Thursday, Oct. 19, 2017 -- When my mother was first diagnosed with Alzheimer’s disease, my father embraced the role of a “solo” caregiver. In one of our many phone conversations he explained, “Your mother was there for me during my drinking years (He was a recovering alcoholic.), now it’s my turn to be there for her.” His rationale made perfect sense, but a few years after the diagnosis it became clear that he would need help to care for my mother. In fact, he needed an entire team to care for her.
Without realizing it, my father began assembling a caregiving team when he and my mother made their initial visit to the neurologist. The doctor and his staff became the first members of the team. Before long, my father realized that he could not call the doctor to answer every question he had, so they referred him to the local chapter of the Alzheimer’s Association. They provided him with information about the disease and local services such as support groups.
My brother, sister and I soon became informal members of the care team as well. Living in Santa Fe, NM, my parents began to depend more and more on frequent phone conversations for emotional support and guidance. These calls became particularly important to my father after conversations with my mother became challenging due to the progression of the disease. Members of their church also became informal members of the caregiving team. My mother worked with a group of women who met twice a month in preparation for the annual bazar. As her dementia progressed, the women adapted the tasks that they assigned to my mother so that they met her abilities. After several years, my mother was unable to help with any of the preparations. At this point, one of the women would suggest, “Eileen I think the others would like some tea. Do you want to come with me to the kitchen and prepare some for them?” A year or so later they would simply invite her to visit the flowers in the church garden. These women provided activities that kept my mother content and engaged, while giving my father a much needed respite break.
When my mother was first diagnosed with Alzheimer’s, my father was hopeful that the disease would not progress or that she might recover; but when he understood that these hopes were unrealistic, he began to plan for the future. He worked with a financial planner and their bank to include my siblings and me on their accounts. He met with an eldercare attorney who provided guidance for a reverse mortgage and eventually helped him apply for Medicaid when it became clear that my mother would need residential care down the road.
Persuading my father to hire someone to provide in-home care was challenging. He did not like the idea of having strangers in their home and my mother wanted no part of people coming to “babysit” her. Even after I offered to help with the cost of in-home care, my father fired the first two people I hired. “Your mother gets upset,” he explained. After a few months we tried a new approach. I encouraged my father to tell my mother that he had invited a woman, who was new to Santa Fe, to come to their home for coffee and a visit. He then explained that he did not realize that they were out of coffee. He asked my mother if she would be willing to entertain their guest while my father went to the store. As it turned out, my mother had always loved being a hostess. She was more than willing to entertain the woman. Twice a week this women, who worked for a local homecare agency, stopped by to visit my mother. As long as my mother felt that she was in charge and being a hostess, she was content and my father had some time to himself.
Shortly before he passed away, it was clear that my mother’s caregiving team would need to be available 24 hours a day, so we moved her into residential care. The last four years of her life she had a care team of almost 40 people, who provided the care that my father had once vowed he would provide on his own.
Assembling a caregiving team takes time and patience. Local staff of the Alzheimer’s Association are available to meet with families in person to offer guidance and support in creating a team. They can be reached through their 24-hour Helpline at 1-800-272-3900.
Bill Hinrichs, associate director of programs and services diversity, inclusion & advocacy initiatives, Alzheimer's Association Northeastern New York, 4 Pine West Plaza, Suite 405, Albany, N.Y. 12205. For more information, please call (518) 867-4999.