I was my 84-year-old mom’s live-in caregiver until her death last October. We shared a home for the last 10 years of her life because it was helpful for both of us. She needed someone to help carry in the groceries, and I needed a place to live. Like too many other people living with HIV, my journey has involved a financial descent from the middle class into dependence upon government-funded programs to help cover the many thousands of dollars it costs to maintain your health with this disease.
It was easier in the first eight years of our roommate arrangement because Mom could drive, loved her weekly grocery shopping expeditions, and did her own laundry. In the last two years, though, I took care of all the practical aspects of our shared life—the cooking, grocery shopping, housecleaning, laundry, prescription pickup.
Mom had long trusted me to accompany her to medical appointments because, thanks to my own experience with chronic illness, I could speak “medicalese” with the doctors and then translate as needed afterward. This became even more important as the number of complications, specialists, and procedures increased in the last two years of her life.At some point I realized that, all the practical assistance aside, being Mom’s advocate and champion was the most important contribution I could make to her care. I couldn’t have predicted how important my background in HIV-AIDS advocacy would prove to be in my new role as an elder caregiver—or, as I preferred to think of it, simply caring for my beloved mom.
My father had dementia and I was his caregiver. Here’s what I wish I had known
In 2007, I was suddenly plunged into the role of caregiver for my then 75-year-old father, who had vascular dementia. His short-term memory was...