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About a decade before they died, my parents (then in their mid-70s) moved to a house a couple of miles from us and I could see them on a regular basis and their darling grandchildren, who could do no wrong, would be arm-twisted into visiting every week or so. The story is, I guess, typical of millions of folks across the world. And then dementia became an unwanted intruder.
My first post-doctoral research was on Alzheimer’s disease and I had watched my parents—especially my father—for signs of dementia like a hawk. His mother had vascular dementia for the last ten years or so of her life. Although my father died of a stroke, this was a sudden single event and up until that point he was as sound of mind as he had ever been. A few months before his death, he had, when my mother was out of earshot, said how irritating her habits were getting and how she was ‘deliberately’ forgetting obvious things. By this stage I had noted that her memory was not all it was, but discounted it as mild cognitive impairment (MCI), a condition that affects a lot of older adults without necessarily turning into full-blown dementia. In MCI, there is definite impairment of memory and thought, but not enough to interfere with everyday living. Whilst my father was alive, my mother’s symptoms were never worse than mildly scatty-minded (if that). But once my father died in May 2011, things began to slide downhill at an ever-increasing pace.
Which brings me to the point of this piece. I have, over nearly thirty years, tested umpteen people with dementia. I’ve read extensively about the subject, lectured on it to all sorts of professional, student and lay groups and have even been known to produce the occasional research paper. But no matter what you learn as an academic, it does not prepare you for what happens in reality when it is your relative who is the patient.
Once my father died, I found myself making every intellectual decision for my mother that demanded the cognitive skills of anyone older than a child. For example, all the funeral arrangements, the dealing with the will, sorting out my father’s estate, getting accounts transferred just to my mother’s name, all fell to me. Lest you read this as a complaint, it isn’t. But my mother usually couldn’t delegate tasks to save her life and had to take charge of everything. At the time I thought I was simply easing an emotional burden and that it was the grieving process that made her uncharacteristically abnegate responsibility. But then the mental decline became more painfully obvious. My mother had baked all her life. Now she was making cakes but forgetting to put the eggs in the mixture. She collapsed because she had forgotten to take her medication. And then the crunch came—she decided her old sewing machine was too complicated to use. My mother practically lived for sewing. Often the garments she made were aesthetically dubious (there were kaftans and waistcoats that she made for me when I was a teenager that still reappear in nightmares) but nonetheless she could sew practically anything. And now operating the machine was too hard. So she bought a simpler machine. And couldn’t even work out how to thread it.
No textbook prepares you for the shock of this moment. Something that all your life a person could do with their eyes closed is suddenly beyond them—and they are not remotely concerned. My mother decided that the modern sewing machines weren’t up to scratch and that she would give up sewing. Of course by now alarm bells were ringing in my head and I was about to get her seen by a memory clinic, when fate intervened and my mother got blood poisoning.
Over the next few weeks, to add to her troubles, my mother suffered from delirium. This is a condition that many unwary clinicians confuse with dementia, but it is different, not least because delirium ebbs and flows in strength with the underlying physical symptoms causing it (in the case of my mother, a high temperature). When her temperature was high, my mother developed all sorts of interesting delusions, including confusing me with my late father. I lost count of the number of times I had to explain to her that I was not running away with ‘that blonde floozy’ (i.e. my wife, who is blonde, but whose reputation is otherwise purity itself—or so she insists) and that I was not planning to divorce her. I also learnt to applaud the tap dancing penguins she insisted were in the ward to entertain the patients (not applauding upset her).
Following this, my mother alternated between hospital and a care home, but eventually she went into the hospital and it was clear from her state that she was never coming out again. After the delirium finally left, the dementia had progressed to the extent where she had little memory for anything new. Of course I was prepared for this, but even so, some of the milestones marking the decline still had the power to shock. The one the whole family remembers was the day when my mother no longer recognised either of her grandchildren. It is easy to write this now in an objective manner, but the visceral reaction at the time was something rather different.
My mother died in November last year. To use the cliché, it was a merciful release. Visiting her in the last month of her life was like observing a salmon on a fishmonger’s marble slab. There was no discernible sign of life in the eyes, just a vacant, open-mouthed stare and not one jot of a response to anything or anyone. The end when it came was thus not a surprise. One morning, there was a notable change in her breathing that could only mean one thing, and the hospital contacted me at work. Ironically, I had just finished a class on the mid-life crisis and how the deaths of relatives can be a trigger for this, and was about to start another class on death, dying and bereavement. Dropping everything, I drove to the hospital, some miles away on a narrow twisting road with no passing points, and got stuck behind a very nervous learner driver. I arrived only a couple of minutes after my mother had passed away. Probably it was just nervous release, but the fact that I was late made me laugh—my mother always complained I was late for everything.
