The day after I saw my mother for the last time, I picked up the novel ‘Still Alice’, the story of a Harvard professor overtaken by early-onset Alzheimer’s disease. The author, Lisa Genova – who holds a PhD in neuroscience from Harvard – writes skilfully and knowledgeably of the gradual decline of Alice’s cognitive functions, her distress at and denial of the diagnosis, her attempts to cover up her illness and ultimately, her acceptance of the disease. It is a powerful story, sympathetically and realistically told, and insomuch as it is possible, allows someone with a healthy brain to imagine what it would be like to have one that malfunctions so badly. Dementia defies understanding from any other perspective than an observation of symptoms. When my mother—whose Alzheimer’s began in her late seventies—talked about her toy dog in terms that left no doubt she thought it was real, I could see evidence of her dementia, but I simply could not imagine the thought processes that would allow her to look at a stuffed toy and perceive it as alive.
I had first noticed changes in my mother after she had undergone back surgery that had meant being under anaesthesia for nearly eight hours. She seemed different, but I couldn’t really put my finger on any specific behaviour or symptom. I put it down to the trauma of surgery and expected that she would be more ‘herself’ once she had fully recovered from her ordeal. But it never happened. Physically, she regained her mobility and took up most of her former activities, but her behaviour was slightly off. Her decisions weren’t always reasonable and at times, her perspective seemed a bit skewed. She became obsessed with order. She had always been someone who liked organization; her filing system for the thousands of slides pictures she had taken was legendary and every tin of food that went into her cupboard was marked with the date of purchase, so this behaviour seemed in keeping with her personality—at first. Even in retrospect it was impossible to pinpoint the moment when these habits of a lifetime began to take on an obsessive nature—when her judgement about what was necessary and reasonable began to fray around the edges.
As the only one of her three children to live in the same city, I saw my mother more often than the rest of the family and was, in consequence, the only witness to the odd behaviours that began to raise occasional red flags. I never once considered Alzheimer’s as the reason for her failings. She was just getting old and I assumed, without any substantive evidence, that the various surgeries (and accompanying anaesthetics) she had undergone over the last few years had had a cumulative effect. (There is discussion in the medical community about the link between certain anaesthetics and dementia.) But there was no history of dementia in her family that we knew of, and both of her parents had lived into their nineties, sharp as tacks to the end.
I became concerned about her safety on the road and on the advice of her physician, convinced her to take a computerized test that would assess not just her driving skills and reaction times, but her decision-making ability. She failed it resoundingly. A backlog of bills, receipts and important letters had accumulated on her desk, and when I offered to help her organize them it was obvious from watching her endlessly sorting and re-sorting a pile of credit card receipts that she simply didn’t know what to do with them. At that moment, bigger bells began to go off. This could no longer be considered a normal, inevitable loss of mental acuity—this was big-time confusion.
But Alzheimer’s was still not on my radar. Something was up with Mom, but it wasn’t that bad. She took some cognitive tests at her next doctor’s appointment and passed them easily. The doctor explained the effect that vascular ill-health could have on her brain function, and Mom indicated she understood the information, although she didn’t ask her usual pointed, pertinent questions. She agreed to a more comprehensive cognitive exam, but the day before she was to take it, she phoned to cancel the appointment. In the face of her spirited denial that there was anything wrong, it would have been cruel to insist that she go, and I let it drop.
But I did have a stiff talk with her—feeling awful for doing it—but certain that she could and would face the reality that living alone and looking after a house and garden were too much to cope with. I wasn’t sure I would always be living in the same city and available to help out, I told her, and for her own safety and well-being, she should consider an alternative. She listened, saying nothing, but defiance and fear were written on her face. Three days later she called my eldest brother to announce that she wanted to move to the west coast to be near him and would he find her a place to live? She appeared to be determinedly happy with her decision, but my own children couldn’t understand why she kept saying she was looking forward to ‘being with family’. What were they, if not family, they wondered. I didn’t know what to say to them. What I didn’t realize then was that dementia removes the ‘filters’, as one family member astutely put it, and that my mother was quite unaware of the inappropriateness of some of the things she said and did.
