CANADA, 2007
There was a gap of six years between when Margaret was first diagnosed with Alzheimer’s and David discovering he had cancer. During those years I spent a lot of time on Vancouver Island. Initially, in the early stages of the disease, Margaret’s husband, Ken, was her primary carer, managing all the shopping, meals, medications and doctor visits. They had a weekly cleaner, which was a huge bonus, however he was obviously struggling with Margaret’s personal care.
On reflection there had been many clues to Margaret’s advancing dementia that I might have recognised if I’d allowed myself to imagine something so terrible. On that very first visit to the island we shared many memories and stories yet there were vast gaps in what she could recall. She had absolutely no memory, for example, of our cousins of a similar age to her, with whom she spent a huge amount of time both before and after the big trip to America. She had strong memories of the places where they had lived overseas but very little to say about the people they met: the school friends, the neighbours or her teachers. She was inclined to tell the same anecdotes over and over again. I didn’t really notice until much later that her handwriting had been deteriorating every time she sent me a letter – I can see it clearly now. Her artwork also changed. Her painting style became fragmented, confused and more abstract. Perhaps if I’d been in contact with her over our entire lives I would have picked up on these changes. As she was ‘new’ to me, I just accepted her without question.
My initial angry response to her grim diagnosis also changed over time. I was intensely grateful to have found her when I did and not two years down the track when the possibility of all those marvellous conversations had vanished. I felt such enormous tenderness for her and her plight. She really, really didn’t deserve this cruel outcome. Nobody does.
Each time I did a mercy dash to Vancouver Island there’d be lots of excitement, a celebratory dinner and visits from other family members. It would take me a few days to assess what was going on to determine how everything was being managed. By the time I visited in the middle of 2007 Margaret had become quite anxious and was incapable of sitting still for more than two minutes. It’s a common stage of dementia, when the person realises they are losing cognitive function and distressingly struggles against it. I can’t even begin to imagine Margaret’s inner turmoil as she struggled to cling on to some semblance of control of her life. Although we still talked a lot and laughed together, most of our conversations were led by me and were becoming repetitive, the subjects narrowing down to just a few favourite themes.
Margaret was fixated on the calendar hanging on the kitchen wall, checking it every twenty minutes, needing to know the day, the date and any appointments that had been scribbled in as reminders. She was also obsessed with the two cats, letting them in and out constantly and topping up their food bowls twenty or thirty times a day.
Her hair desperately needed cutting and her nails needed trimming. Her clothes were in a mess – I sensed she’d been wearing the same two or three outfits over and over and not putting clothes out to be washed. I found the cats’ food plates in her underwear drawer. It was time for me to tackle these issues and thankfully Ken was quite ready to admit he wasn’t able to keep up with many aspects of her care. We discussed getting some home help, just for Margaret, and although initially reluctant at the thought of having a stranger in the house, he eventually agreed. Through a local nursing service we found a marvellous woman who lived nearby and who started coming over several afternoons a week to help with bathing, washing and preparing meals.
In the interim I needed to wrangle Margaret into a bath for a proper scrub and hair wash. The small guest bathroom had a manageable sized bath and I somehow helped her to strip her off and enticed her into the deep soapy water. She immediately relaxed, just as irritable children do when plonked in a warm tub, and she allowed me to do her hair and scrub her gently all over. She smiled at me, saying, ‘I do hope you have someone to do this for you at home. It feels lovely’. She was such a gentle person, always kind and concerned for others. I mourned her loss of memory and hoped that this sweet aspect of her personality would persist. I felt such fondness for her.
Margaret and Ken still attended the weekly art group, although she’d stopped wanting to paint. For a while she resisted going at all, saying she was embarrassed because she’d forgotten names. ‘These are woman I’ve known for decades and I can’t remember who they are,’ she lamented. Once we’d arrived she seemed happier, although the restlessness and pacing was a constant. Ken loved these Wednesdays because of the generous lunch and the opportunity to chat with Margaret’s oldest friends. As their contribution he’d picked up a barbecued chicken from the supermarket and everyone brought delicious homemade treats: soup, country breads, salads, pasta bakes and a myriad of sweet delights. Like Americans, the Canadians love their slices and every week there was an amazing new taste sensation. It was the culinary highlight of the week for Margaret and Ken when I wasn’t around.
I also loved spending time with those feisty woman artists. They were intelligent, talkative and talented. They laughed a lot, but perhaps not as raucously as a similar group of Australian women would. Ken seemed a bit overwhelmed by them at times, and could rarely get a word in. Margaret couldn’t stay long at the table; her agitated legs got her up and moving.
My ears pricked up when one of the women told me that her older sister had a fulltime, live-in carer from the Philippines. I later discovered it was a scheme supported by the Canadian government that allowed trained carers to be employed on a two-year contract to live in as carers of babies, young children and the elderly. If they remained employed for five years, they could apply for residency and then their families could join them, also as permanent residents. On the surface it seemed like a brilliant idea, and certainly one that could work for my sister. Ken was determined to keep Margaret at home until the end of her life, and even though I knew this was highly unusual with a disease like dementia, I believed it could be possible for a few years at least.
What worried me most was Ken’s state of mind. He coped reasonably well as long as there were no hiccups – no unexpected complications – in their life. If a problem arose, even something as simple as a leaking tap or an issue with the car, he became irrationally upset. It was as though he was just barely hanging on, so easily rattled and flustered. It altered his personality, making him difficult to deal with. What I failed to notice were the multiple common symptoms of his undiagnosed Parkinson’s disease. Depression, paranoia and delusions are all telltale signs that were not detected by me or any doctors, including the gerontologist they were seeing on a regular basis.
I was well aware that Ken spent a lot of time – almost all the time – alone with Margaret. They were no longer communicating conversationally – it was all about day-to-day tasks. This complete lack of mental stimulation and interaction with other people has devastating consequences for carers. I’ve read that a large percentage of people who have a partner with dementia also develop a neurological condition.
Up until this visit my focus had been only on Margaret and her evolving illness. Before leaving I started the ball rolling with an application for a fulltime Filipina carer, and could only hope that Ken and other family members would follow it through. I couldn’t imagine Margaret being able to stay living at home, in these stressful conditions, until the end of her life. She was still pretty fit – small and wiry with lots of energy. She could easily live another five years, or even more.
When I boarded the small plane from the island to Vancouver, it was with mixed feelings of anxiety and relief. I worried about how things would go until a fulltime carer can be found; a process that might take more than six months. But I knew I’d be back before then.