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Small moments of caregiving are most meaningful

June 2007 Enterprise article by Pam Eimers

Caring for someone in the last days, weeks or years of life is challenging. It tests even the most loving individual’s patience and tolerance. It’s physically demanding and emotionally draining. Logistics can be complicated. The commitment can strain all other relationships and disrupt family life and careers.

Yet family caregivers also tell us that the experience of caring for a loved one through this final passage also gave them some of the most meaningful moments of their lives.

“There’s something transformative about physically caring for a parent,” says Carrie Shaw, a Davis resident who helped care for both of her parents during their final weeks of life. “It’s a profound way to show how much you appreciate them and their love.”

Shaw and her sister Sandra Shaw, also of Davis, are among the roughly one-third of hospice caregivers who are adult children caring for a parent.

Shaw recalls the frustration and stress of juggling a job, raising two young boys and traveling to the Bay Area to be with her mother whenever possible. “But it was the only time Mom let me do something that intimate and giving,” she says. “It was powerful. I have lasting, positive memories.”

Some patients have difficulty accepting help with their care, especially from their children. “It’s not in our culture for parents to be on the receiving end of that kind of care,” Shaw says.

It requires a shift in the parent-child relationship that can be equally difficult for both sides to negotiate.

“There was a transition,” Shaw says, explaining the change in the relationship with her mother as her mom’s cancer advanced. “I can’t say when it happened but I realized that I couldn’t depend on her, she was depending on me.” Once through that shift, caring for her mother was very gratifying. “She was no longer telling us what to do,” Shaw laughs. “It went from hard to wonderful.”

Shaw’s father wanted to spare his daughters the duty of caring for him. When he needed a full-time caregiver, they hired one. But as with their mother years before, Shaw, her sister and their families also helped – around the clock during the final days.

“There wasn’t a lot of demonstrative love in our day-to-day lives with Dad,” Shaw says, describing her reserved father. She found the process of swabbing his mouth, changing his bedding, brushing his hair and rubbing lotion into his dry feet to be very comforting. “Doing these intimate things allowed me to love my dad in a way he never would have let me otherwise,” she says.

“It’s important to live in the moment,” says Jody Norton, certified home health aide manager for Yolo Hospice. She emphasizes that while caring for a loved one it’s important to find ways to minimize other responsibilities and, when together, focus on your loved one and the positive aspects of your lives.

“This is the only time you have left with this person – it’s important to find pleasure and peace in the small moments,” she says.

“The hardest thing for me was when I recognized that these special moments would be the last,” Shaw recalls.

She remembers sobbing one day after visiting her mother. “Good-bye Sweet Love,” her mom said, using her pet name for her youngest daughter. “I realized that when she passed away I would never hear that again,” Shaw says.

The final weeks of both parent’s lives were very stressful for Shaw. She was exhausted most of the time. She often felt pulled between her own family’s needs, her job responsibilities and her parent’s needs. But in the midst of it all she relished the tender moments with her parents.

Now, months after her dad’s death, life has settled back into a normal routine.

“It was so satisfying to give to my parents after they had given me so much. It was nice to not be asking anything of them and just to be giving,” Shaw reflects. “It was a wonderful way to honor them.”

 

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Ted Skiera
"I've worked for 20+ years in cardiovascular and oncology nursing, most recently working as a nurse coordinator in cardiovascular research. My work with Yolo Hospice has enabled me to focus all of my acute clinical experiences into caring for patients, and their loved ones, during a most challenging period of their lives."
~Ted Skiera, RN