Caregivers of people with chronic conditions get support, resources at eastern Iowa center

May 2024
In Cedar Rapids, Iowa, the Family Caregivers Center and the Chris & Suzy DeWolf Family Innovation Center for Aging & Dementia host numerous group sessions for family caregivers and people with dementia. Mary and Gary Crandall participate in a discussion as part of the Living My Best Self group session for people with early-stage dementia and their caregivers. The centers are a department of Mercy Medical Center in Cedar Rapids.


CEDAR RAPIDS, Iowa — When Bob Kazimour and his wife, Jan, were honorary chairs of a fundraising effort about a decade ago to raise capital to start the Family Caregivers Center on the Mercy Medical Center campus in Cedar Rapids, little did he know that center would become a vital resource for him.

When Jan developed Alzheimer's years later and in time became nonmobile and nonverbal, he found his caregiving role to be increasingly difficult. He turned to the Family Caregivers Center and got access to a wide range of resources and joined a men's coffee group. Those men who are caregivers to spouses with dementia have been meeting since 2016 to talk about what they are experiencing and to share insights on how to better care for themselves and their wives.


"This group has been wonderful for me — we've helped each other a lot," Kazimour says. With the support of the other men in the group, "I don't feel like a lone ranger," he says. Kazimour's wife died Sept. 7.

Kazimour is among the thousands of Cedar Rapids-area caregivers who have received resources, services, programming and support from the Family Caregivers Center since its 2015 opening. According to founder and Director Kathy Good, the center seeks to ease caregivers' stress and equip them to nurture themselves and their loved ones.

Around-the-clock role
A 2020 report from the National Alliance for Caregiving says about 53 million people in the U.S. are unpaid caregivers.

This role can be highly stressful and emotionally and physically taxing; and for some it is a 24-hour, seven-days-a-week role. It can be so strenuous and difficult that the caregivers themselves can pay a price in terms of their own mental and physical well-being. An estimated 40% of caregivers die before the person they are tending to. Mary Ann Grobstich, a community facilitator with the Family Caregivers Center, says these caregivers are at great risk, especially since in many communities there is not much support available.

To address such gaps that were evident in Cedar Rapids a decade ago, Good accepted the challenge of Tim Charles, who was Mercy Cedar Rapids president and CEO at the time, to see whether Mercy could replicate the idea of a family caregiver center he'd seen in New York. Good, who had a social work background, was an acquaintance of Charles. At the time he approached her, she was a caregiver for her husband, Dave, who had Alzheimer's and was a resident of Mercy's HallMar care center.

A group of people who are caregivers to individuals with dementia take part in a journaling group at the Family Caregivers Center on the campus of Mercy Medical Center in Cedar Rapids, Iowa. They learned to use journaling to reduce their stress by processing their feelings.

From concept to reality
Good embarked on an extensive effort to create a center that would aid caregivers and the people they were supporting. She worked with Mercy leadership and a committee of community leaders with caregiving experience to study the gaps in services for caregivers locally, consult numerous caregivers and experts in caregiving, build plans for the center, fundraise for it and coordinate its development and eventual completion.

The Family Caregivers Center opened on the Mercy campus in 2015. Mercy since has opened another center in suburban Cedar Rapids — Chris & Suzy DeWolf Family Innovation Center for Aging & Dementia — to spur innovation in programming for people living with chronic conditions including changing cognitive abilities.

The two centers share a staff of less than a dozen, with most of them having a social work background and many of them with lived experience as caregivers. Dozens of volunteers support the centers' work. The Family Caregivers Center has an annual budget of about $450,000, and the Innovation Center, about $400,000 (excluding the Center for Memory Health that is on the premises). Since partnering recently, Mercy Cedar Rapids and Presbyterian Homes & Services jointly own the buildings. The centers are funded by Mercy and through philanthropy.

