“If he dies before me, I’ll kill him,” says Cathleen McBride jokingly about her husband Owen McBride. As a person with early stage Alzheimer’s disease, Cathleen really does need his help. They are both committed to being care partners to one another as they cope with the challenges this disease brings.
So are Bernice Jones and her husband Victor Jones. “I’ve had to work very hard at it,” says Victor of the new relationship that he has with his wife since the onset of her disease. “I tend to be a take-over person, it’s hard to be a partner,” he adds.
All four of these people have been through a four-week workshop run by Elaine Silverio, a nurse on the staff of the Alzheimer’s Association of Massachusetts. There they talked about the experience of getting this illness and together explored ways of helping one another cope with it.
The main message that comes through conversation with these couples is one that is not enough appreciated by us members of the general public, or even by many doctors and medical professionals. As Victor Jones explains it, “Alzheimer’s disease is not a sudden trapdoor through which people fall away.”
Rather, as Cathleen McBride affirms, “there is life after Alzheimer’s disease.” From this comes the importance of taking action in the face of a diagnosis confirming its presence. For my money, the best action is to call the Alzheimer’s Association, Massachusetts Chapter, where one can find all sorts of helpful responses.
This nonprofit agency, with five offices in Massachusetts and its connections with similar organizations in other states, can be reached at a 24-hour phone line: (800) 548-2111. There, skilled people like Elaine Silverio, a woman with 20 years’ experience in neurology, can refer you to doctors with special training, to individual counselors, and to one of 200 support groups.
Things are constantly changing in the treatment of Alzheimer’s, so it is important to be informed. New medications have been developed that can slow down the cognitive decline characteristic of this disease. Cholinesterase inhibitors have been found to delay such decline in 50 percent of cases, with the drug Aricept currently the most used. Other medications can be expected to hit the market soon.
When she first was diagnosed with Alzheimer’s, Cathleen McBride, a former Roman Catholic nun and missionary in the Philippines, went through a range of emotions. “It was a blow to me personally,” she says, “but I could talk about it.”
She attributes much of her rebounding to her family and home environment. “I came from an upbeat family. I’m a New Yorker, too. If you’re not upbeat in New York, you’re downtrodden,” she explains.
Her spirituality also plays a part. “It’s so much a part of me, that I don’t see it as a separate thing.” Perhaps that factor has led her to say: “I am really only beginning to enjoy the now of life, something that completely passed me by before.”
For Bernice Jones, the diagnosis did not come as a surprise, since she had been experiencing difficulty in dialing phone numbers. The hard part now, she says, is “trying to readjust to what I can accomplish.”
And that is her husband’s main concern. “I feel a great deal of sadness,” he confesses, “that the skills Bernice was so good at are eroding, and also her self-esteem.” But their relationship remains strong, perhaps stronger, so much so they can even talk about the future.
That future raises what Victor calls the ultimate question: “Will she go off to be cared for by someone else?” He admits to himself and to her that a change in her condition might make her going to a nursing home a good thing.
The occasion for my meeting these two couples is a series of “memory walks,” the first two of which takes place on September 20 in the Berkshires and Northern Quabbin Valley. Then on Sunday, September 21, there will be seven walks with the Greater Boston one beginning in Cambridge. Information about them is available at (617) 868-6718. The final walk will happen on October 4, starting in Walpole.
The motto of these days is “Taking Steps to End Alzheimer’s” and planners have developed a fight song to the tune of “On Wisconsin.” The song is called “On With Life” and is meant to express some of the spirit animating these early-stage people.
Their purpose is to promote awareness of Alzheimer’s disease, and to raise funds for the association, and for research into the causes and effective treatment of AD, with a view toward eventual development of more effective responses.
Meanwhile, everyone ought to become aware of the progress made in enabling sufferers to live with Alzheimer’s and care partners to cope with it better. With the disease’s advent, life does not come to an end. It continues and can even bring unexpected richness to human experience, as the Jones and McBride couples witness.
Richard Griffin