Chronic Illness

What My Mom (And HIV) Taught Me About Caregiving

When my mother's health declined, I used the skills I had learned from my own chronic illness and the empathy I learned from her to be there for her.

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You don’t know what you’re really made of until you have to take care of someone you love while also taking care of your own serious health condition, too. How do I know? I learned by living it. 

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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.

I refer to the months between September 2017 and May 2018 as “Mom’s medical ordeal.” During that time she suffered repeated bouts of septic drug-resistant bacterial urinary tract infections (UTIs) resulting in hospitalizations followed by rehab. We had the ambulance to our home multiple times when what turned out to be one of the UTIs manifested in what I came to learn is common in older people, a dementia-like state that is frightening to behold. Without warning, Mom would suddenly appear dazed, confused, and very weak.

I was my 84-year-old mom’s live-in caregiver until her death last October… She needed someone to help carry in the groceries, and I needed a place to live.

Unfortunately, the toll of her weakened body meant that what had been Mom’s own chronic conditions—type-2 diabetes, COPD, congestive heart failure, hypertension, and obesity—became acute conditions. She had to start using oxygen. She used a walker to get around our apartment, and rarely went out—usually when I’d take her to one of her various doctors’ appointments. 

I soon realized that my Mom’s longtime primary doctor was not providing proper care to her or the other elders who trusted him for their care. Tasked with finding her new care, I intentionally chose women doctors for all but her cardiologist, because I felt that with all the physical intimacy involved, it was important to respect Mom’s dignity and privacy. Without generalizing about male doctors, I will say that for the first time, Mom had doctors who listened to her and seemed genuinely to care. In their first visit, Mom’s new primary doctor asked, “How long have you been depressed?” She answered, “All my life.” Not one of her doctors, in more than 80 years, had ever asked her that question–let alone offered her treatment for depression.

Not one of her doctors, in more than 80 years, had ever asked her that question–let alone offered her treatment for depression.

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.

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’ve drawn frequently from my understanding that information is power, and silence equals death, as I have worked hard at times to seek and stand up for what I need to keep myself healthy and well. I’ve had to navigate government programs, drive long distances to get to my HIV specialist, and even anger people at the local AIDS service organization by “going around them” to tap my own sources for the information I needed about insurance changes affecting me and my health.

After the terrible seven-month ordeal I set up and coordinated all of the home health aides, visiting nurses, and others from various agencies who came by regularly to check up on Mom. I even got us into a state-funded program for low-income elders that pays a modest daily stipend to a live-in family member caregiver. The $45 per day I was paid for all the days Mom was at home, not in the hospital or rehab, helped a lot because the hardest impact of my caregiving role was economic. As a single, work-from-home freelance writer, my siblings somehow assumed that because I don’t have a “real job” I was therefore available 24/7 to be a live-in caregiver.

My head and heart clashed as my head told me to focus on my own career while my heart yanked me repeatedly by its loyalty and love to Mom. My finances suffered from my inability to give more to the pursuit of more work than the few projects I took on. The “opportunity cost” to me of caring for Mom was significant in part because I couldn’t stay connected to my professional network back in DC. I learned what “out of sight, out of mind” looks like in terms of work I didn’t get.

My head and heart clashed as my head told me to focus on my own career while my heart yanked me repeatedly by its loyalty and love to Mom.

It was challenging when there were times I needed to travel for my advocacy and other work, such as to the 2018 HealtheVoices conference in Chicago. Fortunately, my sister and niece in the local area stepped up and stayed with Mom while I was away, which wasn’t very often.

I first heard of Swiss psychologist Carl Jung’s concept of the “wounded healer” in my early years of reporting on the HIV-AIDS epidemic. I witnessed so many people physically and psychologically ‘wounded’ by the virus caring for others like themselves. Delving into my personal history to write my latest book Stonewall Strong, I certainly knew of my own deep woundedness, from my difficult childhood in an unpredictable household, to the trauma of losing so many I loved to AIDS and cancer, to my own diagnosis with the very disease that had killed so many of them.

I knew that, to contribute to Mom’s care and well-being, I needed to tend to my own wounds. I took care of myself by taking my medications and supplements every day, getting lab work as needed, and keeping all my own doctors’ appointments. I wrote as often as I felt the urge in the journal—these days really a collection of files in my computer—that has been an outlet for my hopes and dreams, and sorrows, for the past 40 years. I worked out at the gym, hiked the wooded trails in eastern Connecticut, and kayaked on Long Island Sound. I communed with nature and poured out my heart (and tears) in prayers I hoped rose to heaven to relieve the sadness and stress in my mind. I vented some of my pain to my Facebook friends and in my Psychology Today “Stonewall Strong” blog.

I was true to my heart, to my deepest values of dependability, duty, generosity, and loyalty, and to the lady who modeled them for me.

I can’t say I took the best care of myself financially because it was a real struggle to be present for Mom and being “out there” trying to generate work for myself.  But—and for me it’s the essential ‘but’—I was true to my heart, to my deepest values of dependability, duty, generosity, and loyalty, and to the lady who modeled them for me.

I continue to grieve for Mom, already more than four months since she passed. My caregiving role is now only a memory. Sometimes it’s a haunting memory when my mind locks onto a painful image of her suffering.