Learning How to Cope with a Life Changed by Alzheimer’s Disease

by Frank Fuerst

My wife, June, was in her forties when Saeko, a holiday guest, described her as the perfect role model for a woman who wanted to have both a career and a family. Little did we realize that early-onset Alzheimer’s disease was already slowly creeping into our lives.

For two and one-half years, doctors attributed a dramatic change in June’s behavior alternately to menopause or depression. With our inability to understand what was happening, I was the one who was becoming depressed. Only after a neuro-psychiatrist conducted an additional six months of tests did we get a diagnosis that was later confirmed by the National Institute on Aging. Shortly after that, I took an early retirement to take care of June so we could spend a few pleasurable companionship years together.

June had always been the family nurse. She had great sympathy and empathy. She would have been the perfect caregiver. I lived in a business world of fast changing technology and felt ill-equipped to be a caregiver. Spirituality, creativity, initiative, determination and devotion to June, however, became the foundation on which I began building caregiver skills. Based on everything that I had heard and read, caring for a family member full-time was a nearly impossible task that got harder every year. The path that I followed, however, got easier as time went on. So, what was different about my approach?

Early on, I revisited my spiritual roots and prayer became one of four cornerstones. Some things that I prayed for were wisdom, patience, and mental toughness. I needed all of those traits in abundance because I had more than my share of negative emotions and other challenges. Since the disease marched steadily onward, June was not going to change, which meant that I must. For example, to release anger, I vented it in a harmless way by writing on handy legal pads about the cause of my anger and a possible solution. By putting my thoughts in writing, I found that it was easier to overcome my inertia and act on a solution.

Another challenge, fatigue, affected me physically and mentally. One of my solutions was to use a day-care facility (and eventually a nursing home) to give me some respite from continuous caregiving. Although I later used more than a week to vacation with my family, even a weekend of respite gave me much greater energy. This became a second cornerstone.

Dealing with many new things, I also isolated myself from people other than family members. I knew, however, that I needed to share thoughts and feelings with others, so I joined a support group. It provided the companionship that I had lost and became a third cornerstone.

Because I now had a plan to help myself, I could take time to think about better helping June. So I prayed for empathy, lots of empathy. To gain it required me to visualize how June was feeling, especially how she wanted me to provide care. During her most content part of the day—as she watched song videos and had a favorite juice—I wrote her imagined thoughts in my journal. After several months, I had almost forty ideas. I boiled these down to the ten most important. These became my "care with dignity" rules and helped me to fulfill her imagined wishes.

Nothing on the list was difficult. For example, three things I thought she would say were for me to allow her to use her abilities fully and to have areas where she could do as she pleased, not to reduce her abilities with an overload of drugs or for me to discuss her in front of others as though she didn't exist and to treat her gently, with loving care and with respect and dignity.

These rules were the fourth and last cornerstone and affected me as well as June. They allowed me to become more compassionate. In time, I became kinder, gentler and a more fully-developed person. Other changes were also coming into my life. After realizing that my story was unique, I converted my four file drawers of information into a manuscript so others could benefit from my experience. As soon as my first chapter was finished, it won prizes in both contests I entered. After publication, Alzheimer’s Care with Dignity (Headline Books, 2007) won multiple prizes.

Then a minister from Kirkwood, Missouri heard me being interviewed by Don Marsh on St. Louis Public Radio. The minister said he liked my spiritual message and asked me to give the keynote talk at a conference for caregivers. He also asked if I would consider giving both Sunday sermons at his church.

Since giving "The Power of Prayer" that day, I have completed a course to become a lay speaker and look forward to giving my latest sermon, "The Fifteenth Commandment."

About Frank Fuerst:

Frank Fuerst was born and raised in St. Louis and graduated from Washington University. He flew for three years in the United States Air Force, during which time he and his wife had two of their three children. Then he spent a career in marketing and education with IBM. When his wife, June, was diagnosed with Alzheimer's, he took an early retirement and cared for her at home until she died.

Afterwards, he worked full-time to prevent development of the headwaters of a Potomac River tributary. He is now a prize-winning writer and poet and lives in the mid-Atlantic area near three of his five grandchildren, one of whom he home-schools.

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