Many people in the U.S. are getting older without a close family member who can take care of them. A Buffalo organization is one of a growing number of global “villages” that draw on volunteers to help otherwise isolated people with all aspects of caregiving.
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: In the course of this series, you’ve met a lot of family caregivers. They’ve all stepped into the role because a parent, or a spouse, needed them. But family structures are changing. Not everyone has children, and even loving relatives may live far away from someone who needs help.
SASHA YERKOVICH: You can’t always count on your family. Often the people who are there for you are friends or neighbors, so imagine formalizing that kind of relationship into a community of shared needs where people are building critical relationships that can help them in times of need.
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.
And in this episode, the last of this series, we look at what it means for volunteers to be there when relatives can’t.
AM-T: Alison Clarkson grew up in Buffalo but moved away for college and hasn’t lived in her hometown since. She’s lived in Vermont for years, is married with two grown sons and has a busy career.
ALISON CLARKSON: I’m a state senator here in the Vermont legislature.
AM-T: Meanwhile, her parents were getting older back in Buffalo - a seven-hour drive away. Her two brothers lived hours away as well. Her father had a neurological disease that was getting worse.
ALISON: And so at 90 he just one day could not get out of bed - he couldn’t use his lower body at all.
AM-T: But he didn’t want to go to the hospital. Alison got the call, got in the car, and began the long drive back to her parents. That day was a stark reminder of her father’s frailty and her distance in an emergency. Like a lot of adult children, Alison and her brothers had worried as the years went by and their parents got older, claiming everything was fine, they didn’t need help. And yet...
ALISON: Their competencies and skills were no longer matching their notion of their own independence.
AM-T: To give you a sense of how independent they were, a little history: The Clarksons are a prominent family in Buffalo. Alison’s parents William and Nan Clarkson met in the 1940s and moved to Buffalo in 1950. They were active in public life for decades.
ALISON: My mother was the arts commissioner of Buffalo, Daddy was CEO of a company that was one of Buffalo’s great home-owned industries...it was the largest chart manufacturing company in the world.
AM-T: Her parents were used to helping other people, not being helped themselves. But Alison knew of an organization that could help them...in fact her parents knew about it too. It was called Canopy of Neighbors. Her mother had served on its first board of directors.
ALISON: And both cared deeply about helping people age in place.
AM-T: Canopy of Neighbors’ mission is to do just that. To allow older people to stay in their homes by providing volunteers to help do the stuff they can no longer do on their own - everything from driving to fitting a new lightbulb.
AM-T: The organization is part of a nationwide movement called the Villages. It began 20 years ago with one group in Boston. The idea was to create a version of what used to exist everywhere: a village where people looked out for each other and helped each other. The concept caught on, and it’s been growing ever since. Alison says by their late 80s, her parents were having problems with shopping, driving, and making decisions. But try telling THEM they needed help. They were people of means, intelligent, thoughtful...and proud.
ALISON: They weren’t seeing their abilities needed to use Canopy, and that was really a first hurdle we got over together. And then when they found the pleasures of Canopy and the effectiveness of Canopy’s services they were far less resistant, which was great.
AM-T: And as her parents began to experiment with leaning on others...Alison breathed a sigh of relief. At 88 her mother was still busy with social engagements as well as doctor’s appointments. Her father had been doing all the driving for years, but she says his reactions were too slow and he’d had an accident. Now, a volunteer driver from Canopy of Neighbors took them around. But it was more than just getting rides. Her mother Nan, a prolific writer, needed help sorting through decades of files and correspondence. But who would be up for that job? Alison says it was not for everyone.
ALISON: Canopy worked really hard, you know, on that match. So the beauty of this in many ways is also finding the right person to work and volunteer with that older person assisting them in their life, and enabling them to live a life with dignity and independence.
AM-T: In her father’s case, that meant until the end. Alison says initially it had been hard to convince her mother in particular to rely on a service like this. But that changed.
ALISON: She loved the fact that Canopy had volunteers who just talked with my father when my father was in hospice at home, and who came and were wonderful company and talked about stimulating subjects with him.
