After a successful surgical procedure earlier this year, a 4-year-old Michigan girl with cerebral palsy took her first steps, and her proud mother recorded every "step" of the …
Life in 21st Century America is, for most people, a never-ending series of challenges. Aside from the day-to-day struggle to make ends meet in a post-industrial economy with its wild boom-and-bust cycles, a fractious and often toxic political environment, and the social, moral and economic fallout of a never-ending War on Terror, most of us have a lot of things on our minds. Some of these concerns are rather trivial (Do I have ham on rye with Swiss cheese for lunch today?), while others (Do I have enough money in the bank to pay my electric bill this month?) are issues that can rob us of sleep and peace of mind.
To be sure, the life of the average American citizen is far better than that of someone who lives in a war-torn country like Syria. Yes, there is poverty; my hometown of Miami is the fourth poorest metropolitan area in the U.S. and is one of the most expensive places to live in.
And yes, there is crime: my house has been burglarized at least twice (once in 1990, then again last year). On the whole, however, I’d rather be in Miami than in Aleppo. At least here I am not caught in the cross-fire between Bashir Assad’s iron-fisted regime and various rebel factions who have been locked in a brutal civil war for half a decade.
Having said that, the past 20 years have been marked by a long series of life-changing events that have taught me to “roll with the punches.” Some, such as my first online writing “gigs” as a reviewer for Epinions and Viewpoints, were positive experiences in that they allowed me to earn money online by doing something I love: writing.
Others, including my mom’s struggles with watermelon stomach, skin cancer, and the various illnesses that left her incapacitated until she passed away in July of 2015, were not so positive. They were heartbreaking, physically and mentally exhausting, and often scary situations.
In many ways, my five-year-long tour of duty as Mom’s primary caregiver was not a unique occurrence. Millions of Americans from the Baby Boom and X generations – folks in their sixties, fifties, and forties – care for their elderly parents in some fashion.
Many place their loved ones in assisted living facilities (ALFs) or nursing homes, although many of these facilities are rife with elderly abuse cases and other problems. Others can afford to hire professional caregivers that provide such in-home personal services as companionship, hygiene care, prevention of pressure ulcers (bedsores), and food preparation/dispensation of medicines.
In my family’s case, my older half-sister and I never considered placing Mom in a nursing home. There are a few good ones here in South Florida, including The Palace, but those ones are prohibitively pricey.
In any case, Mom always said that she wanted to die in her own bed in her own house, so even if we could have afforded it, putting her in a home was never an option. As a result, the responsibility of caring for my mother fell mostly on my shoulders – partly because my half-sister had not retired yet, but mostly because I was already the Johnny-on-the-spot who lived with Mom.
From the day in June of 2010 that Mom came home from Mercy Hospital and told us that she needed a surgical procedure to reinforce her disintegrating spine till that awful morning in July of 2015 when her body was wheeled out of her house to a waiting ambulance, I had to learn to roll with the punches – or else.
If meals needed to be prepared or groceries ran out and the pantry had to be restocked, it was my responsibility.
If I wanted to have telephone, Internet, cable TV, and electricity services, I had to make sure that the bills were paid on time – and in full.
Even when the home health aides were with Mom, I had to know everything that was going on with my parent. If Mom was hungry, I either prepared snacks/meals and asked the aides to help her eat, or I’d supervise the aides if they did the food preparation. If Mom needed to take medications, I’d have to administer them personally; certified nursing assistants are rarely allowed to dispense pills unless their employer says they can.
And when Mom began to have panic attacks in the wee hours of the morning and call everyone on her contacts list and ask them to come over because she didn’t know where I was, I had to stop sleeping in my bedroom upstairs. Reluctantly, I ended up sleeping on a thin foam mattress in the dining room; it was frightening – and embarrassing – to be awakened from an already troubled sleep at 2 or 3 a.m. because Mom felt alone and helpless.
Fourteen months after my mom’s passing, I still have bad dreams or even flashbacks about events that took place during her long illness. Sometimes I see her soft brown eyes full of fear, frustration, and confusion when she tried to remember a particular person’s name but couldn’t. Sometimes I can hear her calling my name over and over again in the predawn darkness because her awareness of time was shot and she thought it was daytime.
