Aging in place can be harder in rural communities, where resources and trained help can be scarce or far away. But in Chautauqua County, New York, we meet one woman who’s making a huge difference for countless isolated caregivers.
It Just takes One Person
Before we begin, a quick note. This series was created *before* the COVID-19 pandemic. You’ll hear an update on the caregivers and families you’re about to meet at the end of the episode.
ASHLEY MILNE-TYTE: City dwellers are used to having everything close by, including help when they’re taking care of someone. But in rural areas, backup can sometimes be further away, and there may not be as much of it to go around. That’s why one organization--even one person --can make a huge difference
when you live in the country. That’s where we’re going in this episode -- to Chautauqua County, in New York State. There we’ll meet two spouses, both looking after their partners. At a crucial point they each got help from a county employee whose whole job is to empower people like them.
JENNIFER ELLMAN: For somebody to feel like they've lost a piece of themselves, they've lost their friends, how can we get them reconnected with the community again, society?
AM-T: Welcome to Tight Knit, a podcast about the many ways people are working to build stronger relationships and communities. I’m your host, Ashley Milne-Tyte.
AM-T: We’re starting in Mayville, a village in Chautauqua County, right on the western edge of New York state.
This area is farming country, with rolling hills and vineyards everywhere. It’s a huge grape growing area. As you drive into town the main street dips toward the shores of long, skinny Chautauqua Lake.
I’ve come to the county’s Office of the Aging, where a client is waiting to meet me - a local man named Richard Clute. He goes by Dick, and he says his wife has also had a nickname since they met back in high school.
DICK CLUTE: Her nickname is Marty. All her friends and everybody knows her by Marty. Some people don’t know what her real name is, Marian. You say Marian - who’s that? And um...she turned out to be quite a lady.
AM-T: This year Dick and Marty will have their 60th wedding anniversary. They have three grown children. Dick is 78, tall --over six feet--and dignified, wearing a pressed checked shirt and khaki pants. Marty isn’t here--she now lives in a nursing home. But she is why Dick first came to the Office of the Aging, after becoming her full time caregiver. He saysMarty’s behavior began to change in small ways-- things like not being able to work the TV remote. She was a fantastic cook but started messing up ingredients. Then her driving became erratic. Eventually they found out she had dementia. They still went out, but Dick had to plan for that.
DICK: Little by little things got to the point where I got...I was reluctant to take my wife anywhere...because of the difficulties encountered with a man having to take his wife to the ladies’ room, and not wanting any things to happen in the car or on the way to wherever we were going. One thing we did do even after her illness started is she liked to go for rides. I figured out how long we could get out and uh, be away from home and get back safely without needing the facilities.
AM-T: At home, he’d always done the outdoor jobs while Marty did the indoor ones. Now, he was doing everything he used to do and everything SHE used to do, as well as tending to her. And that’s when he met someone who changed their lives.
JENNIFER ELLMAN: Jennifer Ellman, and I’m the caregiver coordinator for Chautauqua County.
AM-T: Jennifer works for the Office for the Aging...her clients call her Jenn. She’s in her 40s, with light brown hair, brown eyes and a warm smile. She’s been doing this work since she was a college intern at this same office, going along on home visits with an older colleague.
JENN: The very first home visit I went to, um, was a elderly lady with dementia and the caregiver was not being kind to her and to the point where the police had to be called. And right then and there I thought, Hmm, this is happening in people's homes. And so I started really with elder abuse prevention, which in turn was a lot of caregiver stress.
AM-T: She realized how much support caregivers needed -- and how getting that support could boost their quality of life AND help the person they were caring for. When Dick first met Jennifer, he was totally worn out. A neighbor had told him about a class Jennifer was leading called Powerful Tools for Caregivers. It’s taught across the country. It focuses on getting caregivers to look after themselves while taking care of someone else. It also lets them know what local resources are out there and how to tap into them. One of the pieces of homework Jennifer gave was for everyone to do something for themselves every week, something many caregivers simply stop doing. Dick knew it was good advice, but he found it hard to follow.
