Being caregiver for a loved one is one of the hardest, most exhausting and rewarding jobs in the world.
Milestones Area Agency On Aging presented the 16th-annual Quad Cities Caregiver Conference on Saturday, Nov. 14, at Golden Leaf Banquet Center, Davenport.
About one in every four U.S. adults are caregivers – for a loved one who is disabled, elderly or has a complex medical condition. Milestones provides its annual conference to support area caregivers with information and resources, inspiration from a keynote speaker, plus chair massages, therapy dogs and light refreshments – all under one roof during one morning.
This year’s keynote was Marjorie Pennington-Healy, the Director of Resource Navigation and Financial Assistance at the Elizabeth Dole Foundation. A 2017 Dole Caregiver Fellow Alumna from Maine, she has dedicated her career to supporting and advocating for military and veteran caregivers.
She’s served as lead alumna for advocacy and special projects, reflecting her leadership and ongoing commitment to the caregiver community.
Pennington-Healy is author of Bringing the War Home: The Life of a Military Caregiver, which she discussed Saturday.
Davenport-based Milestones (successor to the previous Generations Area Agency on Aging) provides programs and services to help older Iowans live safely and independently at home. Programs include nutrition, information and assistance programs, caregiver support programs, health promotion, and elder abuse prevention. Milestones’ planning and service coverage area includes 17 counties in Iowa.
“Those core services are nutrition support to help older adults remain independent in their community of choice and their residence of choice with safety and dignity for as long as they can,” Sonita Oldfield-Carlson, Milestones CEO, said Saturday.
CASI in Davenport has a group meal site, where people can get free meals. “And we do that on a contribution basis because the Older Americans Act funding requires that we not charge for the services, but that we offer an opportunity to make a contribution toward the services,” she said. “It's a voluntary contribution.”
“We have home-delivered nutrition for those who are homebound,” Oldfield-Carlson said. “So a lot of people think about that as Meals on Wheels, that's the brand name. But we also have a version of that where we have volunteers and paid staff, part-time, delivering meals to people at home.”
“The next kind of significant service area are the home supports and our staff who are the information and assistance and resource navigators. So when someone calls and is looking for support, those are the first-line folks who take those calls and then help to either navigate them to community resources or refer them inward to other staff that we have,” she said.
"We also have specialists too in our agency serving those 17 counties, two elder rights specialists, and they deal with community education and then also one-on-one for suspected fraud or exploitation of older adults. Then we have our family caregiver specialists in each of our offices. We have three offices in Davenport, Burlington, and Ottumwa serving those 17 counties.”
Over 40 exhibitors Saturday
The 16th-annual conference featured over 40 vendors (a variety of organizations serving the senior population and caregivers), including Riverbend Transit, home health agencies that help with personal care, respite, and homemaker services.
“There are some things that can help someone be that caregiver, because caregivers are 24/7 -- oftentimes if it's someone living with them,” Oldfield-Carlson said. “We have support through the Area Agency on Aging, for those who are in greatest need, we can put supports in place to help provide brief respite. So most of the time people want that to be in-home.
“Sometimes it's out-of-home with an agency for like half a day or something like that,” she said. “Or it's someone coming into the home to relieve the caregiver so the caregiver can go and do errands or even something for themselves if they need, some kind of a personal appointment or their own medical care. And then we also do— our caregiver specialists provide support groups. We have a number of support groups. There are a couple of new ones that will be starting up in January.”
The Milestone caregiver support groups include the second Monday of the month at 10:30 a.m. at its office, 4440 N. Brady St., and the first Monday at 10:30 a.m. at Our Lady of the River Catholic Church, LeClaire.
New support groups will start in January in Clinton and Muscatine.
“The caregiver conference benefits area caregivers in so many different ways,” Milestones community engagement director Lori Leipold said Saturday. “We have more than 40 area businesses and nonprofit organizations that provide services and resources to caregivers represented here. So this is four hours for them to talk to them, go around, collect all the information.
“Also, we have our inspirational keynote speaker, Marjorie Pennington Healy, and she came traveled from Bangor, Maine to be here with us and has a really inspiring message for caregivers,” she said, noting she gave two separate talks during the free event.
“We're just really happy to give caregivers this day where they can get information and get some pampering -- get a chair massage, interact with a therapy dog,” Leipold said. “So it's just a great day for caregivers.”
Biggest challenges
“One of the biggest challenges they face is that there isn't enough respite and caregiver burnout happens very quickly,” Mindy Smith Pace, Milestones family caregiver specialist, said Saturday. “Unfortunately, a lot of the funding's been cut and we try our hardest to support caregivers finding ways to fund respite care and get them caregiver support. Helping them connect with other caregivers is also hard because they have their loved one with them all the time.
