Ministering to trapped souls
Alzheimer's patients have spiritual needs - and so do their caregivers and families
By John Sniffen
Max was a member of America’s “Greatest Generation.” A young adult during the Great Depression, he served in the Army in World War II and raised a family in the prosperous times that followed.
He joined a Presbyterian congregation, became an elder, helped start a new church and taught a popular adult Sunday school class. He participated in the wider church, too, culminating in his election in 1971 as a General Assembly commissioner.
Nearly 20 years of retirement followed, in which Max was blessed by good health and participation in a smaller church in a rural town where he moved. But in his late 80s his life began to change. His wife, Helen, suffered a severe stroke and had to enter nursing care. His family noted that Max was having problems too. It wasn’t known then, but he had Alzheimer’s disease.
Forced to move into assisted and then nursing care near family — but three hours from his church home — Max lost contact with the spiritual community that he knew, and that knew him.
Max’s story is unfortunately common. Five million Americans now suffer from the progressive, irreversible neurological disorder known as Alzheimer’s disease, and experts estimate that the figure will grow to 7.7 million by 2030. Most victims are older than 65, but the disease can strike in the 40s and 50s.
Clearly there is a need for the church to reach out to the growing number of long-time members who are, as one veteran of older adult ministry puts it, threatened with the loss of their “religious rights.”
Richard L. Morgan, a retired Presbyterian minister and author of 11 books on aging and spirituality, says, “Alzheimer’s takes away the mind, and sometimes the physical ability, but it cannot take away the heart or the soul. These realities do last forever. Families, caregivers and congregations should never forget this. It is our responsibility to reach those souls in new and creative ways beyond the traditional rituals.”
God’s love endures
How do we minister to the spiritual needs of people suffering from Alzheimer’s disease?
The answer is simple, as in keep it simple and familiar.
David Wentroble, chaplain at the Peabody Retirement Community in North Manchester, Ind., says chapel services should be short, 20 to 30 minutes. Songs learned in youth, such as “Jesus Loves Me” and “He’s Got the Whole World in His Hands” work best.
Frank Covington, pastor of First Presbyterian Church in Auburn, Ala., agrees. “Music is very effective. It reaches us in ways that the spoken word cannot.” He relates how one woman who had not spoken a word in six months joined in when those around her started singing “Silent Night.”
Music played an important role in the care of Anna Bridgman’s mother, who died from Alzheimer’s in February. “The palliative care team at Pitt County Memorial Hospital saw that the atmosphere in mother’s room was less tense when we played certain types of music,” says Bridgman, a student at Union-PSCE in Richmond, Va.
The positive effect of music goes beyond just a patient’s sense of hearing, says Pat Gleich, associate for national health ministries in the Presbyterian Church (U.S.A.)’s Relief and Development program area. “It’s multi-sensory. At a subconscious level it reaches and stimulates them. It’s almost physiological.”
Likewise, the short prayers and Scripture readings patients recited regularly through life — such as the Lord’s Prayer — elicit a response from patients who say or remember little else.
“I was surprised,” says Wentroble, a Presbyterian minister who intentionally left the pastorate to be a retirement community chaplain. “People retain the very familiar phrases they have learned since youth. Most of those I work with are lifetime church members, so I try to tap into those memories.
“My hope is that through repetition — the memories of a warm church life, what happened when they were kids, will help them find that God’s love is still within them,” he says.
Families face a daunting task
Bringing comfort to caregivers and families of Alzheimer’s patients is also important. “The disease is usually much harder on the family than it is on the patient,” says Wentroble. “Family members tend to dump a lot of guilt upon themselves.”
If the patient is elderly and is being cared for by a spouse or partner, chances are the caregiver is also an older adult, with limited physical and mental energy to bring to this daunting task.
When care of an Alzheimer’s patient falls to an adult child of the patient, there may be numerous issues to resolve as child and parent reverse roles, and siblings discuss their parent’s care. If family members did not get along well before Alzheimer’s, those relationships are not likely to improve under the stresses that follow.
Some congregations provide support groups for the caregivers. Others arrange for parish nurses to work with families of Alzheimer’s patients as part of their responsibilities.
