Guest article written by: Cory Andrew Labrecque, Ph.D.
I am a professor who teaches about how the religions (with a focus on the Roman Catholic tradition) think about ethical issues in medicine (specifically related to aging and end-of-life), biotechnology, and the environment.
To be honest, I never thought I would become an academic. I was set, since childhood, on becoming a physician. And that interest was sealed in stone the moment my 9th-grade biology teacher told me, as she was handing back a test that I had just aced, that I was going to make a fine doctor. For the life of me, I cannot remember what was on that biology test that would inspire her to say something of the sort. Alas – my teachers always had a deep impact on me, and this one comment set things in motion.
After high school, I studied health sciences in CEGEP (a post-secondary program in Quebec that precedes university education) and then went on to pursue a bachelor’s degree in anatomy and cellular biology at McGill University in Montreal. I was heading toward medicine, just as planned.
But Life, as it were, had something else in mind.
My grandmother, (Nanny) with whom I had always been very close, developed Alzheimer`s Disease. It only took a moment it seemed before Nanny was no longer able to live on her own. She had been up until then, a widow who lived happily, busily (her social calendar was crazier than mine), and independently. Then, almost overnight, she was moving into our house because she just could no longer manage by herself.
Truthfully, I was delighted that she was coming to live with us. As a boy, I would wait eagerly at the kitchen window every Friday afternoon, when she would come to visit. Nanny would take the #4 bus from her apartment to our place. If I were standing at the right angle looking through the bottom left-hand side of the window (I remember it all very well), I could see her get off the bus at the very end of my street where the stop was. And then, in one quick swoosh, I was out the door, running up the street, arms outstretched. I would hug Nanny as if I had not seen her in ages (it had only been a week) and then we would walk back to the house together, talking about who knows what. It was always a special treat when she would stay overnight; I would wake up bright and early on the day to clean my room, change the sheets, and get it all ready for her.
This time, it would be different, of course. I remember helping my mom pack up my grandmother’s apartment. There were many tears shed as we closed that particularly happy chapter. We painted my sister’s old room a lovely lavender and decorated it with familiar things (many from my grandmother’s apartment). But it wasn’t long before her memory dwindled, and her mood changed; she would spend time waiting at the living room window for her husband (who had died decades before) to come home. She no longer called me by name (which was the least of my grieving), her gentleness gave way to behaviour I did not recognize, and my world started to spin about me.
I was trying hard to keep up with my studies in what was a very competitive program. But I was having a difficult time coming to terms with what I was seeing at home. In fact, nothing I was doing seemed to matter all that much in the grand scheme of things. I lost interest in the mundane routine of going to school, pouring over textbooks, and listening to hours-long lectures. I started missing exams. I didn’t care.
“Your grandmother is no longer really your grandmother. Alzheimer’s robs people of who they were,” he said.
It was not long before my supervisor called me into his office. “What is going on with you, Cory?” he asked. I was hesitant. I did not want to talk about what was happening at home; I did not want to blame my grandmother for the choices I was making. In any event, I blurted out that I was having a difficult time, and that my grandmother was not doing well. My supervisor told me that I was closing doors to my future and that I needed to regain focus lest my plan on continuing in medicine be cut short. He was terse (although I do not think he meant to be malicious in any sort of way): “Your grandmother is no longer really your grandmother. Alzheimer’s robs people of who they were,” he said.
I left his office puzzled. “If not my grandmother, then who was she now?” It was an existential question and a serious one at that. So serious, in fact, that it drove me back to the University to consider it with rigour. Instead, though, of taking more biochemistry and physiology courses, I found myself registering for theology and ethics classes because it was in those fields that discussions around these sorts of questions were being had in an intelligent and meaningful way. Ancient and contemporary wisdom of the world’s religions, particularly when it comes to questions about death, dying, and suffering, was fascinating. That the religions have been thinking for thousands of years about these key features of being human won me over rather quickly.
In time, the resources at our disposal were just not enough to keep Nanny at home with us, where we strongly felt she belonged. The day we moved her into the long-term care facility on the other side of town broke us at the core. There, the disease progressed rapidly. The weeks turned to months, the months turned to years. Nanny was now bedridden, in and out of consciousness, and had not spoken a word for so long that I myself was starting to forget what she sounded like.
