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GUEST COLUMN: Things I’ve learned caring for a mother with dementia

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Heather Anne Wakeling Lister

“It might be best to remember caring is a marathon, not a sprint.” 

I texted those words to a woman in the initial stages of caring for her father, knowing she was entering a whole new experience.

As her father creates an alternative reality defined by Alzheimer’s unrelenting progress, she cries, and the armchair critics don’t help matters much.

For people living with dementia, supports are best introduced slowly and in stages, to coincide with a life rhythm that is no longer defined by linear time or logic.

The erasure of memory complicates the person’s capacity to envision a future: from complex events, to how to make a cup of tea, dressing, or relieve themselves in a bathroom.

And all the while, caregivers must devise a ‘Plan of Care’ that organizes both of their lives to anticipate the inevitable certainty of “uncertainty.”

In the early years, I admit the initial shock of becoming a caregiver to my mother was dulling. As I gradually left behind aspects of my life to care for her, I did have the saving grace of having paid attention to the forewarning lessons from friends who had shared their own caring experiences.

Even with that knowledge, however, it was a daunting task to wade through the mire of gathering together a team: the doctors, pharmacist, social workers, therapists and the vital personal support workers.

And yet, more than a decade later and with a full Plan of Care in place, my husband and I are still mystified at times as to how mother’s mind works – or doesn’t.

Other than a grandfather in Manitoba who was institutionalized for dementia, all of my elders led vital and healthy lives, until they didn’t.

Mother’s early erratic behaviour was explained away as grief.  When the love of her life died, something in her went with him. All the while, though, unbeknownst to me, Dad had been silently covering for her, taking care of her “silliness” while he coped with cancer.

Before he died, Dad asked me to promise him: “Look after your mother,” he asked. I said yes.

Caring for an infirm person is a 24/7 job. You are always on alert and no holds are barred. Periods of relative calm are quickly punctured by an emergency.

Erratic behaviour, mood swings, anger, tears and laughter can all cycle though in just minutes. And most often, none of it makes any sense to those who must bear witness to the slow syphoning off of a loved one’s mind, history and role.

Small cuts of grief, one moment at a time.

For anyone caring for someone with dementia or other chronic illness, be gentle on yourself, and pace yourself. The road ahead will be a winding one.

Heather Anne Wakeling Lister is a Sarnia-based full-time carer and freelance writer

 

 

 

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