“They can't always leave their loved one,” Smith Pace said. “We do have one support group loved ones are able to come to, and they go to one section and the caregiver goes to another, so that way they can do that. But it's very difficult to find support and resources.”
“It’s hard for a lot of our military and veteran caregivers to find time for themselves to be able to have that support,” Pennington Healy said. “It is financially, honestly, because they leave their career and they go into caregiving. And I think this is good for every population because, whether you're civilian or you are in the uniform, it's the same thing.
“You go from caregiving 24/7 you're not bringing in any income, and you've got some financial issues,” she said. “In the work that I see every day is that we're trying to provide that financial stability, that financial wellness and education, as well as connecting to other resources, which is working from home or getting them connected to VA benefits.”
“Other people have to get through the Medicaid system and Medicare, and there's a lot there too,” Smith Pace said. “Families have to negotiate what's best for their family members, and that can be very, very frustrating.”
It’s vital for caregivers at support groups to help each other, she noted.
“We have time for them to talk with each other because oftentimes you find answers from each other,” Smith Pace said.
“That's probably the most important thing I learned as a caregiver is to ask lots of questions of other people who've been there because their information is vital to my survival.”
“Milestones provides our services at no cost to people,” Leipold said. “You need to be 60 years old or older, but if you live in one of the 17 counties that we serve and you're 60 years or older, you could be eligible for Milestones programs. We focus on people who have lower incomes.
“They have other limitations. So we focus on folks in greatest need of our services, but we also connect people who can pay privately,” she said. “And we help with accessing care and services through Medicaid and through Medicare.”
“Sometimes people don't know how to access those services, so a lot of times our services is helping people understand how to access what they already have as a benefit,” Smith Pace said. “If that doesn't work, then we start looking at community resources. Are there other resources? And if those don't work, then Milestones.
“There’s a process we go through trying to go through all the different loops to get it,” she said. “We usually are able to help families and find resources. And sometimes it's helping a family find one resource until another kicks in as well. For example, applying for Medicaid, but while they're waiting for Medicaid, we can help them apply for other things.”
Growing older population
There are an estimated 825,000 Iowans age 60 and over, representing 25 percent of the state’s population -- one of the fastest growing segments of the population, including the fastest growing segment – those 85 and older.
“The need is growing. We do receive federal and state funding, but that's not increasing as the needs increase,” Leipold said. “So we look to the community to help us to fund our programs, through community grants and donors.
“All of our people who receive services through Milestones have an opportunity to contribute,” she said. “We know they want to preserve their dignity, so they feel they don't want to get a handout necessarily. But if they can contribute $5 towards a community meal, then they feel better about it.”
“While the population is rising, so are costs,” Smith Pace said. “We're not as able to provide as many services because the costs for all those services are going up as well. I was in shock the first time I heard how much in-home care actually costs. You know, it's a pretty significant amount for one hour of care. And if a family needs to have constant care, it adds up really quickly.
“And assisted living, what that cost is and what nursing homes cost, people are shocked when they find out the cost of those things,” she added. “The reality is we all need to prepare for those things or we're going to end up having to have a state that's going to have to help us prepare, and those resources just aren't there.”
Milestones has 75 employees and 188 active volunteers, Leipold said.
“There's lots of people who are getting the help they need and are very, very thankful for it,” Smith Pace said. “I have several families that the caregiver called and they just needed to be heard, you know. So I was on the phone. Lori's heard it because her office is right next to mine.
“I've sat on the phone for three hours and you listened to somebody cry and try to figure out what their next steps are,” she said. “Milestones provides support in lots of ways, not just financial and resources, but just having people to listen. Our care coordinators are amazing. We take the time and we take it very personally where we really show our heart on our sleeve and try to help as much as we possibly can.”
A military caregiver’s story
Marjorie Pennington-Healy wrote “Bringing the War Home: The Life of a Military Caregiver” in 2019.
“I didn't want to write a perfect story about a perfect caregiver. I wanted to write a real one,” she said Saturday in her second talk. “I wanted someone reading it to say, wow, that's me too. It's important to remember that the book captures a particular chapter of my life. Life has changed since I wrote the book, but the lessons about grief, advocacy, identity, connection have stayed with me.”
April 29th, 2006, is a day she will never forget. Her husband at the time, Sergeant Matthew Pennington, was on his third deployment. He was serving in Iraq when his Humvee was struck by a roadside bomb. He had to have part of one leg amputated and he was in a military hospital for a year.
“There were surgeries, rehabilitation, the work of learning to walk again. I stopped working and became his full-time caregiver -- I learned things I had never imagined needing to know. I became the person tracking treatments, asking questions, remembering instructions, and trying to make sure nothing was missed. And then there was the challenge of coming home. People could see the injury to his legs. They couldn't always see the post-traumatic stress or the traumatic brain injury. that affected so much of his everyday life.