For example, Janet Widell, the parish nurse at First Presbyterian Church in Auburn, Ala., provides numerous services to caregivers. She helps them understand the progression of the disease, refers both patients and caregivers to health providers as needed, and helps them find care facilities when home care is no longer an option.
She even gathers information to provide to police, in the event that the patient, as may happen with Alzheimer’s sufferers, wanders away from home and gets lost.
Widell also acts as communicator. She sends emails to other family members who live out of town, keeping them abreast of the patient’s activities and condition, making them aware of concerns they need to address. And she lets the church staff know about the patients’ and caregivers’ spiritual needs.
Widell sees herself as the congregation’s representative to the patient and family but acknowledges that there comes a point where it’s time to call in a minister.
“I’m not good at praying out loud,” she says. “We have a wonderful group of ministers” who do that. One of those she turns to is First Presbyterian’s pastor, Frank Covington.
“I give caregivers a chance to talk about their frustrations, their distress and their anger,” says Covington, who lost his father to Alzheimer’s. “Then I spend time in prayer with them. Whenever we have communion at church, I take the sacraments to both patients and caregivers.”
The time to care is now
With the median age in the Presbyterian Church (U.S.A.) approaching 60, half of church members are in an age bracket in which the onset of dementia affects about 3 to 4 percent of the population. By age 85, one out of three people show signs of dementia, says Pat Gleich. Almost 10 percent of PCUSA members are 85 and older.
Among the oldest Presbyterians, increasing numbers are women who have outlived spouses and partners. Half of women over 70 live alone, reinforcing the need to have support services in place, says Gleich. In our mobile society, children often move from their hometowns and are not there to provide assistance to parents who have become frail or dependent.
Further complicating the situation, those over 65 are part of a generation that takes pride in self-reliance — “It’s difficult for them to admit they need support,” Gleich observes. Even if a congregation has a support program, individuals often will not ask for help because they think it is an admission of failure.
A successful congregational support program must be easy to access and should provide support for a wide variety of needs, not just for a target group such as people with Alzheimer’s, says Gleich. “After a person approaches the support team and says he or she needs help, then the team can focus on particular needs.”
Congregations that encourage Alzheimer’s patients to take part in corporate worship can provide a welcoming atmosphere by educating the congregation about the disease. “By letting the congregation know what they might expect — for instance that it is common for statements to be made out of context and possibly aloud, if and when this occurs, the service and atmosphere of worship are not disrupted,” says Gleich.
‘I still see her soul’
Alzheimer’s kills twice: first the mind, then the body. Finding a positive spiritual approach to confront it is hard.
It is easier just to avoid contact with Alzheimer’s patients, says Richard Morgan, who is now writing about his own entry into the retirement living system and serving as a chaplain to Alzheimer’s patients in Pennsylvania.
“Pastors and priests rarely visit these people, sometimes showing up only as they are dying or after they have died,” he says. “There is a real discomfort among clergy with visiting persons suffering from cognitive defects.
“One pastor told me, ‘Why are you wasting your time with those people? They are out of it. They will never remember your name, and they will forget in 10 minutes you ever came to see them.’”
A deeper, more serious issue, says Morgan, is that “the religious community, through its clergy and congregations, buys into the societal view that those who are cognitively impaired are less than human. Yet if ever we should be a victim of this disease, we hope the community will not abandon us, but try and keep us connected to our faith communities.”
The film Quick Brown Fox by Presbyterian elder Ann Hedreen of Seattle, Wash., chronicles her mother’s battle with Alzheimer’s. Toward the end of the film Hedreen’s daughter talks about how hard it is to watch her grandmother’s relentless decline.
“When I think of people dying, their body stays in the ground and their soul goes to heaven,” she says. “But for Grandma, to think that her soul is still here on earth, trapped in her body, is just terrible. And so, in some ways I like to think that her soul already is in heaven. It would be a nice thing to believe.
“But then again I still see her soul when we’re with her. I can still see the person she is coming through sometimes. How can we feel compassion and love if her soul isn’t still there?”
John Sniffen is associate editor of Presbyterians Today. His father, Max Sniffen, died Jan. 1, 2004, from Alzheimer’s. |
