A typical American family caregiver is exhausted, stressed out and depressed.
The strain on family members who care for parents, grandparents, or spouses is often so extreme that the state of Washington reported in January that 50 percent of its caregivers were considered highly depressed.
“It astounded me when I first saw this,” says Rhonda Montgomery, a national expert on caregiving. “Family caregivers are probably the most depressed people in America.”
Montgomery should know.
She’s helped create a new assessment tool for caregiver stress that is radically changing the way caregivers are supported and treated.
Past views of stressed caregivers have focused almost entirely on respite care to give them a break – programs like adult day care or an in-home visitor to allow them a brief escape from their often 24-hour commitment. For the lucky few, there may be a local caregiver support group.
But those programs often fail.
For Bill Hartke, the stress of constant physical decay and 24/7 care was so all-consuming that when he went outside to relax with a cigarette, he could still hear his mother-in-law’s voice echo inside his own head.
“Even when she wasn’t calling my name for help, I would hear her calling me,” sighs Hartke. “That’s how crazy it got.”
Paralyzed by the overwhelming responsibility of caring for an older adult, caregivers typically don’t reach out for services – for reasons of all-out fatigue, personal pride, or the belief that they’re not the ones who need help.
Today, the focus is on something far different: the emotional state of the caregiver, especially their attitudes about this new and exhausting role.
Montgomery’s brainchild is TCARE – Tailored Caregiver Assessment and Referral –developed at the University of Wisconsin-Milwaukee’s Helen Bader School of Social Welfare.
The cornerstone of the program is a sophisticated assessment of the caregiver – not the elderly adult. Its mantra: all caregivers are not created equal.
Some caregivers plan for this responsibility, and accept it graciously as their familial duty; others scream their way through the caregiving process in a cycle of avoidance, anger, regret and shame.
For Montgomery, caregiver solutions need to be customized to include all of those factors.
“Caregiving is not a diagnosis,” says Montgomery. “It’s a group of people who need to be seen for what their needs are… I’ve met caregivers who are 15, and there are some who are 102. And they certainly have different needs.”
There are two essential elements to the TCARE program, which Montgomery developed with gerontology professor Karl Kosloski of the University of Nebraska-Omaha.
The first: help the caregiver understand how their identity has shifted – to explore this new caregiving role while integrating the best parts of their previous life.
Many caregivers, for example, no longer see themselves as a child or spouse. Others sacrifice their personal lives and jettison their favorite hobbies.
“A lot of times they’ve been so isolated, they don’t know what to do when they get a break,” says Michelle Nevins, executive director of the Del Oro Caregiver Resource Center, which serves 13 counties in Northern California.
The second step for caregivers is to fully accept their new role and get the help they need – for their loved one, and themselves.
Ironically, this process sends the successful caregiver down a narrow path: they must embrace their role as a caregiver, yet stop seeing caregiving as their only role in life.
“They’re so entrenched, they really need to back off,” says Leigh Wellcome, program manager for the Family Caregiver Support Program for the state of Washington, which introduced TCARE in 2009.
Montgomery says that the physical tasks of a typical caregiver “has almost zero correlation” to their stress level.
Some caregivers work diligently with virtually no stress. Others fall apart performing even the simplest tasks.
A Bay Area wife and mother uses her husband as an example.
“I’ll ask him to do something and he’ll flip out because he’s got a million things on his list to do,” she says. “It could be the littlest thing like changing a light bulb.”
According to Montgomery, caregiver stress is caused by the chasm between the caregiver’s perspective of their role… and the role itself.
Montgomery compares this to a rubber band measuring these two extremes: the life they once had, and their new life as a caregiver.
“The further that stretches, the tighter that rubber band is,” says Montgomery.
Accepting the new caregiving role goes a long way to relieving caregiver stress.
“We have simple solutions once we understand where your stress is from,” says Mary Brintnall-Peterson, a long-time caregiving expert and former colleague of Montgomery who now heads MBP Consulting. “You have to change your identify to ‘I’m not just a daughter, but a caregiver.’”
TCARE offers a broad spectrum of 99 total caregiver services ranging from additional medical and dental care to coping skills, housework, errand assistance, and transportation.
Since caregivers often neglect themselves, behavioral and physical health are high on the list. Counseling for depression is often the first recommendation.
Although TCARE is virtually unknown in California, the progressive Los Angeles Department of Aging has scheduled a summer pilot program for TCARE. City officials hope to convince surrounding officials in the most densely-populated senior county in the state to introduce the assessment tool. There are more than one million older adults 65 and over in Los Angeles county.
Bonnie Shoemaker is one of the few in the state so far to implement TCARE. Working for the Partners in Care Foundation headquartered in San Fernando, she helped more than a dozen caregivers manage their stress.
She cites former teacher and administrator Wilbur Williams – who has taken care of his wife for four years – as the ideal example.
“We were able to work through his identity,” says Shoemaker, now the owner of Tailored Caregiver Solutions. “It totally changed how he looked at things… Even though the situation didn’t change for him, he was able to live through it and have far less stress.”
First adopted in Georgia, Montgomery went in search of other states hungry for caregiver solutions like TCARE, and found interest in Michigan, Minnesota, Washington and a handful of other states.
Before Washington introduced TCARE in all 13 of the state’s Area Agencies on Aging, Wellcome says pairing the right services to caregivers was a frequent guessing game.
“Most of the time we were not right,” she admits.
While respite care was once central to Washington’s caregiver support, the expanded TCARE assessment tool focused on physical and mental health, along with a host of other solutions.
Wellcome recalls the case of an elderly caregiver who supposedly needed only respite care. In truth, the help he needed was inside his head.
“He didn’t feel like a husband anymore,” explains Wellcome.
Besides mental health counseling, the man needed to understand and accept his new relationship with his own wife.
These types of lessons from Washington are critical as TCARE expands here.
“Our work in California builds on information we have gained through our work with organizations in Washington,” says Montgomery.
Nationally, there are other programs designed for caregivers that have achieved some success.
The most successful program to date is “Powerful Tools for Caregivers,” a six-week education program featuring topics like “Taking Care of You” and “Communicating in Challenging Situations.”
“The Savvy Caregiver” program targets older adults with Alzheimer’s and other forms of dementia.
The United Hospital Fund’s “Next Step in Care” campaign claims to be the only program in the country targeting caregivers helping a family member transition from hospital to home.
The only federal program that offers caregiver assistance is the National Family Caregiver Support Program – spawned by the Older Americans Act of 1965 and created in 2000.
Into this swirling mix of programs, TCARE has become an important new addition to the growing number of caregiver solutions – physical, emotional and financial.
“TCARE saves money because it gets the right resources to the caregiver,” says Brintnall-Peterson.
Matt Perry wrote this series as part of the MetLife Foundation Journalists in Aging Fellows program, a collaboration of New America Media and the Gerontological Society of America.