Chapter_9.html

Spiritual Journeying and Religion

Often family members ask what happens to their loved one’s spiritual life or religious convictions when Alzheimer’s disease and other dementia strikes. Can he still be religious if he cannot remember passages from the Bible, prayers, and other traditions and rituals he cherished? Can she retain her spiritual connection to nature even if she becomes homebound? We believe that the answer is yes.

Dr. James Holloway had a doctorate in philosophy from Yale University. When he was asked for his definition of spirit, he no longer could give a formal, academic answer, as he once might have done, because of his dementia. Instead he quickly responded, “That’s a tough one! Well, I can tell you one thing, it’s not what a lot of people think it is. It is not something far off. It is what keeps us going.”

We particularly like his last phrase, “It is what keeps us going.” Food to stave off hunger or shelter to stay warm at night is essential to life. Yet it is our quest for meaning, place, and purpose in our lives that defines us as human beings. Many individuals embrace formal religious beliefs and practices for their spiritual connection. Others meet their spiritual needs in other ways, such as through the visual arts, music, or nature.

Just as those with dementia may need help getting dressed, they need help fulfilling basic spiritual needs. A person with dementia is usually unable to attend Mass if no one is available to drive him or her there. Someone with dementia who loves the outdoors may be confined on the third floor of an assisted living community, unable to soak in the sun and hear the birds sing. An artist may not be able to initiate the act of picking up paints and a brush.

A pioneer in dementia care, Tom Kitwood, PhD, pointed out that our role as care partners is to be “physicians of the human spirit.” Rather than allow the person with dementia to become spiritually bereft, it is important to treat the human spirit, to open opportunities for spiritual needs to be met. We do this by creating a spiritual space or spiritual moment for the person. This chapter shares ideas to help you do this.

Celebrate the Person’s Religious Heritage

Many people with dementia have been members of a religious tradition since early childhood. They have attended religious services, been taught in educational sessions, sung in choirs, visited the sick as representatives of their faith community, and even been religious leaders in their communities. This connection to others and to their God or a supreme being has helped give meaning and purpose to their lives. Dementia does not negate this even if the person does not fully understand or remember the details of his or her religious practices.

The person with early-stage dementia can participate fully, with a little help as needed, in the life of his or her religious community. The person can stay connected with the community by attending worship services, participating in social occasions, delivering meals to shut-ins with a friend, and maintaining participation in the choir.

Just because Claralee Arnold was having difficulty with her recent memory was no reason for her to give up a cherished activity. She had sung in her church choir since graduation from college. She could still read music, and she loved her friends in the choir. Every Sunday morning, Claralee processed down the aisle in her choir robe and took her place in the choir loft.

Not only did this weekly experience fulfill Claralee’s need to be connected to her religious tradition, it also gave further meaning to her life as she used her musical ability to help others.

Families have shared with us the ways their family members with dementia have gotten the most fulfillment from their religious faith:

Singing and listening to familiar hymns and other religious music.
Reading or having another read to them from the Bible, Torah, Koran, or other sacred writings.
Praying or participating in prayers given by another.
Sharing in religious rituals or traditions, such as the Eucharist or a Seder meal.
Holding religious symbols such as the cross or prayer beads.
Lighting the menorah.

These religious activities can be enjoyed at the place of worship or wherever the person is living—in his or her own home or in a residential community. As the dementia progresses, you need to be creative and choose only those things that still seem to help the person connect to his or her faith.

Many families despair when a person can no longer actively participate in religious practices. The best answer to this, we think, came from a caregiver support group member who simply said that in her view, “God is compassionate and caring, particularly for those who are most in need.”

