The Shape of Care: Episode 1
"When your romantic partner has Parkinson's Disease"
Mindy: Welcome to The Shape of Care. I’m your host, Mindy Fried. And I’m going to introduce you to some of the most remarkable people I’ve met in the world of caregiving. To start, we’ll meet Laurie Sheridan. Her father died in 2004. She’d just started a new job. Her youngest child had entered college. And Laurie was about to become a grandmother. Her husband, Ira, was still working as a software engineer. But something about Ira was changing.
Laurie Sheridan: He played tennis with a bunch of guys every Saturday morning and they started noticing that he was getting slower. And one of his partners, who was a good friend, took him aside and said ‘you know, you should probably stop playing tennis,’ it wasn’t the kindest thing that ever happened. Because he would throw the ball in the air, to serve, and it would come down in the wrong place. And he was just very slow to move. So, he started seeing a neurologist who figured out, over the period of about a year, that it was Parkinson’s Disease. It’s a very difficult diagnosis to make, because there’s no test, it’s just a clinical diagnosis.
Mindy: That difficult diagnosis turned Laurie into an instant caregiver. We’ll hear more about Laurie in just a minute. We’ll also hear from Rick Surpin, who has dedicated his career to long term care for the elderly.
But first I’d like to tell you a bit about my own story – which led me to create this podcast. My sister and I took care of our dad in the final year of his life. He lived independently until he was 96. Then, he had a serious fall. Falling is the #1 reason people move into facilities). He spent the final year of his life in assisted living in Buffalo, New York. My sister lives in Pittsburgh and I’m in Boston. So we traveled to Buffalo every weekend to care for him. When we weren’t there, we’d spend hours on the phone with medical staff, setting up appointments with specialists, finding rides to take him to these appointments, talking with him to gauge how he was doing; and creating a social calendar for friends to visit. Then our dad had one more fall. About a week later, he died, four days shy of his 98th birthday.
Five years later, I finished a book about this experience. It’s called Caring for Red: A Daughter’s Memoir. Being with my dad during this time was one of the most profound experiences of my life, and I wanted to capture what it was like. I’m a sociologist, and as I was writing about my personal experiences, I realized they were universal. When I gave book talks all over the country – in Buffalo, Seattle, Albuquerque, Los Angeles – my favorite part of presenting was after I was done talking, when I heard other people’s stories. They were hungry to share them. They talked about the conflicts they had with siblings. The challenges of being a caregiver from far away. The frustrations of accessing Medicare or Medicaid. And the painful decision to put an aging parent in an institution.
What I realized is that there are so many of us doing this work, but we’re not talking to each other. We’re just trying to keep it together. This podcast is a platform for that conversation. We’ll hear stories from caregivers and the people they care for, and from experts and activists.
In the beginning of this episode, we heard Laurie Sheridan talk about her husband Ira’s problems with movement, as he played tennis. Initially, his doctor couldn’t figure out what was going on. He suspected Parkinson’s Disease, and at the time, Laurie and Ira were relieved. Whatever it was, it seemed like a minor disability. But over the course of a year, the doctor discovered Ira had kidney cancer. It was only after Ira had half a kidney removed that his Parkinson’s symptoms worsened.
Laurie: But it really only got very serious and difficult and really affected the quality of our lives and the quality of my life in the last two years, I would say, when he’s become much more impaired.
Mindy: At this point, Laurie had just retired from her job. And she was thinking, “now I have the rest of my life ahead of me”. But instead of a leisurely retirement, her life is devoted to looking after Ira, 24/7. Parkinson’s is a degenerative disease that can be brutal.
Laurie: He can barely move. He sometimes can barely talk. He has some cognitive dysfunction that is some dementia and he really can’t do anything for himself without help anymore dressing bathing showering, toileting, getting in and out of chairs and bed.
Mindy: Parkinson’s affects the ability to problem solve, speak and think.