"Those invisible wounds could be just as difficult as navigating the physical," she said. "I learned that recovering from invisible injury didn't mean the struggle was over.”
“That experience also changed me. I had to become organized, persistent, and willing to speak up. But I also was frightened, overwhelmed, and carrying a great deal that people couldn't see," Marjorie said. "And as we tried to navigate those challenges, life brought another kind of pain, one that made me think even more deeply about mental health, grief, and the importance of asking for support.”
Matthew attempted to take his own life, and Marjorie’s brother Matthew did die by suicide in 2009.
“My brother and I were close. He was someone I could count on, someone I could talk to, someone who knew me long before I became a military caregiver,” she said. “Losing him was devastating. Like many people who have lost someone to suicide, I asked myself painful questions. What had I missed? Was there something more I could have said or done?”
“Here I was, trying to understand and support my husband through his invisible wounds of war while grieving the loss of my brother to suicide,” Marjorie said. “I was carrying fear, grief, responsibility, and there were days I didn't know how to hold on. I share this note not because I want my story to be defined by tragedy. I share it because caregivers can carry grief and trauma that no one sees.
“We can look like we were managing everything, On the outside while struggling deeply on the inside,” she said. “Eventually, I had to understand something very important. I could love people with my whole heart, advocate for them, and show up for them, but I could not control every outcome. I needed support too.”
She ended up being caregiver to her husband and her mother (who had stage 4 colorectal cancer) at the same time.
“The challenges were different, but the exhaustion, the advocacy, and love were just as real,” Marjorie said. “I also remember how proud she was when I told her I had become an Elizabeth Dole Fellow. That mattered to me. In the middle of so much difficulty, she could still see possibilities for my future. If you cared for a parent, you may know how strange it feels when the person who used to take care of you becomes the person you care for.”
After her mom’s death, she became caregiver for her father, a declining Vietnam vet with serious health issues.
“Some of the hardest choices involved getting the kind of care he needed, including hospice and nursing home care,” she said. “Those decisions were painful, But I learned that choosing more help or a different setting for care isn't failure of love. In writing about my dad, I wanted other caregivers to know that complicated feelings can exist together: love, exhaustion, gratitude, anger, sadness, and relief.
“All of that can be a part of caregiving. But at that stage of my journey, I had spent years being the person people turned to, and I had become exhausted in a way I didn't fully recognize until much later,” Marjorie said.
Strong yet still in need of help
“I think caregivers sometimes get very good at looking capable. People tell us how strong we are, and we may be strong,” she said. “But strength doesn't ease the need for rest, help, or someone to ask how we're really doing. I wrote honestly about the exhaustion because I wanted people to recognize it, not to feel ashamed of it. Sometimes naming what we're experiencing, experiencing is the beginning of doing something about it.”
Marjorie talked about the crucial need for caregivers to get even short breaks.
“I wanted others, other caregivers, to recognize their lives in these pages. Not because every story is the same, but because the feelings can be so familiar,” she said. “I hope you recognize the effort and the love behind the things you do. I also hope you know you deserve care and support for yourself. This is a question I wish I had asked myself much earlier. Who takes care of the caregiver?
“I spent a long time telling other caregivers how important it was to take care of themselves. But I wasn't always good about taking my own advice,” Marjorie said. “I had a reason for not stepping away. I told myself there was too much to do, that no one would do the things the way that I could do them. Eventually, I learned that even a little time mattered.
“Fifteen minutes with a cup of coffee on the porch, walking and working into the flower bed,” she said. “Baking something because I wanted to. These may sound like very small things, but they were moments when I could remember who I was. I also had the opportunity to caregiver retreat after years of not really taking a break. Stepping away was difficult. I still wanted to check in and part of my mind was always at home.
“But being with people who understood what I was experiencing was powerful,” Marjorie said. “That was a part of my tribe. People who didn't need a long explanation, people who understood what I could love. I could love a person I was caring for and still need time for myself. There was no judgment. That's right. I didn't feel judged by them. For some caregivers, a full day off is not realistic. I understand that.
“I wouldn't want anyone to hear me say that taking a break is easy, but I do want to encourage small steps, accepting help when it becomes available,” she said. “I didn't want to lose my identity, right? And baking was a big thing for me. I love to cook. My dad was a chef, my mom cooked. I learned from them. And I loved making food for other people and seeing them happy. That was a part of my identity. So taking those small breaks for yourself is huge, even if it's 15 minutes. It doesn't matter what it is.”
At the Elizabeth Dole Foundation, “I have the privilege of leading a team that helps caregivers and families find resources, navigate complicated systems, and receive support when they are facing difficult circumstances,” Marjorie said. “This work is deeply personal to me. I remember what it was like trying to make those calls.
