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‘I am my mother’s caregiver’

Joanne Cave | Fulcrum Contributor

Illustration by Mathias MacPhee

SOME OF MY peers are motivated in university by grades, future salaries, or parental pressure. I’m motivated by something else—the desire to make something of myself early enough in my life so my mom will remember it.

When your mom loses her memory
Fall 2011 marked the start of a particularly rough semester: the first semester of my third year at the University of Toronto. Not rough in the sense that you wrestle with too many readings and not enough time—rough in the sense that you very unexpectedly break up with your boyfriend, get 60 days’ notice from your landlord, and start to realize your mom is losing her memory.

It started to click over Thanksgiving. I tearfully arrived at the Toronto airport after sleeping in and missing my flight home to Edmonton for the long weekend (rough, right? I wasn’t joking). Booking a later flight, I was so excited to spend time relaxing at home with my parents as a respite from the difficult semester I’d been going through. On the flight, I thought about my mom’s homemade pumpkin pie and elaborate turkey dinner with a feeling of relief and satisfaction.

What I wasn’t prepared for were the very visible signs of early-onset Alzheimer’s I noticed in my mom—the woman I had always known as an adept and busy wife and working mother.

Alzheimer’s disease is a progressive, degenerative disorder that attacks the brain’s nerve cells. The damage results in loss of memory, thinking, and language skills and behavioral changes.

I drove to the grocery store three times in one day, as my mom kept forgetting to add items to her list and I was sent out to get them. This time was for cranberry sauce.

“The doctor doesn’t want her to drive anymore,” my dad quietly told me.

Pulling into the grocery store’s parking lot, I unexpectedly burst into tears. This wasn’t the Mom I knew. I had never needed to take care of the woman who always took such good care of me. I made another 10 trips to the grocery store that weekend alone.

At the time, there was no diagnoses, but we knew for sure something was not right with my mom.

Throughout my visit, I learned about her coping mechanisms. During the day, when my dad was at work, my mom would follow a specific routine to comfort herself. She would take local transit with her favourite bus driver, who would drop her off at her familiar grocery store. All of the cashiers knew her by name and had memorized our home phone number. When she shopped, she did so almost mechanically—saying hello to the cashiers, picking up ingredients for the same rotation of three to four dinners, and then once again boarding the bus. I caught her preparing dinner at 3 p.m., just to give herself something to do.

Later that weekend, as my parents and I watched the late-night news together, my mom turned to my dad.

“Where are you sleeping tonight?” she asked him, sounding slightly dazed.

My dad and I, as would become typical, exchanged startled looks. He grinned.

“I was hoping to sleep beside you—like I have for the past 20 years?”

On the drive back to the airport that weekend, my dad explained to me he had been noticing the symptoms for some time and was ready to take my mom to a geriatric specialist. My usual excitement to return back to my school semester after a holiday break was replaced with an excruciating sense of guilt.

A change of priorities
The following summer, I sat across from my mom on the patio of our favourite café, eating lunch. By that point she had been tested and officially diagnosed with early onset Alzheimer’s.

“This is so nice,” she said, smiling at me. “This is just so nice. We like this place, don’t we? What a nice place. I don’t think I’ve ever been here before.”

The depth of our conversations has changed dramatically since she first started showing signs of Alzheimer’s. Our chats are often quite circular, with my mom repeating thoughts and stories multiple times. My dad and I talk politics; my mom and I talk about the weather.

The symptoms of dementia and Alzheimer’s are complex and not restricted to memory loss. My mom sometimes struggles to solve simple problems, rationalize situations, plan sequences of time, participate in social settings without anxiety or confusion, and find appropriate words to complete sentences. On multiple occasions, she has gotten lost in public places, or doesn’t remember where she is or why she went there. Some days, simple daily tasks are near impossible for her to complete independently.

My credit card statements have started to show more flights home and fewer clothes and impulse purchases. I spend less time on Facebook and more time on the phone with my parents. But it doesn’t matter to me—nothing could be more important than visiting my parents in person to see how my mom is doing. At this point, only going home once every four months is too large and distressing of a gap to handle.

One year after initially noticing symptoms of Alzheimer’s in my mom, I returned home for Thanksgiving once again. My entire family now knows about my mom’s condition, and is quietly sympathetic. This year, I helped my mom prepare Thanksgiving dinner, made decisions about what to start cooking first, and ensured we had all the ingredients we needed. I took her shopping, for walks around the neighbourhood, and to visit our friends and family. While I often feel the need to apologize on her behalf—her not-yet-greying hair doesn’t help to explain her confusion or disorientation—I realize it’s not an apology anyone should have to make.