Laurie: It’s hard to know how much he understands and sometimes he startles people because you can have a conversation with him about politics or Donald Trump and he’s much sharper than I am and always was. But then, again, if I asked him what you asked me, what I had for breakfast today, he wouldn’t have any idea or he’s lost his sense of space and time to the point where he can’t find a chair when he sits down.
There’s also been a shift in Laurie’s relationship with Ira.
Laurie: The big early change was when he had to give up driving and I had to take over driving. Although we’re non-traditional in some ways, he always was the driver when we were both in the car. And that had to flip very quickly. And there’s a lot of power and control that goes with that that I wasn’t totally comfortable with at first. You know, realizing I was literally in the driver’s seat. And I could decide where we were going, and how fast and what route we were taking. And that was just one change. Luckily, Parkinson’s is a fairly gradual disease, so I’ve had time to adjust to each change and each loss, pretty much. And I think that’s common. I’m always a little behind in my adaptation.
Mindy: But Laurie is adapting.
Laurie: And I figured out, that what actually made sense, was, this sounds funny, making Parkinson’s sort of our life and our community a lot. Because there is a big community and people keep showing up whom I used to know because it’s a disease of aging, so that’s been sort of fun that way. But around the hospital where he goes, there’s lots of sort of ancillary activities and exercise classes, and there’s a yoga class and stuff. So we make friends who have Parkinson’s and their partners and it’s become a large part of our dwindling social life.
Mindy: But since Laurie’s with Ira nearly full-time, she rarely gets out.
Laurie: Like, I’m in two book groups that meet at our house which is kind, because there are times I couldn’t get out. And it’s all women except he’s there. And since we have lunch he eats the lunch, too, and sometimes we talk as though he’s not there which isn’t wonderful. And once in a while he chips in, too, since he is there and has something to say. [12:39]
Mindy: Having people come to their house was one way to maintain their friendships.
Laurie: It was a change we made because gradually became increasingly difficult to see the people we’re used to seeing, partly because it’s hard for them to understand our lives – or harder – and partly because physical access has become an issue. So we can really only see the friends unless they come to our house whose houses are accessible. [6:55]
Mindy: A few years ago, their situation took a turn for the worse. Ira got really sick and ended up in the hospital.
Laurie: He came home from the hospital in a radically different condition. He couldn’t sleep through the night. He was up like 20 times a night. I spent half a year never sleeping through more than an hour at a time. And that was the point where I realized we needed to hire more help in the home. He basically needs round the clock care now, which we don’t have because it’s too expensive [7:42]
Mindy: Rick Surpin founded an organization in New York City called Cooperative Home Care Associates. They hire caregivers to work with families. A critical issue for him is how people pay for care.
Rick: In the private market you’re negotiating with the family and it’s based on what the family is able to pay. [21:59]
Mindy: When it came time for Rick’s family to care for his mother, they didn’t want to work with an agency. They hired an independent provider. And they pay her out of pocket to come to their mother’s home.
Rick: It happens that I have a 98-year old mother and my sister and I pay for that care and at an earlier time provided some of the personal care ourselves. [20:46]
Mindy: Rick shares the caregiving responsibilities with his sister. But Laurie Sheridan cares for her husband, Ira, on her own. She can only afford part-time care for him. Before she retired, Laurie’s professional work focused on improving health and safety in workplaces. She brings this knowledge and sensibility when she hires people to care for Ira.
Laurie: Then there’s the whole question of the long term care workforce and the folks that we hire to help take care of him and it’s so much like with childcare where you can’t afford to pay them enough and yet it’s really hard work. And it really needs to be well compensated. [24:34]
Mindy: Laurie chose to hire independent care workers, who are not working for an agency. But there are trade-offs.
