Rev. Dr. Angelica is a contributor to our interfaith book Seasons of Caring and a founder of UsAgainstAlzheimer's Clergy Network. - Trish
Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers
“and you will know the truth, and the truth will make you free.” (John 8:32)
We caregivers can no longer avoid the truth: Caring for someone who is diminishing from Alzheimer’s or another type of dementia will be a challenging, life-changing experience. As the Gospel of John tells us, knowing this truth will set us free – free to ask for and receive vital help. Family caregivers need not be alone – should not be alone – on this journey through Alzheimer’s.
Years ago, a friend from a twelve-step program observed what he referred to as my greatest strength: the ability to ask for and accept help. Nowhere in my life has this strength been more needed or more of a ‘saving grace’ than it was on my journey with Mom through Alzheimer’s disease. Looking back at my own path through this experience, it becomes clear that companionship provides a kind of help that can be a determining factor as to whether caregiving becomes a burden or a blessing.
During the same years I cared for Mom, I had the great privilege of studying in a doctoral program in faith, health, and spirituality. As professors, colleagues, and friends observed my caregiving experiences reflected through my theological wondering and writing, they noticed that something seemed to be missing. I wasn’t suffering. They didn’t understand. Other family caregivers talking about and writing about Alzheimer’s often seem burdened and in great pain over the losses inherent in the disease and the stresses of caregiving, so I didn’t really understand myself. Like all caregivers, I faced times of strain and feelings of confusion, fear, anger, heartache, and sadness; however, I wasn’t suffering. On the contrary, I was often feeling peaceful, even joyful. For a time, I wondered if maybe I was doing something wrong. Then I made a list of my companions on this journey, and the source of my peace and joy became clear.
I had moved from Boston to Iowa—alone—to be with Mom. Having been away from my hometown for thirty-two years, I didn’t know anyone except Mom. I did know, however, that I was a beginner in this new world of Alzheimer’s and I needed help—to learn about the disease, become an effective caregiver, address my fears, find a place to live, meet compatible people, develop a support system, take care of myself, find spiritual inspiration, and make sure Mom had the best care and quality of life possible. So, I reached out. I asked for what I needed—and I received information, guidance, and support beyond anything I could have imagined.
Some of my most important companions were authors. This surprised me because when Mom was first diagnosed with Alzheimer’s I was too frightened to even open a book about it. Then one day, a spiritually stirring article, “On Caregiving,” by Harvard Medical School professor and caregiver, Dr. Arthur Kleinman, serendipitously arrived in the mail. The depth of this article gave me the courage I needed to read more on the subject of Alzheimer’s. My mind and heart were opened, and wisdom and inspiration began to flow into my life.
I longed for more spiritual companions on my journey, and was gloriously guided to the writing of Olivia Hoblitzelle, John McFadden, Richard Morgan, Marty Richards, Stephen Sapp, and Jane Thibeadeau. Their knowledge and insight about spiritual aspects of Alzheimer’s transformed my years as Mom’s daily companion into a Pilgrimage. It became a time of deepening Faith as I searched for God through a veil of tears and fears. I didn’t want Mom to suffer with this disease any more than was absolutely necessary, and surprisingly, my efforts to relieve her suffering also relieved my own suffering.
Learning about the diseases of dementia and understanding the limits and needs of persons living with these diseases will be the most important thing caregivers can do to help our loved ones and ourselves. My author-companions who integrated spirituality into the practice of caregiving, offered a wellspring of essential, practical information – and they offered more than information. Through their Faith and Trust in God as our ultimate companion on this and every challenging journey, they gave me courage; they gave me hope; they helped me transform an experience of pain and loss into a life of meaning and purpose.
Olivia, John, Richard, Marty, Stephen, and Jane – my cherished spiritual guides – are once again my companions, now as colleagues and collaborators. We have blended our voices of compassion and advocacy for persons with Alzheimer’s and dementia and their caregivers with sixty-five other authors from seventeen different faith traditions, and with the support of the ClergyAgainstAlzheimer’s Network (http://www.usagainstalzheimers.org/networks/clergy) we have created an interfaith volume of comfort and hope. Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers (http://www.usagainstalzheimers.org/networks/clergy/seasons-caring) contains 150 meditations and prayers written especially for family caregivers who are seeking spiritual guidance and companionship as they navigate through the world of dementia.
Seasons of Caring authors intimately know the life of caregiving. Through our knowing, we name the truth of life with Alzheimer’s and dementia in each meditation. Through each prayer we acknowledge what people of faith already know: We are not alone – God is with us, always. Nothing less would be expected from clergy and people of faith writing for dementia caregivers. But there is an insight to be recognized in Seasons of Caring that may be surprising. Almost all of the meditations tell a story of a relational encounter with a person with Alzheimer’s or dementia. It’s through these surprising encounters that caregivers’ hearts become open and love flows like living waters. It’s through these encounters that we discover another truth: Our most important companions on this journey are our loved ones with dementia. This is unquestionably my truth. Mom was my most faithful, my most beloved companion on the journey through Alzheimer’s.
On behalf of all the authors who contributed to Season of Caring, I express our collective hope that the stories of our inspiring meetings with persons with Alzheimer’s will be a light in the darkness of caregiving. And on behalf of my mom, who died from Alzheimer’s in January of 2011, I express her happiness in knowing that, through her example, our experiences together on the journey, and my writing, she will help someone else in need. Relieving suffering through truth and companionship is the hoped for legacy of Seasons of Caring.
Rev. Dr. Angelica is a founding member of Clergy Against Alzheimer’s and author of Where Two Worlds Touch: A Spiritual Journey Through Alzheimer’s Disease.