Uncovering Comforting Traditions

Josephine, a Catholic woman with advanced dementia, often sat with her eyes closed and made vocal sounds that were difficult to understand, said Dorothy Seman, Assistant Manager of Home Care Programs at the Jesse Brown VA Medical Center in Chicago. While Josephine made these sounds, she moved her hands in a repetitive circular motion. Staff were puzzled until someone ventured, “If I didn’t know better, I’d say she was praying the rosary.” The next time Josephine made the hand movements, a staff member placed a rosary in her hands. Josephine began fingering the beads. With tears in her eyes, she beamed at the staff member and put the crucifix to her lips to kiss it. Connecting her to her faith and this ritual gave her comfort.

Look to the Creative Arts

The creative arts—think of Mozart’s music or Picasso’s transforming paintings—take us away from the mundane and allow us to reflect on our lives and our place in the universe. Such expressions of human creativity are part of what makes us spiritual beings. Humans have been creating like this for centuries: Ancient peoples painted caves and decorated their food pots. Later, there was poetry and theater.

Painting, drawing, sculpting, and enjoying the arts fulfills a need for creative expression. In fact, Bruce Miller, MD, Director of the University of California at San Francisco Memory and Aging Center, found that individuals with certain types of dementia can return to an earlier age when creativity and imagination are not discouraged by adult society.

Dancing, rhythmic movement, playing a musical instrument, even simply tapping a beat are all activities that can touch the spirit. One care partner we met took up African drumming, which helped her feel part of a creative community while pounding out her frustration!

Letch Dixon is a clogger. When he hears the beat of the music his feet begin to move. Though his conversation ability is very impaired, he can’t stay seated. At the day center he is the first one on his feet. He exudes great joy and a sense of accomplishment. Music is a language that he can understand.

Music and dancing have been part of a spiritual life since the early days of civilization. Today, music and dancing continue to touch the spirit of persons like Letch.

One group of people with dementia spent almost an hour studying an oversized print of the Mona Lisa. Most recognized the image but only one or two could name the work. The group leader asked what they thought of the famous smile. One woman said that someone must have told a joke. A man said that she must be in love. Asked if they thought Mona Lisa was beautiful, they all agreed, “Yes, oh yes.” The arts can reach out and touch a person with dementia.

Patricia Estill had always loved to paint and draw. As her losses piled up with things she could no longer do, her love of painting remained. Her spirit seemed to soar to counteract her cognitive decline. Even though her art style changed, her interest in painting endured almost to the end of her life.

Painting fulfilled the need of Patricia’s spirit to be productive and important, and her folk art helped her celebrate her African-American heritage.

The Museum of Modern Art (MoMA) in New York City has developed a wonderful program that uses the arts to engage persons with dementia. Many other local museums have created similar programs. Read more about it at http://www.moma.org/meetme/.

Marvel at the Wonders of Nature

Many persons feel spiritually fulfilled when they have the opportunity to spend time in the great outdoors. There they can smell the aroma of blossoms, feel the gentle breeze, hear bird calls, touch the soil as they prepare for a garden plot, and see a squirrel scamper up a tree. We often overlook this longing of some persons to be connected with nature as they may have been all of their lives.

Richard Thompson, a volunteer in the Best Friends Day Center, wrote, “On a beautiful autumn day my Best Friend, John Lackey, and I went for an outside walk with the assigned goal of taking photos to include in his memory book. I first took several snapshots of him using a traditional backdrop beside a water fountain. Then I handed the camera to him. His focus was on cloud formations, tree shapes, the interplay of a jet stream and the sun’s rays coinciding with the roofline of a church, and shadows playing in the sunlight. He came ‘to life’ in a way I had not observed before.”

John’s wife shared with us that John had always loved being with nature and could always spot a special sunset and gather the family for a “sunset alert.” They had spent time in state and national parks and hiked as a family on family vacations. This experience was just another expression of John’s lifelong love of nature.

Richard continues: “While my focus had been on the ordinary, John soared to breathtaking views that I would have missed, totally, had he not been directing my attention in a different direction. I learned from this day’s project that dementia does not rob all of one’s capabilities at the same time. His artist perspective was very much alive and appreciated but I also learned just how limited my own observational skills had become. I look up more often now thanks to my Best Friend.”