Laurie: There’s plus and minuses either way if you hire someone off the grapevine or independently they get all the money. The agencies tend to take almost 50 percent. So people are terribly underpaid in agencies; the turnover is terrible. On the other hand, you have more backup that way and they have more supervision and training and, you know, you have to do all the paperwork yourself if they’re independent and you have to do all the supervision and coordination which can be a big job. [26:30]
Rick: Again, here’s Rick.
Rick: I think that the major thing you want to look for is are you going to be comfortable with this person in your parent’s home. [23:52]
Mindy: Rick’s advice cuts across the board: whether you’re taking care of a parent or a spouse, like Laurie’s doing.
Laurie: I feel as though I’ve been very lucky finding caregivers on the grapevine and through each other, that I have felt totally comfortable with in the house and so has he. And I think that’s relatively rare. [10:32]
Mindy: Rick poses a series of questions for family members when they’re hiring someone to care for their loved one.
Rick: Do you think they will be compatible with your parent or grandparent? Do you think you will trust them, assuming that you’re not going to be in the home all the time? And is it someone that you think you could talk to and learn what’s going on in the home and that they would report to you what’s going on in the home? The fundamental thing is about the texture of relationships. The tasks involved are not difficult things to do. They are tedious, amount to a lot of time, but this work is not about the collection of tasks. This work is fundamentally about getting those tasks done, but in a way that the client and the worker both feel good about their relationship and that it is a productive one and helping the family take care of what’s required, and reduce the burden of that care as much as possible. [25:09]
Mindy: Laurie is grateful that she and Ira have a stable group of caregivers. This past year, they had four people. Three of them are there overnight, and they actually sit and watch Ira sleep.
Laurie: I was at one point spending a lot of time in the emergency room from his falls when he would get up during the night, so we got a hospital bed and a caregiver to stay in the room with him every night which has actually now eased up and I’m cutting back on the overnight caregivers, and it’s always in flux. I have someone coming in the daytime, four mornings for three hours, which allows me to go to the supermarket, the bank, the drugstore for prescriptions, and once in a while to my own doctor appointment and that’s about it. When I can, I use that time to take a walk by myself. And that’s incredibly liberating and stress busting and when I don’t get to do it – bad winter weather – or when I’m too busy, I feel the stress a lot. [11:45]
Mindy: When Ira’s caregivers arrive, Laurie chats with them for about an hour. She enjoys their company. They’ve become part of the couple’s social life.
Laurie: And even though it’s sort of work time and paid time, they’re lovely, fun people and we know you know about their kids and their lives and all this stuff. And then he goes to bed. And later I’ll go upstairs and go to bed and we sort of feel like we’ve mixed it up with people. [13:39]
Mindy: Ira’s reached the stage where he’s now at risk of falling, so he’s in a wheelchair. He can’t be left alone. As his health has gotten progressively worse, Laurie has come to a realization: Caring for Ira affects their relationship.
Laurie: If you’re the hands on caregiver, which I am most, but not all of the time, it’s a complicated thing when it’s your romantic partner, not your parent, it’s hard enough with a parent, and I’ve done that, you know, with a parent in Depends and having to change them, and stuff. But it does something to your relationship when you’re a caregiver and you start to see that person, not as your spouse or your partner, all the time, but also as this body you have to take care of. It’s really different and you have to separate it somehow in your mind, from, you know, your 45 year relationship with this person. And of course that person is changing, too. So sometimes he seems like a different person. I think it happens a lot just with normal aging. But with a neuro-degenerative disease, it’s like that’s a different person. Do I know you? Who are you today?
Mindy: What advice does Laurie have for other caregivers? Try to avoid getting to the point where you’re totally overwhelmed. She’s been there many times. And when it happens, she recommends getting more help from family or friends. Or from paid caregivers, if you can afford it.
Laurie: And if your own health starts to go, it’s disaster for everybody. I had to learn this the hard way, as you can probably tell. But it’s what I say to people all the time if they say ‘I’m so tired I can’t do this anymore.’ It means you need more hours of help. [27:49]
Mindy: And Laurie turns to social media to feel less isolated.
