Being an only child adds another dimension to caregiving. Without any siblings to lighten the workload, all the heavy lifting can weigh you down at times—if you let it.
“People on Facebook say, ‘I’m not an only child but my siblings don’t help,’” said Tracy Frenyea, 54, an only child and sole caregiver to her 82-year-old father, Bob. “But if something happens to that person, a sibling has to step in. If something happens to me, I can’t take care of him.”
Frenyea’s dad has been living with prostate cancer for more than a decade, has diabetes and a general loss of stamina and strength that comes with aging. So, she wears a mask in public and at her full-time job as a college academic advisor. Bob has lived with her for three years, but he only began requiring assistance after a hospitalization in August set him off on a rapid decline.
“My dad’s needs constantly change,” she said. “A month ago, I didn’t need to help him get dressed—now I do.” She wakes him up every morning, checks his blood sugar and manages his three medications. She aligns doctor appointments with her work schedule and, when necessary, utilizes the Family Medical Leave Act to take multiple days off with partial pay.
Help is available
She contacted her local Area Agency on Aging to learn about resources in the community and highly recommends other caregivers do the same. She obtained a list of potential home aides to interview; learned financial assistance for programming is available; became aware of a local support group for caregivers; and was informed of the benefits Medicare provides, which led to her dad receiving physical therapy at home.
“I’m the only one making health care decisions for my dad,” she said. “Sure, I can talk to my friends about it but if they haven’t done this, they don’t know.”
Rima Pande, on the other hand, does. An only child, she was in the ICU with her 71-year-old father, Raj, in 2010, following his second stroke in one month. A retired engineer, he had no chronic health conditions: The strokes came as a shock to everyone. With her mom Harshi “falling apart,” Pande had to decide whether or not to put him on a ventilator.
“His quality of life is not going to be good after this,” the doctor warned. A health care consultant by profession, Pande was unable to process that scenario because a few weeks prior, he had recovered from the first stroke and his prognosis was good.
Decisions are tough to make alone
“At that point, I had to make my own decision. I could feel great about it or terrible about it,” Pande said. “That sense of responsibility weighs more heavily [on an only child] when there’s a crisis.” She chose the ventilator, and he was left paralyzed from the neck down.
“He couldn’t move, gesture, write or do anything,” Pande recalled. “He couldn’t speak. All he had was expressions and the ability to eat.”
But the family got the next two and a half years with him—time they’re grateful for sharing.
He had an undulating bed to prevent bed sores, a full-time home aide to help Harshi lift him, and a PT who visited each day to exercise his muscles.
Harshi served as his full-time caregiver, keeping a sense of normalcy in the house and welcoming friends and family who stopped by to visit. Although he couldn’t communicate, he was included in the conversations, Pande said, and felt the love. She was his part-time caregiver, flying from her home in Boston to India for three weeks of caregiving (her husband was home with their young children) before returning home to work for two months in Boston—repeating the cycle until his death in 2012.
She started keeping a diary of her time caregiving, but watching her father’s myriad expressions throughout the day – happy, sad, frustrated – inspired her to instead write a book, “His Voice,” a first-person narrative of him talking (as Pande imagines he would) about how he’s feeling and key events in the two years following his strokes, dispersed with life experiences that give you an idea of who he was as a person.
“The book is not about telling people what to do,” she said. “It’s about sharing your experiences and letting them get what they get from it.”
She hopes readers pause to reflect on their own caregiving, take time to connect with their parents and treat the older adults in their lives with empathy and kindness.
Among Pande’s tips for caregivers who are only children:
- Find the joy in caregiving.
- Have friends you can rely on. If you don’t, start building those relationships.
- Maintain a sense of normalcy in the house.
- Find humor in situations.
- Don’t infantilize your parents. Let them make their own decisions.
Caregiving has taught Frenyea to be more present and enjoy getting to know her father more as a person now than she did in her youth.
“It’s about appreciating this time in your life, even though it’s really, really hard,” she said.
Her advice to fellow caregivers:
- Be prepared for anything.
- Adjust your expectations.
- Be OK with caregiving for the opposite gender.
- Focus on self-care.
- Know you’re doing the best you can.
Caregiving as an only child may not be easy, but these caregivers prove that heavy lifting makes you stronger.