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Michele Vinz likes to joke that she’s a psychiatric nurse with no training, no education — and no pay.
Four years ago, the 53-year-old made the decision to move back to Iowa from California to care full time for her sister, Julee Vinz. Julee, 46, has bipolar disorder in addition to Williams syndrome, a developmental disorder that causes learning delays and cardiovascular problems.
“Almost all of my adult life, I wanted to be her caretaker,” Michele said. “She was moving into group home after group home, I was just riddled with guilt.”
Both of their parents have passed away. And Michele was worried over Julee’s care. Julee is very social and trusting, which can put her in dangerous situations, Michele said, recalling how her sister once got into a car with a stranger who was drunk. A law enforcement officer later pulled them over and got Julee out of the vehicle, Michele said.
“She has no boundaries,” Michele added.
Michele has no regrets in her decision to quit her job and move to Des Moines to care for Julee, saying it is the most rewarding thing she’s ever done. But it’s also unbelievably challenging.
“It’s more than a full-time job managing her care,” Michele said. “Now that I think of it, this is the most difficult job I’ve had and lowest pay I’ve received. It never stops. It’s 24 hours a day.”
Michele has to manage Julee’s multiple medications that she takes three times throughout the day. She goes with her to all her medical and mental health appointments. She advocates tirelessly for her health care with providers and the state of Iowa. And when Julie is going through a psychiatric episode, Michele has to be even more aware of her health care needs.
Julee is enrolled with Medicaid, and the sisters participate in the Consumer Choices Options program — a state program that gives families a lump sum of money to hire their own care workers. They use that money to pay Michele for the care she provides her sister, but that only covers about 40 hours each week.
“I don’t get paid to get up in middle of night because she’s had nightmare,” Michele said. “She has high anxiety all of the time. Even the littlest things can set her anxiety off the charts. Complicate that with ups and down of bipolar disorder and it’s like, oh my gosh, I never am quite sure what I’m dealing with.”
An invisible army
Michele isn’t alone. She is one of an estimated 350,000 family caregivers in Iowa.
They’re caring for parents, spouses, children and siblings who have been diagnosed with chronic or terminal illnesses.
It’s a stressful and, at times, isolating job. Family caregivers in Iowa report experiencing health problems, being financially strained and finding it hard to get enough rest. They’re also less likely to deal with their own health problems because they’re so busy caring for their loved one.
They perform a variety of tasks — driving their family member to appointments, managing finances and households, preparing meals, and helping with bathing and dressing.
Two-thirds of family caregivers also must assist with complex medical care such as medication management, wound care, performing injections or inserting IVs — according to a 2015 AARP Caregiving Survey.
That’s 15 percent higher than the national average. These important tasks not only keep loved ones healthy but keeps them out of the hospital.
Altogether, this group of individuals is providing more than $3 billion in unpaid care annually in Iowa, according to projections from the Iowa chapter of AARP.
For this invisible army that is juggling jobs, family obligations and the care of a loved one, there are few resources to help them navigate a complicated system or any policies to provide relief. And this is an issue that will only grow as baby boomers continue to age and the number of Iowans diagnosed with Alzheimer’s grows — projections estimate that number to jump nearly 16 percent, from 63,000 in 2016 to 73,000 in 2025, according to the Iowa Alzheimer’s Association.
“For the Alzheimer’s caregiver, there is no light at the end of the tunnel,” said Carol Sipfle, executive director of the association. “The progressive nature of disease means you lose abilities over time, and you don’t get them back — cognitive function, memory, judgment, personality. There are physical changes, too — how they walk, balance, vision, their ability to eat and swallow. There are so many elements of caregiving that come into play.”
Unfortunately, family caregivers don’t always receive the help or education to confidently perform those medical tasks. Half the caregivers who participated in that AARP survey said they were not given a demonstration of the medical tasks they would have to perform before their loved ones were discharged from the hospital.
“I feel like a lot of the time, I’m the one doing the education,” said Michele. “It can be very frustrating. Sometimes I feel like I’m out there on my own.”
Iowa Care Act
There was a bill in the Iowa Legislature that could provide relief to some of these issues — though it has taken Anthony Carroll, associate state director for advocacy at AARP Iowa, longer than he imagined to get it through the statehouse.
