“When Goodbye Begins: Sharing life with Dementia”
by Dorothy Webb
After years as a loving and kind husband, John seemed to change. He would have angry outbursts, vocal only, but nonetheless frightening to his wife, Dorothy. At first she attributed the anger to trivial matters and simple stress from life’s grief, his parents passing, problems with one son.
Then Dorothy remembers the trip they took. John became confused, disoriented and almost ran off the road while distracted. She had mentioned it to the first doctor but he’d brushed it off as nothing more than forgetfulness.
Now, from the Specialist she learns the “real” diagnosis is –Dementia. Dorothy felt slapped in the face with a million questions. The doctor’s recommendation to “Go home and enjoy life,” had stunned her.
Dorothy and John had enjoyed life up till now. They’d become partners later in life. Friends in their youth, they reunited after John was widowed and Dorothy divorced. They’d worked hard during the past ten years together to merge two families and create a sound bond and good marriage.
As the truth of the doctor’s words settle in, Dorothy feels overwhelmed with all that “needs to be done.” She can’t seem to do any of it quickly enough. Then the crying began– and Dorothy knew true grief.
Dorothy begins a journal and tracks her thoughts and emotions as she enters the role of caregiver. At first, writing is an outlet for her own stress, but eventually Dorothy shares her writings with others. When she is asked to speak about Dementia, Dorothy only hesitates a moment. At this time in her life, the speaking engagements are also an outlet for stress and become something she truly enjoys. As an added benefit, Dorothy gains courage by sharing her own experiences.
At one speaking engagement a caregiver approached and shook Dorothy’s hand with much gratitude as she said, “Thank you. Thank you. What you said is exactly how I have felt, but I couldn’t put into words.” Dorothy was delighted. She liked this role as advocate, public speaker and sharing what she learned with others.
Dorothy is able to describe her husbands battle with dementia and offer guides to help other caregivers to cope as well. She likens dementia to the shades of sunset: “people believe your love grows stronger as the illness progresses and your mate becomes more dependent. And in some ways, you do. But Mostly,” Dorothy says, “it’s like a sunset overcast by clouds, no longer a romantic love. Fatigue, stress and heartbreak gradually erode the romantic love and instead the caregiver wonders if they can simply make the distance.”
Today, Dorothy and John have started a support group for other families who cope with the same diagnosis. They have wonderful meetings and travels together. They help each other to accept their fate and enjoy the wonderful times they have together. Dorothy writes and lectures and helps other caregivers understand all they will face and do in the days ahead: getting legal affairs in order, moving if necessary due to transportation, finding support groups and assistance from Alzheimer’s Associations.
They keep a diary each day and plan their days activity. Their life is one of structure and for someone with dementia that is always best.
Each morning, John asks, “What are we doing today.” With a structured environment their days are happy and pleasurable for Dorothy and John. Each day has a purpose, as Dorothy says, “with something intentional and something enjoyable.” And then it is forgotten, to begin again tomorrow.
Dorothy warns, “we must be courageous, we must not yearn for the person we once had, not fall apart and cry and grieve. Instead, we grieve silently,” she says. “Then we greet the new person who is a stranger, and we adjust to what he or she needs and on and on it goes, subtly without us even realizing it at times.”