DICK: I probably failed. I would come back and when it came my turn to say, ‘what did you do for yourself?’ and I says, I took a nap. Or I went for a ride. Or I would just come out and say, I don’t know what to do. My friends have gone on with their lives without me, it'd been long enough. So after all that time, I had one of my old friends from work who check in with me periodically, how's it going and so on. But I had found it difficult for me to follow up on these suggestions on what to do with your time from week to week, because I'd forgotten how.
AM-T: Sitting opposite Dick, Jennifer Ellman says he is being hard on himself.
JENN: I would never say that you failed during - I would say the first few weeks were rough for Dick. I think there's a little skepticism too, coming in, that...um, but anyway, we talked about social adult day programming. That's what I remember the most. And I remember the other group members telling Dick, just send your wife, it'll be okay. And he was really reluctant.
AM-T: Social adult day programming -- some people just call it ‘adult daycare.’ At the local program near Dick, they do crafts, play games, interact with other people - things Marty had always loved. Dick eventually warmed up to the idea...then Marty did.
JENN: And I'll never forget when he came back and he said that his wife tried the day program and the look of amazement on Dick's face was just priceless, because he said she actually came home and she was more stimulated - and that's what it's designed to do, too. And she wasn't very talkative back at that time. And Dick was just so floored that his wife started talking again. And it was...it brought some light. I could see it in Dick's face too, that it brought some joy to his wife. And that's very nice when it's hard to find that sometimes in these caregiving situations.
AM-T: The Powerful Tools for Caregivers class lasted six weeks, and it was affecting Dick little by little. He was more relaxed. Jenn says he’d had some time to himself for the first time in years. One day he came to class...
JENN: And he's looking confused, and he looks at the group and he goes, ‘I don't know what I want to do with myself anymore’. And out of nowhere I just said, ‘run around the house naked Dick.' And it was the first time that this man cracked a smile. And I said, don't do that. That is the worst advice, the police may be called. But let's look at what you can do. And, but it was the first time I seen him smile since day one of those classes. And I'll never forget that.
AM-T: Do you remember that?
DICK: I do, I do. That must have been a turning point or something because things went from being dark and dismal and couldn’t have been worse to suddenly it’s like I felt better.
AM-T: Marty continued to go to the social day program...until she started falling. Dick went back to caring for her full-time. Jenn Ellman helped him apply for funding, enough to hire two aides. But he was still looking after her nights and weekends. So last year, their family doctor suggested it was time to move Marty to a nursing home----as much for Dick’s health as for hers. Dick agreed. He says Marty is happy there. But living alone for the first time in his life has been a big change--so he’s grateful for Abby, their Husky mix.
DICK: Our dog, my good friend, understands more people words than you would believe. I say different things and she knows just what I’m talking about. It’s neat.
AM-T: He says for a long time, she looked for Marty around the house. And when Marty was still at home Abby developed a protectiveness about her owners, and a concern for their health. He says if anyone made a noise during the night, a cough for instance...
DICK: She put her front feet up on either the bed or the person's legs and put her nose right up to your face, checking to see, I believe, if you were breathing. She does to this day, if I make any sounds in the night, she is, puts her front feet right up on the bed and puts her nose right up to my face to see if I'm okay. And when I, as soon as I say, ‘OK Abby, go back to bed,’ and I give her a pet, she lays back down and goes back to sleep.
AM-T: She doesn’t like it when he goes out without her, and they spend most of their time together. And Dick has had a lot of time to reflect. He knows he did his very best for Marty.
DICK: And after our years of marriage and as good a wife as my wife has been, she deserved all I could give her. And I gave her almost everything I had.
AM-T: Jennifer Ellman says giving up day-to-day care thing for Dick.