AM-T: It made a real difference to his final weeks. The volunteers don’t perform medical tasks but Alison says what they do provide is trusted judgement, practical help, and companionship. She’s grateful that her parents could tap into this community - for them, and for herself. Because she couldn’t be there all the time.
ALISON: The value as non-traditional caregivers is huge for those of us who depend on their services from afar.
AM-T: Her mother, now 94, just moved from Buffalo to Vermont.
ALISON CLARKSON: And Mum now lives 5 minutes away which I have to say is a big improvement over a 7 hour drive in an emergency.
AM-T: She says her mother is thriving in her new home in an assisted living community. She’s now OK with being dependent on other people.
ALISON: So Canopy helped ease that transition into an older life where you really do need to ask for help, because we’re all not very good about asking for help. And Canopy really helped facilitate that.
AM-T: Alison says her mother now accepts where she is in her life - and that has been a great step forward.
SASHA YERKOVICH: So this is for our social programming...we do an enormous amount of programming in here, which is the library…
AM-T: Sasha Yerkovich is Canopy of Neighbors’ executive director. She’s leading me through their offices in downtown Buffalo. The organization puts on lots of events for members: everything from talks by experts on medical topics to discussions of local history, watercolor classes, intergenerational meetups, and more…
SASHA: We got a wonderful grant and I brought in a mindfulness specialist. This is the new thing now, both for - I’m sure everyone’s heard of it - for dealing with chronic pain, loneliness, stress…
AM-T: She says so many seniors are socially isolated. Everything her organization offers aims to get them out of the house and into a group setting.
SASHA: It’s an opportunity to laugh, meet peers, and enjoy yourself.
AM-T: Plus, she says, when seniors are informed and engaged, they’re likely to stay healthier longer. Sasha’s been here almost five years. She never expected to lead a nonprofit. None of her work experience pointed to that. But her life experience did.
SASHA: They were looking for someone who was a sandwich generation professional who was raising children, taking care of their parents, understood the needs from a practical, daily living sense.
AM-T: That was her. She and her husband have lived in Buffalo for almost 30 years. They moved here to be near his parents.
SASHA YERKOVICH: We were taking care of my in-laws who lived down the street. They had cancer, surgeries, all kinds of issues. My parents moved here so we could take care of them. So at that time, my husband and I were taking care of four parents, three children.
AM-T: She was also running a magazine out of her house…and serving on various boards. A friend told her about the job here, knowing her personality would be a good fit. Running a small nonprofit requires a can-do attitude and an ability to multitask. Sasha has both. She’s one of just two part-time employees - everyone else is a volunteer. She’s dynamic and determined to do the best by her members. She knows some people may be difficult to deal with because their lives haven’t been easy, or they may be in pain. She understands older people because she’s spent so much time with her own family members.
AM-T: Some people look at an organization like this and they don’t think about family caregivers.
SASHA: You know, it's interesting. I didn't either actually when I first started this job because I was a family caregiver helping my parents. It never occurred to me that there were people that didn't have that opportunity. And the thing is this, if you understand what's happening in the United States, there is a large generation of people that are moving into old age without what you and I think of as traditional family caregivers. There's an increased divorce rate. There's an LGBT community that may not have children.
AM-T: There are all kinds of couples and single people without children, and people whose children have relocated to find jobs...
SASHA: We have families in Buffalo and in many industrial communities where their children moved out of town.
AM-T: She says they have members who are estranged from their families for one reason or another.
SASHA: You can’t always count on your family. Often the people who are there for you are friends or neighbors, so imagine formalizing that kind of relationship into a community of shared needs where people are building critical relationships that can help them in times of need.
AM-T: Canopy’s members pay a yearly fee to be part of the community. A single person pays $400 - unless they’re low income. In that case they pay 120. And more than half of current members are on this subsidized rate...it includes all the social programs, as well as rides and other support. Sasha says some members have children in or around Buffalo. But they like that being part Canopy means they don’t HAVE to rely on their kids to help them out all the time.
SASHA: If you take away the guilt, the obligation, the burden, many families become closer because their time together is social. It's a Sunday dinner, it may be church, it may be the park, but it's not chemotherapy, physical therapy, grocery store, hairdresser, bridge club.