My mom is happy, but shows signs of anxiety and frustration during the brief moments when she starts to realize the loss of agency in her own life. What’s particularly scary is that my family can’t seem to convey a lasting understanding to my mom about her condition. She expresses frustration with her doctors—she often doesn’t understand why they ask her so many questions or make certain recommendations. My dad helps to mediate those conversations, but my mom has started to sense that she’s living partially in the dark.

Thinking about the future
I’ve always known, with a strange mix of anxiety and teenage embarrassment, that my parents were getting older. My dad, in his early seventies, still works as a heavy-duty mechanic after recovering from two major heart attacks. My mom, in her early sixties, had been encouraged into early retirement because of her inability to keep up with the pace of her workplace.

It became especially daunting when my parents sat me down in our living room to talk about their wills and retirement savings. I quickly did the math in my head. I’m 20, my mom is 60. I’ll—hopefully—have a decade before my brother and I need to start thinking about home care or assisted-living facilities for our parents.

That’s a decade I’ll have before the guilt and sense of family obligation kicks in fully—that sense of obligation that pushes me to move closer to my parents and settle there long-term, to get the travel bug out of my system, and to start making “adult” choices. I want and need my mom to be lucid enough to see me receive a master’s degree, land a career, get married, have children, and lead a happy and successful life. It is a difficult compromise: my sense of independence and newfound adulthood versus my growing sense of obligation to be my mom’s informal caregiver. It’s also a difficult reality to explain to my friends—if it’s even a familiar situation to them, it’s something they experience more distantly with their grandparents.

At an age when we are repeatedly told that our futures are ours and ours alone, it feels strange to start making decisions around someone other than myself. Should I move home after I graduate? How long should I plan on living with my parents? What if I decide to go to graduate school abroad and my mom’s condition deteriorates?

Dementia & Alzheimer’s in Canada
Maybe your grandparents are starting to show signs of dementia or Alzheimer’s, or you currently act as an informal caregiver for another family member facing a degenerative condition or disease. According to the Alzheimer’s Society of Canada, nearly 750,000 Canadians currently live with dementia or Alzheimer’s, and this number will increase to nearly 1.5 million by 2031. Canadian policy makers are expressing concern that the Canadian health-care system will not be able to keep up with the increasing caregiving demands of an aging population. Unlike many degenerative physical conditions, much of the support and treatment for individuals living with dementia or Alzheimer’s often rests with their families instead of the formal health-care system.

In 2011, family caregivers in Canada spent 444 million unpaid hours caring for loved ones with dementia according to the Alzheimer’s Society of Canada. The effects are particularly profound for young caregivers. Ottawa’s Vanier Institute of the Family reports that many children of parents with degenerative conditions face increased stress and anxiety, social isolation, and a sense of resentment about their caregiving responsibilities. Much like my struggle to decide where to move after graduation or how I should balance time between academics and family, young caregivers can sometimes feel like their choices or opportunities are compromised because of a deep sense of family obligation. This experience has undoubtedly forced me to grow up much more quickly than my move across the country for university did.

Moving forward
So, is the situation only going to get worse? Is my future as child of a parent with degenerative conditions destined to be one of compromise, sadness, and grief? I have no choice but to come to terms with what will be a very uncertain future.

My mom teaches me to live every day with patience, grace, and a deep sense of caring. To have a relationship with my mom as she is today, without using my childhood as a point of comparison, is a true exercise in humility, maturity, and compassion.

For years, my mom did so much to make sure our family was happy, healthy, and cared for. She moved my brother and me to Edmonton so we could attend better schools than what was available in rural northern Alberta. For years, we commuted two hours each way every weekend to visit my dad. She returned to the workforce after being a stay-at-home mom to help save for our university education. She listened to my trivial teenage-girl problems with a sense of gentleness and understanding unmatched by anyone. While her memory will fade, there is something that won’t—her deep sense of respect and investment in the well-being of her family.

It’s easy to grieve for what feels like a life-changing and unexpected loss, or to fear for the day my mom won’t remember who I am. To only miss the person my mom once was feels dehumanizing and doesn’t do her current self justice. It’s also easy to be angry—not at anyone in particular, but at a circumstance that is both heartbreaking and deeply infuriating. In some ways, I have been robbed of my mother. She can’t give me the rational, adult advice about graduate-school programs or future next steps that my friends’ parents can provide with ease. Sooner than I ever imagined this would happen, I am my mother’s caregiver—and that’s okay.