‘ I’ve basically lost my life mate’
Family caregivers face significant financial, health challenges, and there are not enough of them to handle aging baby- boom generation
In 2009, Harold Axe and his wife began noticing changes in his speech. He would leave words out of sentences and misuse vocabulary.
The cognitive deficits progressed over the years, though Harold continued working as an allergy specialist, using pre- written notes to communicate with his patients. But after his dementia became too severe to continue, in June 2018 he retired, after more than 10 years of living and working with the disease.
Now, at 77, “he’s completely mute,” said his wife, Vicki Axe. “Emotionally, he’s lost all his affect. He has no empathy. The best way I can put it is, we’re married 48 years and I’ve basically lost my life mate.”
The sentiment is a common refrain from spousal caregivers, who often find themselves thrust into the role without warning, at a time where they’re expecting to enjoy retirement and their later years. For the last 18 months, Vicki Axe, a well- known rabbi in Greenwich for years, has spent countless hours serving as a full- time caregiver to her husband.
Nationally, one in five older adults receives intensive care services from a spouse, as opposed to a health care professional, according to AARP. Others receive their primary care from another family member, such as a child or sibling.
While stepping into the role can be a burden to the family member involved, health professionals and advocates say family caregivers are a critical national resource, contributing free services that would cost families, and in many cases taxpayers, if they had to be purchased.
“Currently, family caregivers are credited with saving the government about $ 425 billion a year in unpaid care,” said Lawrence Bocchiere, a Bethel resident and president emeritus of the Well Spouse Association, a national organization supporting spousal caregivers.
In Connecticut, about 460,000 family caregivers provide an estimated $ 5.9 billion worth of caregiver services annually, according to AARP.
But family caregivers provide the service to their loved ones — and society — at a steep cost.
Typically, spouses are aging themselves, while often struggling to address their own health issues.
“Sometimes caregivers will say, ‘ I wish it was over with,’ ” said Roni Lang, a licensed clinical social worker at Greenwich Hospital. “They’ll admit that in ( my caregivers’ support) group. They can say the unmentionable, that this is hard. But, most caregivers do rise to the occasion.”
Old and young
Projections however show there won’t be enough family caregivers to provide services in the future, as they are not keeping pace with the rapidly increasing numbers of older adults who will need their care.
In 2010, there were seven potential family caregivers for every person age 80 and older in the U. S. But by 2030, that number could drop to four, according to AARP.
In Connecticut, the numbers are just as stark.
In 2015, Connecticut had six family caregivers for every person over the age of 80. By 2050, that number is expected to drop to two, according to AARP.
“We will have more people with needs and fewer people to meet the needs,” said Beverly Kidder, vice president of community programs at the Agency on Aging of South Central Connecticut.
The emerging gap is the result of the huge baby boomer generation aging while the size of American families has been trending steadily downward.
Each day, 10,000 baby boomers turn 65, meaning by 2030, one in five Americans will be of retirement age. For the first time in American history, older adults will outpace the number of children in America, according to the U. S. Census Bureau.
In Connecticut, the older adult population is growing at a faster rate than the rest of the United States. The state has one of the largest 50- and- older populations in the country, according to AARP.
As the older population increases, families are getting smaller, creating a declining number of offspring available to serve as family caregivers, said Anna Doroghazi, associate state director for advocacy and outreach at AARP Connecticut. The ratio of Americans ages 18 to 64 is projected to decrease by 5 percentage points between 2014 and 2060, according to the U. S. Census Bureau.
Further contributing to the problem is that families tend to scatter geographically more than they used to, and the rates of divorce and single parenting are high, Doroghazi said.
Professional care
Compensating for the coming lack of family caregivers will require an exponential increase in the professional caregiver workforce, experts said.
Currently, 2.3 million professional care workers are available nationally. By 2026, 4.2 million will be needed, according to PHI, an organization that works with agencies across the country to expand elder care and disability services.
“Overall employment of home health aides and personal care aides is expected to grow by 36 percent from 2018 to 2028, much faster than the average for all occupations,” according to a report by the Bureau of Labor Statistics.
The role of personal professional caregivers in Connecticut is also expected to increase — by 38 percent from 2012 to 2022, according to the Connecticut Department of Labor.
Support
But, to the extent the professional ranks can’t meet those towering growth marks, more will have to be done to enable family members to step up and serve the older adults who will need them, said elder care advocates and policy experts.
“If those individuals are simply not in the workforce, then who is going to be providing the care?” asked Marie Allen, executive director at Southwestern Connecticut Agency on Aging.