She had always been very decisive, but began to go back on her decisions or forget she had made them. After recovering from the shock of losing her driver’s licence, she gave me her old car as a gift, but two months later demanded that I sell it and give her the proceeds. She suspected the handyman who had come to install a wireless doorbell of deliberately rigging it to go off when no one was there. Even when an entirely logical explanation was found, she remained convinced that it was a plot to drive her mad. She offered me a pile of fireplace wood but when I went to pick it up, angrily accused me of taking it without her permission. After she had moved, she began to see me as an enemy, and would rail against me to family and strangers alike. In an agreement made before anyone realized that she was in the throes of dementia, she made a partial dispersal of her estate to two of her children, but refused to sign the cheque made out to me, convinced that I was plotting to get my hands on her money and determined to cut me out of her will. Money being the tricky topic that it is, my siblings and I did not approach this well, and it created divisions that still exist.
It was a terrible time. Despite the mounting evidence, no one in the family saw her behaviour as much more than the intransigence of an elderly person who had always held strong opinions and been occasionally sharp-tongued. She wasn’t the person she had been, but the changes had been relatively subtle at first, and it is hard to overstate the reluctance we all felt to lay the blame on the doorstep of dementia. It is an extraordinarily difficult thing to accept. There was, in the initial stages of the disease, far more about Mom that was normal, than otherwise. And given the lack of a definite diagnosis, which we might have had had she been willing to take the cognitive tests, I looked inward for reasons to explain her new hostility to me. There must have been something I had done to make her feel the way she did, to justify her accusations against me. Somehow she must have misinterpreted an action on my part that had struck her as malevolent. Or maybe I just deserved it.
By chance, I ran into a high-school friend who related her mother’s increasingly odd and uncharacteristic behaviour, which included hurtful accusations against her daughter. My friend’s extreme distress was compounded by the fact that her father was in complete denial of his wife’s state. By this time, I had been doing some reading about vascular dementia, and the various effects of tiny, undetected strokes, and told her what I knew. It was the first time she had considered that her mother’s antagonistic and paranoid behaviour might have its basis in changes to her brain, and that she might not be at fault for what her mother thought of her.
To make matters worse, my mother had always been very adept at covering up her feelings, at presenting a certain image of herself, and was able to maintain this facade until she was well into dementia. The gerontologist/psychiatrist who eventually examined her when things started to get really bad said he had rarely seen anyone so skilled at covering for herself.
Several months after the emergence of her extreme suspicion of me, my mother called me in France—it would prove to be the last time she was able to cope with the multiple digits of my number—and carried on a conversation as guileless and cheerful as if she were talking to her best friend. As I listened to her, her voice so apparently normal, so motherly, so absolutely herself, I began to shake uncontrollably, not from anger, but a profound confusion compounded by grief. How could she possibly say the awful things she had, and yet talk to me as though everything was fine? At the time, although I knew something had to be very, very wrong, I couldn’t help but feel betrayed by someone who had once loved all her children unconditionally.
It took a casual remark by a staff member at her retirement residence to make me realize that cognitive impairment was what had turned my mother into someone very different. The words had been spoken aloud, and in that illuminating and vastly relieving moment, lifted much of the confusion and blame that I had assigned myself for the past year.
Age-related dementia, whether in the form of damage from vascular strokes or Alzheimer’s, is a extremely difficult thing to accept for everyone concerned. Family members who have a regular, up-close-and-personal view of Mom or Dad’s mental evolution may find themselves at odds with siblings who live away, and for whom a weekly telephone call with parents gives no sign that anything is amiss. The symptoms of dementia may come and go, making it even more difficult to establish, and often it feels plainly unfair or exaggerated to put the weighty label of dementia on a loved one’s quirky behaviour or forgetfulness.
The central character in Lisa Genova’s story, after an initial denial of her condition, takes the uncommon step to monitor her own mental disintegration by asking herself a series of test questions at regular intervals. She knows that when she can no longer answer these questions correctly, she will be at the edge of an abyss, if not already in it. Her pragmatic approach, born of a sharp intellect and a rational mind, is not typical of most Alzheimer’s victims.
Although there have been some well-known figures—notably Charles Bronson and the best-selling author Terry Pratchett—who have made their illness public, and in Mr. Pratchett’s case, opened up his experience of Alzheimer’s to a documentary film-maker, it is an extraordinarily difficult diagnosis for most sufferers to discuss.
In a dark corner at the back of my mind—and of my brothers’ too, I suspect—is the fear that I will go the way of my mother. But for the sake of my children and my lover, I hope to have the courage and capacity to look Alzheimer’s in the eye if it comes calling. At the very least, our family has seen it first-hand, talked about it openly and become more knowledgeable about it, all of which will better equip us all to deal—potentially—with this awful disease.
‘Still Alice’ is not only excellent fiction, but provides an essential key to understanding Alzheimer’s—the perspective of the person for whom it is the most devastating. I wish I had read it sooner.
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