Or I’ll see her once serene and loving face twisted, gargoyle-like, in a rictus of fury and resentment because she believed that she had already taken her bedtime dose of Ativan and was convinced that I was trying to kill her with an overdose. This happened several times, especially after the summer of 2014; once I even had to call my older half-sister at midnight and ask her to come help because Mom was refusing to take her medications and I was too tired and frustrated to deal with the situation on my own.
My experiences as a caregiver would have been rough even if I didn’t have cerebral palsy (CP). Taking care of an ailing parent is never easy. It’s physically, emotionally, and financially tiring, and even the most loving and patient persons can, and often do, reach a point where they see only hopelessness and fear at the end of the tunnel. Having a physically-limiting condition like CP and being a caregiver is a combination that makes an already difficult situation even worse.
At times, I often wondered if I’d end up like some of my acquaintances with disabilities who couldn’t cope with the challenges of growing older and/or losing a beloved parent. I’m thinking especially about a woman named Amy, a friend of my best friend Richard. Amy was in my age group and had gone to a few parties that I’d attended in the late 1980s and early ‘90s.
I don’t really remember Amy well; she had a mild case of CP and used a wheelchair to get around. Amy was also a bit shy and somewhat introverted, but the few times when we chatted (usually trying unsuccessfully to make ourselves heard over loud Latin or rock music), she was witty and funny. I don’t know why we didn’t become close friends; maybe we didn’t get together often enough, or maybe we had little in common besides our disability. We were simply two people who crossed paths once in a blue moon, no more, no less.
What I do remember about Amy is her tragic end – she committed suicide in her mid-30s after a long and losing battle with depression.
According to Richard, Amy had become haunted by the prospect of growing older and becoming a burden for her parents, who were getting close to retirement age. She hadn’t yet found anyone to have a stable relationship with and dreaded the whole dating scene, so her life was centered on her parents and her job (I don’t know what Amy did for a living, and Richard died in 2007, a victim of kidney cancer).
Amy knew that her parents loved her, and she loved them in return. She was also aware that they were getting older and frailer. She often told Richard that her mom and dad were beginning to suffer from arthritis and other age-related ailments.
“I know that taking care of me is not easy,” she once said. “They’re not as strong or nimble as they once were. They don’t want to put me in an assisted living facility, and they want me to stay home. But, Richie, what if they got sick and I couldn’t take care of them?”
Richard told me that Amy was afraid of ALFs – she didn’t want to end up in one, and she didn’t want her folks in one either. And I’m not sure if he suggested that she consider counseling or any option that involved Florida’s Department of Children and Families or other agencies. She might have listened to him had he done so, or maybe she was too depressed to see that there were other ways to deal with her worries.
What I do know is that Amy was convinced that her parents would be better off without her. A few days before her 35th birthday, she locked herself in her bedroom and committed suicide.
In her farewell note, she said she was sorry to hurt her parents this way, but that she couldn’t bear the thought of watching them grow old and frail – or being an unbearable burden to those she loved most.
At the time, I wondered if I would ever be a burden to my mom, who was in her late 60s but still in full command of her faculties. And I was haunted, too, by the grim prospect that my surviving parent would eventually get sick and pass away. What would that be like, I asked myself – and I always replied, “I don’t know.”
Now, nearly 14 months after Mom’s death, I know what it’s like.
I don’t think I was particularly brave or spiritually strong, nor do I believe that I did anything “special.” I was scared throughout much of the last five years of my mother’s life. I worried every day about such things as what would I do if she passed away while I was asleep or out running an errand, or what to cook for dinner when she started losing her appetite.
I was always afraid that she would commit suicide; at one point, her depression was so severe that I took all her medications out of her bedroom and stored them in the kitchen cabinets. Worse still, I lost many hours of precious sleep thinking about the future and the inevitable consequences – emotional, financial, and legal – of my mom’s passing.
I think that my experiences between June of 2010 and 2015 taught me a simple yet valuable lesson: in order to lead a full and successful life, we, disabled or not, have to learn to roll with the punches.