JENN ELLMAN: So just because you know, your loved one goes into a nursing home, it doesn't mean you're not the caregiver anymore. You're just not providing the care. Now he goes, he visits his wife, he's not strained. He can offer his, you know, his love and his time. And that's what needs to happen in this part of his journey. And he's healthier for it. And so his life can continue.
AM-T: When she thinks back over the years that she’s known Dick, she says she’s witnessed a real change. He went from being a skeptic about what classes like the one she ran could do for him, to a convert...
JENN ELLMAN: And for him to come around and to see the color come back in his face, to see him smile that one day, says a lot. To be able to be that strong man for so many years, to be willing to be vulnerable, to say, ‘I can't do this on my own anymore and I need help.’ It says a lot about his character.
AM-T: She says that Powerful Tools class he was in - the caregivers got so much out of it they spun off into a support group, and they still meet regularly. And because she and Dick have become friends, she’s tapping him to help other caregivers in their area...especially men.
JENN ELLMAN: Now we're thinking of how can we build some sort of, some social engagement for like, say even our male caregivers to come together as just male caregivers. Let's have a barbecue, let's do something like that. We need to start thinking outside of just respite and these other things. There's a lot more components I think that come to caregiving. For somebody to feel like they've lost a piece of themselves, they've lost their friends, how can we get them reconnected with the community again, society? And so we're going to look to hopefully do something in the future with that. So it's kind of a neat partnership.
AM-T: Yeah, would you agree?
DICK: The great part about what I have been through the last number of years has been how I've been able to open up and asking for help. I've always been a bit of a private person and, uh, now...I don't think there's much left for me to talk about that I haven't talked about. Jenn has heard it all. She knows where I'm coming from. And I felt that I have received all the help and caring help and support that a person could ever possibly want. And um...I owe most of it to Jennifer Ellman.
AMT: How does it feel to hear that?
JENN: Aww, almost it brings tears to my eyes, so...and you know what Dick has said thank you over and over, and I know how appreciative he is. But the way he's actually helping me back is helping other caregivers that were once in his shoes, and that’s the best payback he could ever give us.
AM-T: About half an hour after saying goodbye to Dick and Jennifer, I pull up outside a small, two-family home on a side street in Jamestown... about 20 miles south.
I’m here to meet another client of Jenn Ellman’s: someone who also took the Powerful Tools for Caregivers Class.
AM-T: I head up a narrow staircase...
KATHY MCCOY: Hello, hello!
AM-T: Hi…
KATHY: Come on in…nice to meet you too…
AM-T: This is Kathy McCoy. She’s originally from Long Island but she and her family have lived in Jamestown for two decades.
She’s 57 now. Her husband Paul is 71 and has Alzheimer’s disease.
Kathy has diabetes and multiple sclerosis herself, but she still cares for Paul around the clock.
We’re sitting together at a table at one end of the McCoys’ living room, while Paul sits on the couch at the other end with their aide, Jessica. The only way Kathy could talk to me was if I came during the three hours a day she has an aide to help her care for Paul.
[Kathy says: ‘Do you have the keys, Jessica?’ then you can hear Jessica off-mic saying ‘They’re right there on the table…]
AM-T: Still, it’s a small house and we’re all in the same room. We can hear Paul laughing or repeating a word or phrase over and over. Sometimes he comes over to us while we’re talking. Kathy says Paul was once a skilled carpenter.
KATHY: He built the Olympic rings for the 1980 Winter Olympics, he built the stage the hockey team stood on. [In the background you hear Paul saying ‘he was a carpenter.’] He built the cradle that our children slept in...he built a lot of stuff.
AM-T: Paul and Kathy have been together almost 35 years. The two of them met on Long Island when Kathy was a single mom with a four-year-old daughter. Paul was a Vietnam vet then in his mid 30s. A few years later Kathy and Paul had a daughter together, Jessica, then a son, Andrew. He was a loving father to his stepdaughter and his two biological children. But as he got older he began sniping at the kids, then verbally attacking them.
