Caring for someone they love with dementia taxes them as much as their loved one
*Originally published in The Galveston County Daily News
By RICK COUSINS Correspondent | Posted: Friday, September 2, 2016 9:45 pm
Fifteenth-century Christian writer John of the Cross, did not know of Alzheimer’s or other dementias when he wrote his most famous poem describing his own inner experience as, “la noche oscura.” But his imagery could hit home with those families faced with such suffering. It is well-described in the title of John’s poem, “The dark night of the soul.”
Alice Williams of Moody Methodist’s Libbie’s Place, an adult day care, knows a bit about this as she sees patients and their caregivers daily there. Folks need extra support as caring for someone they love with dementia taxes them as much as their loved one diagnosed with Alzheimer’s or a similar disease.
Q: What’s the spiritual antidote to despair when a loved one begins to lose memories, has personality shifts and becomes very dependent or needy?
A: A family caregiver once told me that caring for someone with Alzheimer’s is a long journey of grieving and loss, not just when the person dies but as they decline physically, cognitively and emotionally. To maintain one’s own faith is a huge challenge. I help lead a monthly Caregiver Connection meeting that allows family caregivers to meet and share their ups and downs of caring for someone they love. Being with other people who truly understand what it is like to meet the daily challenges of providing personal care and companionship to someone with dementia is invaluable. Maintaining one’s own physical, mental and spiritual health is critical to family caregivers.
Q: How can a loved one’s legacy be preserved before it is lost to a family? Is there a way to record who they are/were for future generations?
A: Pictures in a scrapbook or album that include stories about the person’s childhood, education, occupation, family as an adult and leisure activities are helpful. Video and audio recordings are more personal and also help to preserve memories.
Q: “The dark night of the soul” is a poetic way to describe the suffering that dementia can bring. How does one prepare a soul for the possible ravages of aging and disease?
A: One of our previous participants at Libbie’s Place was a former minister who has been diagnosed with Alzheimer’s. I always remember him saying, “My Alzheimer’s is not who I am. It does not define me. I am still a man of God who happens to have Alzheimer’s.” He always carried a card in his pocket with the Halverson Benediction on it and would give one to everyone he met. It became his way of connecting with people when he could no longer preach and teach others. His faith that he was a man of God, before and after he developed Alzheimer’s, is a powerful testament that this disease may rob a person of their daily function or change their behaviors, but it does not change who they truly are in their faith.
Q: What is the best thing a congregation can do to support those in its midst who are called on to be caregivers for such loved ones?
A: Provide breaks for them: Bring a meal, grocery shop for them, take a walk with them or stay with their loved one while they take a walk or a drive. Not judging how a person cares for their loved one is also important. Offering senior care resources and information is helpful. Keeping senior care resources and information at the church and available for people to pick up is helpful.
Q: Is there training, counseling, support available here?
A: Moody Methodist Church has Libbie’s Place Senior Day program and our Caregiver Connection group that meets at OLLI on the first Wednesday monthly at 12:15 p.m. Also the GriefShare group meets weekly at Moody Methodist as a support group for those who have lost a loved one. The Alzheimer’s Association has resources, information and education available throughout the year. UTMB Geriatrics Clinic offers a three-hour educational class for Caregivers of Persons with Memory Loss each month. The Robbie Farmer Memorial Library at Moody Methodist has many books on caregiving from a spiritual perspective and information about Alzheimer’s.
Galveston’s Armin Cantini is helping The Alzheimer’s Association with an upcoming event to help dementia sufferers and their caregivers.
If you would like to join with friends and family from throughout the Bay Area on Oct. 8 for The Walk to End Alzheimer’s, please visit for Walk information and guidance on www.alz.org resources, he said. You can also call 800-272-3900.