By Paul E. Boatman
The words pierced even though they were not a surprise. “Mrs. Boatman, you have persistent and pervasive memory loss of an Alzheimer’s type.”
Alzheimer’s! We did not want to hear the “A” word. Alzheimer’s has a dark, hopeless sound to it. My wife, Mary, had been exhibiting patterns of memory loss for a couple of years. The symptoms were occasionally amusing, frequently frustrating, and increasingly intrusive.
Our initial pursuit of answers was not taken seriously. “We all have forgetfulness as we age.” “Maybe some of your drugs are having adverse side-effects.” (With a history of surgeries for heart and spinal problems, and with ongoing treatment for arthritis and high blood pressure, Mary takes a number of prescription meds.)
But the first memory evaluation set this pattern apart from normal for a woman then in her mid-60s. Supervised tinkering with current prescriptions did nothing to alleviate the problem.
After a referral to a neurolopsychologist, we got the in-depth assessment that produced the diagnosis. We then entered an arena of frequent mental status evaluations and additional drugs and supplements, along with the usual encouragement to do things that stimulate mental function.
We quickly learned we were already doing most of the right things: active involvement in meaningful activities—church, service activities, mentally stimulating actions, investment in relationships, extensive travel, maintaining a healthy diet, and regular exercise. In fact, Mary was an unlikely candidate for Alzheimer’s from both genetic and history standpoints.
I rank as a more likely candidate for Alzheimer’s. Both my father and grandfather exhibited all of the classic Alzheimer’s symptoms before their respective deaths at age 91. For each, the symptoms began when they were in their 70s and the disease progressed for more than a decade.
We have also learned that a history of head injuries increases the probability of developing Alzheimer’s. My history includes a skull fracture and several concussions. I have entered a study evaluating my memory annually, granting objective assessments so that if we both develop Alzheimer’s symptoms, we can assign care-giving responsibilities appropriately.
Increasing Knowledge, Growing Epidemic
Alzheimer’s was virtually unheard of just over a generation ago. We talked of dementia, senility, and generally assumed that aging produces memory loss. But more extensive testing and evaluations began to identify this particular disease as the most frequent dementia pattern, with more than 5 million Americans now thought to have Alzheimer’s disease; 1 of 8 people over 65 have it. Various explanations are offered for the epidemic, but the most obvious reason is that increasing numbers of people are living into the age range where Alzheimer’s most frequently occurs.
There is no shame in having Alzheimer’s. It is not a disease that one catches or develops as a result of ill-advised behaviors. Rather, processes within the body bring about the development of plaque that destroys the neurons of the brain. This may go on for up to 20 years before symptoms become apparent. When one is diagnosed, a backward look often reveals cognitive impairment had been gradually changing not only memory capacity, but even mood and behavior, over several years.
The most obvious symptoms that bring victims into assessment and treatment are difficulty with short-term memory. They are unable to establish simple facts, such as “What time are we meeting our friends?” They may incessantly ask the same question, “When are we leaving?” or “Are we meeting someone?”
After early diagnosis, most victims experience a period of six to eight years of increasing effects of the disease (the range can go from three to 20 years). The latter stages of Alzheimer’s may manifest such symptoms as total disability, inability to attend to activities of daily living, inability to speak in sentences, and pervasive confusion.
Eventually, death may result from Alzheimer’s, when the decreased brain function damages vital organic functions. Most victims do not die directly from Alzheimer’s, but from complications of the brain disease.
In American society, we tend to think all diseases can be conquered. For the moment, Alzheimer’s is not even close to being defeated. The disease development may be delayed through best practices of nutrition, exercise, and behavior; still, some of the most unlikely candidates have Alzheimer’s.
The medical treatments are mainly symptomatic relief, enhancing memory function, even though the brain damage continues to spread. Assorted alternative medicine approaches are widely touted with anecdotal witness, but one by one the “miracle cures” have so far failed to pass the scrutiny of systematic scientific evaluation.
