences that disabled adults must face. I no longer have to worry if I gave Mom her medications at the right times or deal with sometimes-cranky home health assistants. Instead of having to plan menus for someone who was becoming difficult to feed, I can cook whatever I want or go out to dinner with friends, my significant other, or even alone.
Still, my new life is not devoid of challenges and pitfalls. My mom left me the house as my inheritance; we weren’t exactly living in a “bad area” of Miami, but Mom’s finances weren’t great, either. She left my older half-sister and me some money from her life insurance policy, but between paying for renovations and my monthly living expenses, that’s running out at a fair clip.
I do write every day (unless I’m sick or otherwise incapacitated) and have a self-published book out on Amazon, but the sites that I write for have an unsettling habit of closing down just when I’m at my peak of productivity. Thus, even if I no longer have to be a caregiver for a beloved but ailing parent, I still have a lot to worry about.
If there’s something that I want you, the reader, to understand about people with cerebral palsy, it’s this: The physical limitations of our disability are hard enough as it is; the emotional limitations are often harder to deal with.