KATHY: My plan was after the kids graduated was to get out of this, ‘cause I was done. Nobody would listen, kept telling me there's no issue. It's...I was done. I couldn't do this anymore.
AM-T: Because of his behavior?
KATHY: Yeah. Yeah. His verbal abuse to the kids. Just...I just...He accused my cat, that one right there, that big orange cat of stealing his glasses. That's not normal. Cats don't steal people's eyeglasses.
AM-T: Still, she couldn’t leave him. She kept thinking back to how kind Paul had been to her and her eldest daughter Kristen when the two of them first got together. He’d slowly won her over with his persistence and thoughtfulness. But his condition kept getting worse. It was only in 2016, almost 20 years after his behavior first started to change, that they got a diagnosis of Alzheimer’s. By this point, Paul was going to adult daycare for part of the day, twice a week. And it was AT the daycare that Kathy found out about Jenn Ellman’s Powerful Tools for Caregivers class. She realized she could go while Paul was there.
KATHY: I was like, really surprised to hear the stories that all these other people had to talk about. And I kind of felt like we fit in somewhere, if that makes any sense. When you're a caregiver, people just fall away. You know, you don't have visitors, you don't have [she is crying] a social life, I'm sorry, you don't have anything except your caregiving - and your family.
AM-T: Being at the Powerful Tools class, realizing there were other people who also felt isolated: it comforted her. And when Kathy listened to Jenn Ellman talk about caregiving, she began to see things from a different perspective.
KATHY: Well, the first thing that she said in that class [Paul laughing in background], which really hit me because it had been such a struggle with him and like I said, I was divorcing him. I was done for so long, and
The first thing she said was you have to divorce them and remarry them on different terms. That struck me as that's what I've been doing for all these years, you know, slowly. So everything started to fall into place. It gave me peace, gave me comfort, her words gave me reassurance that we're not alone in this journey, which...it really feels like you are.
AM-T: This was something that Dick Clute talked about earlier -- that this class helped him feel like he was not alone. And also helped him to deal with the fact that his relationship with his wife had changed. But Jenn’s assignment... to do something for themselves each week? Kathy had an easier time with it.
KATHY: I met my goal every week.
AM-T: What did you do? What kinds of things?
KATHY: I went shopping. I went and got my hair - dyed my hair, it's bad now, all the gray, but it was really bad then. I hadn’t had it cut in I don’t know how long. It was terrible. But I finally started to do little things like go for a ride, just get in the car and go see the color changes. [Paul is heard laughing in the background]
Just things that I just stopped doing that I enjoy. I like nature, I like going to the beach. I like going to the woods, you know, I just liked that stuff and I stopped doing it. Totally. So, yeah. So it taught me a lesson to not forget about myself.
AM-T: And Kathy needs to take care of herself because she has multiple sclerosis. Today, she gets about six hours’ sleep a night. She says that’s a huge improvement on a few years ago when she first met Jenn at the class.
KATHY: She looked at me and she saw how tired I was. And she said how much, how many hours a week do you get for yourself? And I said, ‘four.’ I have four hours a week to pay the bills, do my errands, do my shopping, do whatever I have to do...yeah, that’s all I had was four. And she said, ‘no, that’s not enough,’ so she got me more time.
AM-T: Jenn got Kathy more time for herself by arranging for her to have more help. Jenn helped her get access to funding so Paul could have more hours in daycare, and they could get an aide to help out at home. As a Vietnam veteran, Paul already received a pension from the VA, and in 2018 they got more money when the VA acknowledged that his Alzheimer’s was indirectly connected to his service. But even though things are easier financially these days, and the family now has an explanation for Paul’s past behavior...Kathy is still angry about all they’ve lost.
KATHY: He was an amazing man, and he was robbed. [Paul talking in background] This disease has robbed everybody, not just him. It's robbed us all. He used to be my partner, and he's not anymore, and it's not by any fault of his own, but it's just not easy.
