Lessons Learned As A Caregiver

The Health Care System Often Fails Elders

I spent over forty years working in the Aging Network, and I thought I understood how our care delivery system worked for seniors. That there were serious challenges getting the services needed to remain at home was a given. Affordability was a major concern for many. I knew that elders were often faced with the indignities that came along with ageism. However, it wasn’t until I had to arrange for care for an aunt and uncle during the last two years of their lives that I fully realized just how bad things really were.

My aunt and uncle did not have any children. As they got older they had asked me to be their health care proxy and durable power of attorney so that if the time came they couldn’t manage their finances and health care, I could help them. Little did I know what that would eventually entail.

My uncle in his early eighties was diagnosed with the beginning stages of dementia, and his physical health declined as well. My aunt was able to successfully care for him at home until her she herself became ill. This is a very common occurrence among elder caregivers. My aunt made the decision to place my uncle in a nursing home at least temporarily until she recovered. While there his physical decline was so dramatic that while visiting him at the home with my mother, his sister, we thought we were sent to the wrong room because he was unrecognizable.

After a hospitalization for a major heart attack, my aunt wound up in the same nursing home as my uncle. After two months there, my aunt was depressed and disheartened, and told me she just wanted to come home, and bring her husband with her. Wanting to honor their wishes, I set to work to make it happen. Many obstacles were placed in my way. I had to argue with nursing home staff, “they won’t be safe at home”; home health agencies, five stated they would not take them on as patients if they went home; and social workers, “it wouldn’t be prudent.” This was even though my plan was to put in private paid caregivers twenty-four hours a day, seven days a week. That kind of care and attention would far surpass any that they were receiving in the nursing home. In the end, I prevailed with the aid of a sympathetic doctor, who acknowledged that my aunt and even my uncle despite his…

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