Spirituality is the part of our life that holds deep beliefs, seeks purpose and meaning for our place in the world, and connects us to others as well as to something greater than ourselves. It has long been synonymous with religion, yet for the past several years, many people describe themselves as ‘spiritual, not religious.’ Ultimately, spirituality is something that we understand and define in our own unique way. It is how we find comfort, direction, reassurance and hope throughout our lives. Religion, beliefs, art, music, nature, hobbies and meditation are some common ways in which a sense of the sacred and personal meaning are known and lived.
When Alzheimer’s/dementia becomes a part of our lives—whether as a medical condition of our own, or we are the care partner of a loved one—spirituality is and remains a strength and a coping skill throughout the journey. Our sense of spirituality is always with us. It is never lost to the fog of dementia, to the physical challenges that slowly limit the body, to the fading away of memories and abilities.
Religion, the connection, hope and integrity through the belief in God or some form of absolute and higher truth and the divine in such practices as prayer, ritual or meditation is just one expression of our spirituality. A religion is defined as a collective set of faith beliefs, symbols, words, prayers, music and practices that connect believers to that which is greater than us and is sacred.
Our religious roots often begin in childhood before we have the cognition to understand the meaning and the rituals of worship and other practices of faith. We follow the actions of others in the congregation, pray words that become familiar recitations, hear the sacred stories that evoke feelings of reverence or peace, sing hymns that we learn to recognize on just the first few musical notes, celebrate holidays and Holy Days, and learn to recognize religious symbols as a part of our faith life long before we know or understand their powerful significance and profound purpose. These early experiences become not only deep-seated memories but by their frequent repetition they become ‘over learned’ memories ingrained and embodied to the very core of our being as spiritual memory. Medically this is termed ‘procedural memory’ as long-term memories of skill are well learned and entrenched. Spiritual memory reaches the soul. Religious rituals rekindle and reconnect the spiritual memory. The person with dementia returns to the childhood era of joining in the familiar words, hymns, prayers, actions and rituals although the theological understandings and religious meanings become lost to them. There is tremendous spiritual and religious comfort in the familiar faith expressions that is beyond the bounds of understanding and memory. Faith connections are from the heart just as much as they can be intellectual.
Spiritual comfort can be found in the many traditions of religion. The accustomed clothing of the clergy, the sacramental actions, the words and cadence of familiar prayers or creeds, well known and loved hymns, religious objects that can be touched and held bring a peaceful connection. The theological understanding, history and purpose is gradually lost, but the sensation of Communion bread on their tongues, a cross on the wall, the fragrant smell of incense, the feel of rosary beads in their hands, or hearing easily recognized Scripture passages, are multi-sensory touchstones to religious memories.
Spirituality can be a sense of peace and gratitude found in nature, through the grandeur of the mountains, the rhythmic waves of the ocean, the determined budding of a crocus after a long winter, the simple song of a robin, a peaceful hike in the woods or the colors of a sunset. Yet nature also holds an awareness of the fierce energy of fire, the roaring anger of turbulent waters, the dying of the beautiful autumn leaves and the reminder that the sun is always above the heavily clouded sky.
The heart of spirituality may also be the people in their lives, family and friends or those they have cared for in a professional way. Art and music are creative expressions of spirituality, bringing to the page or canvas or sculpture or instrument what is inspiring and grounding. Spirituality can be expressed in a bodily way, through yoga or meditation to look within to see what is beyond, through journaling the thoughts of an experience and through sensory activity and awareness.
When dealing with serious illness spiritual issues often arise for the person who is ill and for the people close to them. The process and experience of an illness disturbs your sense of meaning, values, and faith. Attending to spiritual needs helps to not only deal with these concerns, but it will also offer opportunities for comfort, growth and insight over time which enhances and enriches coping skills, provides encouragement and reveals some positive aspects in your caregiving journey. Spirituality encourages personal energy to be freed from the distraction of the unanswerable questions and instead used for moving towards acceptance of this new reality, and to learn, grow and gain strength and comfort from it.
What does spirituality as a comfort for those living in the world of Alzheimer’s/dementia look like?
Ann’s Ice Skates
Ann’s lifelong passion was ice skating. From her childhood she had loved skating on ponds and rinks, and so it was no surprise to anyone when she became an ice skating instructor. She especially loved teaching the youngest children, helping them to develop the confidence and skills on the ice so that they too might discover this same passion within themselves. She was gentle, patient and encouraging with her students. Over time she taught the children of those who long ago were her young beginners.
Ann developed Alzheimer’s and slowly lost her abilities to skate and to teach. Her son found a loving way to continue her passion. Although she was unable to lace up her skates, or balance on them by herself, and no longer had the capability to work with the children, her son created a way for her. At the same skating rink where she had taught for many years he would place her skates on her feet and help her to stand up against the boards while the beginner skating class was being taught. On her skates, looking at the children on the ice while she was standing on the rubber flooring, Ann would whisper encouraging words and sounds when they fell and cheer on their progress as they moved gingerly across the ice. The children and their teacher never saw Ann, never heard her caring words of guidance, but she saw them. When she was tired, her son would take off her skates and tell her what a great skating teacher she was, what a great lesson today had been.
Ice skating and teaching was what brought joy, purpose and meaning to Ann’s whole life. When she was no longer able to continue in the ways she had done for so many years, her son found a way to adapt and Ann continued to teach. Not only did this matter to both of them in the moment each time they stood along the boards and the children were on the ice, it brought a sense of peace to her son when his mother passed away. It was a reassurance to him that he was the caregiver she had needed.
Robert’s “Alleluia”
Robert was the father of seven children and had many children and great grandchildren. Their pictures adorned much of the wall space in his nursing home room. Beaming smiles from special family events over the years surrounded him, but he had long ago lost his ability to recognize them as his family. He saw pictures of his grandchildren and understood them to be current pictures of his children. His wife came almost every day to feed him his lunch, and although he would smile at her, he no longer recognized her as his partner of 54 years. He was emotionally connected with her as a safe person who made him happy with companionship and food.
One of the greatest joys in Robert’s life had been singing in his church choir, his rich baritone voice prayerfully leading the congregational hymns, his faith expressed in every note. Dementia had left him unable to speak a clear, coherent word, but hymn music still brought him spiritual peace. Listening to old familiar hymns relaxed him, calmed him in the times of agitation, and while he could not speak, he would joyfully and loudly sing out “alleluia” in harmony with the hymns. While Robert had lost the understanding of the liturgical year or the significance of the hymns, his joy was evident each and every “alleluia” his soul sang out.
Behind the veil of dementia is the same person always known, harder to see, yet still present. Reaching beyond that veil is a spiritual connection, reaching by what has brought them joy, satisfaction, values and inspiration.
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