Stacey’s parents had a storybook romance. Married for over 60 years, her father still called her mother “sweetheart.”
Stacey’s mother developed dementia. As it progressed, her father tried for several months to take care of his wife at home with the help of health care aides. But then her behavior became explosive and irrational. Stacey, who lives in Voorhees, N.J., was faced with the painful decision of placing her mother in a nursing home.
“It was an extremely difficult decision and I still struggle with it, even though I am certain it was the right decision for everyone — especially my dad,” she says.
Her father’s devotion did not waver. He visited his wife twice daily, with just brief midday respites. “He would call at the same time every day to give me an update me on how my mother was doing,” Stacey says. “He rarely deviated from his routine.”
It didn’t matter that his wife’s dementia made it impossible for her to know if he was there or not. He continued to visit his sweetheart daily for more than three years, until she passed away.
While Stacey found her father’s devotion to her mother admirable, it was also concerning. Her father was in his mid-80s and had given up doing any of his traditional leisure activities, including playing poker and twice-per-week trips to Atlantic City with friends.
“He worried about my mother constantly,” Stacey says. “I was sad for my mother, but I didn’t worry because I knew she was being well cared for by the staff and by him. But I worried about my father. He wasn’t taking care of himself, he was driving exhausted and he didn’t spend time with anyone but my mother.”
Is it possible to be too devoted as a caregiver? And if so, how can loved ones help caregivers understand that they need to think about themselves?
The Physical Demands of Caregiving
“Can a vehicle continue to run without regular fill-ups and service? No!” says Rick Lauber, an author of the book, The Successful Caregiver’s Guide. Lauber, who lives in Alberta, Canada, helped care for his parents until they passed away. “Caregivers are no different. Caregivers helping and supporting aging loved ones routinely give too much of themselves while overlooking their own health and wellness.”
Clinical gerontologist, David J. Demko, adds, “Caregivers tend to get reduced sleep, including much-needed REM sleep. They have muscular aches from the physical demands of caregiving and neglect their personal nutritional needs.”
Stacey’s father eventually wound up hospitalized for five days with pneumonia. “The thing that really troubled me was that he still went to the care facility disregarding the fact that he was starting to feel pretty sick,” she says. “But his needs were unimportant to him.”
Some care partners actually become ill and die before the person they are caring for, says Rachael Wonderlin, a gerontologist and founder of a consulting business called Dementia By Day in Pittsburgh. “And it’s no wonder — they are highly stressed and consumed in their newfound role,” she says.
Strain On Relationships
Caregivers have decreased time for social outings and become emotionally drained. Even when they do take a break, they experience guilt. “When my father came to my house for holidays, he tried to enjoy himself, but I could tell he felt guilty that my mother was alone,” Stacey says. “He seemed lost and sad. He was much happier when I would bring my kids to him at the nursing home, but this was a hard environment for my young son. It was stressful for me to balance my father’s needs with my son’s.”
What Stacey’s father experienced is common, says Katie Ziskind, a family therapist at Wisdom Within Counseling in Niantic, Conn. “The (caregiver) often can develop codependency and depression as a result of caring so much for their loved one, even with the best intentions,” she says.
Stacey says her father is a very warm and kind man, but when he was away from the nursing home, he was usually distracted and anxious due to worrying so much about her mother.
“When we spoke, he would tell the same stories over and over again and was not really focusing on what was going on with me, my kids,” she says. It wasn’t until after her mother died that her father said, “I just realized, you lost your mother.”
How to Help a Caregiver
“Self-care is absolutely essential to be a good (caregiver) because you can’t give from an empty bucket,” Ziskind says. Explaining this to devoted caregivers can be difficult, but try stressing that if they don’t care for themselves, they won’t be as helpful to their loved one or to the other people in their lives who love and worry about them.
Yoga, meditation, writing in a journal, or going for a daily walk can all help to replenish a caregiver’s energy and mental well-being.
Socialization for caregivers is also crucial. Encourage them to spend time with friends, connect with family or attend support groups with other caregivers.
Looking back, Stacey says her one regret is that she didn’t insist her mother be placed in a facility closer to her home, instead of over an hour away. It was difficult for her to visit her mother more than once a week while balancing work and childcare responsibilities.
“My father didn’t have a lot of support in the area. If she were closer to me, I could have visited her more often and I could have tag-teamed with my dad instead of him going twice a day,” Stacey says. “He also could have spent more time with his grandchildren and me without feeling guilty that my mother was alone.”
During her mother’s illness, Stacey feared that her father would die from the pace and intensity of his devotion to her mother. She says her father was a beautiful role model to her and to her kids. She is thankful that he now appears to be doing more things for himself.
“He has no regrets about the time he spent taking care of my mother. Even though he is sad that she is gone, he is also calmer and less anxious knowing she is at peace. He is taking better care of himself and is back to his twice a week Atlantic City trips. We still talk daily about my mother, but about other things too,” she says.
Find more caregiver tips on Bethesda’s blog.
By Randi Mazzella for Next Avenue.
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