For some persons, being able to marvel at the created world fulfills a great spiritual need and we, as friends, can learn to “look up” more often.

Being with Friends and Family

Most of us gain tremendous feelings of connection and community from being with our friends and families. These loved ones know our stories, values, and beliefs. We celebrate traditions together. We do things together. We talk. Being with friends and family is an important part of a spiritual life.

Persons with dementia can become isolated and denied this key element of a spiritual life. We want to create opportunities for them to enjoy being with friends and family in a space that encourages communication. For example, it can touch the spirit for a person with dementia to do a simple activity one-on-one with a family member (like arranging flowers), say a prayer or spiritual reading together, enjoy some beautiful music, or simply take time for a walk outside.

Dorothy Troxel loved being with friends and family. On special occasions, the table would be set with Dorothy’s beautiful china dishes, fresh flowers, and lovely tablecloth. Dorothy would “host a tea” for her friends and family and enjoy this old ritual.

Sometimes friends and family feel uncomfortable visiting a person with dementia, not knowing what to do or what not to do. Encourage friends and family to continue their visits and just to be in the moment and not worry about the outcome. Stress that the person enjoys our presence and plan for a simple activity like the tea party to make the experience more enjoyable for all.

Nourish Your Own Spiritual Life

Caregiving can be a difficult job, and sometimes the most caring and involved family and staff members burn out the fastest. One way to avoid burnout is to take care of your own spiritual needs. Spiritual self-care can involve maintaining your own faith traditions, taking time to keep a journal, playing a musical instrument, or being outdoors. Many individuals with a religious tradition view their work as care partners as one way to show God’s love.

Tap Steven and his wife, Frankie, participate in music and singing. Tap also writes poetry about his life and condition out of the strong need to help others who may be going through a similar experience. Although they feel his Alzheimer’s-related losses, both believe that they are living life to the fullest and celebrating their spiritual values in their everyday lives.

Another way to nourish your own spiritual needs is to seek personal support from your faith community. Many communities have a “minister of aging concerns” who focuses on older members.

Because of the slow and progressive nature of Alzheimer’s disease and other dementia, it may be harder for others in your faith community to recognize your problems and needs. If your faith community is not knowledgeable about dementia and care partner needs, invite a speaker to give a talk or ask if a support group can be started on-site.

Spiritual self-care also involves time spent thinking about issues such as grief and loss, death and dying. You might find it helpful to find a counselor who specializes in this area.

Alternatives to Regular Religious Services

Attend part of the service (prayers, readings, music, meaningful rituals).
Attend a smaller, more informal worship service, class, or social gathering.
Attend special services, especially musical programs or events celebrating a religious holiday.
Visit the place of worship when no service is being held; just to sit in the “holy space.”
Watch a religious service or program on television or the Internet.

Give Spiritual Care Throughout the Illness

Individuals with early-stage dementia need as much independence as possible and are often able to fulfill many of their own needs.

Phil Zwicke’s Alzheimer’s disease did not keep him from his passion for the ocean. He loved windsurfing in the Santa Barbara channel. This put him in touch with the sea, with dolphins and whales, with the blue sky and breeze. It brought him comfort and peace.

As the disease progresses, there may be less and less that a person can do. Many faith communities have staff or volunteers who participate in visitation programs, bringing all or part of the services or rituals to your loved one at home or in a residential care community. If your loved one is at a day center or residential program, be sure to give staff members ideas about what is meaningful to him or her.

Phil Zwicke still enjoying one of his favorite activities.

Annie Holman gradually became unable to attend the church where she had been very active all of her life. But she enjoyed listening to favorite hymns, seeing a smile, feeling a touch, and hearing her name called. It seemed to connect her to the love she had known in her church community.

Ways to provide spiritual care at the end of life will vary from person to person. You are the most likely to know what will be most helpful to the person. Does your mother smile when you tell her you love her? Does she seem at peace when her minister prays with her? Does she respond when you hold her hand? Does she enjoy hearing favorite religious songs? Does she come to life when the great-grandchildren come for a visit? Does she know that someone who loves her is present? Sensitive, loving care at the end of life is essential for the person and for you.

