By Olga Monacell
On a recent summer morning, I met with Norma Holland Mann at the iSquare coffee shop in Irondequoit. We talked about her almost 15-year engagement with the Alzheimer’s Association, Rochester and Finger Lakes Region, and her dedication to find a cure for Alzheimer’s and other dementias.
Q. Norma, earlier this year, you have assumed the role of the volunteer planning committee chair for The Walk to End Alzheimer’s in Canandaigua. Tell us more about your connection to the Alzheimer’s Association.
A. Early in my career at 13WHAM, I joined the board of the Alzheimer’s Association, Rochester and Finger Lakes Region Chapter. As a journalist, I was familiar with the projection that, as the size and proportion of U.S. population age 65 and older continue to increase, the number of Americans with Alzheimer’s and other dementias would escalate rapidly.
However, on a personal level, I didn’t know much about Alzheimer’s or other forms of dementia. As I was learning more about the disease through my involvement with the Association, I realized that my beloved grandmother’s forgetfulness was indicative of dementia. My grandmother, Andrea Alicea Diaz, was in her mid-80s and not formally diagnosed at the time. We later learned she had vascular dementia. Grandma Andrea lived to be 91 and died in 2010.
In 2007, my father-in-law Chuck Mann, who was in his early 70s, was diagnosed with Alzheimer’s.
Q. Tell me more about your father-in-law’s diagnosis and the effect it had on your family.
A. Chuck and my mother-in-law Ruth shared the news with their seven children. The entire family rallied behind their parents. My husband Matthew and his six siblings wanted to know what to expect as their father’s disease progresses. Early on, I connected them to the Alzheimer’s Association. Chuck, Ruth and some of their children attended several workshops and conferences offered by the Rochester and Finger Lakes chapter. It was a learning experience for everyone. We learned how important for people with Alzheimer’s is to retain their dignity. We need to treat them with respect and advocate for them because they can’t advocate for themselves.
Chuck and Ruth completed an early-stage orientation series offered by the association. They both enjoyed getting to know other couples that were facing Alzheimer’s or another dementia. Chuck and Ruth wanted to do more. They started a support group for family caregivers in Wayne County.
Chuck’s disease progressed rapidly. Eventually, he had to go to a memory care unit and later to a skilled nursing facility. Fortunately, Alzheimer’s never changed his personality, even though I knew it could. This definitely was his saving grace. He remained as gentle as he used to be. Some female residents at the nursing home would mistake him for their husbands and would want to hold hands with him. It was hard for my mother-in-law to see him holding hands with other women, but she understood Alzheimer’s was invading his mind. Her faith and love for Chuck helped her accept these things.
When our oldest daughter Eliana was about two months old, we took her to visit Chuck for the first time. Although he may have not realized she was his granddaughter, he smiled happily at Eliana. My husband, who is a photographer, captured that amazing moment of joy. As a toddler, Eliana went with us to visit Papa Chuck several times. When he passed away in July 2018, my husband told her that Papa Chuck went to sleep and was not coming back. To this day, Eliana still talks about him and, every night, she prays for Grandma Ruth and Papa Chuck.
Q. When did your family begin participating in the Walk to End Alzheimer’s?
A. Our extended family began participating in the Walk to End Alzheimer’s in 2008, when Chuck was newly diagnosed. He walked with us the first few years after his diagnosis. Now, we continue to walk in his memory. We call ourselves Team MannPower. We, the Manns, believe that there will be a cure or a treatment developed within our lifetime. If we don’t have that faith, what do we have? I love the Walk. For me, it is not just walking. It is getting together with people who share the same experiences. Join our family for the Walk to End Alzheimer’s on October 5 at Granger Homestead in Canandaigua.
A version of this article was first published in the July/August issue of Rochester Woman Online.
[Editor’s note: The September, 2019 print edition of La Voz features articles and information about Alzheimer’s disease. This edition is a joint venture with the Alzheimer’s Association aimed at bringing more awareness among the Latino/Hispanic communities about the disease and its effect on people of color.]