AM-T: The desire not to be a burden is partly what brought Florence Johnson to Canopy of Neighbors. It’s a drizzly Wednesday morning and Florence uses a cane to get down her porch steps and walk to Jeff Fleischmann’s car.
FLORENCE: How are you doing there Jeff?
AM-T: Jeff is a regular driver for Florence. Today she’s wearing a navy and white scarf around her head and a linen shirt over a T-shirt. There’s a tote bag slung over her shoulder. She maneuvers carefully from the kerb to the car seat...
FLORENCE: Alright...I’m still getting in…
ASHLEY: Yeah, don’t drive off...
JEFF: I’m not going to take off…
FLORENCE: [laughs] Phew! That was a task…
ASHLEY: And you’re going to an exercise class, right?
AM-T: Florence is a longtime educator. She was born and raised in Mississippi but has spent her whole career in Buffalo. She’s a former president of the Buffalo School Board. She is 81 now and widowed. She has cancer and is undergoing chemotherapy. Canopy volunteers like Jeff get her to and from the hospital and the exercise classes she likes to take at the Jewish Community Center…
FLORENCE: We talk as we exercise and there’s camaraderie with the group and I look forward to seeing them each day, and without Canopy I wouldn’t be able to do that.
AM-T: Like most members, Florence found out about Canopy through word of mouth. Someone at her class knew she was having trouble with transportation and told her Canopy could help. Florence says the chemo has made her brain a little fuzzy - she has problems with short-term memory, and sometimes has to search for words. She also feels depressed at times. This isher second bout with cancer, and she’s tired. But joining this community has given her a boost...
FLORENCE: I haven’t met anyone who has a condescending attitude – it’s one with humility to serve and with joy in serving…so some of that anticipation, or...enthusiasm is the word I want - transfers to me. And so I may get in the car and they say, ‘how are you doing today? Doing anything great?’ And then, ‘This might be something that would interest you.’ So that helps me, helps take my mind and attitude from the doldrums to another level…right Jeff?
JEFF: (off-mic) Absolutely, same here.
AM-T: Florence had been using Uber to get around but it became too expensive. She has two loving sons nearby. But one can’t drive for medical reasons; the other is a police officer with an unpredictable schedule. Plus, she hates to bother them.
FLORENCE: I’m kinda in my later years more silent, I don’t like to impose on my friends or my sons because I feel they need to have space in their own lives.
AM-T: She says they - and she - have felt great relief since she signed up with this group of volunteers…
FLORENCE: Because the volunteers give a commitment of time and then I’m programmed into their schedule in terms of the appointments that I have...as they would say in the Jewish community, it’s a mitzvah.
AM-T: In secular terms, that means doing a good deed, large or small. You’re helping someone else. Jeff has been volunteering with Canopy for three years. I sat in the passenger seat as he drove to pick up Florence. He tells me he has a master’s in philosophy but ended up becoming a social worker. He’s retired now.
JEFF FLEISCHMANN: So 20-some years I was at senior services for the county, I just did social work, outreach on the phones and with seniors citizens throughout the county…
AM-T: So this is very familiar - so this, um, demographic, you’re very familiar with...
JEFF: Oh absolutely, it’s the same people, just doing different things, and not as intense in terms of all the paperwork, and uh...it’s just much more easy-going...no pressure…
AM-T: He says after decades of helping people in his job, he couldn’t just stop in retirement.
JEFF FLEISCHMANN: You know, I feel like I should be doing something - something of value. And so, it’s great, and then meeting people, and I get to drive all over the place - and we have a great time- some of the people are really fun, I learn a lot from them.
AM-T:Sitting in the car after we’ve dropped Florence off at her class, with classical music on the radio, Jeff says it’s satisfying just to help solve a problem for someone. Like the time he helped a woman whose phone, TV and internet were all out.
JEFF: We were fiddling around with it, I says something’s really wrong, and we finally called them and it wasn’t even connected because she hadn’t paid.
AM-T: He says the womanhad been sick and hadn’t been taking care of her finances. So he sat with her while they called the company...
JEFF: And that was a real good day when I got everything going again - nothing was working and everything was working after we paid the bill.
