When my sister Edweena first began telling me stories about my mother’s increasing forgetfulness, odd behaviors, and erratic emotions, I should have recognized that something was wrong and rallied my family with a plan of assessment, action and acceptance.
After all, as the founder and CEO of a progressive community of assisted living facilities, I see spouses, siblings, sons, and daughters every day grappling with the ways in which dementia is affecting and changing their loved ones.
It turned out, though, that neither my credentials nor my experience served as an inoculation against denial in the years before my mother was finally, officially diagnosed with Alzheimer’s disease. Even when my sister whispered to me one night that our mother was having imaginary conversations with her long-dead sister and had wandered out into the middle of the street in her nightgown, I found ways to rationalize it.
Like other people noticing signs of possible dementia in their loved ones, I found myself deflecting, buying time, kicking the proverbial can down the road. The truth was, I did not want to even consider the possibility that my larger-than-life mother could be changing.
My mother, Colleen Clark, had successfully raised four children on her own and under sometimes desperate circumstances. She wasn’t perfect, but she had a feisty determination and an independent streak, and she was fiercely devoted to her family. I was my mother’s youngest child, and she loved me passionately, insisting that I could do anything I wanted, achieve any dream. “You are a big shot,” she frequently told me.
As a child, I had extreme fears that I would somehow lose her. How could I possibly accept that my mother’s Alzheimer’s diagnosis meant that she would really, finally be gone? Subtly, to be sure. Slowly. But definitively. It took me years to come to terms with that.
Ironically, Mom eventually took up residence within one of my assisted living communities. I tell about my family’s journey through Alzheimer’s disease in my book, “My Mother, My Son.” While it shares my mother’s life story and the unforgettable person she was beyond her disease, the book also makes the salient point that loving and caring for a person with Alzheimer’s is emotionally devastating—even for those who, logically at least, should know how to “do” this passage well.
The Alzheimer’s journey is one that comes with no clear map; every family has to find their unique own way. However, others who have gone before often leave signposts that can make the trip a little easier.
Here are some strategies and tips that helped my family. Perhaps they will help yours as well:
1) Watch, Observe and Journal. Behavior analysis is the only way to diagnose Alzheimer’s and to plan the best care and environment to support a person once they’ve been diagnosed. As soon as you start noticing changes in your loved one’s eating habits, breathing, weight, or behavior, jot down the date, what happened, and what’s unusual about it. These notes helped us see patterns of decline in my mother (and also improvement after she was also diagnosed with Parkinson’s disease and began treatment for it), and they provided us with markers for where she was in the progression of her Alzheimer’s.
2) Live With Them in the Disease. It doesn’t do any good to try to “correct” a person with Alzheimer’s—such when a person insists on having talked with a long-dead sibling, for example—or to try to re-orient them to their current time and place. It only agitates them and leads to distrust on their part. Accept the person’s new reality and go with it. Your willingness to abide in their world during your visits will enable the connections that do exist to come forward.
3) Create Familiarity and Comfort. Sometimes the greatest victory in caring for a person with Alzheimer’s is giving them comfort, and family and friends can do this by giving their loved one a sense of familiarity. Allow your loved one to keep items in their room that connect them with their life’s passion or their deepest childhood memories, such as books about travel, a musical instrument, or a religious artifact; add room decorations that recall great memories; or have CDs of music that reminds them of a special time or event. My mother loved Big Band music, for example, and her eyes would sparkle whenever she heard it, so we played it for her often.
4) Honor and Celebrate. You can—and should—continue celebrating birthdays and keeping family traditions, even if your loved one doesn’t always seem emotionally present. My family held small family gatherings in my mother’s room and used the occasions to reminisce about our life with Mom. These storytelling sessions not only paid tribute to her life and character, but it helped us with closure and had a healing benefit for everyone.
5) Always Remember Dignity. Even though a person with Alzheimer’s is often stuck in their own private world, disconnected in many ways from family members and friends, their humanness is ever present. Help your loved one retain their dignity by doing for them what they would want to do for themselves and in the way they would want those things done. For us, this meant making sure that my mother—always a snazzy dresser—had her hair fixed and her nails done and wore pretty clothes.
Finally, it’s important to be gentle with ourselves and with each other. Alzheimer’s is a disease that can challenge—even break—the family and friends of someone who suffers from it. It is not something you can ever be fully prepared for.
But understanding does come over time, through practical medical insights, bits of wisdom, and support mechanisms, and it is this understanding that will help improve the situation and provide comfort for you and your family as you make your way along the Alzheimer’s journey.