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Managing The Stress ~ Making The Decisions ~ Discovering The Meaning |
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Caregiving |
Solutions To Your Caregiving Situations Throughout Your Caregiving Years |
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Life After Caregiving Learning to Move Forward After the Loss Sharon Roberts and her husband moved into their new home, a home they had built with a shared living arrangement, for Sharon's mom, in mind. Her mother enjoyed two bedrooms and a bath on one side of the second-floor hallway. Sharon and her husband enjoyed their master bedroom on the other side. The three lived parallel lives under one roof. Until Alzheimer's disease moved in eight years later. Sharon and her husband absorbed her mother's increasing care needs over time without really realizing it. Their day began to revolve around the disease process. Sharon, a gerontologist with Health Department and Community Health Center in Lake County, Ill., continued to work full-time; her husband was retired. Prior to her diagnosis, her mother cooked for herself; by the time Sharon arrived home from work, her mother had already eaten dinner, cleaned up after dinner and retired to her room to watch her favorite T.V. But, then Sharon would return home to find the same pan on the stove, night after night. It seemed her mother would only cook one type of dinner for herself: A hamburger. It dawned on Sharon that her mother prepared herself a hamburger night after night because that was the only meal her mother remembered how to prepare. And, that was the beginning of the adjustment. Dinnertime became a shared meal (hamburgers became a three-time-a-week staple Sharon and her husband-a huge change for the cooking aficionados) and the struggle became convincing her mother to wait to eat until she returned home. "Every night I called home to tell her: I'm on my way home. What would you like to dinner? And every night she would ask me: Oh, are you cooking?," Sharon remembers. As the disease progressed, Sharon found an adult day center for her mother to attend three days a week for four hours. The adjustment was difficult for her mom ("I spent a lot of time with her at the center," Sharon says), but once she adjusted, she began to enjoy the center. "It was a lifeline for her," Sharon says. "She loved parties and she loved people-and the center provided those things for her." Sharon's mom packed her lunch when she attend the center, but Sharon made sure she had what she needed for lunch, including sandwich bread and ham. And, because sometimes her mother didn't believe that she needed to wait for Sharon to have dinner and because Sharon was never sure if her mother ate (and her mother's weight loss made her doubt the reality of the dinner-time meal her mother insisted that she had eaten), another ritual began: 8 p.m. milkshakes packed with 600 calories of fruit and supplements. They worked: Her mother regained her fighting weight of 120 lbs. The three had settled into their routine-until her mother became seriously ill the day after this past Thanksgiving. With the help of Hospice and 24-hour help, Sharon was able to care for her mom at home. Sharon chose to hire 24-hour care after carefully considering the reality of the situation. She asked herself: Am I good to my mom if I'm exhausted? Knowing she wasn't, she hired the help. And, she hired help not to provide hands-on care to her mom, but to notify her of her mother's needs so she herself could attend to them; she wanted to be able to sleep at night and eat dinner downstairs, knowing that she could relax for a few minutes because the caregivers would notify her if she was needed. Even as a nurse, Sharon found herself sometimes unsure if she was doing everything possible for her mom. The day before her mom died, Sharon called the Hospice nurse, asking her to stop by for an assessment. After the assessment, the nurse told Sharon: You're not missing anything. That thumbs-up from the Hospice nurse was very comforting to Sharon; her mom died comfortably at home on December 6, 2003. "I am so glad I had arranged her funeral ahead of time. All I had to do was choose the flowers and a song," Sharon says. Returning home after the funeral, the tiredness hit. And, it was a tiredness that lasted. "I slept twelve hours for several weekends," she says. And, it's another adjustment for her and her husband. Her husband recently said: "I don't have to watch Grandma make the coffee every morning." Sharon adds: "I'm only doing three loads of laundry instead of five. I don't have to buy the ham or the decaf coffee at the grocery store. "It's almost like being fired from a job, the caregiving became so much of our life pattern," Sharon says. Recently, Sharon and her husband have enjoyed two weekends out-of-town with her daughter and her family (including three grandsons)-something that just wasn't possible before. She and her husband also took a good look at their large home and wondered if it was still the home that met their needs. They decided it was-but also decided to investment in redecorating. As for her mother's rooms, Sharon closed the doors and has left the rooms as they are; "there's no urgency", she says. Sharon is learning about the transition from the caregiving role, but she recognizes that she does have another current caregiving responsibility: Her 57-year-old sister, who lives on the West Coast, had a stroke last month. "We don't caregive in isolation," Sharon says, meaning that many primary family caregivers find themselves at the same time in a secondary caregiving role. Having just experienced the intensity of caring for her mother makes Sharon careful about the time she allots to other things. She speaks to her sister by phone each evening. She could have flown to her sister's for a visit, but she recognizes that she's just as effective on the phone. "Once you get off a fast train, it's easy to get on the next fast train," she says, suggesting instead that perhaps the next slow train is the best one to take. She's following the one-year rule, which says to wait one year after a highly stressful situation to make big decisions. "This year is the time to readjust, re-think and put closure on the experience," she says. And, she's using the time to put her affairs in order. "We don't want to leave our kids a mess," she says. Sharon also has learned to say "No" by saying, "I can't do that right now". She's found the language change to be empowering. And, she's given herself permission to abide by her own timeframe-she's still working on sending thank you notes, taking down the Christmas decorations, and re-entering social activities. Recently, she and her husband had hamburgers for dinner-the first hamburgers they've had since her mother died. The hamburgers brought back great memories. Putting the Pieces of the Puzzle Together |
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