“To try to explain what I needed, and to wonder whether anyone was really hearing me. Now I have the opportunity to be a part of a team that listens to these families and helps them find a path forward,” she said. “I never imagined that some of the hardest experiences of my life would help me discover work that means so much to me. I don't believe that makes painful things go away, but I am grateful for the experiences that helped me bring compassion and understanding to other families.”
“What I learned is that speaking up matters. Asking questions matters,” Marjorie said. “And what may not be able to change every decision or solve every problem, but we can use our voices. I also learned to celebrate the small victories. In caregiving, progress is not always dramatic.”
“Maybe it's treatment that helps, or a moment of laughter with your care recipient, or a day with a little less pain,” she said. “Those are things that matter. Most of all, I learned that no one should have to carry every challenge alone. Accepting help does not erase your strength. It is one of the ways we protect it.”
Quilts of Valor
“We have this year, because we're celebrating the 250th anniversary of the country, we invited a number of veterans organizations,” Oldfield-Carlson said of Saturday’s conference, including Quilts of Valor for the first time.
Terry Austin of Moline, the group director, said the QC chapter is one of 600 nationwide, which began in 2003, soon after 9/11. The QC group has presented 2,800 quilts to area veterans since 2012. They’re made by about 50 volunteers, Austin said.
“You wouldn't believe it, the letters that I get,” she said. “If I'm having a crappy day, all I gotta do is get that book out and read them, and that sets my day back where it needs to be. I had a Vietnam vet, and I tell this story all the time because this is the one that struck me the hardest. You could see his visible scars, and he was missing part of his arm. And he came up to me after— we do two award ceremonies a year— and after the award ceremony, he came up to me and he said, Miss Austin?”
“He said, I have to tell you, I've been bitter for 45 years, and you took that from me today,” she recalled. “How does that not make you go make another quilt? His wife was crying behind him, and I looked at her, I said, are you all right? And she said, you gave me my husband back. It's just a quilt, but that quilt healed his heart.”
“We've given to someone that was on the USS Missouri and witnessed the surrender of the Japanese,” Austin said. “We've given to a Battle of the Bulge. He was in Rock Island. We gave to a Tuskegee Airman who was from Rock Island.”
She’s a quilter herself and was asked to lead the group in 2012.
“I went home and talked to my husband and he said, ‘Well, are you going to take it? And I said, no, they want me to lead it.’ I thought I was just going to quilt for them,” Austin said. “I said, I didn't go to be in charge. And he looked at me and he said, ‘I don't know anybody better for our veterans.’ So how do you not take that?”
“I took the position and a year later I lost him. So he could not have given me a better gift,” she said of her husband. “He really could not have given me a better gift. Because this has healed my heart. This group has healed my heart. My veterans have healed my heart. So it's been a good thing. That was 14 years ago. I thought it would last a year.”
Her father was an Army vet who served in the Korean Warr. “Actually, he was in Korea when I was born. He didn't see me till I was 6 months old,” she recalled.
Austin said Vietnam vets “are my hardest ones right now to give to because they feel like we didn't treat them well when they came home, so they want nothing to do with us. So we have to do a lot of smoothing up,” she said. “But they are the best letters that I get are from those people.”
“They are the ones in need,” she added. “Those are the ones that need it the most. But they were so bitter from what happened when they came home that you can't blame them. The letters that I get from them are just astounding.”
Therapy dogs provide comfort
Jon Hall, co-founder of Legacy Therapy Dogs, was at the conference with a number of their therapy dogs, who do about 250 to 300 visits a year, including to nursing homes and senior centers. The group reorganized in 2024, after about 15 years as QC Canine Assistance Network.
“They go through a basic training program,” Hall said of the dogs. “Then they all have in our organization, they all have an advanced class, but it's a year-long advanced class, so they can come once a month.”
“They're all getting what we consider continuing education, and they're all going to be at their best behavior of acting like this out in public,” he said, pointing out Roxie, a golden retriever who made her second-ever therapy visit Saturday.
“All of our dogs, before they come out in public like this, are all canine good citizens through the AKC (American Kennel Club) program. So we get them all tested,” Hall said.
“Out of the 300 visits, we do a lot of reading programs with kids all the way down to grade school,” he said. “We do a lot of nursing homes and stuff where we take the dogs in for the nursing homes and everything.”
“We do the memory care units, and it's amazing when you walk in with the dogs and the memory care units, you walk in and you see the residents just kind of sitting there, and they come up and they see the dogs and they just open up and they start talking,” Hall said. “We had one where we took the dogs in and the lady never talked to anybody, never talked to anybody, barely even talked to the staff. But when we came with the dog, she talked to the dog like she'd known this dog for the last 50 years.
“It brings their stress level down,” he added. “It puts a smile on their face.”
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