As an only child, I'd long accepted that I'd be my parents' caregiver. But I thought it'd happen at 50, not 37. When my mother’s random ER visit turned into an extended, near-fatal ICU stay, I took on that role for her as well as for my father, who has dementia. Caring for him was a challenge that included making sure he was monitored 24/7 due to manic episodes, usually overnight, as a result of his dementia. In addition, I was still working and checking on my mother around-the-clock.
The future had quickly become the present.
Here’s a good time to tell you my family is awesome. I have a half-sister (my dad’s daughter who is older and was raised separately from me) in the city, and between her, my aunt and a family friend, we made it work. Still, I was the go-to person for decisions and next steps. But as the days passed, I began to feel alone and even cheated because I didn’t have a large group of siblings to consult or with whom to share the labor of caretaking, especially for my mother. And while usually one or two siblings in a family will assume most of the responsibility for parental care, there’s a distinction among siblings who share only one parent. A half-sibling may care for your parent but will not be expected to assume responsibility for him or her as their own.
My mother returned home from the hospital for a long-term recovery and immediately showed me their “business” (i.e., medical details, insurance policies, funeral arrangements, etc.). The conversation had fallen flat years before, but in that moment, I was an active participant. I wanted to know everything possible to take better care of them in the future.
As my mom was recovering, my dad was declining. The decision to admit him to a nursing facility permanently was both inevitable and necessary. We tried to keep my dad at home, following the unspoken role that “Black folks don’t put their parents in nursing homes” and our desire to take care of our loved ones ourselves. We had a revolving team of home health providers, brought in adjustable beds, and purchased home-aid equipment and items.
The unfortunate long-term effects of caregiving are emotional and physical wear and tear. If you are not a health care professional, you cannot care for someone with a progressive illness without consequences to them or yourself. The transition was exhausting. Once the pendulum swung, I felt that pang of loneliness and only-child syndrome again.
Then, during a phone chat, a friend offered to run errands for my parents after work, which had become my daily responsibility. “All you have to do is tell me when,” she said. My eyes watered because I’d never considered asking anyone for something so simple, yet so helpful. How much harder had things been because I was reluctant to ask friends and family for what they should do … show up?
Even though the responsibility of my parents rested solely with me, I realized I wasn’t alone and never had been. My pride and my desire to be strong kept me from embracing the village that I’d had all along through extended family and friends.
Whether it was bringing in dinner, picking up meds from the pharmacy or sitting with my dad to give me a chance to sleep in my own bed or take care of work issues, that village was there. Having them made me stronger. It made us all stronger.
The most important thing only children can do is be prepared and open to receive help. Have the hard conversations about how you will navigate long-term illness and even death with your parents now. Keep resources at your fingertips like AARP’s
Prepare to Care Guide and determine your plan for support. You never know when you will need it.
December 14, 2018