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Life After Caregivng
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Legacy of Caregiving
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Home Becomes a Hospice
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Life After Caregivng
by Linda Owen
What do caregivers do when their loved ones die? The aftermath can be very difficult, leaving caregivers feeling lost, lonely, and useless. Many caregivers commit themselves so totally to caring for others that they may give up their jobs, their independence, and very often family and friends. How do they pick up the pieces and start to live again?
Florence (Flo) Baurys learned the hard way to handle the sense of loss after her caregiving days were over. She had faced the double sorrow of losing her mother to Alzheimer's in 1991 and her husband Tom to cancer in 2003. To Flo, a registered nurse, it seemed a monumental task to create a new life. However, starting over was done in baby steps, with one activity or minor change each day.
"It was such a difficult time," Flo admits. "Full time caregiving was exhausting. When Mom's battle was over, guilt rushed in, making me wonder what more I could have done or what I could have done differently."
The first thing Flo did was write a book relating her experience and addressing those questions. A Time for Alzheimer's is Florence Baurys' account of how Alzheimer's stole her mother from her. As she typed the story day after day, she found that writing was therapeutic.
In A Time for Alzheimer's, Flo chronicles her mother's escalating 7-year decline into dementia, beginning with a telephone conversation in 1983 when her confused parent did not know her. Within a few years, her mother was unable to drive even a few blocks without becoming lost. She neglected her personal grooming. One day, Flo watched her mother wash grapes and then plop them into the dog's food-splattered bowl to eat them. At first Baurys wanted to laugh, wanting to believe that this was one of her mother's jokes; but one look into her parent's deep, empty eyes was enough to tell her that the mother she loved was gone.
Family Conflict
"I thought I'd be the best caregiver of all with five children and my nursing experience, but I was not prepared for all the turmoil Alzheimer's caused my family," Flo remembers. "My siblings and I disagreed so many times about my mother's care. My children and husband were never comfortable with her in our home."
Uprooted from her Pennsylvania home, Flo's mother had a hard time adjusting. She had frequent mood changes and at times was very aggressive. Those were hard times for Flo's children. They often felt hurt and rejected by their grandmother. It was difficult to be scolded for things they didn't do, by someone they didn't know anymore.
In writing about the experience, Flo handled the hard times without forgetting the joy that her mother brought to her life—something she believes all caregivers must do in order to begin a new life. Furthermore, Flo stresses the importance of sharing one's grief. After five turbulent years of caring for her mother, Flo was unable to acknowledge her own grief until the anniversary of her mother's death. True mourning, she discovered, refreshed her soul.
"It takes a year to go through the grief process. When Mom died, I remember thinking, 'Thank goodness it's over,' but I didn't let myself grieve. I didn't cry and got depressed over the holidays. Eventually, I saw a counselor. After a productive session I finally cried gut-wrenching tears for the mother I had loved during my childhood. Then I went through the steps of the grief process."
Caregiving Again
Just after Flo had settled into a comfortable routine again, her husband Tom was diagnosed with cancer in the lung, which quickly spread to his brain. Once again, Florence was a caregiver until the devastating illness took his life.
"Several of my friends never got beyond the grieving process," Flo adds. "Their world grew smaller as they stayed within the confines of their comfort zone; they were surrounded by memories of how life used to be. They lived out the remainder of their lives in loneliness. I did not want to do that—so I was determined to start over."
Moving to a new location in 2004 was a tough decision, and Flo did not leave everything behind without tears. However, after she settled into a home in Waxahachie, TX, she admitted, "I felt so free. I no longer had to worry about a schedule that fit someone else's life. I ate and slept when I wanted to—and didn't do either if I didn't want to. If I wanted to take off for an adventure, I didn't worry about getting back at a certain time."
Flo advises former caregivers to join organizations such as churches or to get a job. "As a young woman, I loved to dance, something my spouse of 44 years did not share with me. So, one of the first things I did after my move was to join a line-dancing group at the local YMCA. I also started doing volunteer work at the Ellis County Children's Advocacy Center. I've always loved children, so doing something to help them gave me a feeling of worth—something I needed after my harrowing losses."
Although Flo insists that she was not looking for another life partner, she met Weldon Phillips at her new church and they were married ten months later. Weldon, 69, who had also lost his spouse to lung cancer, fills Flo's days with fun and love. "We act—and feel—like a couple of teenagers," she says.
"When I moved, I expected to find a small home where I could be as independent as possible until my end days," she muses. "Now my dream is to live to a ripe old age so I can spend more time with Weldon."
If there is one message Florence Phillips would like to share with all caregivers, it's this: "You'll survive—and be better for it."
