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Illustration by Catherine Chan
When my beloved dad was diagnosed in his late 50s with frontal temporal dementia, my mom and I didn’t know much about the disease, but one thing quickly became devastatingly clear: we were embarking on an excruciatingly life-changing journey of grief, loss and advocacy.
Nothing could have prepared us for the way he looked at us as we left his long-term care home for the first time without him; the heartbreak of changing his diaper as he stared without expression; or the exhaustion of advocating with staff over and over again for simple dignities such as a clean shirt, a face without dinner from the night before on it and combed hair – parted on the side with a flip, just the way he liked it.
Certainly, there were resources, such as psychosocial support appointments and day programs where my mom could connect with other caregivers. We learned tips to manage the challenges that were to come. Sometimes we talked about death.
But no one mentioned the “after.”
As the years passed – more than a decade – we got to know other families as they came and went, their loved ones’ deaths highlighting the complicated emotions of no longer having someone to care for.
They would pass by my dad’s room to say goodbye to my mom and I.
They sometimes lingered, sitting on the worn blue leather chair beside my dad’s bed, trying to put into words the struggle that was happening deep in their hearts. There was often bitterness and guilt around what they could have done better – feelings associated with caregiver syndrome. They described a sense of peace that their loved one was at rest, but openly wrestled with a feeling of emptiness: who were they now that they were no longer a caregiver?
Once, a woman stopped me in the hallway after her husband died. Tell your mother that it gets better now, honey,” she said, walking slowly as she left, adjusting the pink knit hat that sat on top of her grey, frizzy curls. “I promise.”
My father spent his last days in a coma, his chest rattling loudly and coughing as he sucked for air. When he died, like the caregivers before us, we tried to find peace and comfort in the fact that he was no longer in pain.
It wasn’t so much the funeral or figuring out what to do with his clothes and his favourite books, or the way my small children wondered out loud where Papa had gone that was most difficult, although those easily brought tears to our cheeks. It wasn’t even the logistics of calling distant family to share the news and answer the same excruciating questions over and over that hurt most. After all, these were the formalities we saw coming more than a decade earlier when we first heard the diagnosis.
What felt so strange was trying to return to “normal” life after years of caregiving. The stretches of time that had been spent with my dad each week now felt vast, empty and lonely. I wasn’t sure how to fill them. For my mom, caregiving had enveloped her life in a vacuum of crisis, loss and advocacy, with little time left for anything else. Coming back to a life without someone to care for shook her identity. She said it also felt like returning from a long trip, far away and nothing was as she had left it.
Her friends – people our family had known for years – treated her awkwardly, with sympathy, but also indifference. They wanted to know how she was doing, but only just: tales of diapers and death were not what they had signed up for.
Years of putting herself second had left her with a whole slew of health problems, including headaches, problems sleeping and worsening heart issues. The house that she used to love had become a depressing box of memories. And then there was the time. So. Much. Time.
This was the stuff no one had told us about: that the life you come back to after years of caregiving might look different and even if it doesn’t, you are different. There is a loss of identity that will feel prickly and scary, but it is a sign of moving forward.
I only saw the woman with the pink hat one more time – she was handing in her pass card at the home’s reception desk, while I was dropping off some flowers for the PSWs who had taken care of my dad. She smiled easily and stood a little taller than I had remembered. It was strange not coming to the home, she said, explaining that she still had frantic moments when she’d think that she forgot to visit Ben or that she was late calling the home to check that he had been given his medication.
“It’s going to take a while,” she sighed.
Certainly, there’s not a lot about caregiving that’s easy, including moving forward when the responsibility ends. But perhaps if we talked more about the challenges of the ‘after’ we can set caregivers on a path to recovery that brings them peace and calm. After all, they certainly deserve it.
Lisa Machado lives in Toronto.