The country needs a family caregiver strategy, said Joe Gaugler, head of long- term care and aging at the School of Public Health, University of Minnesota.
“At a federal level, we don’t know what we need to do to address this challenge, which is a public health issue,” he said.
The RAISE Family Caregivers Act, passed in January 2018, requires the U. S. Department of Health and Human Services to convene a council to recommend actions communities, providers and the government should take to recognize and support family caregivers.
Some widely discussed solutions include financial assistance — through Medicare waiver programs or tax credits or benefits. Family caregivers often have to leave their jobs or cut back on their work hours, Bocchiere said.
More flexible work hours and workplace protections would help family caregivers, Allen said.
“What we don’t want to see is people being put in a position where they have to choose between providing care for a loved one and keeping a job,” said Doroghazi. “Even just a little bit of flexibility allows people to have both.”
Caregivers also need a break. “Connecting those people with respite can ... keep them in the caregiving game long term,” said Scott Bane, program officer at the John A. Hartford Foundation.
Adult day care programs provide caregivers with relief, but there aren’t enough of them. Many have long waiting lists.
And some have called for training for family caregivers, who often find themselves carrying out unfamiliar tasks, such as dressing wounds or using a hoyer ( patient) lift.
“What we have to do is keep in mind, there is no one single solution,” said Lisa Winstel, chief operating officer of the Caregiver Action Network. “It has to be a panoply of solutions.”
Most agree if the coming shortage of caregivers is not resolved in the next two decades, the drain on the medical industry and government will be severe, and older adults could face dire repercussions.
“You would look back at a time when we were almost warehousing older adults in institutions, that were not really respectful of their independence and dignity, because there just wouldn’t be enough community support,” said Allen.
‘ I worry that something is going to happen to me’
Many family caregivers jump into the role without giving themselves the label and without much thought. But the task comes with a hefty cost.
Caregiving often creates physical and emotional strain over time, particularly for those caring for loved ones with a form of dementia, like Axe.
“The life of a caregiver to somebody with this disease, it’s a tragedy beyond words,” Axe said. “I prepare all his meals and make sure they’re prepared in a way that won’t cause choking. I dress him ... I have to help him in and out of the car, up and down from chairs, watch over him when we’re out and about, because he doesn’t have a sense of anything around him.
“It’s 24/ 7,” she said. “It’s lonely.”
One way she could remain emotionally close to Harold during his decline was shaving his facial hair twice a week. There’s an intimacy in the ritual that Axe said she couldn’t find elsewhere. And keeping up Harold’s appearance maintained his dignity, she said.
“Harold was always a very well- groomed person,” Axe said in an initial interview in November. “He would shave on days when we weren’t going anywhere. So, shaving is just something real personal that he as a man did every day in his life.”
An ordained rabbi, Axe led the Congregation Shir Ami in Greenwich beginning in 2003, previously serving as cantor at Greenwich Reform Synagogue. In October 2018, she stepped down from her rabbinic responsibilities to become a full- time caregiver to Harold. Since then, she’s taken on the unpaid role of rabbi emerita.
“We both were forced to retire,” Axe said. “Our only income is Social Security. We went from major, major salaries to basically nothing.”
In June 2019, Axe and her husband moved to Fishkill, N. Y., for a lower cost of living and better access to day care services for Harold.
On top of the financial burden, she said she has experienced a decline in her own health.
“I’m currently thinking I need to go see an orthopedic surgeon,” she said in November. “Every time I go to put his pants on, I always go down on the same knee and I have a place of intense pain every time I do it. I know there’s something going on.”
She had two heart attacks — in 2011 and 2017 — and after each occurrence, doctors inserted a stent into her heart.
“I worry that something is going to happen to me and my health ( and) that I won’t be able to take care of him,” she said.
In late December, after Harold suffered a fall in their home, he was hospitalized for about two weeks. Shortly after, Axe decided to move him into a Pawling, N. Y., nursing home, because she couldn’t continue providing the level of care Harold needed.
During his January hospital stay, doctors found that Harold had previously broken ribs, likely from an earlier fall.
“( It) confirmed I really cannot manage him at home,” Axe said in a recent interview. “Because if he had old broken ribs, that means it happened under my watch.”
Axe said she has made the right decision, although she knows her husband is never coming home.
“It’s devastating because he’s still alive,” she said. “I think it’s different when someone dies and you feel the empty space ... but what’s happening now and has been happening over time, is that he’s here, but he’s not here.”
As she lives with that pain, Axe said placing Harold in a facility has been liberating.
“When he was home, I had to manage my comings and goings based on his comings and goings,” she said. “Now that I know he’s in a very safe and caring place, I have complete freedom.”