Ever-growing list of offerings
Good, her team, volunteers and a committee of community members with caregiving experience are continually evolving and expanding the resources that the Family Caregivers Center and the Innovation Center provide. Many of the centers' offerings are free, though clinical services provided at the Center for Memory Health at the Innovation Center are paid by insurance.

Caregiver resources currently are available at both the Family Caregivers Center and the Innovation Center. Staff meet one-on-one with every family who seeks services and talk to them about their situation and needs then connect them with services. The centers' staff — in many cases along with trained volunteers — offer emotional support; help accessing community resources, respite services, educational presentations, and referrals to legal services such as on wills and advance directives. The centers have a lending library of materials that offer caregivers relevant information. The centers are getting ready to debut an online networking tool for caregivers.

But the bread and butter of the centers' caregiver offerings are the numerous support and social groups that caregivers can access. Many are available as hybrid in-person and virtual gatherings. There are groups available for women caregivers, men caregivers, couples in which one person is living with dementia, and people transitioning out of caregiving after their loved one's death. There are exercise, gardening, journaling and spirituality workshops, all geared to caregivers. Sometimes the workshops are open to people living with chronic conditions. There also are group series on the legal aspects of caregiving, sexuality between caregivers and their spouses with dementia, and loss and grieving. More groups and sessions are being added continually.

The centers offer companions for people with dementia while spouses attend sessions.

Sue Rowbotham and Rick Zingher are volunteer facilitators for the early-stage dementia group.


Hunger for services
Sue Rowbotham is a volunteer who co-facilitates a support group for people with early-stage dementia. She says "people are hungry for" what the centers are providing. Some people participate in multiple support groups and classes and also sign on as volunteers.

Staff member Grobstich says a key reason people choose to become so invested and involved in the centers has to do with the culture the centers have created. She says the focus is on building trusting relationships and on engagement. "We have this commonness in caregiving, and that is humbling," Grobstich says. "This creates an openness to learn and to have real connections with one another."

Kathy Krapfl, the Family Caregivers Center office coordinator, says, "You can see the relief of caregivers when they are in the groups, when they are in the network (of caregivers). They find joy. There is laughter."

It is usual for caregivers in the support groups and other activities to build deep and lasting friendships with one another. They commonly socialize outside of classes and sessions.

Lisa Hawk, a center social worker and counselor, says in this environment, "caregivers feel safe to process what they are going through. They feel they have permission to focus on their own needs," which can be very difficult for them to do.

The centers have found that meeting the multidimensional needs of caregivers can greatly enhance the caregivers' health and well-being, which can in turn improve mental health and clinical outcomes. This can be true for both the caregivers and those they are caring for.

"It takes a whole team to ensure caregivers are healthy and well," says Abby Weirather, manager of the Family Caregivers Center.

Hawk adds: "Caregiving is never going to be easy, but we are trying to make it easier."


Sweet treats and sharing: Men's coffee group is lifeline for members

A coffee group for men meets at the Family Caregivers Center and the Chris & Suzy DeWolf Family Innovation Center for Aging & Dementia. Most of the men are caring for spouses with dementia, or have had the experience of doing so. The centers are a department of Mercy Medical Center in Cedar Rapids.


CEDAR RAPIDS, Iowa — Each week more than 20 men meet at the Family Caregivers Center on the campus of Mercy Medical Center here, with some of them gathered around one of the center's meeting room tables and others joining on the big screen in the room by Zoom.

While the assortment of baked goods on the counter in the corner is a magnet for many of the in-person attendees, the camaraderie, resources and sharing are what draw all the members back to this group each week to delve into what they are experiencing as caregivers or former caregivers of wives or partners living with chronic conditions including dementia.

The men's coffee group meets at the Family Caregivers Center on the campus of Mercy Medical Center in Cedar Rapids. The men spend much of their time talking about the challenges of providing care to spouses with dementia.

