Moving Day: The Moment of Truth

In Part 2 of a three-part series, Louisa McCormack tries caregiving from afar as her mother’s dementia deepens and her father’s health fails, leading to hard choices

DAD CAN’T WALK A BLOCK without stopping twice to catch his breath,” my brother told me after his annual August visit from Ontario to our parents in Charlottetown. That May, I’d moved to London, U.K., after living with them full-time the three years it took to get my mother diagnosed with dementia and my father adjusted to his role as carer. We assumed [the lack of breath] was his congestive heart failure, but it was anemia caused by internal bleeding. In September 2009, our 80-year-old father was diagnosed with bowel cancer. His surgery was scheduled for November.

As planned, I flew back in October for Thanksgiving. My mother threw a tantrum about going to her sister’s for turkey dinner. When my father approached her, she kicked his belly. As I watched my dad double over, I couldn’t feel my heart; it raced out to him too fast to take me with it. Later that night, she vomited on the living room carpet. My father cleaned it up before telling me. He’d loved my mother through every fit of pique and martyrdom, never forgetting who she was when they met – guileless, gorgeous and blithe. She didn’t kick you, Dad. Her disease did, I repeated all week as if that was good news.

A month later – a pounding heart with a person wrapped around it – I dialled the Charlottetown OR from London. The surgery went well. My brother could work remotely and nanny our mother the six weeks it would take our father to get home from a convalescence facility. “You’re incredible,” my father’s surgeon told him about how quickly he bounced back.

My father picked me up at the Charlottetown airport before Christmas. When we got home, my mother was sitting in the dark back hall waiting for someone to rescue her. I stayed with her the next day, not realizing my father was off to get his results from the oncologist. It wasn’t good news. I found out later it was Stage 3 cancer. My father was strong enough to try chemo in the new year. We clung to high hopes. He was a decorated veteran; his bravery had a track record.

Christmas Day, home from a hotel buffet dinner, my mother punched my father’s incision. She didn’t remember he’d had surgery; she was overtired. “Why are you so mean to me?” my father moaned. Dad, this isn’t her! I pushed between them to say. Don’t let her disease hurt you! The truth was I wanted to spank my mother and send her to her room. I felt guilty to be escaping back to my English as a Foreign Language teaching job so soon and bad for my bosses that I was returning to work more in need of a holiday than ever. I wouldn’t have it any other way, I said to myself and knew it was the line I’d use from then on to explain the lure of home once home becomes a mix of love and trauma.

Before I flew back to London, I found a resilient woman my father could employ as a housekeeper. Really she’d pretend to be my mother’s friend to buy my father “free” time. For backup, I sourced an agency providing elder care by the hour, in the hope he’d risk how irritable it made my mother to have someone around. In January, he emailed to say he gave the adult day camp at the nursing home up the street a shot, but my mother ran home.

I touched base with the county nursing care co-ordinator. It was time for my mother’s at-home assessment – news that took long enough to come as a relief. My father needed to book this but had dragged his heels. “Only one of our parents has dementia,” my brother said during one of our transatlantic calls. “Dad needs to figure this out.” Our father started making noises about moving them into a private retirement home, filling a folder with brochures. None of us realized then that assisted living facilities aren’t insured for residents with dementia. In any case, he was too reluctant and overwhelmed to move ahead.

The chemo began manageably. Then my father got uncharacteristically curt. When he showed up at the cancer care centre dangerously dehydrated with his soles in blisters, they admitted him straight to the hospital. My brother headed back to P.E.I. to mother-sit six more weeks. “If she asks one more time, ‘Do you think the rain will hurt the rhubarb?’ I’ll scream,” he said. The correct answer is Not if it’s in cans, but my mother had been happy just to ask, five times a day, for the past year.

With my brother there, I could book the nursing care co-ordinator’s assessment. “She looked over Dad’s head to get answers from me,” he told me. No matter how badly my father needed help, he’d do without it if it meant forsaking his identity as a husband. When my brother returned to Ontario, it was like getting kicked out of a five-star hotel back into a dark cave. The luxury of his oversight was gone; things went back to feeling unpredictable, opaque and close to impossibly tenuous.

In late March, my father had a seizure and collapsed unconscious, smashing his head on the kitchen floor. It’s my turn again, I told my brother. I flew to Canada the next day. A CT scan showed a 2.5-centimetre tumour in my father’s brain lining, a meningioma. His neurologist said it had possibly been there for years. My father was calmed but confused. He was convinced his brother in B.C. had been in his hospital room. He argued there were duplicate Queen Elizabeth Hospitals. I requested a social worker.

