At FCA, we always need help with mailings, filing, organizing the library, tabulating survey results and sorting out our many materials, so when Sara Kruse approached FCA’s Program Director Donna Schempp to ask if we needed volunteer help, we were thrilled.
Sara started coming to the office once a week and soon became invaluable to the workings of FCA. She has helped us for the past three years, but she is now moving to the Northernmost part of California, and will be sorely missed around the office.
Before she left, Sara related her story of caregiving. She was formerly a client of FCA’s. She says that the support she received helped her to get through the challenges of caring for her mother, and that is why she wanted to give back through volunteer work. Many of the themes of her story will resonate with others of you who are also family caregivers.
Sara and her brother cared for her mother for many years and through varying illnesses before dementia set in. Finally, her behavior became difficult to deal with and Sara went to help her brother, who had been the primary caregiver for her mother. Problems multiplied and after her mother actually ate a thermometer, she ended up in the hospital. While there, her mother fell and broke her pelvis and then developed congestive heart failure. Sara soon learned that patients who have dementia need their families to be on constant alert to make sure their loved ones get proper care in the hospital. It was then that Sara realized that her mother was going to need full-time care and moved her mother to California to live with her. Over the next few years, her mother became incontinent, had compression fractures due to osteoporosis, and was agitated due to her dementia.
Although dealing with her own disability, Sara took on the care of her mother for two years, and continued to care for her for another year in a nursing home after her mother broke her thigh and was unable to walk again. As when her mother was in the hospital, she found her mother needed a constant advocate in the nursing home to guarantee she was well cared for.
During that time, Sara experienced some common consequences of caregiving. She said the first thing was that she ran up credit card debt in order to cover her own expenses while caring for her mother. Her brother helped with some finances, which meant he was unable to retire as they needed his earning power to cover the bills.
Second, she developed stress-related illnesses, such as high blood pressure, weight gain, depression, stomach distress and disturbed sleep. Meanwhile, she was still having surgeries for her own disability. Navigating the maze of getting Medi-Cal for her mother when she went to the nursing home, she says, was another nightmare.
Like others who have had to put their lives on hold while caregiving, Sara has had to deal with paying very high premiums for health insurance. After her COBRA plan expired, she had to use the California Major Medical Plan, and her monthly insurance costs rose from $380 per month to more than $900 per month. Having a pre-existing condition makes getting medical insurance very difficult if you are not working for a company. Also, she did not pay into social security during that time, thus reducing her monthly social security income now that she is 65.
There are a few things Sara feels all caregivers go through. The first is guilt. She says she can still remember all those little things she didn’t do right, and the times that she was impatient and blamed herself for her mother’s problems.
Second is isolation. Sara says all caregivers need help, whether from family, friends or other social supports. Caregivers don’t need to protect others from their complaints—sometimes complaining is very therapeutic.
Third is support. This means not being criticized by others, having others help in the caregiving and just getting understanding. Respite care is also a part of this. Luckily, Sara and her brother worked well together—but Sara knows this isn’t true for all families.
As Sara moves into her new home near the ocean, we wish her tranquility and good health. We thank her for her expert skills, her sense of humor and her willingness to tackle any task. We were fortunate in having someone who not only was familiar with the challenges of caregiving, but with the challenges of office work too! And we are actively searching for volunteers to fill the space left by her absence.
If you are interested in contributing your office skills to FCA, we’d love to talk to you! Please call Will Reiter at (800) 445-8106.
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