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My sensitivity to the plight of family caregivers developed over the past few years as I acquired more and more day-to-day responsibility for my aging parents. As a nurse, I had always appreciated the need to support family members who assume primary responsibility for supporting aged or chronically ill family members. Until recently, however, I did not fully understand the implications of “family caregiving” until I assumed the role personally.
As the only daughter in my family, I anticipated and accepted that many of the family caregiving responsibilities would fall on me during my parents' latter days. In my mind, that meant assuring my parents had a safe and comfortable place to live in their last days, assuring their nutritional needs were met, finding providers who could meet their geriatric medical needs, and continuing as much as possible the usual holiday and family celebrations.
For a few years, this was in fact my caregiving role. My brother (who lives three hours away from me) and I relocated my parents to an independent living facility close to my home. For my parents, that meant downsizing: letting go of “treasures” that had been part of my parents' home for years, saying goodbye to close friends and familiar places, relocating four hours away to a new area, establishing “new” norms, and settling into a new routine. My brother assisted with the financial aspects of managing my parents' affairs. I was responsible for helping to locate new healthcare providers and checking on my parents every few weeks to make sure they were enjoying settling into their new home. And they did, for a few years.
My dad's health had declined enough that my mom had to take over the driving responsibilities, which she was able to do for the first few years of relocation. We do not have mass transit in Texas, so driving is a way of life. But over time, my brother and I began to notice my mom was beginning to show signs of dementia, including getting lost a few times in her neighborhood when driving. A minor accident in the grocery store parking lot, my mother's fault, was enough to convince both of my parents it was time to sell their car. That was the right decision, but now I was responsible for all their transportation. That meant frequent trips to the grocery store, healthcare provider visits, and errands. My brother made the three hour trip to see my parents frequently in order to give me a rest and support my parents as much as possible from afar, but I was the “first call” for all of my parents' needs.
My mom had always been a phenomenal cook, but as her dementia progressed, housekeeping, shopping, and cooking became too confusing and stressful. Meals were provided in a beautiful dining room at the independent living facility, but for various reasons, my parents declined to use those facilities. So my brother and I began the task of finding in-home care providers. All the while, I accommodated errands related to my parents' household and personal needs into my daily schedule, cooking many of their meals as well as taking numerous phone calls from my mom who was becoming more and more anxious as her dementia progressed. I would often have to leave work to go calm my mom and assess the reality of concerns she was reporting. That resulted in long work days to meet all of my responsibilities. I was exhausted and frustrated, not with my parents, but with the challenges of caring for them on top of my other obligations.
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