For most people the world over, life is more about making do than having it made. Even prosperous people end up making do—improvising their way through life—when faced with various difficulties. When you're making do and you have a child to raise, you really do need help from aunts, uncles, grandmothers, schoolteachers, pediatricians, and the rest of the proverbial village that it takes to raise a child.
It takes a village applies just as much, or more, when you have to care for a parent with Alzheimer's.
My mother was diagnosed with Alzheimer's two years ago. She is now comfortably situated in assisted living, in Columbus, Georgia, where she lived in her own house for decades and still has many friends. She's in good physical health and good spirits and her finances are in order. I devoted intense energy and numerous trips to Georgia to making this outcome happen. It also took a whole village of other people, starting with a care-giving agency's owner, the agency's skilled and compassionate care coordinator, and a wonderful care-giver; and the authors, editors and publishers of several helpful books. I had kind and invaluable help from many other experts, including the elder law attorney, the financial planner, the lady from Mom's church who works at Mom's bank, the vice president at our other bank and the financial advisers she referred me to with questions, and the tax preparers, who were an AARP volunteer last year and this year a professional bookkeeper/tax preparer who will sort through the tax ramifications of all the financial arrangements I made.
Then there are the assisted living facility's manager, director, staff, and chaplain; two Columbus Veterans Service Office counselors and one field officer of the Veteran's Administration (from which Mom now receives an Aid and Attendance Benefit to offset her medical expenses); the real estate agent who succeeded in selling Mom's house; the woman who collects used household goods that are sold in a thrift store to support a cat charity, and the young man who drove the truck—this was how we cleared away a lot of Mom's old clothing and housewares—and the local library which accepted six boxes of books for the next book sale.
Last but most important of all, there are my cousins, Mom's nephew and his wife. Because they are in the estate sale business, they really know the lay of the land for elders moving to assisted living. They moved Mom to her new efficiency apartment and fixed it up nicely for her. They give me a place to stay and loan me a car to drive and a computer to use every time I go to Columbus. More than anyone else, I could not have done what I had to do without them.
Add doctors to the village that helps adult children care for a parent with Alzheimer's. My mom receives excellent care from her internal medicine doctor, her dermatologist, and her neurologist. The neurologist has had Mom on a combination of the drugs Aricept and Namenda for a year and half. Add medical researchers to the village too! As reported in the January 2009 issue of the newsletter Mind Mood and Memory (from Massachusetts General Hospital), a recent study indicates that the combination of Aricept, or another in the same class of drugs, with the drug Namenda is best treatment yet found for Alzheimer's. One researcher is quoted as saying, "We don't yet have a cure for Alzheimer's disease, but it's no longer accurate to say we don't have a useful treatment.... All AD patients in the study became more seriously affected by the disease over time, but those who received the combination treatment declined significantly more slowly. What's more, the longer patients received the combination, the greater the effect appeared to be." The drug combination doesn't cure Alzheimer's, but it buys time. If you have a loved one with Alzheimer's, buying time is the best deal on Earth.
Over Valentine's Day I went back to Columbus to visit Mom. I brought her a red balloon and a potted fern, both of which she liked. On a crystal clear afternoon, we walked around the outside of the assisted living facility. She has the shuffling Alzheimer's gait, and we didn't go fast, but we made it around the whole place. Downhill on the main driveway, then onto the sidewalk that goes around the back beside the wide sunny patio overlooking a meandering stream. Then along the other side of the building, by two vegetable garden plots, and finally up a large flight of concrete steps. Mom kept a safe hold on the railing and motored up the steps like somebody twenty years younger. All the way, she marveled at the signs of very early spring in Georgia. The vegetable plots were fallow, the trees by the stream bare, and the lawn grass winter brown, but shrubs and trees had tight buds. Sun-yellow dandelions dotted the edges of the lawn, and tiny blue flowers were mixed in with the brown stems of grass. I'm glad that Mom can still notice these things. She looks forward to seeing the first bluebirds of the year.
In the long uneven dying that is Alzheimer's, she'll probably lose the ability to recognize bluebirds, me, or anything else. More crises and heartbreak lie ahead. But know I now something vitally important: I'm not facing Mom's condition alone.
The world tilts, as it always has, summer to winter and back toward spring. People make do as they raise a child or walk with an elder toward the end of life. And the help of a village makes all the difference in the world.