Crawling into her bed and snuggling into her arms in the morning seems like the most natural thing to do, for her and for me. She taps my back and strokes my cheek as she falls back asleep. I stir. She looks at me and says, “Who is it?” I say, “Angela, your daughter.” She rolls back in confusion and snaps, “I’m going home.”
Living with a parent who has Alzheimer’s is like that — one minute it’s sweetness and safety, the next moment there’s anger and cussing. She was never a curser, being devoutly religious — now she cusses like a cranky old sailor — “Goddam-son-of-a-bitch-you-asshole-get-the-hell-outta-here,” teeth clenched and fist up in the air. Sometimes I’ll respond, “Why did you call me an asshole?” She’ll assert incredulously, “I didn’t call you an asshole — that’s terrible!” She actually can’t remember saying that just seconds previously. You have to find the laugh and not take anything personally.
Memory loss is about living in the present, like a Zen master — always the wise one, she teaches us the poignancy of the moment.
When I first brought my mother from Edmonton to our apartment in Toronto exactly one year ago, we thought it a temporary move as mom waited on several lists for dementia care centres in Edmonton.
The first few months I thought I would go insane. Suddenly my old life was squeezed into too few hours. And I felt hurt by her irrational moods.
My partner settled into his chosen role as primary caregiver while I went to work. With the support of mom’s pension, we set up a network of caregivers — all women friends — that would spend time with mom while giving us respite. And before long we got her into a seniors’ drop-in day program that she attends four days a week — this has been the greatest godsend, allowing my partner to also work outside the home. (I pray the Ontario government doesn’t cut funding to the seniors’ day programs as they have other public health programs.)
In time, we got into the groove. Days were soon filled with laughter. She laughs at anything, including herself in the mirror. And we break into song regularly, turning our sentences into familiar melodies. If something is confusing, it’s “Crazy” by Patsy Cline. Or when she doesn’t comprehend — which is much of the time — we just turn it into a silly song and dance, laugh, and the spell is broken.
The greatest gift has been observing mom’s anxiety and agitation drift away as she experiences sustained love, care and safety. Over the years, I witnessed her illness consume her with fear and confusion; living with us has revived her joy in life, something no drug can offer. She’s in love with life again and she expresses it freely.
I don’t mean to candy-coat how difficult it has been to surf past her anger. Her personality has changed with this disease — which the Alzheimer Society says is normal. This has been the most trying part of caring for her, to not be triggered by her meanness as she struggles with her confusion and loss of control.
Emotionally, however, she is still very sensitive to people’s energies and wise in responding with compassion — as she always was — reaching out with a gentle touch or kiss on your hand or forehead. And she regularly expresses gratitude.
Music is also a language she understands; jazz, swing, old-time big band and country on the stereo or YouTube entertain us all. Lawrence Welk reruns are her greatest pacifier.
Once a great dancer, she now shuffles in perfect rhythm. We take her dancing weekly to live swing music at Grossman’s on Spadina. She knows how to work the crowd, socializing with men of all ages and varieties. She smiles and gently strokes their heads and chins; they both laugh, and he inevitably says something like, “phew, haven’t had that much action all year!”
We take her to the park, out for dinner, and for bike rides on a trishaw — a cycle rickshaw popularized by the Cycling Without Age movement. We FaceTime with her kids and grandkids back home. We attentively feed her, wash and dress her, brush and manicure her. We tuck her into bed at night and comfort her during her nightmares. We love her to bits. She’s getting back what she put out through her lifetime of caregiving.
People cautioned me and my partner that this journey would cause serious strife, but to our delight the opposite occurred — our relationship as a couple blossomed with our common project; we’ve worked hard to appreciate and support each other.
Last month Mom turned 90. We had a dinner party with all of her Toronto caregivers and friends. She seemed genuinely joyful. We sang her the song “Memories,” which is bittersweet because her memories have all but been taken away from her by this awful illness.
She’s still on the waiting list for the premier public dementia care centre in Edmonton. They could call any day. We think we’re going to refuse the offer and instead continue down this road of vulnerability and change. I dread what’s to come, but I know she’s better off with us than anywhere else.
As a lifelong activist, this has perhaps been my sweetest campaign, parenting my parent. In providing a loving home for her, we’ve allowed her beautiful spirit to rise up through her dark cloud of dementia. Despite her growing infirmity and intellectual decline, she’s the same beautiful wise woman I’ve known my entire life.
Each night when I tuck her into bed, I hold her hand and recite some ancient prayers that she has recited thousands of times, just as she did with me when I was a child. She nods in agreement, sometimes hums, until the line: “Pray for us sinners, now and at the hour of our death, amen.” She shoots back in horror saying, “Who died?” That’s when I start singing her to sleep.
But there is just nothing greater in life than those morning hugs. That moment when she realizes she’s not alone. I sing “Good morning, good mo-o-orning!” Her head falls back in laughter as she reaches out her arms for an “oooh ahhhh.”
Angela Bischoff has worked exclusively on the green beat with the ENGO community since 1987. From bikes to nukes to mental health to elections, her range of experience is broad. She is currently director of the Ontario Clean Air Alliance. OCAA is behind Ontario’s coal phase-out and has since turned its attention toward moving Ontario to a 100 per cent renewable future by investing in conservation, made-in-Ontario green energy, and water power imports from Quebec while phasing out our 18 high-cost, risky nuclear reactors. More here: www.renewableontario.ca
The author would like to thank Elizabeth Littlejohn for submitting the article on her behalf.
Image: Angela Bischoff