Typically holding down jobs and raising children while providing for the daily needs of an aging parent or spouse, family caregivers are some of the most selfless people on the planet. By and large reluctant to reach out for help, they just might be giving too much of themselves.
“The statistics are sobering,” said Barbara Gradet, executive director of Jewish Community Services. “There is a 63 percent higher mortality rate among caregivers because of physiological and psychological stress. We want to do everything for those we love, but caregiving is such an exhausting job, financially, physically and psychologically. It’s meaningful, rewarding and special too, but it’s risky nevertheless, very risky.”
Phil Golden, director of Springwell Senior Living in Mount Washington, has seen the impact of caregivers’ resistant to ask for help.
“Heroic caregivers run themselves down,” he said. “They get sick, and they get frustrated.”
Until about five years ago, Linda Noll’s parents lived independently. The 64-year-old retired museum director, who lives in Mount Washington, suddenly found herself on an emotional roller coaster.
At age 87, Noll’s father developed an abdominal obstruction that required surgery. “After the surgery, he was more confused, lost interest in things and was less active,” said Noll. “His muscles became weak because he was sitting so much.”
Noll’s mother, 82 at the time, was still active but reluctant to leave her husband alone. So Noll looked into her father’s VA benefits and was pleased to find that he was entitled to 10 hours a week of home care. She and her sister took turns taking her mother on outings. Soon, though, Noll’s father’s condition worsened. He needed 24-hour care. In late 2011, her mother fell and broke her arm.
Noll, who was still working at the time, felt obligated to move into her parents’ home for several weeks and paid out of pocket for the full-time care. It was after her mother’s accident that she determined her parents could not continue to live at home.
Many older adults, according to an AARP study, fear the prospect of ending up in an assisted living facility or nursing home. Most instead prefer to “age in place,” to live out their years in their own homes.
“With the right supports, it is possible for many people to age in place,” said Gradet. The problem is that aging in place can quickly become untenable, even unsafe.
Golden encourages adult children to explore options in advance of crises.
“Shop around. Senior living has changed in the past 15 to 20 years. Nursing homes are way better than they were, and some are really good options,” said Golden. “They offer the benefit of community, like ours does, social opportunities and some relief for the caregivers.”
At Springwell, for instance, a memory support group provides education and emotional support for adult children experiencing the significant loss of having a parent or parents no longer capable of self-sufficiency.
Noll ultimately chose to place her parents at Springwell. But lest anyone think that caregiving stops once a loved one is placed in an assisted living community or nursing home, Cristy Kirssin, 36, of Pikesville is quick to disabuse them.
“Don’t think you can just leave your parents there [in a rehab or senior living facility],” stressed Kirssin. “You have to be an advocate and make sure they’re taken care of. Adult children need to pay a central role. I was the baby [of the family], but I had to step up.”
Kirssin’s sheltered role as the youngest in her family changed forever in 2011, when her older brother, Todd Kirssin, called to tell her that their father, Bob, had been hospitalized. At the time, Kirssin was in her early 30s, living in Pennsylvania and working as a marketer for a leasing company in Harrisburg.
“I had known my father was experiencing back pain and that things weren’t right with him, but I didn’t know exactly what was going on,”
At the time of his hospitalization — several years after doctors had diagnosed him — Kirssin and her brother were told that their father had chronic lymphoma leukemia.
Her parents “had always tried to protect us, and that was their mentality when it came to illnesses as well,” she explained.
The news of their father’s cancer came amid suspicions that their mother was suffering from amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease). That same disease had claimed the life of an aunt in 2005.
“It was a horrible time,” said Kirssin. “It felt like everything was shattering around me. While my father was hospitalized, my brother took the lead to devise a plan for my mother. She really couldn’t be at home alone in a two-story house because her ALS made it difficult for her to walk without falling.”
In only a month’s time, the family decided that Kirssin’s mother would move to the assisted living unit at Springwell. At first, said Kirssin, her mother was resistant to leaving her home, but her brother stood firm, and she complied.
“We liked the fact that she would be in an environment with a nursing staff nearby who would respond to medical emergencies or falls. And we knew her condition would only get worse.”
Despite the move to assisted living, Kirssin and her brother continued to be involved in their mother’s care on a daily basis. While her father remained in rehab, Kirssin, who was able to transfer to her company’s Pikesville location, moved into her mother’s assisted living apartment.
“Initially, my mom was doing well, getting rehabilitation at Springwell to manage her ALS symptoms, but once she had a bad fall, she became much weaker. At that point, it became burdensome because I had to be there on a daily basis to assist my mom with all the morning and evening tasks. I had to hire a nurse for a few hours each morning to help her with some daily living functions and still slept over to help her to get out of bed when she needed to.”
In addition to living with and helping her mother, Kirssin also spent a lot of time visiting her father in rehab.
“I would double up after work,” she said, “first visiting with my mom and maybe having dinner with her at Springwell, then visiting my dad in whatever facility he was in.”
Kirssin never thought twice about the difficulty, she said. “These are my parents. We have a strong connection. I took action.”
Beyond the daily visits, Kirssin also served as her father’s advocate, working with staff to manage his cancer treatment until he was discharged and able to move in with her mother.
Things calmed down a bit once Kirssin’s father moved in, but within a month, her mother passed away.
“After a year and a half of living at Springwell without my mother, my father started to go downhill,” said Kirssin. “An undiagnosed Parkinson’s condition was showing up. He was depressed, and we weren’t sure if the problem was physical or emotional.”
Kirssin called for a mini-intervention with the staff at Springwell, and her father’s medications were adjusted. Kirssin said her father is currently stable, but she and her brother remain closely involved in his care.
While Kirssin’s family remained strong in the face of such upsets, Noll’s sister moved away shortly after their parents took up residence at Springwell. Noll has a brother, who is “out of the picture.” Echoing the feelings of many an adult sibling in a similar situation, Noll admits that she was resentful.
“Sometimes I think, ‘I have my own life. This isn’t fair. I have no help,’” she said.
Gradet acknowledged that familial crisis often brings up long-standing interpersonal issues between siblings. That’s one reason why it’s so helpful for adult children planning for aging parents to consult with professionals. Such situations, said Gradet, are fraught with emotion.
“When adult siblings come together, old issues come to the surface,” she said. Siblings frequently disagree about their parents’ needs and about the severity of their parents’ fragility.
In times of crisis, siblings typically regress to their traditional roles in the family, added Gradet. As in Noll’s case, one adult child is often left caring for aging parents, either due to the nature of the parent/child relationship or simply because of geography.