No Act of Love Is Ever Wasted: The Spirituality of Caring for Persons with Dementia

Introduction

NEEDED: LIVING WATER

Jesus, tired out by his journey, was sitting by the well. It was about noon.

A Samaritan woman came to draw water, and Jesus said to her, Give me a drink. . . . The Samaritan woman said to him, How is it that you, a Jew, ask a drink of me, a woman of Samaria? . . . Jesus answered her, If you knew the gift of God, and who it is that is saying to you, ‘Give me a drink,’ you would have asked him, and he would have given you living water. . . . Everyone who drinks of this water will be thirsty again, but those who drink of the water that I will give them will never be thirsty. The water that I will give will become in them a spring of water gushing up to eternal life.

—John 4:6-14

Jim lingered at the end of our Sunday school class. He had told me (Richard) about the stress he had undergone while caring for loved ones with dementia. We sat for over an hour, skipping the worship service, as Jim vented his feelings. Both of his parents had suffered from Alzheimer’s disease.

I lost my father after a long struggle with this disease, he said, and now Mother is in a memory impairment unit. I visit her every day, but she doesn’t know who I am. I feel like she is a ship sailing into unknown waters, just a speck on the horizon, while I am stranded on the shore. If they don’t find a cure for this disease, I hope I die before I get it.

One day a couple who live in my retirement community stopped in the hall to tell me about the strain that caring for his aged aunt has caused them. We thought all our worries were over when we came here to retire, Martha said, but caring for her has caused us so much stress. Paul remarked, It seems as if we are going and coming every day, victims of her constant complaints. They both looked old and tired beyond their years.

In 2008 the Alzheimer’s Association estimated that as many as 5.2 million people in the United States were living with Alzheimer’s disease. In 2007 nearly 10 million women and men provided 8.4 billion hours of unpaid care at home for loved ones suffering from Alzheimer’s or other dementia. Seventy percent of people with Alzheimer’s live at home, cared for by family members and friends. Experts predict that by 2010, almost half a million cases will be diagnosed each year, and one of eight baby boomers will develop this disease. If you haven’t yet been a caregiver, you likely will be one.

The number of people caring for loved ones with dementia will skyrocket in the next few years because people are living longer, and the baby boom generation is aging. The odds of developing a dementing disease double every five years beyond age sixty-five, although dementia may occur much earlier. Alzheimer’s disease is now the sixth leading cause of death in the United States, and the fifth leading cause of death for people over sixty-five. Nearly 50 percent of the population will develop a dementing disorder by age eighty-five. Geriatricians predict that if a cure is not found by 2050, as many as sixteen million Americans will have some form of dementia, with Alzheimer’s being the most prevalent.

For a long time, brain disease was a taboo subject. Families who dealt with dementia kept it within the family circle or told others that Mother has some memory problems and gets confused, or Dad has hardening of the arteries.

Regardless of whether they are cared for at home or in a memory care facility, persons with dementia become aliens to society, trapped in their own world, like the lepers of Jesus’ time. For these persons, it is literally out of sight, out of mind or out of their minds, out of our sight. Until recently, institutional care was based on a custodial mode.

A great deal of time and money has been spent to secure adequate physical care for people with a dementing illness. This has resulted in treating the biology of their disease, rather than focusing on the needs of individuals and their families. As Peter J. Whitehouse has so well stated, To bring about a new framework that can help us adapt to aging in the twenty-first century, Alzheimer’s disease has to be talked about, brought out into the open, and seen from a more enlightened perspective.¹ Such a perspective includes nourishing the spirits of those afflicted with this disease, and offering ways to have a meaningful relationship with loved ones who can no longer remember us.

Though dementia affects the mind and the body, it cannot destroy the soul. Unfortunately, our society treats persons with dementia as if they have no souls. Nothing is further from the truth. Their brains may be wasting away, but their souls are still alive. So where can persons recently diagnosed with dementia find help when they ask, What will happen to my faith when I can no longer remember? How do we respond to caregivers who ask, Why has God let this happen to us? or How can I believe in the goodness of God when I see my mom (dad) suffering from a disease that destroys their memory and the person I know? Our responses demand spiritual, not medical or scientific, answers.

Persons with dementia and caregivers need to find a source of living water lest their spirits die, parched from the ravages of the mind or from the draining burden of caregiving. In a real sense, both care receivers and caregivers are on a mutual path. We could compare them to the Samaritan woman who came to the well of Sychar in the midday heat (John 4:4-42). She went there alone at a time she thought no one else would be present. Similarly, persons with dementia are forced into noontime loneliness by their exclusion from the rest of society. Caregivers often face their struggles alone, with little or no help from others, sometimes not even from family members.

