Our loved ones have delusions, but caregivers have some too. It’s possible that we need them to keep ourselves afloat.
When I began to take care of my mom, I started a careful record of her symptoms and recorded changes in her cognitive skills. Reading over my notes from a few years back, I see now how determined I was to focus on what she could still manage while minimizing what she lost. Part of me was unwilling to believe that the disease would progress. Another part was determined to use every avenue of health maintenance to keep her symptoms at bay. We tried chelations, nutritional supplements, exercise, love…. The illusion that I could keep her stable was like some daily vitamin I took to fuel my caregiver routine.
Now I feel a strange nostalgia reading over my old notes. They describe days when Mom could still make her breakfast or put on shoes. It seems like forever since she could cut her own food, but the pages remind me that there was a time when handling a knife was still within her repertoire. I desperately wanted to help her hold onto those skills. The crazy notion that I could do it kept me going.
My responsibilities have changed since then. Now my sister is doing more direct care for mom. This shift has given me a chance to reflect on the ways that caregiving has changed my life. As I observe my sister, I see that she’s doing exactly what I did: digging her feet into the sand, determined to keep the tide from sweeping good moments away. I don’t think this kind of perseverance is just some family trait. I believe it’s a quality caregivers need in order to survive. The caregiver job description might read something like: Must be diligent, a bit delusional, and able to stand upright as the hurricane blows around you.
The app buttons on my friend’s new Smart phone make me feel dumb. I don’t have time to figure out these complex digital toys. But I do cheer for scientific advances that might lead to an effective dementia treatment.
The current drugs have not brought great results for people with full-blown cases of the disease. My mom has tried several of them but nothing made much of a difference. Although I would love to learn that they’ve invented something to reduce her suffering, scientists now believe that it may be more important to find a treatment that delays the onset of the disease.
Prevention is critical national concern because the number of dementia cases is growing at a phenomenal rate. The U.S. baby boomer population now totals about 70 million people. Using this number as a baseline, Dr. John Trojanowski Res of the University of Pennsylvania estimates that the incidence of Alzheimer’s will double almost every five years, until more than 35 million boomers have dementia. If you are caring for someone with this disease, you’ve probably done some math to calculate the cost of care for your loved one. Multiply your family’s care costs by 35 million and you’ll end up with more zeroes than toes.
Though it’s hard to witness the struggles of our loved ones, few of us would want to live in a world where dementia care would absorb such a huge pool of resources. To address the problem, scientists are using the tools of bio-chemistry, genetics, and neuropathology to learn how the disease develops and try to stall its advance. As Trojanowski noted in a Pennsylvania Gazette interview with Samuel Hughes, if you could delay the onset of Alzheimer’s for five years, many potential victims of the disease might pass away from other causes, reducing the enormous cost of dementia care by half. He notes that “Half of $3 trillion is certainly a lot of money, but it’s far less than $3 trillion.”
While we invest our daily energy into easing our loved ones’ pain, there are some things we can do as families to contribute to the progress of research. There are 29 Alzheimer’s Research Centers across the U.S. Many of them are collecting case data in order to better understand the genetic basis of the disease. If you live near one of these centers, you may want to contact them to add your family’s information to their data base. The more data they have about dementia cases, the more likely they are to discover effective treatments. Remember when cancer was a word you only whispered? Today people live to tell their grandchildren about the joys of survival. What kinds of stories will we be sharing with the children of 2050?