Tuesday, May 13, 2014

Getting Home Before Dark: Dealing With Dementia

CBC Radio's The Current is running a series on Alzheimer's Disease this week. It reminds me of a column I wrote in 2010 about how the rising rate of dementia, and what people of faith could be doing to help.

“Let me get home before dark.”

That was the prayer of my former Mennonite Central Committee colleague Peter Dyck—also known as "Mr. MCC" for his tireless work on behalf of the agency—asking God to let him die before age robbed him of his memory, and of his ability to be kind, trusting, loving and generous.

In one of the reflections in Getting Home Before Dark, a book of meditations about aging, he wrote about friends who succumbed to darkness

"Once they were young and strong, kind and loving, but something happened," he wrote. But then "their generous spirits shrivelled, their minds became suspicious, and they became something we thought existed only in horror stories, not in reality.

"O Lord, please, don't let that happen to me. Let me get home before a darkness like that overtakes me."

Dyck passed away Jan. 4, 2010 at the age of 95 in Scottdale, Pa. According to those who were with him to the end, his prayer was answered.

There were some difficult days, his son-in-law told me, but until then end his mind remained clear and he continued to be positive and encouraging.

Like Peter, I also pray that I will get home before dementia takes hold; I can't imagine anything worse than knowing I am slipping away into a dark place, far from family and friends. I'm sure many others feel the same way, and pray the same prayer.

But growing numbers of people won't have their prayer answered. A study by the Alzheimer Society of Canada predicts that more than a million Canadians will be afflicted by dementia by 2038—double what it is now.

The rising rate will pose a challenge for people of faith. As Canada ages, places of worship will age, too.

A few groups are beginning to think about how they can minister to people with cognitive impairment and to their families. 

The Evangelical Lutheran Church in America, for example, is encouraging congregations to create "Care Teams" who are trained to respond to the needs of people with Alzheimer's and their families, including giving family members much-needed breaks by looking after their loved ones.

One subject that is also beginning to receive attention is the role of ritual and music in serving people with dementia. Holy Cross Family Ministries in North Easton, Mass. has published Pray With Me Still, a prayer guide to help patients and family members live with Alzheimer's.

"A prayer like the rosary is very helpful," said Father John Phalen, who says that praying with an Alzheimer's patient can be a way to reach them. The disease can take people away from the present, he says, but the past is still deeply imbedded in them.

"The 'Our Father' and the 'Hail Mary' are often two of the first prayers a (Roman Catholic) learns as a young child," he says, noting that reciting the rosary can take the patient back to that time and provide them with comfort.

A care home run by members of the Church of Jesus Christ of Latter Day Saints in Utah is using Sunday school nursery curriculum to minister to people with Alzheimer's.

Sally Dietlein, a counsellor at the facility, says that the visuals and familiar hymns from the curriculum stimulate the spiritual senses and memories of people with dementia. "The primary music is perfect" for people with the illness, she adds.

Much more should be done in the area of religion and dementia, says Gisela Webb, a professor of religious studies at Seton Hall University who watched her mother slip away through Alzheimer's.

In the fall 2001 issue of Cross Currents, she writes that she came to appreciate the "positive dimension of sacramental religion"—the way rituals, prayers and music "reveal the presence of the divine" to people who might otherwise be unreachable.

She goes on to say that even in the most advanced form of dementia, there is a "body memory" that "remains much longer than mind and linear thinking, and so the feelings of religious ritual, music, chant, poetry, body postures, and, particularly, the quality/essence of music . . . continue to be enjoyed and clearly partaken in, even after life-long rituals can no longer be performed and life-long prayers can no longer be articulated."

In Psalms 88:12, the writer asks God: "Are your wonders known in the place of darkness, or your righteous deeds in the land of oblivion?" The answer, I think, is yes—even if we pray we will never go to that dark place.

Dyck's book, Getting Home Before Dark, can be purchased from MennoMedia.

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