Study: Elderly’s Family Caregivers Need Help, Too

By Rachel Bluth

Republished from Kaiser Health News.

Elderly Americans’ well-being is at risk unless the U.S. does much more to help millions of family caregivers who sacrifice their own health, finances and personal lives to look out for loved ones, reported a study released Tuesday.

Nearly 18 million people care for a relative who is 65 or older and needs help, yet “the need to recognize and support caregivers is among the most significant challenges” facing the nation’s swelling elderly population, their families and society, according to the report from the National Academies of Science, Engineering, and Medicine. Describing family caregiving as “a critical issue of public policy,” a committee of experts in health care and aging said the next presidential administration in 2017 should direct a national strategy to develop ways to support caregivers, including economically.

According to the report, people who help elderly family members with three or more personal tasks a day devote 253 hours a month to caregiving — almost the equivalent of two full-time jobs.

Five years is the median duration that family members care for older adults with high needs, the report said.

For some Americans who accept that responsibility, that can mean taking a less demanding job, foregoing promotions or dropping out of the workforce.

Lost wages and benefits average $303,880 over the lifetimes of people 50 and older who stop working to care for a parent, according to a study cited in the report. That’s not all: A lower earnings history also means reduced Social Security payments for caregivers when they become eligible.

A possible fix for that problem, proposed by researchers in 2009, is to provide caregivers with a Social Security credit for a defined level of deemed wages during a specified time period, the report said.

Leave programs do exist for some workers shouldering caregiving duties, but many lack such job protections.

The federal Family and Medical Leave Act doesn’t cover 40 percent of the workforce. It allows eligible employees to take 12 weeks of unpaid time off to care for certain family members, but the law only applies to those who work federal, state and local governments and private companies with more than 50 employees. But ineligible family relationships for leave include sons- and daughters-in-law, stepchildren, grandchildren, siblings, nieces and nephews. Many workers can’t afford to give up their incomes for 12 weeks.

In 2011, 17 percent of caregivers didn’t take leave because they feared losing their jobs, according to a national survey cited in the report.

The report recommends that family caregivers receive status as a protected class under existing job discrimination laws and that employers get guidance and training on ways to support workers caring for family members.

Beyond the economic costs of caregiving, the report notes that the social and physical toll of caregiving should get more attention than it does.

“If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs,” the report said.

Instead of delivering “patient-centered” care, health care providers should adopt “family-centered” models that include checking with caregivers to ensure they are healthy and capable of filling the role. The report also recommended wellness visits, counseling sessions and better training for caregivers who must understand increasingly complicated medical instructions.

Dealing with feeding and drainage tubes, catheters and other complicated medical devices causes stress, and the study’s authors noted that caregivers report “learning by trial and error and fearing that they will make a life-threatening mistake.”

The study was funded by 13 private foundations, the Department of Veterans Affairs, and an anonymous donor that requested the National Academies undertake the research in 2014.

KHN’s coverage of late life and geriatric care is supported by The John A. Hartford Foundation. KHN’s coverage of aging and long-term care issues is supported by The SCAN Foundation.

I’d like to tell you that Aegis Care Advisors was a long time in the making, and was rolled out with strategic military precision, but if I did, I would be lying. We took a somewhat circuitous route to get to this spot, and as often is the case in life, we are guided by the meanderings of personal experience.  So I feel like now is probably a good time to share a little something about my Dad.  He is 88, and has Alzheimer’s disease.

My Twitter feed lights up with purple these days, as the ENDALZ logo pops up minute after minute, recounting the celebrity appearances for a popular event meant to raise funds to fight Alzheimer’s disease. If I were a more healthy-minded person, I would be excited and proud of the people toiling over this effort, but I struggle to cheer this on, since I am still angry. We have been victimized by this thief, and our family has felt the chronic helplessness of being forced to stand by while our Dad is stolen from us — little by little — no matter how tightly we try to hold him in our grasp. Along with his intellect, a lifetime of professional knowledge in the field of textile chemistry, and his fatherly wisdom, the thief has stolen my Dad’s story. And over time, as the stealthy stalker was making away with golden pieces of treasure that is my Dad, I was ignoring my own weak promptings to gather in the nuggets of my parents’ earlier lives, and I failed to do important things like ask how he felt when he asked  Mom for their first date, or how he managed to get himself to South Bend alone at the age of 18 to pursue his Masters’ Degree in Chemistry at Notre Dame. Now, like the lover rushing to intercept the train at the platform, my heart sinks as I feel the crushing weight of regret that I have arrived too late.

We do have the well-worn stories that we yearned to hear told and retold over the years, like the turbulent time when brain cancer took Dad’s youngest brother, our would-be uncle Jimmy, at the age of 11, whose last days were spent in a hospital room with a singular, dismal view of a building bearing an advertisement for a coffin company. Or the time when Dad, in the days when young children were allowed to be adventurers, benevolently spruced up a neighbor’s car with a fresh coat of paint after coming across a can and brush found in their garage–doing so with the bright-eyed, whimsical earnestness of the 4 year old artist eager to present a lovingly crafted gift. But now these stories are like bulky pixels that make us want to rush to focus and readjust the picture into crisper clarity. We are desperate to bring into view the rich, brilliant colors and detail of the rest of the story, but the thief has craftily and irreparably scrambled the settings to do this.

Now we feel cheated. And violated. And afraid.

So we push ahead in our helplessness, and offset our heavy hearts with a larger counterweight of gratitude for this father, son, husband, friend, and disciple. We remember how Dad was–the coach, the advisor, the business man, the prayer giant. The guy who let you know that faith in God, honesty, integrity, and strength of character were paramount. The guy who was always in your corner. But today, I think maybe Dad is telling us his greater story more eloquently now than ever. No day goes by without Dad’s kindness and gentle, loving spirit shining through–a flash revealing the authentic man. The wide and warm smile, the willingness to chuckle and be playful remains while Dad continues his valiant quest to somehow convey to us the drama unfolding, yet locked, inside his brilliant mind. His gestures and words are strung together to form a language that we struggle to make sense of much of the time, but he speaks a language today that outshines and outperforms any form of conventional wording. He beams with recognition and love when we walk in to greet him, with an expression that is unfailingly joyful, hopeful, grateful, and unconditional, but the greatest expression of this must be witnessed first-hand when Mom comes in after short respite times, as the love Dad has for her, the mother of their seven children, and wife of 64 years, defies any form of written description. Underneath all of this, you cannot miss the relentless desire my Dad has to continue to share. He wants to share his moments with others, with us–he wants to just “be with.”

Dad was always one to advise us and encourage us to take on as many challenges as we could withstand and recognize opportunities in front of us. So hopefully that’s what we are doing now–sharing what we have with whomever might find what we say and do to be valuable. In the end, we are all here to need each other.

So Dad, thank you. You have revealed that you are the opportunity in front of us–our opportunity to share back, reassure you with our presence and care; and in this way, your life is perhaps even more eminently valuable now than it ever has been. And — you continue to be brilliant, for in this way, you have managed to foil, outsmart and outmaneuver your thief.