With all clarity, she said: “God has been good to me.” She closed her eyes and went back to sleep.
I would visit Nanny weekly with my mom, but not with the excitement of a boy waiting for his grandmother at the kitchen window. We would stand, one on either side of her bed, talking over her – as if she was part of the furniture – mulling over what we were going to have for dinner.
And then it happened. On one particular visit, as my mom and I were chatting over my unconscious grandmother, her eyes opened. With all clarity, she said: “God has been good to me.” She closed her eyes and went back to sleep.
I thought I had conjured up the whole thing. Surely, my ongoing grieving was taking a toll and causing me to see and hear what I wanted to see and hear. In my disbelief, I asked my mom to repeat what my grandmother said, twice. I needed to know that what just happened really happened because it did not make any sense whatsoever. Nanny had not been able to speak an intelligible word, let alone a whole sentence, in years. I did not know her to be a person of faith (although in Quebec, these things are kept quiet by many, even in the home), but the words that poured out from her spoke of transcendence and gratitude. Two things I never would have imagined to be on the lips of someone in the throes of late-stage Alzheimer’s Disease.
Whatever it meant and however the impossible came to pass, I burst into tears.
The image I have in mind here for healing is “stitching:” the work of the sewing needle as it begins to bring together two pieces of fabric that have been ripped apart.
In that very moment, I learned about the healing power of presence. Not me being present to her; but my grandmother being present to us in her frailty, in her silence, in the darkness of disease. Across the board, religions have long taught that healing is not simply the restoration of bodily function. It is more than this, much more. As many of us know, healing has everything to do with wholeness. This experience at my grandmother’s bedside did not suddenly heal my brokenness or woundedness, but it began to bind what had been torn. The image I have in mind here for healing is “stitching:” the work of the sewing needle as it begins to bring together two pieces of fabric that have been ripped apart. That is, healing is the process of mending where we have been torn (by illness, disease, loss, failure, or what have you) in body, mind, and soul.
My Nanny – this “shell of a woman” (which is how many described her) – not only taught me an important life lesson, but she also accompanied me (even in her bedbound state) as I stumbled along a path that I thought had already been laid. I quickly completed my anatomy and cellular biology degree, then started a second bachelor’s in religious studies. I moved on to join my love for religion and medicine with a master’s degree in bioethics, writing my thesis on whether patients with Alzheimer’s could be considered persons. This was followed by a doctorate in ethics with a dissertation on ageing, ageism, and trans-humanism.
Years have come and gone. Both my Nanny and my Mom have since passed away. My wife, our daughter and son, and I now live in the house of my childhood. Our little ones wait, with eager anticipation, at that very same kitchen window for me to come home from the office. They begin bouncing about the moment I come around the corner of our street.
When I pull into the driveway, the sewing needle completes one more stitch every time I see them there. And I continue to heal.
Join us for Doing small things with great love: A Tribute to PSWs
Our thanks and esteem to Cory Andrew Labrecque, Ph.D., for this blog post. Want to learn more from Cory? Join us on Tuesday, February 7th for our FREE webinar, “Doing small things with great love: A Tribute to PSWs” Register here!
Beautiful article. How do we teach families that although Alzheimer’s takes the loved one physically and mentally there is always a moment that we may or not see the person we love show themselves.. I have even seen humour from a person who had not spoken for many months.
What a beautiful gift Nanny gave the writer.
My mind and heart were touched deeply by your wonderfully written words. First, by reminding me of my mother’s journey with dementia and of the times family members have shared their feeling of loss of a loved during their own journey’s. We all change through our own journeys of life. Your words will assist me in sharing with others at our LTC site that we are who me are always.
I enjoyed reading the article; however, I believe our loved ones remain, even though a ‘dementia’ diagnosis alters their personality. I like to believe our loved ones are ‘in’ there somewhere…and it’s important to talk about or bring in the things they loved. Familiar people visiting, pets, items from home may be of comfort to them. Remember “We know who they are.” And that’s what’s important.
This was a really good blog post – thanks for sharing this experience and insight. I have worked with Alzheimer patients and it is such a devastating disease for the patient and the family. This story gives hope and perspective to that struggle. Many thanks.