The following week, I signed my name in the nursing care coordinator’s office, and my mother

was put on the crisis list: she would get the next available bed in one of three Charlottetown safety units, i.e., locked dementia wings; the estimated wait was six weeks. “Wives are desperate to get their husbands into care, but men hang on to the bitter end,” the co-ordinator told me as I wept in her spare chair. One possibility was the ward where my mother volunteered for years; I was terrified she’d never relax. Another unit was full of patients whose dementia was so advanced, they were non-verbal and in recliner wheel chairs – after seeing this from the entrance, I collapsed in a sobbing heap and refused to go in. The last place I saw filled its common area with higher functioning residents. I met a staff member who said she’d worked there for 27 years and loved it. I started begging the fates.

My father would see a neurosurgeon in Moncton in late April. Sometimes he was lucid, then we were back to duplicate hospitals. I took pride in his appetite as a kind of fortitude. It was just disconcerting the way he tucked in no matter who was in the room. Disinhibition they call this falling away of self-consciousness. Its virtue was my dad’s wisecracking; he overflowed with Oscar Wilde quips. I stacked his bedside table with Scientific Americans and took my laptop to his side as often as possible. I was working on a novel inspired by my parents when they were young, strong and beautiful, back when their deaths would have been tragic, not the most natural thing in the world.

My mother disliked visiting the hospital, which bored her, and she hated the rules. If I chased her, she scampered off, elbows flailing. She no longer washed or brushed her teeth. She tugged khaki capris over flannel trousers and wore a windbreaker to bed. One night, she put a cling-wrapped bowl of salad on a gas burner set high. The housekeeper’s husband turned off the gas for me. The housekeeper couldn’t come often; my mother now taunted her. At sunset, I calmed my mother with a wine glass full of cranberry juice, her placebo merlot. I hired an at-home esthetician to do the unthinkable – cut her overgrown toenails.

Every day, I called my brother claiming I could handle things until I lost it. My heart couldn’t take the way my mother ate the dinners I cooked, not knowing there would soon be a day when her dinners at home were over. “I don’t know what I’ll do when you leave,” she kept saying. Don’t worry. We’ll work something out, I’d reply.

My brother arrived from Ontario and drove us to the hospital. Crossing the parking lot in mid-April sleet, flanked by both children for the first time in years, “You’re my little brother and you’re my little sister,” our mother deduced. Good guess, Mom.

The hospital social worker advised us to choose an assisted care facility for our father. We picked a converted manse with dedicated staff, potpourri pots and chandeliers. They’d check on him through the night and give him his pills. They couldn’t prohibit him from anything – there was a sign-out sheet merely in case of fire. We begged him not to wander and ordered him a Safe Return bracelet. When I took him to his barber, I heard him give his old address. I was proud of his beautiful house, too. First chance we got, my brother and I would sell it.

I panicked and told my brother I wanted to blow through every last penny of my parents’ savings to keep them at home. Private care 24-7 would consume 100K in six months, but I decided every week counted. The next day, I reacquainted myself with reality – when someone is as badly deteriorated as my mother, only a well-ordered system of multidisciplinary staff working under protocol with facilities like bathing chairs and bed alarms can take care of her. Nor could we risk what she might do to my father when no one was looking. The countdown to the dementia ward was back on.

At my father’s neurosurgery consultation in Moncton, we were told that surgery was a death wish. Radiation might cause dementia. For now, he’d get regular CT scans. We drove back to P.E.I. reassured, although my father would need to have the neurosurgeon’s appraisal repeated two dozen times. The neurosurgeon thought the tumour and concussion might be red herrings as regarded his confusion. Was it sudden? I booked him an appointment with my mother’s geriatrician.

In early May, we got the call – it was the nursing home I liked best, and my mother would get a single room. We could move her in two days, four days before her 75th birthday. Best not to tell her where she was going. Best to let her settle in for 48 hours before visiting. I could give her an antianxiety med the morning she went in. We took a last walk with Ruby, her collie. I told her that a woman named Ruth Pickles wanted to see her … Isn’t that an unusual name, Mom? I took a box of her favourite cookies and sat behind her in the car. “I wonder if she’s someone from teacher’s college?” my mother mused about this mysterious Ruth Pickles – the most alert, logical, memory-contingent thing she’d said in months. I put the cookies in her hand and watched pretty, young Ruth Pickles lead her away. I wept while an RN explained how quickly residents adjust. I called every 12 hours. My mother had slapped one of the nurses but had a lovely time at the in-house chapel.

My aunt and I went through her wardrobe. I culled books from her library inscribed to her by my father, and we saved every family portrait.

I had two weeks before flying back to work mid-June. My brother said choosing heirlooms was up to me. I gave my aunt as many of my moth-