AM-T: This kind of task can be maddening for someone who’s perfectly well. It can be overwhelming if you’re older or your brain isn’t working quite the way it used to.
The volunteers at Canopy also help out in more unusual ways. Executive director Sasha Yerkovich says sometimes a member needs physical help and emotional support - even if they’d never say so. Soon after she started her job, an elderly member called her office.
SASHA: His wife passed. They were married 67 years and, um, always kills me...she died and he did not want to sleep in their bed, because it had been their place. And so he slept on the floor for about two or three nights. And then he called and he said, ‘you know, I hate to ask this,’ because we used to drive them to doctor's appointments, never occurred to them they would need anything else. And he said - 87 years old - and he said, ‘I hate to ask you this, can you take me to St. Vincent DePaul's? I hear they sell beds.’ And that's a thrift shop where people donate things. And he said, ‘I can't do this anymore and I can't lift and I can't take this out, and please help me.’ And I thought, who do you call for that? Do you know what I mean? Who do you call when you have no family and your wife - they didn't have children. And it's a real gut-wrencher...could you say to him, my goodness, just sleep in the bed? If you were somebody who was a social worker, who knows what they might've said.
And I had two wonderful gentlemen who respectfully came, took it away, took him to get a new bed and a bed frame, took him out to lunch, helped him set up that bed, gave him peace...and you know, if you can't get that small level of peace, then what are we all doing? How is that not caregiving?
AM-T: She says this idea of personal careunderlies everything Canopy does. They take individual needs into account. Sasha’s gone with a widow to buy a new car because the woman was afraid of being the target of a hard sell. She’s helped members reprogram their TVs more times than she can count. And sometimes, when an older person doesn’t have family, Sasha finds herself standing in.
SASHA: I've been a healthcare proxy this year for three people, been at their bedside. Imagine that you are there at the end of your life and vulnerable and an illness forces you to put a name on a piece of paper and you don't have a name. I mean, think about that. So in terms of family caregiving, of course I would name my husband or you would name your child or you might name your partner, you might name, whoever it may be. Imagine that you don't have anyone. And that's a really sobering thing. So the first time I was asked, I was stunned, and then I thought, how could I be stunned? This is what we do. And these people are no less alone at the end of their lives than they were when they came to us. And then I realized it was an honor.
AM-T: It was humbling to be chosen for that role. Still she says she’s glad those members felt they could ask her. Sasha says that not every relationship is that intense, of course. Some members just want a ride to the doctor’s or to attend an event. But she says that’s just as much a part of what they do.
SASHA: We are providing a simple, basic, graceful and dignified human service.
AM-T: And Canopy of Neighbors in Buffalo is just one group that does this kind of work. Earlier we mentioned that Canopy is part of the so-called Village movement. Alison Clarkson says the country needs more Villages like this to help care for older friends and neighbors...
ALISON CLARKSON: I would encourage people listening to this to think about how they can duplicate this service in whatever community they live in.
AM-T: You could think about what you might be able to offer and what you might want to take advantage of yourself one day.
ALISON: If you have family around, great, but when you don’t have family around, and you aren’t in a traditional family - and those numbers are growing - this kind of a service is just invaluable.
AM-T: After all she says...it’s just how we used to live - everyone caring for and helping one another. It was a system that worked. It brought benefits to everybody. And it can again.
The changes that have come with Covid-19 have perhaps hit Canopy of Neighbors harder than anyone else in this series, because their whole mission is to get older people out and about and socializing.
All that had to stop in the spring. But the organization is still finding ways to bring members closer.
Since most Canopy members don’t have internet access...Sasha can’t get people together on Zoom. She has managed to gather members on a group phone line though, and that’s worked out pretty well. And recently some volunteers have started driving people again - with masks and lots of wiping down of car seats.
Jeff isn’t one of them; he doesn’t feel comfortable mixing with other people yet.
One of Florence’s sons has moved in with her so she’s no longer living alone. Because she has cancer she has to be very careful about exposure to Covid. She misses her rides, her exercise classes, and the social contact that came with them.
Sasha wants to plan a socially distanced picnic for Canopy members in the fall.
AM-T: You’ve been listening to Tight Knit, 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’ve met in this series 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.