I am a 73-year-old woman: a wife, a grandmother, a retired clinical social worker, and educator. Like many of my newfound comrades who have Alzheimer’s, this chapter of my life “officially” began with my diagnosis one year ago.
But as I say, this is just one chapter in a life that began many chapters ago. I grew up in rural southwest Virginia, in a town of 900 residents and no stoplights. After graduating from The College of William and Mary, I decided to head north for bigger adventures. A friend and I joined VISTA (Volunteers in Service to America) and were assigned to a city prison in New York—the transition from my hometown was quite dramatic! After my one-year stint in VISTA, I married my college sweetheart and we moved to Boston, MA, so I could enroll in the Graduate School of Social Work at Boston University.
Upon graduation, I entered a rich and satisfying new chapter of my life. While living in Cambridge, I worked in the Department of Developmental and Behavioral Pediatrics at Boston Medical Center for 22 years and my husband and I created a family with two beautiful daughters. I founded and directed an early childhood outpatient mental health program (unique for its time) for young children affected by violence and trauma. I went on to write a book, Children Who See Too Much (Groves, 2003) about what I had learned, and taught courses on early childhood trauma and child advocacy at the Harvard Graduate School of Education for nearly 10 years.
However, as my teaching career continued, I became increasingly aware of my decreased abilities to lecture and to respond flexibly to student's questions or comments. I am not sure my students were aware of such possible shortcomings, but in 2018 I decided that it was time for me to retire and find out what was going on.
My primary care doctor told me that my worries were common during the normal course of aging, but that she would continue to monitor my concerns. A year or so later, a nurse practitioner and close friend recommended that I get neuropsychological testing to assess my memory. The outcome of the testing was a tentative diagnosis of Alzheimer’s Disease. I remember thinking back to a book I read, Still Alice (Genova, 2014). At that time, the idea of ever having this disease was horrifying to me. And now, I had it. Six months later, I was referred to one of our local hospitals for a lumbar puncture procedure, which showed biomarkers for Alzheimer’s disease, thus confirming the diagnosis.
‘My brain doesn’t come online until mid-morning, and my emotions are affected; I am both sad and angry at times.’
The reality of this diagnosis was stunning—to me, to my husband, my wider family, my friends. Suddenly I had an answer, but also so many new questions: How would I share this news with the people in my life? How was my identity going to continue, or change? How could I plan for this? How could I find a way to live well with Alzheimer’s disease?
The first step on my path to living well was to begin to let others in; to find a way to take those I loved, and who loved me, along on my journey. Neither my husband, my family, nor my friends had noticed anything unusual about my memory and were completely unprepared for this change in our lives. We, of course, told our immediate families at the beginning of this journey, but deciding how and when to tell the broader circle of friends was a more difficult decision. What would they think? Would they see me as a different person?
Finding peace with my new identity was another challenge. The way I lived my life and saw myself was changing. However, even as I was having to let go of some of these everyday activities, I began to draw on my former experiences and skills as an advocate. My work with our local Alzheimer’s disease chapter in Massachusetts has brought home the importance of destigmatizing the disease. I have become active with our local Alzheimer’s Association as a participant in a support group and on the local board. I have also been elected as an advisor for the national Alzheimer’s Association. The Association's scope of services is comprehensive: personal consultation with staff; advocacy education for health providers, legislators and others; and fundraising prowess.
Living with Alzheimer’s means my everyday life is slowly changing. Sometimes, I can’t remember where I put the TV remote; I ask my husband the same question more than once, I am confused with calendars and appointments. I’m in a fog when I wake up, and my brain doesn’t come online until mid-morning, and my emotions are affected; I am both sad and angry at times.
To stay on track, I make lists of what I need to do tomorrow and what I have done today. To steady my emotions, I keep a copy of the Serenity Prayer on my desk: “Grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.” And to alleviate the stress of not knowing exactly what the future holds, my husband and I have begun to talk about what type of help is available and preferable in our community.
Despite the challenges of this disease, my overall assessment (and blessing) is that I am able to live well by taking stock of all the things in my life that Alzheimer’s has not yet robbed me of: I have a wonderful support community. I walk every day. I can still follow recipes and I love to cook. My husband has been strong and steady, and he is always there for me. My children and grandchildren live nearby and whenever I am despondent, my grandchildren cheer me up. They live in the moment, and they don’t care if “Mimi” forgets a word or two. In summary, for now, I feel as though I am living well with Alzheimer’s.
I am a 73-year-old woman: a wife, a grandmother, a retired clinical social worker, and educator. Like many of my newfound comrades with Alzheimer’s, I am trying my best to live well with Alzheimer’s. It is just one part of me, and does not solely define who I am.
Tips for other Individuals trying to live well with dementia:
- My exercise goal includes walking or engaging in yoga practice every day.
- I stay closely connected with family and friends—in person, via email, or Zoom.
- I try to keep my brain engaged with reading, writing, and puzzles.
- I try to do my part in de-stigmatizing this disease as I share my life with others.
- I love to watch movies and TV programs.
- I take full advantage of the multiple resources available from the Alzheimer’s Association.
Photo credit: WINDCOLORS/Shutterstock
Genova, L. (2014). Still Alice. Pocket Books.
Groves, B. M. (2003). Children Who See Too Much: Lessons from the Child Witness to Violence Project. Beacon Press.