My Mother's Keeper

Life in the Alzheimer's Ward

A flicker of anxiety arises as I pass through the locked doors to visit the Alzheimer’s residence of my ninety-three-year-old stepmother. Who is mentally and spiritually prepared to cope with demented old age? Not I. I am as addicted as any other American to possessing the freedom to pursue highly stimulating work and leisure. To be old, fragile, and dependent is bad enough, but to be demented is the most dreaded of fates.

My stepmother, Virginia, who until recently was extremely self-sufficient, is now afflicted with moderate Alzheimer’s disease. She resides in a well-designed and well-run facility that predictably charges a lot for its high quality of care. Luckily, money is not a problem because of Virginia’s lifelong thrift and shrewd investment of her widow’s pensions.

The real problem facing me as her executor was making the awful decision to move her to a locked facility against her stated wishes. For twenty years, she had happily resided in her apartment in a good retirement complex. But gradually it became apparent that she was becoming confused and disoriented. When she wandered away and got lost in the shopping center across the highway, I knew that the time had come to move her to the newly built residence for the “memory impaired.” Now at least she is safe and has her medical and nutritional needs monitored by an attentive staff.

My sociable Southern stepmother, appropriately nicknamed “Lady” by the family, has adjusted well and lives in a lovely private room (no locks) that is tastefully decorated with a few remnants of her possessions. Every day she is helped to dress in her own clothes and jewelry, and is vigorously encouraged to participate in a full schedule of activities. The weeks are marked by rounds of holiday celebrations, art and cooking projects, beauty-parlor visits, exercise classes (seated), current-events time, bingo games, balloon play, musical entertainments, church services, and lots and lots of hours spent in front of the giant TV in the solarium. Families and guests are always welcome.

Yet my stepmother and many of her fellow residents can still suffer. All of the physical discomforts, deformities, and disabilities of old age are present and made worse by mental disabilities. Lady finds it painfully arduous to get up, to be dressed, to go to the bathroom (with Depends), to use her walker to reach the attractive dining room (with bibs), and then to move on to her seat in the rocking chairs of the solarium. Eating her meals and the frequent snacks remain a pleasure for her; she does not have to be coaxed to eat, or to be fed, as some are.

When families share mealtimes they can find it stressful. Table conversation is all but impossible when handicapped by impaired memory, thought, and language. I tend to overcompensate by brightly chatting up a storm to elicit smiles from our table companions. All in all, it takes a great deal of effort on the part of visitors and the staff to maintain a normal-as-possible social environment. The common goal is to keep everyone as socially engaged as possible so that they do not slump down into withdrawn stupor or constant sleep. Granted, there are a few agitated residents pacing through the halls, past the tropical fish tank, and around the leafy courtyards. And occasionally, volatile outbursts occur. But just as quickly such interruptions subside into the general impassivity. The caretaking attendants, mostly young immigrants and minorities, have their hands full gently cajoling their charges and leading them by the hand to their next appointed activities.

Mental confusion and lack of contact with reality can produce its own peculiar kinds of pain. Lady, for instance, has asked me in sorrowful tones why my father does not come to visit her. I try to reassure her by saying that Sid would come if he could, “but Mommy, you have to remember that Daddy died in 1958.” Oddly enough, she never seems to mention Russell, her wealthy second husband, who has also been dead for decades.

Lately, though, Virginia has been troubled by recurring thoughts that her Momma and Papa are now dead and have left her alone as “an orphan.” Similar feelings of abandonment are expressed by other residents. Many, like Lady, have outlived or forgotten their old friends and any remaining kinfolk. Thank goodness Mommy still remembers that I am her daughter and introduces me as such to one and all.

She expresses affection and gratitude to me, and understands that I love her too and will see to her care. Unfortunately, I live five states away and do not visit nearly enough for her happiness (or my conscience). So now I have hired a companion who visits twice a week. Expensive, but it is her money and cannot be spent in a better way.

It can be heartrending to hear a resident cry or moan for someone they miss (“Maria, Maria, where are you?”). Maria may or may not be alive, but will surely never come again. Frequent pleas are heard to be “taken home,” whether or not home still exists. Those who can still converse (the so-called high-functioning group) can be heard asking whether another resident has a car, and if so, would they drive them home. Others may talk of their plans to move on to some other living arrangement.

The most confused residents, who have all but lost their ability to speak, can seem more or less oblivious to their plight, but those who still attempt to communicate often show frustration when they cannot remember a word, or a fact, or a phrase they need to express themselves. I am grateful that Lady can still converse graciously—in between dropping off into catnaps—and is able to respond positively to people and to her environment, especially to the beauty of the flowers I send. She remains recognizable as herself.

Ingrained social manners and habits of dress and deportment appear to be some of the last things to go. Also, there can appear an endearing flash of lucidity or a kind expression of concern for another that brightens up the group scene. These glimpses of personal style and agency make one long to know what these individuals were like before falling prey to brain damage. Were the gentle sweethearts always agreeably charming and the irritable complainers always grumpy? Human beings are more than the sum of their parts, or their brain functions, so no one knows how much of behavior is caused by physical impairments or disease.

What is not in doubt, though, is that those who are trapped in the endgame of Alzheimer’s disease face a relentless progression toward disability and death. Regular visitors observe the deterioration of individuals and note the absence of those who have disappeared into nursing homes for the bedridden or died after a trip to the emergency room. Each time I get a call that Lady has been taken to the emergency room, I tremble in fear that she will not come back.

