The older woman faced them directly. “There can often be milestones along the way, occasions when the caregivers, and sometimes the patient, can spot that they are entering a new stage. Perhaps that’s what Edinburgh was all about. You say she hasn’t been the same?”
Elizabeth Fairborough’s queries were professionally delivered, but behind the words was a shared sense of sadness between the doctor, Robin, and Jennifer. Alberta was down the hall, undergoing a series of tests. With her in good and capable hands, the three had used the opportunity to have an intimate chat in Fairborough’s office.
“No, something’s different. She still gets around the house with no real problems, but she more frequently fades off into another world – sometimes right in front of us. Her eyes light up and she’s obviously someplace enjoyable in her mind.”
Jennifer added to her brother’s observation: “In those moments, she sometimes forgets the steps going out into the garden, or to flush the toilet, or even to keep away from the stove if one of us isn’t right there. Then she pops out of it, at times without our notice, and just carries on as the Mom of old.”
Fairborough shifted in her chair, at pains to know how to ask a complicated question. “Can you go over with me, again, why you made the decision to let Alberta decide where she wanted to journey – in her mind, I mean? When we spoke in earlier sessions, I thought the literature and best practices were clear that a rigorous effort to keep an Alzheimer patient’s thoughts in the present could actually slow down the decline somewhat. Can you help me to understand?”
“Because it was her wish,” Robin answered simply. “She perused all the research, just as we did, and she concluded that she would rather travel on her journey unfettered, even if it meant it would be easier for her to lose touch with us along the way.”
Fairborough wrestled with this, in part because she understood it well enough. Alberta had been her best friend for decades, and in all that time had taken responsibility for her own directions and decisions. That she would do the same with her disease made perfect sense. But should they permit it? – this was the real question. Ultimately, the choice belonged with the family who, in this case, were also the caregivers. But the Alexander family had opted to let their mother prescribe her own treatment. For a professional doctor, dedicated to her craft, this was a difficult practice to accept, despite her knowing the patient as well as she did.
Sensing the strain on their friend, Jenny attempted to assuage it, somewhat. “Elizabeth, Mom told me that she believes that aging is a lifelong process and must start in childhood and be understood as one goes through the stages of life. And she believes that if it’s to be accomplished successfully, one must understand that doing it well is not about the avoidance of losing one’s mind. It’s the adaptation to that process, how it’s handled, that really matters.”
Elizabeth nodded in understanding. “But what of all the reams of research, and the life story of so many victims and their caregivers? Surely, that counts for something. And as a professional I’m trained to build any treatment on the basis of the evidence.”
Both Robin and Jenny could spot the turbulence in the physician’s mind at the moment. Clearly, what she was being challenged by wasn’t their theories, but the considered opinion of her best friend. Was hers not a life experience? Wasn’t Alberta’s insight just as important as any other? The journey was her journey, not theirs, and as long as she had considered all the options, was it not Alberta’s privilege and right to choose how the end of her journey would unfold? There was no law against it, only years of research by principled people doing their best to provide information to patient and caregiver alike.
She looked up and smiled at her visitors, her friends. “The delicious irony in all of this is that your mother challenged me about many things more than anyone else in my life. And she is doing it now. Alberta knows I carry the weight of science and research on my side, but she also understands that, in the end, it doesn’t really matter – it always closes out the same way, and the person is gone. I’ve known her so well, and here she is, confronting me with other realities, just as she always has.”
Jennifer reached out and grabbed her hand. “During all of our study about this disease we were repeatedly told that the person suffering from it is not really the person their loved one knew for most of their lives. But the trip to Scotland got me thinking that nobody really knew Mom when she was a child. What we know is the adult version of those struck with the disease. We think that they are drifting off, away from themselves, as the brain cells die off. But, really, as they move back through the years in their mind, they are only rediscovering who they have been all along, before the years of adulthood, relationships and responsibilities crowded it all out. I realized in Edinburgh that the mother I thought was drifting away from herself was actually moving closer to who she was before any of us knew her.”
Elizabeth knew there was nothing really scientific in this, yet there was the element of the profound and real in Jenny’s observation. The strong will and mind of Alberta herself was teaching all of them some new truths.
She grasped Jenny’s hand even more firmly and observed, “The desire to be our true selves when everyone around us thinks we have lost who we are abides in all of us. We all need a safe space where we can go, as we are, and not be questioned. But we still have to provide care based on what research tells us. I’m not trying to dispose of Alberta’s journey; what I’m trying to do is create her well-being, give her a fighting chance for as long as she holds on.”
Jennifer and Robin sat silently, offering no response.
“What?” Elizabeth said.
“Well, suppose she’s not wanting to fight but wishes to go where she’s happiest,” said Robin. “It is her life, right? We aren’t trying to be difficult, but Mom seems to know what she’s about, even if it goes against the opinion of the experts.” More silence ensued, so he added one more thing. “I took some culinary training in Paris, at a place called Socrates Table. Under the glass tops of the tables were quotes of his. I memorized what I could, but the one that stuck out the most, because of Mom’s situation was this: ‘I enjoy talking with very old people. They have gone before us on a road by which we, too, may have to travel, and I think we do well to learn from them what it is like.’ Perhaps that’s what Jenny discovered in Scotland. If Mom hadn’t had dementia, we might never have learned of those early influences that crafted her into the marvellous woman she is.”
The physician leaned back in her desk chair and sighed quietly. It was very rare to encounter caregivers such as these two. They weren’t only open to their mother’s journey; they were highly eloquent and intelligent in defending it. It was more clear to her now than ever that the intimacy between Alberta and her offspring wasn’t only deeply emotional. It was also highly adaptable. Her thoughts strayed to Sandy, and she realized so much of what she had been listening to in the past few moments could just as easily have come from him. Alberta’s husband had enjoyed a very elastic sort of mind, bending it around problems or situations that others would merely run up against. And he was curious about human nature, to the point where he could easily think outside the box. Perhaps it was that very nature that was emerging from the two children he left behind. She smiled at her visitors.
“You know, it could be that healing is more about listening with an open heart and mind than always trying to fix people.” The three smiled at the admission and whatever tension had permeated the office was gone.
“Wherever she goes from here, the fact is that her Alzheimer’s has entered a new stage in a quicker manner than I, frankly, expected. I don’t know what it will all mean, and it will depend on the results of the tests she’s taking today. But the speed of her decline will likely now be accelerated. We can slow it down, somewhat, with medication, but it is meant to slow her mind down and keep her imagination from taking flight.” She noted Jennifer was about to interrupt in protest, and added, “But I suspect, in this case, that Alberta’s flights of fancy are actually responsible for keeping her nature as pliant as it is. It’s true what you say, that she is in a happy place, and it’s clear to me that you wish it to stay that way. I can only concur because it is your choice and that of your mother. But remember: at some point, it will become so serious that this approach will have to end, and more stringent human intervention must begin. I hope that when that time comes, you will be as trusting of me as I am of you today.”
It was a kind thought and one amenable to Robin and Jenny. It was as if all three caregivers understood that healthy lives begin to fray the day people become silent about those things that are most important to them all.
As she watched the two of them leave her office, she was struck with an overpowering thought: from the day we are born, we start to age. We are all just old people in training.