In a recent Saturday morning in Richmond, 15 strangers gathered in a donated basement room. At the time, the group, like the patients and caregivers they represented, was invisible to the outside world. But all of them had earned their places at the table. A week later, in a larger and more noticeable gathering, more than 300 persons walked to raise funds for research. Alzheimer’s and related disorders brought them all together.
Had each Alzheimer’s patient in the Greater Richmond area been able to attend and thus been visible, 20,000 people would have gathered for the Memory Walk. And if just one caregiver had been there representing the patient, 40,000 people would have congregated. If every memory-impaired person in the state had been represented, 100,000 persons would have streamed to the walk sites. If just one caregiver for each of them had also come, the 200,000 Virginians most directly affected by dementia would be visible for the first time.
Dementia is a serious and pervasive health problem. And as baby boomers age, we can expect the number of memory-impaired persons to increase from the current 4 million in the country to as many as 9 million in 30 years.
These are big numbers and this is a big problem. Dementia in any of its forms is a long and lonely sentence for the patient and for his caregivers. I know; I’m living it.
It sneaks up on you, appearing first as vague and inconsistent changes and worries. While the numbers are large, they imply a false fellowship. The fact is that these cases happen in isolation to one family at a time. We do not have 100,000 dementia patients in Virginia; we have one patient and one family 100,000 times over.
When memory impairment begins, a vibrant and active person begins to spin and wobble like a top. The days grow dizzy, brightly painted lines blur into each other, and lives no longer pivot on a now faltering point. Ordinary and traditional habits give way to senseless actions like dressing in four pairs of pants or forgetting the way home.
Over time, it is not unusual for memory-impaired persons to be forgotten in their communities, even though 70 percent of them are cared for at home.
Out of sight, out of mind seems to be the rule. Over a period of years, the memory impaired and their caregivers become invisible. It happened to my mother. For 50 years, she managed a profession, a home, children, family and a farm and still gave her time and talents to the institutions in her community. Once she became ill, it too soon felt as if she had lost her place or been forgotten.
If it is a parent who falls ill and care falls to adult children, lifetime roles are reversed. Even though everything about the parent is changing, it seems near impossible for the memory impaired to let go of their customary ways and receive the help that they need from their adult children. We found ourselves in an untenable situation in our mother’s illness; as her children, we saw many ways to help, but she didn’t want any of them.
At other times, the illness seems to be contagious and caregivers can feel forgetful, confused and bewildered themselves. Combined with the fatigue that comes with the territory, it is not surprising that they sometimes believe that “the same thing is happening to me.”
The story of dementia is ultimately the story of loss, great loss, for patient, family, friend and community. Riding around the Northern Neck countryside one day six years ago, my mother spoke into the silence around the disease. “It’s been a sad year,” she told me. “I feel like I’ve lost so much.” She spoke the truth, and in those simple words told the story of dementia, loss and sadness.
But those of us who see it and live it daily know we can’t stop here. In the midst of the new war, we must not forget the sick among us who are suffering from life’s worst chronic diseases. Among them dementia is a disease for which there is no cure, and, indeed, very little help with symptoms.
We must continue to fund the science that promises help. We can’t let these people, patients and families, be forgotten. They need us to acknowledge them and to support them. By walking together in the light, we can find strength for the ordeal, hope for the helpless, and a clearer future for us all.
Nancy Moore is a Richmond writer. Her book, “Living Every Minute,” is written to honor her mother and to describe the ordeal of memory-impairment diseases.
Opinions expressed on the Back Page are those of the writer and not necessarily those of Style Weekly.
