CEDAR RAPIDS — When Tim Charles, president and chief executive officer of Mercy Medical Center in Cedar Rapids, called up Kathy Good in April 2014 to ask for her help on a new project, she jumped at the opportunity.
Good, a former caregiver herself, knew how desperately this proposed new service was needed.
She cared for her late-husband, David, for about a decade while he lived with Alzheimer's. She was able to wade through those unknown waters, in part, because of her career as a social worker.
It had taught her to find resources for which her family was eligible, such as respite care, and fill out complicated paperwork.
But she knows that's not always the case for everyone.
“I would always say that I was very fortunate because I knew how to access services,” she said.
That's where the project, Family Caregivers Center at Mercy, comes in. The center's objective — to create a comprehensive resource for family caregivers in Eastern Iowa — will provide a central location for caregivers to find the support and help they need, project leaders said.
There are more than 44,500 family caregivers in Eastern Iowa who are looking after aging parents, spouses with chronic conditions or children with disabilities. These caregivers perform medical tasks, provide transportation to medical appointments, cook meals and look after finances among many other tasks.
It's a stressful and sometimes isolating job, Mercy's Charles said.
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“You have to pivot, shift, really quickly,” he said. “You're suddenly dealing with responsibility you didn't used to have.”
And navigating those new waters can be very tricky.
The Family Caregiver Center will add services in stages. It will have a “soft launch” this October, offering what Good called core services to about 50 families.
The hospital hopes to open the center to the entire community in early spring 2016.
“Just like a new restaurant opens to a smaller group to test out the menu and systems ..., we want to work through things and find the bugs,” Charles said.
The center initially will offer a caregiver coach — someone who will form a relationship with the caregivers, assess needs, connect them with exiting resources and help them form a plan — as well as a respite care and a 24-hour careline for caregivers to call with questions. The careline will be answered by former caregivers or specially trained volunteers, Good said.
Over time it will add additional resources, Good said, including an app to connect caregivers to volunteers to help with chores around the house or provide transportation to a doctor's appointment, a resource library, art and music therapies, and educational sessions.
The sessions with bring in legal, financial and health experts to run workshops and answer questions.
Charles said the idea to provide this service first struck him while he was touring a facility in upstate New York, which had a similar program for the caregivers of those receiving care at the hospital.
“Health care systems have relied on this network for years,” he added. “But they are in the shadows — underserved and unrecognized.”
Good and the hospital conducted interviews with more than 100 caregivers to identify gaps and discover what types of services would be the most useful. The team even took the idea to Startup Weekend Cedar Rapids in March — which is where they came up with the concept of the careline and volunteer app — as well as Venture School at the University of Iowa's John Pappajohn Entrepreneurial Center.
The center will not duplicate any services already available in the community, but it will help connect them with caregivers. It also is open to the entire community — not just those who receive medical care at Mercy.
Charles said the hospital has identified a spot within Mercy to house the Family Cargivers Center, and Mercy's Foundation is working to raise $2.5 million for an endowment that will cover costs of respite care and therapies that caregivers may not be able to afford on their own.
“We wanted these services to be accessible to anyone who needs them regardless of their ability to pay,” Good said.
For caregivers, stress a big part of their role
Caring for a chronically ill loved one is a stressful, isolating task.
“As the disease progresses, your role increases,” said Kathy Good, who cared for her late husband, David, for about a decade after he was diagnosed with Alzheimer's. “You have to figure out how to balance employment and care for this person who needs increased care.”
For Good that meant forming what she called her committee — putting together a team of individuals — paid and volunteer — to help her care for her husband, providing everything from music therapy to respite care and eventually long-term care services.
And while those caring for their spouses or parents are more than happy to step up to the challenge, “it's easy to feel isolated, alone and overwhelmed,” Good said.
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Family caregivers on average spend at least 24 hours a week caring for their loved one, managing finances, performing medical tasks, providing transportation, cooking meals and doing the shopping, among many other tasks.
The majority do all of these things while also balancing a job. A study out in June released by the National Alliance for Caregiving and AARP found that 60 percent were employed full- or part-time.
Juggling all these tasks can make providing care for an ill loved one very stressful.
“It's been really hard,” said Nancy Ruhlow, an Iowa City resident who cares for her husband, William. “I can't leave him alone.”
William, 82, has Alzheimer's, Ruhlow said that makes doing simple, necessary tasks, such as going to the grocery store, difficult at times, she said, as he is hooked up to an oxygen tank and needs supervision.
She's found some respite care through the Veterans Affairs hospital and relies on her neighbors, friends and family for help. But the burden primarily falls on her to fix meals, help get him dressed and make sure he takes his medication.
Many caregivers don't receive any help when caring for a loved one — only 32 percent of caregivers report their loved ones receive help from aides, housekeepers or other people paid to help them. One in three caregivers have no help at all, according to the AARP report.
Caregivers frequently have to deal with depression and anxiety, experts said. Obesity rates go up as well, as caregivers often say they don't have time to care for themselves.
In fact, the AARP report found that not even half — 48 percent — of caregivers said their health is excellent or very good. Meanwhile, 17 percent said their health was in fair or poor condition, compared with 10 percent of the general adult population who described their health in similar terms.
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Making matters more complex is the fact that when a spouse or parent becomes sick, it means leaving his or her job and possibly losing insurance coverage in a time when families need that security the most.
“People will decide that they'll take care of their loved one and pay their rent or mortgage” rather than go to the doctors themselves, said Joe Sample, executive director of the Heritage Area Agency on Aging.
The agency provides services to those 60 years and older as well as their families in Benton, Cedar, Iowa, Johnson, Jones, Linn and Washington counties.
“The more extensive the needs, the more isolated the caregiver gets,” he said.