Alzheimer’s Association Offers Hope to Caregivers

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alzheimers association caregiver residentFor the past thirteen years, I have been answering the Helpline at the Greater Maryland Chapter of the Alzheimer’s Association. It is one of the most important jobs I have ever had. When I come to the office each Thursday morning, I am greeted by caring staff members, who have helped me grow as a counselor over the years. Each week I know that I have connected with caregivers because I, too, have walked the twisted, bumpy, difficult road of the Alzheimer’s journey.

In 1964, my mother-in-law was diagnosed with dementia. In those days, the doctors said the disease was caused by hardening of the arteries in the brain. Because of the way her disease progressed, today her diagnosis would most likely be vascular dementia and Alzheimer’s disease. I took care of my mother-in-law-who was also one of my best friends-for the last four years of her life. I learned to prevent or circumvent her difficult behaviors. The experience was invaluable.

In the early 80s, my husband, John, and his sister, Ellen, began exhibiting behaviors that caused Ellen to ask her brother, “John, do you think we are getting what Mother had?”

Perhaps knowing what to expect made it a bit easier for us all. By 1990, I was caring for John and Ellen, who both had Alzheimer’s disease. Ellen was living in Richmond in an assisted living facility. John and I traveled from Baltimore to make weekend visits twice a month. I learned about long-distance caregiving.

In 1992, I moved Ellen to a nursing home close to me; John started daycare. I began attending two support groups. They were my life-line to sanity. I learned, and I laughed. I met wonderful people at Ellen’s Alzheimer’s unit, at John’s daycare, and at my support groups.

Soon, I was a facilitator at both support groups and began my work at the Alzheimer’s office. When John and Ellen died within two months of each other in 1998, I continued my work with the Alzheimer’s Association.

Later, Ellen Young, author of Between Two Worlds: Special Moments of Alzheimer’s and Dementia, suggested we work together on a book dealing with Alzheimer’s disease and denial. I enthusiastically agreed. I knew from my personal experience with the disease, and my work with the Helpline, what a serious problem denial can be for the caregivers of Alzheimer’s sufferers. Denial can dog our footsteps all through the Alzheimer’s Journey. Caregivers find themselves thinking: “There’s nothing wrong with Dad. He’s just getting older.” They may even say things like: “Mom isn’t ready for daycare,” “Dad can still drive, can’t he?,” or “Nursing home. Never!”

Our book, Mom’s OK She Just Forgets: The Alzheimer’s Journey from Denial to Acceptance, will be out in the fall of 2006. We want this book to be a comforting companion for families and caregivers, enabling them to gradually move from denial to healthy, healing acceptance. We want caregivers to learn a new approach; one that will bring success in dealing with the problems of Alzheimer’s disease.

Through this book, I have been able to share much of the hard-earned knowledge I have gained by living with Alzheimer’s disease for years. It also reflects the power of the love I have known in my relationships with my friends at the Alzheimer’s Association.

Evelyn McLay

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