Many families take advantage of hospice services at the end of the person’s life. Most hospices provide spiritual support and counseling during this difficult time.

The Power of Quietness

“It’s important to provide quiet times of reflection in addition to outward socialization,” says Leslie Congleton, Program Coordinator for Legacy Health Systems’ Trinity Place Alzheimer’s Day Respite Program in Portland, Oregon. “So often professionals who are involved with providing activities for individuals with dementia focus on the outward, social, upbeat party times and neglect the thirst that each of us has for quiet inward times.”

Embrace Simplicity

A person with dementia faces a shrinking world. The international banker now organizes his desk drawer once an hour. The gourmet cook now can only stir and taste the soup. Although most people despair these losses, they often reach a point in the disease when their needs change and they begin to take pleasure from simple, repetitive tasks. These tasks can connect them with something larger than themselves and can hold spiritual meaning.

Edith Hayes had always loved looking for four-leaf clovers. She wrote notes to family and friends for all special occasions and often enclosed a pressed four-leaf clover for good luck. Eventually she could not keep up with her note writing, but she still delighted in searching a clover patch for a prized lucky clover. This simple activity connected her with her spiritual need to find a gift to give others.

Other acts of simplicity celebrate the magic and power of children; many people with dementia enjoy the naiveté and simplicity of children (who also may not be able to name the president of the United States). Sitting on the sofa, listening to classical music may feed the spirit. A simple, familiar prayer or sacred reading can comfort a distressed person with dementia.

CONCLUSION

A common cry of many with dementia is “I want to go home. I want to go home.” We believe that this is much more than a literal statement of place and instead is a cry for spiritual connectedness. Home represents a happier time and a place safe from the present and from dementia.

As a care partner, you can create a spiritual space or moment for the person, one that allows the person to “go home” spiritually, if not physically. When loving care is given, it allows people to make their own connection, however limited, to the world of the spirit. When families value the person, a home can become a spiritual space. When care is good and the staff is well trained, a nursing home can become a spiritual space.

When you create this space by offering enhanced activities and a life-affirming environment, something else happens: You create a spiritual space not only for the person with dementia but also for yourself.

One care partner told us this beautiful story at a conference:

Mom and I were taking a walk, and as hard as I tried to be attentive, my mind was on my own problems. I was thinking about work, a problem in my marriage, and some financial decisions. My mother suddenly said, “Look at that!” I looked up toward a group of trees and could see nothing. She said, “Look at that beautiful blue bird.” I still couldn’t see it. Finally, as I scanned the tree limbs it was there. This incident made me reflect on my mother’s world and my own. Now, she always finds the beautiful birds in the trees or smells the scent of flowers in the air and hears music in the distance—all of these things I had shut out. Her Alzheimer’s disease has somehow put her back in touch with nature and her spiritual side. I had perfect cognition, but I wasn’t seeing any of the world around me. Maybe there are still some things I could learn from her.

Being present is a profound, spiritual gift we can give the person with dementia.

Ironically, the stripping away of cognition actually seems to increase the person’s spiritual awareness and might make it easier for us to recognize, understand, and meet the needs of the spirit. The person with dementia may now have an enhanced awareness of and appreciation for familiar religious symbols or icons, a beautiful sunset, music, or art. When you take time to reflect on spirituality, take time to be in the present; the very things that nourish the person with dementia may nourish you as well.

Best Friends Pointers

Every person has a spirit and is spiritual, whether or not he or she is part of a religious tradition.
Try to keep the person who has been a member of a faith community connected to those religious practices for as long as possible.
Look for ways the person finds meaning and purpose in his or her life outside the framework of formal religion, such as in art, nature, music, and friends and family.
By being a Best Friend to the person with dementia, you will be practicing spiritual care at its best.