Four Years, Increasing Darkness
We are now about four years into the diagnosis. We are treating Mary aggressively under supervision of a neurologist. Mary spent nearly a year in a longitudinal drug study funded by Baxter Pharmaceuticals, only to have the study terminated because it was not resulting in desired outcomes.
The disease is advancing slowly, leading to some changes in lifestyle—seemingly endless repetition of scheduling details, me taking over more household chores, no more international travel, limitations on Mary’s driving, no solo shopping trips—changes that are inconvenient, but not arduous. These patterns are up for frequent reevaluation.
Mary and I have made some specific commitments:
• We see Alzheimer’s within the range of “for better or for worse, in sickness or in health” in our marriage vows of nearly five decades ago. Evangelist Pat Robertson once called Alzheimer’s a “form of death,” which seemed to make divorce acceptable (as reported on Good Morning America, September 15, 2011). Though he later recanted, the unfortunate remark resonated with the values of pop culture.
In our house, we hate Alzheimer’s in the same way we hate cancer, heart disease, or any other disease that insidiously saps vitality over a lengthy dying process. A love covenant is not negated by a disease.
• We try to be transparent about Alzheimer’s. While on a speaking tour, I was in a reception conversation when I heard Mary, who was in a discussion nearby, say, “Did I already ask that question?” When her repetition was affirmed, she said, “I’m sorry. I have memory loss.”
The friends politely commented that they forget things all the time.
She interrupted, “No, this is different. I’m certified.” The impact of her disclosure was the friends talked with her about the problem, instead of talking about her after she left. This transparency has facilitated an informal network that has us conversing, consulting, and commiserating with fellow strugglers at conventions and elsewhere, which often can open the door to conversation about spouses, parents, and colleagues who are exhibiting symptoms.
• We still maintain a fairly active lifestyle, with Mary participating in our church, a local women’s club, and on the volunteer team at a Christian nursing home—often visiting people in the Alzheimer’s unit. While her effectiveness and efficiency are reduced from her former level, Mary is still a person to be respectfully encountered . . . and so shall she always be.
• Independent living is still our preference. Housekeeping help and “lady sitting” are increasingly needed, but as the disease advances, her independence will decrease, and my personal flexibility of life and career will diminish.
• The Alzheimer’s issues have been the focus of frequent prayer. We would ask of God that the brain damage be reversed and Mary be able to think and remember with clarity. But we are convinced that trusting God for the ability to cope with painful circumstances involves more faith than demanding a miracle. We choose to trust that God, who has been with us in a wide variety of challenging situations over our lifetime, will continue to be with us in this extended and complicated trek.
• We will continue contact with the Alzheimer’s support systems—the medical, research, and relational groups that are also facing this darkness. We will participate in further research that may benefit future patients.
We still have some unknowns. We do not know whether Mary’s disease will slow or accelerate. We do not know when it will change from annoying and inconvenient to incapacitating and disabling.
However, we do know we are entering a realm of increasing darkness, where the intellectual abilities we have enjoyed are being gradually shrouded. The future will bring increasing darkness. But nothing shall prevent us from walking as “children of light” (Ephesians 5:8).
Paul Boatman and his wife of 48 years, Mary, live in Lincoln, Illinois, where Paul serves as chaplain with Safe Haven Hospice.
My Personal Recommendations
When your spouse is suffering memory loss it will help if you remember:
• The endless repetition is not intentional, conscious, or controllable.
• A good experience adds to a couple’s treasury, even if only one partner can remember it.
• Sticky notes can be used with reckless abandon—time and date each one.
• Forgetting many things, even important things, does not mean everything will be forgotten.
• Rehearsing old memories that survive may provide access to current emotions.
• Scolding for decreased mental function is never helpful.
• Isolating your spouse to avoid embarrassment may save your embarrassment, but it will not help your partner.
• Covering up or denying Alzheimer’s symptoms intensifies the problem.
• Friends cannot help with a problem they do not know about.
• It is always right to love your spouse.