Writing a New Story About Dementia

On Halloween, I took Mama to HUBBUB, which was participating in the downtown Centralia merchants’ event, to pass out candy to dozens of princesses and superheroes. A few days later Mama sat at the dining room table and stamped postcards for the store’s anniversary celebration, and this week she folded newsletters for my work. Is she efficient? No, she folded a couple dozen newsletters while I folded and labeled the other 400. Is she skillful? No, sometimes the stamps were not optimally placed. Is it important work? Without a doubt.

Several years ago one of my jobs was collecting data for early childhood education research. I traveled around the North Carolina Triangle area visiting preschool classrooms with my clipboard and data forms. One classroom I observed was on the campus of the most beautiful progressive care facility I have ever seen. It was in the woods, each of several buildings connected by walkways through glass-enclosed bridges with railings. It was like being outdoors, but safe, dry, and accessible. I wanted to move right in. One of the buildings was the childcare center. They had a “grandparent program” in which residents spent time in the classroom. Some of them interacted with the children, some were just there. Imagine how important their presence was to both the children and the elders. At the very least, they normalized old age—or would that be “at the very most”?

For too long the dementia story we’ve been told is one of shame, decline, isolation, loss of meaning, and loss of identity. That old dementia story must be rewritten, soon. Baby boomers filled hospital nurseries between 1947 and 1966. The first of them are 66 this year. For the next 20 years we are going to begin to fill nursing homes, retirement communities, Alzheimer’s units, family care centers, and progressive care facilities. And we are too smart, and we have done too much, to be put out to pasture (or worse, locked in the barn); even if we won’t be the people we used to be.

I read several thought-provoking blogs about aging in America. Among the most helpful are the articles written by people with early onset dementia who are courageous enough to put their experiences out there for us to read. The author of one of them, “Watching the Lights Go Out,” recently mused on why his blog has been received with such gratitude. He concludes that it is because as he speaks honestly, others are encouraged to do likewise. “Isolation,” he says, “is a source of great pain for both the caregiver and the person who is cognitively impaired.” He compares the release from silence to Alcoholics Anonymous.

I suppose that is why I write about my experiences, too: to feel less isolated. On this week before Thanksgiving, I am grateful for those of you who listen to my whining and my musing without judgement. Many people—family caregivers—have responded that they are grateful for “permission” to come out of the closet into which we have put our elders, and thereby those of us who care for them.

Another blog is part of the “ChangingAging: Exploring Life Beyond Adulthood” website. One author writes: “According to [the old] story, a person living with dementia loses the ability to connect, communicate, create, contribute or care for themselves, and therefore wastes away to a ‘death-within-life’ existence. But there’s a new dementia story being told, and it’s being told by people like Roger living with dementia. The last time I heard those statistics about the increase in Alzheimer’s Disease, I was in a meeting with Roger. He turned to a friend also living with early stage memory loss, raised his hand for a high five, and exclaimed: ‘Hey, we’re on the rise!’ This spirit of embrace, this spirit of optimism, reflects the new dementia story – a story of hope, joy and meaning.”

For Roger, who attends the newly forming Alzheimer’s Cafés throughout Seattle, a phenomenon popping up in cities nationwide, dementia has meant new connections and new forms of communication. “I would not choose to go back to where I came from, prior to my condition. I don’t mind that I was given this lot in life. I have no regrets. I don’t have any resistance to what may come in the future. It will be what it will be.” The author continues, “Yes, it’s just one story, one way to tell the story, but it’s a refreshing story, one powerful enough to overcome the old dementia story that has been crushing our communities with fear and shame. The new dementia story is not about shame or fear, but boldness and confidence in identity.”

These stories, these blogs, are not written by the elderly; and the struggles with dementia—like Mama’s—of the old-old, are complicated by the loss of physical abilities. But retirement communities, as alternatives to nursing homes, were not created by or initially populated by the old-old either; they are here because of those who were courageous and forward-thinking enough to admit that one day they would be old and the story needed to be changed. And so they changed it.

Mama has no compunction about telling everyone, and telling them often, that she can’t see. I have puzzled over her need to continually verbalize that; and I don’t have the answer, though I have a list of theories all of which probably contain a seed of truth. But she very rarely admits, even to herself, that she has forgotten something or misremembered, or that there is even a possibility that she has. If her memory is unclear, she makes up the “facts.” I believe, at least in some cases, she does know she is foggy about reality; but she doesn’t want it to be so, she doesn’t want to ask for help, and perhaps she feels shame. Vision and hearing impairments are physical and she can’t help them or deny them. It is her long-held belief that brain and emotional impairments are somehow preventable and if they can’t be treated—and she believes they cannot—you just live quietly in denial.

“People with memory problems should be integrated into their communities as much as possible, not separated from them because they suffer from a ‘disease.’ There are plenty of successful examples of how this can be done—like the Intergenerational Schools in which people with ‘dementia’ volunteer. A few years ago, the school’s volunteer of the year award was given to someone who couldn’t remember that she came to the school each week—but why should that matter? In the moment of her relationship with the child, she was very much present” (Peter J. Whitehouse, ChangingAging contributor). It is the blog-writers and people in Alzheimer’s cafés that will begin to change the stigma—people talking to people. And it is the children at the childcare center in the retirement community and those in the Intergenerational Schools who will grow up accepting who their elders are right then, who will change the world. Perhaps it will be they who even stop referring to the effects of aging as a disease.

It is a hard road for us family caregivers, who knew our loved ones as they were and are possibly even more resistant to our mother’s or our father’s or our spouse’s new identity than they are. We want to hold them to their old selves for ourselves. It’s time to release them to move on.