“It was a blow to me, personally,” says Cathleen McBride about being diagnosed two years ago as having Alzheimer’s disease. “I cried,” she adds, “but I could certainly talk about it.”
“I got up the next day and put one foot in front of the other,” explains this former member of a Catholic order of sisters. It is her way of describing how she determined to go on with her life.
Asked about her inner motivation, Cathleen responds: “My spirituality is so much a part of me that I don’t see it as a separate factor.” Having spent 18 years in the convent and serving as a missionary in the Philippines gave her the inner power to accept what has happened to her.
“The new reality becomes the norm,” adds her husband, Owen McBride. He has entered fully into the role of care partner in response to his wife’s illness. Since they share responsibility, each has come to prefer the term “care partner” rather than applying the phrase “care giver” to the healthy spouse.
It was my privilege recently to take part in a discussion with the McBrides, one other couple, and a staff member of the Alzheimer’s Association who counsels people in the early stages of the disease and their partners.
The other couple who took part in the discussion were Bernice Jones and Victor Jones. Bernice found out this past year that she has Alzheimer’s. For her, it did not come as a great surprise but she finds it a challenge “to readjust to what I can accomplish.”
She does not talk about her response to illness in explicitly spiritual terms but she clearly brings inner strength to the struggle. Bernice comes across as remarkably present to other people as she tries to cope with the problems posed by the disease.
Like Cathleen, Bernice has the support of a husband who considers himself a care partner. Victor sees the crisis as “a very refining thing” for their relationship but he also admits that it’s difficult at times.
What he finds hardest is seeing that “the skills that Bernice was so good at are eroding and so is her self esteem.” She was active in her town and it is difficult to replace the roles she had there. But Victor reminds her that she retains the role of wife and always will.
Not being able to remember things bothers Bernice. Recently, she was trying to find in memory the name of a tree outside the house. She just could not come up with it then; in the discussion she recalled that it was dogwood.
Losing the ability to write bothers her worse. Discovering herself unable to dial the correct numbers on a telephone is what first made her suspect the presence of the disease.
The opportunity to enter into this discussion served as a spiritual tonic for me. Hearing these four people talk about a deadly illness and the way they are coping with it filled me with admiration for them. Throughout, their main emphasis was that life goes on.
As Victor Jones says, “Alzheimer’s is not a sudden trap door through which people drop away.” Too many people believe that those with this disease can make no sense. He regrets that many people think this way because this stereotype keeps them from recognizing the positive elements in what is admittedly a highly undesirable experience.
Both couples modeled for me an experience of open, loving relationships that are prepared for even more difficult days ahead. They recognize that, when the disease progresses further, coping will be much harder than it is now in the early stage. To their credit, they can talk about this future.
Victor calls it “the ultimate question: will his wife go off to be cared for by someone else?” Both of them recognize that this might turn out to be better than the alternative of staying home when the disease becomes unmanageable there.
In all of this the support of professionals at the Alzheimer’s Association makes a crucial difference. For answers to questions and appropriate referrals for help, I strongly recommend calling the agency at (800) 548-2111. The couples mentioned in this column went through a series of meetings organized by the association and have found them extremely helpful.
Richard Griffin