A story of love and loss, of isolation and loneliness
Teacher Gina Rinehart was preparing for another school year when she learned that her father was having surgery to remove a lung tumor. She flew to rural Washington to be with her parents. Unfortunately, that tumor was stage 4 lung cancer. Her son and daughter had only recently left home for school and work. “I thought we’d have a break, my husband and me. Travel. Go to Europe.”
Instead, Ms. Rinehart moved in with her folks for the duration. While she had expected to shoulder elder care eventually, she didn’t foresee having to leave her home and give up the job she loved at 46.
A surprising proportion of those caring for older adults are younger
The National Academy of Sciences noted that of people providing care for family members over age 65, nearly 15% were ages 20 to 44. Among the youngest group, “what particularly concerns them is the negative impact on their pursuit of education,” said Feylyn Lewis.
Caregivers closer to midlife contend with pressures at work and sometimes have to reduce their hours, refusing promotions or retiring early. Ms. Rinehart took a personal leave from her school, but when her absence exceeded the maximum number of months allowed, she had to resign. “I loved my job,” she said wistfully. “I miss the kids.”
Job loss increases current and future financial strains
Younger caregivers may also have children at home. They often have demanding careers and work long hours. “They feel pulled,” said Carol Whitlatch, assistant director for research and education at the Benjamin Rose Institute in Cleveland. “They need to be there for their kids who are still dependent, and they have parents who are growing more dependent.”
Colleen Kavanaugh calls herself “the classic stereotype” of a caregiver
“I was the firstborn daughter who lives nearby and puts everything on hold.” In 2004, when she moved back into her parents’ home, she was newly divorced with a 5-year-old son. Then 33, she planned to regroup, find another job and, within a few months, move out and resume her independent life. But then her mother had breast cancer, then multiple surgeries, disability, and she died in early 2009. Then Ms. Kavanaugh’s father, who had been experiencing memory loss, was found to have Alzheimer’s disease and Parkinson’s disease.
When caring for him at home became too difficult, Ms. Kavanaugh moved him into assisted living and finally to a nursing home; he died in 2013. Along the way, while helping her son navigate school, Ms. Kavanaugh had to leave her job managing a marketing and design firm.
“I went seven years with no income, no 401(k), the loss of Social Security” contributions, she said. “It was a bitter pill.”
No one can prepare you for the isolation of caregiving
Perhaps the most jarring aspect of caregiving is the loss of social connections. Friends fall away after the umpteenth time a caregiver says no to a concert or cancels a dinner because of an emergency or simple exhaustion. It becomes difficult to listen to others carry on about seemingly trivial problems—disappointing vacations, dinner parties or home décor or wardrobe dilemmas.
Ms. Kavanaugh found that the people she grew close to, as her father moved into a dementia unit, were other women with parents there. “All my friends now were in their 50s to 80s; you no longer have contemporaries to confide in.” Not one of these caregivers regrets undertaking the role. As Joseph Gaugler, a gerontologist at the University of Minnesota School of Nursing points out, many caregivers take satisfaction in reciprocating their parents’ sacrifices and pride in doing a good job.
For Gina Rinehart, she intends to bring her mother home to live with her and her husband in Southern California, where she’ll find another teaching job. “That’s the plan. But I’ve learned that you can’t expect things to go the way you think.”
So many of us are either caregivers or know someone who is
For those who live in multigenerational environments, the whole family may be part of a team caring for an aging parent or grandparent. The importance of creating a Living Trust, with a Power of Attorney and a Healthcare Directive, are important legal documents for every family—especially if there’s a dementia diagnosis. It’s important to sign legal documents while a person can still demonstrate testamentary capacity.
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