“This is a no-brainer,” he said. “Thirty-four states have passed a version of this bill.”
The Iowa CARE Act would better equip family caregivers with the basic information and training they need when their loved ones go into the hospital and as they transition home. The legislation would require hospitals to record the name of the caregiver when their loved one is admitted, notify the caregiver when their loved one is to be moved or discharged, and instruct the caregiver on the medical tasks they will need to perform at home.
Not only would this better prepare family caregivers, Carroll said, it is also more cost-effective, helping cut down on costly readmission rates.
“In some cases, hospitals are already doing this,” Carroll said. “But some aren’t. This bill gives a baseline expectation, to give basic tools and knowledge to provide the care.”
The legislation was first introduced three years ago — but as legislative sessions have come and gone, the bill has yet to make it fully though the process to become a reality.
Carroll’s biggest opposition?
The state’s hospitals.
“We feel confident that hospitals are dedicated to and doing a good job providing both patients and caregivers with discharge support,” said Scott McIntyre, the spokesman for the Iowa Hospital Association, which represents Iowa’s 118 hospitals. “It’s an incredibly important aspect in inpatient and outpatient care. Hospitals and staff take it very seriously.”
McIntyre agreed that it is inefficient and expensive to send someone home only to have that person turn back up in the hospital — especially in the emergency department. That’s why hospitals are working to provide better discharge plans and reduce readmissions — a number he said that has fallen over the years.
“Our Legislature has a history of not being too prescriptive with health care and how practitioners should do their jobs,” McIntyre said. “This legislation hasn’t moved forward because legislators recognize that it’s a slippery slope to begin dictating to health care professionals how to do their job.”
Part of the problem, said Kathy Good, executive director of the Family Caregivers Center of Mercy, is that while there are all kinds of resources available to help parents care for children, there’s not much in the way of help for adults who are caring for older loved ones.
“We’re still not saying, ‘What can we do for you?’ ” she said. “There needs to be a paradigm shift.”
The Caregivers Center of Mercy, which opened in Cedar Rapids in late 2015, focuses on providing emotional support to caregivers through educational sessions, support groups and caregiver coaches — trained volunteers to help connect caregivers to community resources — among other services.
Across the street from Mercy Medical Center on the Cedar Rapids main campus, the center offers free services to anyone who wants to take advantage of them. It has brightly colored walls, a hospitality room, resource library and a lounge.
It’s there to offer relief to those trying to manage the stress and isolation of caring full time for a loved one. Good — who volunteers her time to manage the center — is a relentless advocate when it comes to identifying ways to better fill family caregivers’ unmet needs.
A social worker and former caregiver herself, Good knows firsthand the difficulties and challenges family caregivers face on a daily basis. She cared for her husband, Dave, for many years.
She remembers the challenges of finding the right cocktail of medications to manage his Alzheimer’s, anxiety and depression as well as the coordination that was necessary between Dave’s doctors and the care facility he lived in just to make sure his medication was being administered properly.
“It was complicated and stress producing, and I was operating under the best of circumstances,” she said.
Good is now working on developing a hospital navigator position within the center that would help family caregivers maneuver through the hospital so they can better “understand the system they are now a part of.”
There are plenty of resources already available within the hospital, she said — social workers, palliative care or hospice care.
“We want to make sure the navigators enhance these services,” she said. But the navigator also would educate the hospital on how to better meet the needs of caregivers.
“So if you’re sitting in the hospital freaking out, maybe she can be on-call to answer your questions or give you suggestions,” she said. “Maybe she comes and sits with you at the hospital.”
Her goal is to perfect the position at Mercy Medical Center and then introduce the idea to other hospitals across the state for them to adopt.
But she also believes the family caregivers’ center’s model easily could be applied to create a “medical” arm — a community resource housed inside or outside a hospital staffed with volunteers, such as retired nurses, who are able to answer questions about injections, wound care and catheters.
Whatever the idea, communities need to begin thinking of a solution, she said.
“The need clearly exists.”
Read more: Faces of caregivers
This story appears in the second edition of the Iowa Ideas magazine. Order a free copy here.
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