Remembering a Loved One Lost to Alzheimer's Disease
How do you go on after the tragedy of losing someone you dearly loved? That’s a question that I keep going back to over and over again. The question remains pertinent even now, seven years after the death of my mother from Alzheimer’s disease and chronic obstructive pulmonary disease. Recently I read two pieces that highlight the conundrum that many of us face after we lose a loved one.
Let me start with the most recent one I read first – a 2014 essay entitled “The Company I Keep” that was written by Jane Gross for the New York Times website. Gross notes that her life is populated by the many ghosts of people who she has loved who are now dead. These fallen make regular appearances not only in her home but also in the conversations she has and during her nighttime dreams. And she’s happy that these ghosts – her parents, journalism colleagues, a childhood friend – still remain a regular part of her life. “The ghosts seem to outnumber the ‘real’ people, and that will only be more true as time passes, I know,” Gross writes.
I am sure that many of you who have lost loved ones to Alzheimer’s disease have experienced what Gross describes. And I sometimes wonder if I started feeling the presence of Mom’s essence while she was still physically alive, but mentally a shard of that pillar of strength that I always looked to for guidance throughout my life. Before her death and while she was in a nursing home, I can remember having vivid and important conversations with her invisible presence while driving. It felt like she was right there with me in the passenger seat, delivering sound advice in the way only she could do.
Which brings me to another important question – once a loved one is gone, how do we knit the strands of our life back together? Right before the holidays, I read Anne Lamott’s book, “Stitches: A Handbook on Meaning, Hope and Repair.” I was drawn to the book because of the author’s quote on the back cover – “Where is meaning in the meteoric passage of time, the speed in which our lives are spent? Where is meaning in the pits? In the suffering? I think these questions are worth asking.” Throughout the 96 pages, Lamott offers so, so many lessons of wisdom to help people move forward in their lives after great loss.
In reading this book, I thought often of Mom’s slow and heartbreaking decline. First, she was thrown into what would be a decade-old battle with chronic obstructive pulmonary disease. Toward the middle, there were three years spent fighting off mild cognitive impairment. Finally (and sadly), she received a diagnosis of Alzheimer’s disease in 2005 and a placement in a nursing home until her death in 2007. This period was especially difficult in our lives because, as I mentioned in the first sharepost I ever wrote for HealthCentral’s Alzheimer’s site, Mom was the main tent pole supporting our entire family. When the cracks in her health started to happen, tremors reverberated throughout the Martin “tent” and led to large rips in the fabric of the lives of each family member. Her loss has been one that has been difficult for each of us to overcome.
Perhaps because Mom used to love to sew, I was especially drawn to Lamott’s use of a quilt in symbolizing how to move forward in our lives. She suggests that for much of our early days, we each have experiences that are lovely and safe; these quilt pieces fit together neatly and cohesively and give us the narratives of our respective lives. And then the ugly patches representing more challenging times emerge that must be added to the quilt. We’re given quilt pieces that Lamott describes as “brown Hawaiian print” (which reminds me of Mom’s stubborn avoidance of seeing a doctor to find out what might be causing her memory loss), “orange Rob Roy tartan” (which describes the phone calls I’d get from my father wanting me to confront Mom about her memory loss when they still were living in West Texas and having terrible battles), and “three squares of vomitous sea-foam upholstery” (which reminds me of Mom disowning both me and my brother in two separate fits of explosive anger years apart that were caused by her disease).
To bring these disparate colors and fabrics together once they are given to you, Lamott suggests symbolically using one unifying color of embroidery thread to sew around the quilt pieces. This thread can mean regularly seeing a few trusted friends or maintaining specific daily rituals that provide solace. These experiences can help “decrease the sense of shock, mismatch and jostle that you feel,” Lamott stated.
But she also points out that while this effort is important, you don’t ever get over these towering losses. The best-selling author wisely counseled, “The good news is that if you don’t seal up your heart with caulking compound, and instead stay permeable, people stay alive inside you, and maybe outside you, too, forever.”
It sounds like Gross and Lamott have common ground. And I, for one, am thankful that they have offered these separate, but highly compatible treatises to help us see that loved ones who have left us due to Alzheimer’s and those who have permanently left us due to death can forever be with us. And I feel relief knowing that, I’m not totally crazy in talking to Mom when I’m driving and especially whenever I see a rainbow or a bed of purple irises.
Primary Sources for This Sharepost:
Gross, J. (2014). The company I keep. New York Times.
Lamott, A. (2013). Stitches. Penguin Group, USA.