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6 October 2015

Departure and denial: the contradictions of caring for a loved one with a terminal illness

To this day, the way my mother cared for my grandmother both inspires and confuses me. 

By Joe Donnelly

“Insidious” is how my mother best describes the brain haemorrhage that my grandmother, her mother, suffered in January 1991 aged just 63 years old.

The worst thing about Mary’s illness – a subarachnoid haemorrhage, an uncommon type of brain haemorrhage caused by bleeding on the surface of the brain, which is indeed as harrowing as it sounds – was that it didn’t kill her. Not immediately, at least.

Harsh, perhaps, but my granny’s quality of life towards the end had become so diminished that she needed 24-hour round-the-clock care. She was resigned to a wheelchair. She’d become incontinent. She’d lost the ability to speak. In essence she spent years dying, unrecognisable to the proud woman of her formative years.   

While one terminal illness need not compete with the next, Mary’s was one which had no obvious end. Extensive surgery in the immediate wake of the haemorrhage kept her alive and an archetypal Glasgow lifestyle of frequent social drinking, little exercise and heavy smoking were cited as elements integral to her sickness. These were in turn factors that narrowed her chances of survival.

She lived, though, and spent the next six years in and out of hospital – and latterly a nursing home – suffering a multitude of Transient Ischaemic Attacks (mini-strokes), as well as a number of regular strokes in the interim. Given the variable nature of the illness, doctors were neither able to suggest a best nor worst case scenario. She was given no timeline, no schedule, no structure.

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Looking from the outside in, this may have seemed like something to be positive about – “take every day as it comes”, an unhelpful adage that springs to mind – but, although my grandmother was never a burden on anyone, when a family member requires regular-to-constant care, such a framework, it seems, is a luxury.

It’s worth noting that when my grandmother fell ill I was five years old and when she died I was almost 11. As I approach 30, I’ve likely forgotten more than I can recall, but one thing which stands out in my mind is how my mother handled the situation from beginning to end. To this day it both inspires and confuses me. 

“Are you going to get that?” asked Mary as she nodded towards my mother. A phone rang somewhere along the interminable corridors of Glasgow’s Southern General Hospital. It chimed within earshot, but far enough away to be ignored. “Where do you think you are?” my mother replied.

My mother knew the answer: Mary was at home. She was back in Pollok, the area in which she lived in the Southside of Glasgow, watching Blind Date, preparing dinner, feeding Suzy the cat.

She was not in Ward 67.

Vascular cognitive impairment and vascular dementia were conditions my mother researched in the medical journals housed in her local library. She learned that these, as well as seizures and strokes were, apparently, common post-brain haemorrhage symptoms. In these circumstances, apparently, the patient’s comprehension and awareness can and often does deteriorate as a result. She learned this herself because she was never told.

In a world pre-Google, pre-smartphones, pre-internet, pre-instantaneous answers at the touch of a button, my mother spent hours poring over foreign literature, trying to make sense of what was happening to Mary before foisting her findings on medical staff. The doctors, it turned out, didn’t want to worry her with outcomes that may or may not present themselves – expounding the wholly ambiguous hit-or-miss nature of brain trauma diagnoses.

In July 1991, my grandmother had a massive seizure at our house and was prescribed an indefinite course of anti-epilepsy medication. Her mobility was thereafter grossly affected as the drugs acted to subdue her already increasingly restricted movement.

In the meantime, things became complicated at home. In 1972 my grandfather, Mary’s husband, died of a massive heart attack, aged 43. My grandmother lived independently for a number of years thereafter before meeting someone else – an arrangement of sorts that saw her new partner assume the role of breadwinner, while she became a stay-at-home companion.

By chance, six months prior to the haemorrhage whilst rearranging her finances, Mary signed half of her house over to him. Twelve months later and he wanted nothing to do with her, or the relationship, but was still very much interested in what he might serve to gain financially as a result of Mary’s illness.  

That’ll be fucking right, my family heralded in unison. As a social worker herself, my mother helped maximise my grandmother’s benefits and coordinated her care package; Care in the Community – the policy that champions deinstitutionalisation – was in its dawning years thus still finding its feet, however, as my grandmother now needed morning noon and night time visits, securing the best resources for Mary was crucial.

My mother shouldered the drawn-out and increasingly-discordant legal fallout between my grandmother and her now ex-partner on her behalf. She bought a car to transport Mary to and from hospital appointments. She cared for her for months at a time at our house, offering reprieve from the acrimony at home. In 1993 my mother suffered a miscarriage as a result of stress.

Over the next couple of years Mary’s condition worsened. In 1995, she had another, much larger stroke and doctors recommended that she be admitted to full-time care. After searching at length – several visits and dozens of phone calls – my mother decided on a nursing home not far from my granny’s house in Pollok. The next two years would see my grandmother fade further still as she crept into herself, her illness gradually getting the better of her.

“Your hair is lovely Mary,” said my mother as we arrived on one of our visits. “Who done it for you?”

Mary raised her arm slowly and pointed a finger towards herself.

Confabulation was a word I’d never heard before. According the Oxford Dictionary It means “to fabricate imaginary experiences to compensate for loss of memory”. By this point my grandmother relied on other people to handle her personal care. Cutting her own hair was out of the question. 

By 1997, my grandmother had stopped speaking altogether. Every Thursday after school I’d visit, I’d do my homework and my mum would engage Mary in cordial one-way conversation. We’d sit for a few hours and leave. Although I still treasure these memories, this chracterisation is the only one I have of my granny: one where she sits quietly, vacant, watching my mother talk at her, watching me scribble into an A5 jotter.

On 31 March of the same year, complications from a chest infection killed Mary. Given her lengthy deterioration to this point, it was a fairly quick and painless way to go. For that my mother is thankful.

Again, how she handled the situation from start to finish inspires me. She was not only my grandmother’s daughter, but in the end her carer, her advisor, her social worker. She worked full time hours and still visited seven nights a weeks.

What confuses me, though, is her recollection of my grandmother’s condition. The memories I retain of Mary’s life at this time revolve around the haemorrhage, the hospital, the seizures, the legal disputes. Even the anecdotes: the phone call in the ward, the phantom haircut – are all rooted in her illness. To my mother it’s different.

She, better than anyone, appreciated the extent of Mary’s illness, but still not in the same way I recall. To her, the conversations were two way, right to the end. To her, they shared a connection: one which never died, even when Mary’s spirit did.

I learned recently that my mother and Mary shared a somewhat ambivalent relationship prior to the haemorrhage. The illness brought them closer in ways both of them would definitely rather have avoided, but through something so horrible, so insidious, they bonded on a level that could never have been reached before.

My mother’s coloured sense of Mary’s condition is her way of processing both sides of this anomaly. It is, to all extents and purposes, a coping mechanism. She could remember Mary the way I do, but what’s the point? Holding onto whatever makes residuum more bearable makes perfect sense, even though we as a society have a tendency to dwell on the morbidity of when our dearest leave us. We remember their anniversaries of death far easier than their birthdays.

Although Mary’s brain haemorrhage stole her old life from her, what she gained is testament to her legacy in that the values she instilled in my mother helped her through her darkest hour. I may lack memories of Mary in good health, but in my mother I bore witness to my grandmother’s accomplishments as a parent first hand. What Mary taught me, then, is priceless.

I sincerely hope I never have to prove what I’ve learned, but I now know I’m well equipped if ever I do.

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