The Gospel of John records that the Samaritan woman met a stranger (Jesus) at the well. He surprised her by asking her for a drink. (We tend to forget that persons with dementia can offer us spiritual gifts from the depths of their souls, which remain intact.) Jesus turned the conversation toward the gift of living water, which he alone could give. Only this living water could satisfy the deep thirst of her soul and give strength for her hard life. Like the woman at the well, caregivers desperately need living water—spiritual help—so they can continue offering care to those they love.

Caregivers are fellow travelers with their loved ones into this unknown land that the psalmist called the land of forgetfulness (Ps. 88:12). Only God, who became incarnate in Jesus of Nazareth, can give us the kind of spiritual support we need, and as we become Christ to our loved ones, the least of these, we provide the same kind of spiritual care.

My Experience: Richard

My involvement with dementia began in the 1960s when I was a distant caregiver for my mother, who suffered from Parkinson’s dementia. Her shaking hands, expressionless face, and ability to speak only a few words still haunt me. I can identify with the struggles of distant caregivers, who must deal with a myriad of feelings when they cannot be present with their loved one. I felt guilty because my father and sister, a psychiatric nurse, bore all the burden. All I could offer were sporadic visits, calls, and letters until my mother no longer knew who I was. As she drifted into her own world of shadows, I asked how a loving God could allow this beautiful woman, who had spent her life serving her family, to suffer so. When we had to put her in a nursing home, I prayed that God would send angels to take her to heaven. She died in her sixty-sixth year, and my prayer was answered.

I did an internship as a chaplain’s assistant in what was then called a sanatorium. I visited the patients and tried to listen to their garbled language. Some of them thought I was their son. One woman insisted that Harry Truman, a former president of the United States, was her brother. She kept asking me to write him and tell him to get his sister out of this place. I refused to do so. (In retrospect, I wish I had gone along with her request and said, Tell me what it was like to be Truman’s sister when you were children, or, How often did you visit your brother in the White House? thus entering her world and forgetting mine.) One of my assignments was to hand out hymnals to the residents and then to collect them as they left worship. The same woman slammed the hymnal into my hands and said angrily, Here, chaplain, take this hymnbook and cram it! At that time, little was known about dementia. Yet I imagine most of the patients there suffered from this disease of the brain.

Later I served as a chaplain in a nursing home and then as a volunteer in two other care facilities. I learned much from those experiences. Once as I attempted a homily during a worship service, a woman in a wheelchair blurted out, This is the nearest to nothing I ever heard in my life, and promptly wheeled out of the chapel, followed by most of the residents. That soon ended my homilies for people with dementia.

As I continued a ministry there and to other nursing homes, I began to have an uneasy feeling that any communication with these people never got through to them. I remember a lady the staff called Mrs. Paper Face who roamed the halls, never spoke, and had a blank stare on her face. She was typical of most people in the nursing homes.

Around that time, my wife, Alice Ann, became the primary caregiver for her mother, who had dementia and was placed in a care facility. I wondered how Alice Ann would manage to balance the unending demands of her mother plus those of our family, and teach at a middle school. Her two brothers offered little help. That was when I had a firsthand experience of the primary caregiver, who somehow had to juggle all those demands and make it through the days and nights. All I could do was support my wife and offer a sense of humor and my presence.

Now Alice Ann and I live in a continuing care retirement community where forty residents with Alzheimer’s disease and related dementias live in comparative isolation from other residents. I feel God’s call to be their advocate and caregiver, and this calling has become a vocation within a vocation and my passion for my later years. I sense a loving acceptance and common feeling among these dear people that deeply touches me. Yet it saddens me to see them look in the mirror but see no one there, and those haunting eyes that say, Talk with me; I’m still in here.

My greatest learning has not come from textbooks or classes but from the residents themselves. They will never know my name, but they know my presence, and I see love in their eyes when I say their names and listen to them. I believe that people with dementia mirror our own lives—we sometimes feel bewildered and lost, forgetful, and incoherent. And, like these often neglected persons, we need to give and receive love.

Last year Kim Kelly, campus director, and I initiated an Alzheimer’s support group at Redstone Highlands, the retirement community where I live. Sponsored by the Alzheimer’s Association, our group meets once a month. Every month some of the caregivers return, and others begin attending. I have listened to their heart-wrenching stories of the burden they bear for their loved ones who suffer with this disease. I have preached or led seminars in many churches and community agencies. Caregivers tell me that they have found legal and medical assistance for their issues, but nowhere can they find emotional and spiritual support.

My Experience: Jane

I can’t remember a time when older adults didn’t