Today, some 4.5 million men and women are engaged in their own cruel battles with Alzheimer’s disease. Their families are also drafted into the struggle, to a greater or lesser degree. Full-time home care imposes crushing burdens on caretakers, who rarely receive adequate community support. Affordable nursing facilities are often dreadful or nonexistent. A huge public-health crisis already exists in the treatment of our rapidly aging population, and it will only deepen. As there is yet no cure and there are no certain preventive measures, it is estimated that by 2050 there will be 16 million cases of Alzheimer’s.

To meet the practical, financial, and health-care needs of the growing population of the cognitively impaired aged will be a formidable task. Solutions will require social and political changes of great magnitude. To devise and mobilize needed health-care reforms is going to take expertise, political skill, and leadership well beyond the ability of most of us. In the interim, those who have experience with the epidemic can offer whatever wisdom we can garner to prepare others to cope and to survive spiritually and psychologically.

Unfortunately, too many traditionally effective strategies for dealing with tragic suffering do not work when the affliction involves mental impairment. Stoic detachment, for instance, can be exercised only by those with highly cultivated powers of abstract reasoning. Mindfulness and other spiritual-meditative strategies for surmounting suffering require disciplined capacities for concentrating and focusing the mind. Other psychological therapies for dealing with loss and suffering in old age depend on an individual’s retention of cognitive skills, especially memory. The elderly have been encouraged to find recompense for present losses by remembering their past lives. By reminiscence and the savoring of past achievements and relationships, individuals may be helped to deal with their present difficulties. Writing autobiographical journals or recording oral histories are examples of such therapeutic strategies.

But what can be savored of one’s past when brain damage causes amnesia and confines consciousness to the immediacy of the present tense? When limited to concrete thinking, persons can hardly engage in complex cognitive therapies that depend on high levels of mental flexibility and imagination. Therapeutic efforts to “cognitively reframe” a problematic situation or to discover a new self-reflective understanding can be too difficult a task. To be able to envision alternatives or to take different points of view demands a normally functioning adult brain.

Losing track of time past also curtails the sense of time future and diminishes the ability to hope. Christian hope, for example, depends on imaginatively remembering the promises of Christ and trusting that a future life with God will come. Devout believers who can consciously envision the presence of Christ and their future life with God gain strength to endure the sufferings of the present. The pain and suffering of many have been made meaningful by the intentional act of offering them up to God as part of Christ’s great work of renewing creation. But this bracing and comforting Christian belief may be too complicated to be grasped by fading mental powers. While Lady remembers and enjoys singing the familiar Protestant hymns of her youth, I am afraid that the meaningful content of the Scriptures is now beyond her ken. Does this then mean that the gospel can no longer be delivered to the mentally afflicted?

No, thanks be to God, our Mother and Creator. The love of Christ can be communicated through myriad paths. Human beings have many resources to call on besides the marvels of self-conscious reasoning and the power of abstraction. New studies, for instance, have found that infants come equipped with innate nonverbal abilities that make it possible for them to communicate with others in intuitive preverbal ways. Evolution has provided the promising primate with what has been called the “adaptive unconscious,” automatic nonverbal mental operations that ensure human survival and contribute to human flourishing.

In the last decades, neuroscientists have found that human brains have “mirror neurons” that fire in imitation of another individual’s observed behavior. Through these responses, humans directly share another’s experiences. To feel empathy and to experience intersubjective states produce the “shared interpersonal space” particular to human beings. And this intuitive emotional communication operates so instantly that the resulting emotions have been described as “contagious.”

Caretakers of the mentally impaired have a special role. Their ability to communicate empathy and sympathy through facial expressions, gentle touch, and soothing sound is now corroborated by neuroscientific research. As infants respond to their mothers, so human beings with minimal conscious awareness can react to positive emotions and to pleasurable sensual stimulation. With wholehearted, sensitive, and tender mothering care, God’s love can penetrate the mist and fog of mental confusion.

Beneficent care for those with Alzheimer’s aims at maintaining the mental and social powers that still exist by providing an environment filled with beauty, color, warmth, joy, laughter, and music. Christ’s command to love one another as God loves us can be put into practice by imitating the God who gives gifts beyond words.

Those who love others will seek to spend real time with them. Long hours “on the other side” of the locked doors among those suffering dementia can test one’s spiritual mettle. How well can I slow down, and walk the walk-at the maddening snail’s pace required? To patiently adapt to the passivity of the low-key environment can be exhausting and cause empathy fatigue. I find the tedium of TV to be grim (even while doing crossword puzzles on the sly when Lady drops off to sleep), but for some reason, participating in the much-enjoyed Bingo games is what drives me wild with boredom. (Let me out of here!) By contrast, good times can be had by all when musical sing-alongs are on the schedule. And the very best moments come when the boyish activities director leads the group in batting around giant balloons to the blaring accompaniment of his favorite rock ‘n’ roll tapes. Residents and visitors alike seem to get caught up in the spontaneous spirit of play, and the otherwise rarely heard sound of laughter rings out. Oh yes, when we can no longer read, write, or think high-level thoughts, we can still make a joyful noise together before the Lord. As the lovely old English ballad goes, “Love will find out a way.”

Published in the 2006-11-17 issue: 

Sidney Callahan is a psychologist and the author of Created for Joy: A Christian View of Suffering.

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