AM-T: As we’re talking one of Kathy’s cats jumps up on the table and starts sniffing around the microphone. Kathy says she’s a diva...
KATHY: She won't eat dinner unless I feed it to her out of my hand. I am not even kidding you. She has to eat from my hand at night.
AM-T: The cat is closely followed by Paul. He pops up off the couch and hovers by the table…
[Slightly off-mic] PAUL: I cared.
KATHY: I know you cared.
PAUL: I cared.
AM-T:A moment later he heads back to the couch.
AM-T: Kathy sometimes wonders how much longer she’ll be able to take care of Paul. Her own health isn’t great. With the extra funding they now get from the VA, Kathy says she could place Paul in a nursing facility.
But for now, she’d rather look after him herself.
KATHY: ‘Cause I know he's getting cleaned. I know he's getting fed. I know he's getting that piano. He plays his piano. He started tapping one day, so I went on to Amazon and I bought him a keyboard. You're gonna play a song. He's going to play a song for you. Turn it on, Paul. Turn it on.
AM-T: She says Paul and his twin brother used to play the piano together years ago. So she thought, why not try it?
AM-T: Playing the piano gives him pleasure. And she wants him to experience that as much as possible.
And she wants a little fun herself. Kathy’s younger daughter’s Christmas present to her this year was to care for Paul for six hours so Kathy and Jenn Ellman could just hang out, have a drink and play cards.
KATHY: She's not my social worker. She's now a friend because she just never quit. She never quits on us. As far as we're concerned we are her caregivers and we are her people. And she's going to step up for you. And she's a person I want to be when I grow up because she's just simply incredible. [You can hear Paul saying ‘I notice him’ in the background.]
AM-T: Kathy says that like Dick Clute, when this phase of her life is over, she’ll volunteer with Jenn to help other caregivers and their loved ones--especially veterans. She can help them with the hard stuff, but she’s also an expert in finding little ways to keep things light. She says not a day goes by where she and Paul don’t sing or dance. Just as I’m packing up to leave Kathy goes over the couch, sits down next to Paul, and asks him to sing with her.
KATHY: You are my sunshine, my only sunshine, you make me happy...when skies are
PAUL: Gray…
PAUL AND KATHY: You’ll never know dear how much I love you, please don’t take my sunshine away.
KATHY: Good job…
AM-T: Since the pandemic began, Chautauqua County has been relatively unaffected, but recently cases have begun to tick up.
Paul’s health has been up and down lately and that’s been a strain on Kathy. They have kept their aide, but she’s taken on another job cleaning a holiday cabin. That worries Kathy because of what the exposure might mean for her and Paul.
Dick Clute and his dog Abbie have been together even more than usual because he’s barely seen another soul since the lockdown in New York State began. He hasn’t been able to visit his wife’s nursing home although he speaks to her and the staff regularly. They’re about to open up to visitors again.
Jennifer Ellman has been working from home, doing all her client meetings by phone, including with Kathy and Dick. She says this extra level of isolation brought about by Covid has been very tough on caregivers. She’s hopeful it will end soon.
AM-T: On our next episode: when you've had a difficult relationship with someone, taking care of them can be tough.
STEPHANIE: I don't like a lot of things about my mother, but I do love her. I would never, ever let her suffer. I would never let her be without.
AM-T: Tight Knit is a project of the Ralph C. Wilson, Jr. Foundation.
Our story editor is Diantha Parker. This series is sound designed and mixed by Thrilla Park Audio. And our executive producer is Mikel Ellcessor for Limina House.
We had production assistance from Mary Sier, Sara Ali and the team at Lafayette American.
The caregivers we’re meeting are just some of the many people out there who are looking after someone.
If what you’ve heard reminds you of someone you know, please share this with them.
You can find this story and more at tightknit dot org.
You can also join the conversation on social media @RCWJRF.
I’m Ashley Milne-Tyte. And thanks for listening.