One of numerous support groups that the Family Caregivers Center and its sister facility, the Chris & Suzy DeWolf Family Innovation Center for Aging & Dementia, offer, the men's coffee group started around 2016. A Family Caregivers Center volunteer had lamented to the center's founder-director about society's lack of attention to the needs of men caring for loved ones with dementia. And the center's founder-director, Kathy Good, worked with volunteers to start the group.

The group's popularity has led to the need to offer two weekly sessions to accommodate the growing numbers. And sessions now are held at the Innovation Center that opened last summer rather than the Family Caregivers Center.

No forbidden topic
Rob Cook is one of several men who volunteer as facilitators of the group and attend as participants. He says everything discussed during the weekly sessions is kept confidential by all attendees, and "no topic is forbidden." He says the men share their experiences, their hopes, their goals, their spirituality, the practical issues they are facing and potential solutions, and the basics of medical concerns they and their spouses are encountering. A retired physician, Dr. William Gallbraith, helps the group talk through those medical topics — everything from fall risks to incontinence.

Group members learn about the numerous resources offered by the Family Caregivers Center and Innovation Center, and they often share with one another interesting books and articles they've found helpful on dementia or caregiving or similar topics. They point each other to community providers and services they've used, such as a dentist at a local community college who essentially makes house calls.

Many of the men knew each other socially and/or professionally before joining the group. Many have become friends through the group. Some men continue to attend the coffee gatherings even after their spouses pass. The group began with five attendees; the count has ebbed and flowed over time. There now are about two dozen men attending between the two meeting times.

New role
Bob Kazimour is a men's coffee group member who was a caregiver for his wife, Jan, until her death. He says the support sessions are vital for men because for most of them caregiving is a new role. Kazimour was the youngest — and the only boy — in a family of five. Between his sisters, wife and two daughters, he was always taken care of. "We men usually didn't do the caregiving," he says. "We weren't exposed to it. We cut down trees and dug holes. We didn't take on the caregiving roles."

Group member Paul Swearingen agrees. He says when he married his wife nine years ago, she already had Parkinson's and later was diagnosed with dementia. He says with 60% of family caregivers being women, society doesn't always see men as caregivers and men don't always anticipate that someday they will become caregivers. But he says husbands generally are the best caregivers for their wives because they know them best and can serve as their advocates.

Swearingen says he recognized that he was trying to do too much on his own and so he has learned, in large part through the coffee group, that he needs to accept help from others and to delegate some tasks to people who can help him.

He says the group also has helped him understand the importance of caring for his own health. He says he had put his own well-being on hold for the nine years of his marriage as he focused on caring for his wife. He's now been convinced to see a physician and has learned that his own health is at risk due to neglect. He is now making some healthy lifestyle changes.

Practical solutions
Many of the men's discussions are focused on problem-solving for concerns that have arisen as they care for their wives. They share cooking tips — some of them are the primary cook of their household for the first time now. They talk through how they've learned to safely get their wives in and out of the shower to prevent falls.

One group member, Larry Doehrmann, came up with a fidget blanket that he shared with the group. Each blanket has items attached that people can manipulate to keep their hands busy. The blanket kept his wife occupied in her restlessness. She had dementia. She died in 2022, but Doehrmann remains active with the group.

Swearingen developed a gait belt, or a sturdy belt that a companion can use to safely steady their loved one. He offered the belts, which are used for fall prevention, to group members. He now is looking to patent it.

The group has spurred this creativity not just around practical concerns but also when it comes to how the men come together to process the emotions they are feeling. So many share similar experiences and perspectives that they are able to empathize, encourage and cheer one another on.

Cook says, "Men are not supposed to be good at expressing our needs and fears, but we've found that we are better at it than we thought we would be."

Group member Tom Brennom says he has been like a sponge, absorbing all the learnings and experiences of the group. He sees the group as helping him live his life to the fullest. "I'm passionate about this group," he says.

Swearingen credits the coffee group members with convincing him to see to his own health and prevent a personal health crisis. "I probably wouldn't be here if it weren't for this group," he says.

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