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With Heart, Soul and Sometimes Mind
Alzheimer’s is a terrible disease that robs a person of their memory and their life, but even while the mind loses its abilities, the spirit continues to respond.

"Never let a person make you feel guilty for your anger with God,” says a woman named Fiona, quoting from a  book she’s reading about coping with Alzheimer’s Disease. Fiona is a character in the 2007 Canadian film Away From Her

The film tells the story of Fiona and Grant, a sixty-something couple whose relationship will soon be challenged by Fiona’s impending and seemingly early-onset dementia, probably Alzheimer’s disease.  It’s something that’s unfortunately becoming more common.  Demographers say with our aging population, accelerated by the famous baby boom, more people than normal are heading for retirement. Along with that milestone, unfortunately, comes increased risk of mental health challenges. In Canada alone, the Alzheimer’s Society of Canada estimates that “450,000 Canadians over 65 have Alzheimer’s or a related disease,” while “36 percent of Canadians know someone with Alzheimer’s disease,” and “17 percent of Canadians have someone with Alzheimer’s disease in their family.”

The society’s website states, “Alzheimer’s disease is not a normal part of aging. Symptoms include having difficulty remembering things, making decisions and performing tasks. These changes can affect the way a person feels and acts.” 

‘Alzheimer’s,’ as it’s popularly known, has become one of today’s more renowned pathologies. It’s a disease that has affected people from all walks of life, and has famously claimed people from American presidents (Ronald Reagan) and British prime ministers (Harold Wilson), to Hollywood stars (Charlton Heston, Rita Hayworth).

John Haugse, an American artist and filmmaker, documented the odd turns in his relationship with his Alzheimer’s-diagnosed father in the graphic novel Heavy Snow; Haugse’s father was a Lutheran pastor.

Stephen and Rhonda Klinck have both seen both their octogenarian mothers with the disease over the past year, both stricken in different ways. “I’ve said it lots of times; it’s an awful disease. It robs you of the person,” says Stephen, the managing director of the Lutheran Laymen’s League of Canada and a member of St. Paul’s Lutheran in Elmira, Ontario. While his mother was older than Rhonda’s mother, Doris, it seems Stephen’s mother, Trudy, had suffered from a less severe form of the disease. Trudy passed away last autumn. “She was very confused at the end, and certainly after she’d had her fall,” he says about his mother. “But before that she participated in day-to-day activities. Some days weren’t very good, but she certainly always knew who we were.”

A faith for all ages

When 59-year-old speculative fiction author Terry Pratchett was diagnosed with Alzheimer’s earlier this spring, he said, “I’m a humanist, which means I’m an atheist; the trouble with being an atheist is that it lets God off the hook. You really want someone to blame.”

Doing things like attending church is helpful for sufferers of dementia.

In Pratchett’s case, it may also mean he can’t avail himself of the support that many Christians have.

Despite the disease’s effects on memory, anecdotal evidence shows that doing things like attending church is helpful for sufferers of dementia. Memories of the church rituals—the liturgy, the hymns and the patterns in Sunday worship—are often stored in the long-term memory side of the brain, especially if churchgoing has been a lifelong habit. Music is documented as having an especially profound effect on patients.

Phyllis Dueck is a member at Winnipeg’s Beautiful Savior Lutheran Church and works in a personal care home in the south end of the city and coordinates the visitation programs of Lutheran Volunteer Ministry.

When thinking about her experiences, “something pretty outstanding popped in my mind” she says. “I was visiting an elderly person at Golden Links Lodge—she was Lutheran—and there had been no response. The ‘lights’ were totally out, she was just staring, just not relating at all. And I started to sing to her Jesus Loves Me, and, with that, a smile came to her face and she just warmed up. The spirit is still in there. The mind is cognitively impaired, but the spirit is still there.”

Phyllis believes her father Rudolph Kunzelman  suffered from Alzheimer’s. “My dad was a great man of faith,” she remembers. “When you talked spirituality to him, his demeanour changed. Often, he would cry… That part of his mind was cognitively intact. “We would take him to the church service in the personal care home in Gladstone (Manitoba). He was restless (as a patient, generally), and he was noisy. But we’d take him into the service and as soon as we heard the singing, he was quiet, and he would sing. That’s such a blessing. When someone has the Christian heritage, the faith is so prevalent.”

Stephen Klinck would take his mother to the church service every week. “Those things are ingrained. She may have not remembered the person’s name in the pew beside her, but certainly, the things in church stayed with her and were important to her. She didn’t forget that right up until she died.”  (In fact, a spill at Bible study hastened Trudy’s ill health, which eventually led to her death.)

Rhonda Klinck’s mother, despite her “progression” still sings the hymns, too.

But was her mother’s faith a salve for her mother?

”I have no doubts that the Alzheimer’s couldn’t rob her of her faith.”

“It’s not something that she would point to. I think that it would have had to have been a comfort. She didn’t vocalize that, but I suspect there was something comforting to her, too,” says Rhonda. “In Bible study she wouldn’t say much any more, but when she did say something, it was very pertinent.”

But whether we know it or not, there may be some spiritual comfort to the patient who believes. Says Rhonda Klinck, “These things are really, really hard. If someone is facing these things without their faith, it must be extremely difficult to cope.”

”In the Lutheran tradition, we believe that at baptism it’s the Holy Spirit who sustains the faith,” Stephen Klinck says. “It’s a comfort to me that it didn’t matter that she couldn’t remember. That wasn’t what was important.

”I have no doubts that the Alzheimer’s couldn’t rob her of her faith. God is there to nurture our faith, to keep it and sustain it. It doesn’t matter that their heavy intellectual capacity to express their faith wasn’t what it once was.”

But as Fiona from Away From Her vocalizes, anger perhaps is also part of the path of Alzheimer’s, in one form or another. Rhonda is not certain she has been angry at God “but sometimes you have to question, ‘why are you picking our mothers?’”  She resolves any spiritual conflict with the assurance that “God is in charge, and somewhere there is a plan.”

When their son was married early this summer, Stephen and Rhonda weren’t sure if Rhonda’s mother would attend. “If she’s not having a good day, she’ll miss out. It sure makes you angry at the disease; I’m not sure it’s so much at God. You do get very frustrated with how they act. There’s an anger.”

There are other feelings, too. “Sometimes with this disease, I would feel that we were suffering … as opposed to the fact that she was ill,” says Stephen.

There’s also a fair bit of guilt in the wake of an Alzheimer’s diagnosis. Stephen knows people who have expressed relief upon the death of an Alzheimer’s stricken family member. “They feel kind of guilty, because it is almost a relief when the patient physically dies.”

In the book A Dignified Life; A Guide for Family Caregivers by Virginia Bell and David Troxel, the authors write, “Alzheimer’s disease finds people at their best and worst... It is also true that caregivers are hardest on themselves. Give yourself permission to have bad days, to make mistakes, and to think angry, shameful thoughts.”

When a parent slowly draws back from children, even failing to recognize them, it makes the command to “Honour your father and your mother, so that you may live long in the land the Lord your God is giving you,” (Exodus 20:12) a troubling challenge. Yet by God’s grace, we can love them for who they are in Him, caring and loving unconditionally, as God does for His children.

Jim Chliboyko is a Lutheran and a freelance writer in Winnipeg. His grandmother, Marjorie MacDonald, also a freelance writer, suffered from Alzheimer’s Disease.

Originally published in The Canadian Lutheran, July/August 2008.




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