Finding Out the Importance of Professional Home Caregiving the Hard Way
It wasn't until a few weeks in that I realized the impact caring for my ailing mother at her NJ home was having on me. I felt exhausted, but couldn't seem to sleep more than a few hours at a time. My thoughts were foggy; and I was anxious: my mom would ring a bell anytime she needed something, and because she was on many medications—and in a lot of pain—my father and I were never quite sure when that ring would come. My mom, 69, had been in hospice care with end-stage heart disease at a nearby hospital, but we'd made the decision as a family—my dad, brothers, sisters-in-law, and me—to bring her home so that she could spend her remaining days in the same split-level house where she'd lived the last 44 years, raised her three kids since we were babies; and hosted holiday gatherings and homemade pizza parties. We all agreed that she deserved to be in the place where she felt the most comfortable and among the people who knew her best.
Still, one thing I didn't know was what a huge mental and emotional toll home caregiving can be. Although I told my dad that I could stay in NJ and assist him in caring for my mom, I still had bills to pay back in San Francisco—where I live—so continued working as a freelance writer as much as possible, but it was more difficult than I could have imagined. Our days revolved around giving my mom her meds; changing her sheets, clothes, and bedpans; feeding and keeping her hydrated; and the things we most wanted to do, like simply sitting with her and brushing her hair (which was one of her favorite things). There was a daily influx of friends and relatives to my parents' living room, where we'd set up her hospital bed, and my dad and I usually hosted them in turns or together—at the same time keeping a watchful eye on my mom and making sure she was getting the rest she needed. However, what they meant to be kind words (“She looks good!” Or, “We were expecting to find her a lot worse!”) just reiterated our feeling of loneliness. My mother was terminally ill and there was nothing we could do to change it.
One night my older brother came over to sit with my mom while my dad and I went to my nephew's cross-country match. It was the first time we'd left the house in weeks, and we dressed up like we were on our way to a fancy dinner—we'd almost forgotten what it was like to go out. Another particularly good day for my mom, my dad offered to take over the caregiving reigns alone, so my younger brother and I drove down the Jersey Shore for some sea-air. I posted pictures of our outing on Facebook, and relatives immediately questioned why I wasn't back at my parents' place assisting my dad. As days turned into weeks, the pressure to be the perfect daughter began weighing heavily on me, and it was soon obvious: my own life was in trouble.
It's not easy caring for a loved one as their physical and cognitive mobilities decrease. It's even harder when you have no expert training, and are torn between managing your own needs—such as bills, relationships, and physical, mental, and emotional well-being—and that of a person that means the world to you. I mistakenly thought I could do both.
When I finally made the impossible decision to return to San Francisco after four weeks, it came with the caveat that we'd have to move my mom into an assisted-living facility. As a single 41-year-old, I could no longer afford to be without steady work, and the life I'd left behind needed caregiving of its own. It's a choice I still often grapple with: if we'd decided on a dedicated assortment of professional home healthcare from the beginning (we did have basic home healthcare, though it was always based on the notion that I'd be assisting), I may not have had to watch my mom leave her home for the very last time, or live with the fact that I made that decision for her. Instead I could have spent more days just sitting alongside her, spending quality time together and giving my mom the love she needed and deserved, while also giving myself the same.