Laurie: I don’t know what I would do without social media, cell phones and, you know, all the stuff we use because I’m in the house more than I’ve ever been in my life. I never expected to be. I worked mostly full time since I was in my early 20s and I never expected I would stay home. I didn’t even with kids, you know, that much. Sometimes I think I’ll go crazy and that just means I need to bring in people because I can get really nasty. [28:51]
Mindy: As you can hear, Laurie’s candid about what her life is like.
Laurie: I say to people you know my life is actually hell a lot of the time and I had no idea. No idea. It makes me really have respect for people who have done this. Paid or unpaid for years that I just thought were just doing another job. But it is pretty awful sometimes. It’s not what you choose, exactly. [29:19]
Mindy: She does find some bright spots.
Laurie: This is going to sound funny maybe, but Ira and I have a lot of fun: with friends, with each other. We’ve always liked each other and had a lot to talk about. In fact, the hardest part for me right now is his talking less. But, we actually have a lot of fun together, which surprises me. I have a friend who said, ‘you know, you have these good moments and you may have fewer of them or they may be different, but you still have them.’ And we do, and we do. I think I’m a pretty positive person and I’ve learned to be happy; I sort of insist on it. [:31]
Laurie: Since I first interviewed Laurie, I’ve been following her posts on Facebook about Ira’s health problems. I noticed that things seemed to be getting worse. So I gave her a call to get an update. Ira was in the hospital and Laurie wasn’t sure he was going to make it. She discovered hospitals aren’t very good at handling what Ira needed: getting medicines to him on time, feeding him meals instead of just delivering them, monitoring him, so he wouldn’t climb out of bed and fall. So Laurie cobbled together a group of Ira’s caregivers and family members to share 24/7 care in the hospital. Ira survived, and he was able to go home after a week.
Laurie says taking care of Ira is like caring for a toddler: she has to pay attention all the time. And Ira’s getting worse. Often, he’s confused and argumentative And when he’s like that, Laurie calls him “Ari,” – that’s Ira spelled backwards. Even though she thinks that sounds a little crazy, it helps her distinguish between the Ira she has known for all these years, from what she calls “this strange person I live with who has Parkinson’s”.
For the last two years, Ira’s been incontinent. Laurie does at least 2 loads of laundry every day. She’s afraid of the time when he’ll be totally incapacitated. Parkinson’s is unrelenting and unpredictable. Even so, Ira can be kind and sweet. They still have great conversations.
Laurie and Ira’s story is one of many. There are nearly 45 million caregivers in the US, according to the National Caregiving Alliance and AARP.
We’re in the midst of a major demographic shift in the U.S., with 10,000 baby boomers turning 65 every day. Many are taking care of parents and spouses now. And as this generation ages, more people will need care. They’re grappling with how they want to live as they age, what resources are available, and how they can pay for them. We have no national care policy in the U.S., and most workplaces don’t have policies that would help employees juggle their work with family demands. Here’s what we need:
Systems of care that allow people to remain in their homes as they age. That’s what most people want, and it’s more cost-effective.
We need policies that make it possible for families to afford quality care, regardless of income.
We need to make sure that the people who care for our loved ones have well-paid, stable jobs and receive ongoing training.
And if a loved one needs to go into an institution – like assisted living or skilled nursing care – we need to make sure they receive quality care and that they’re treated with dignity in this final chapter of life.
Coming up on the next episode of The Shape of Care, Ai-jen Poo talks about the problems we face paying for care, and the kind of policies we need.
Ai-jen Poo: When 70 percent of the American workforce makes less than $50,000 per year the average cost of a private room in a nursing home is more than $90,000 per year, these numbers are simply not adding up.
Mindy: That’s it for this first episode of The Shape of Care. Over the next five episodes, we’ll learn about how other caregivers handle the challenges they face.
Do you have a caregiving story to share. A question about how to navigate the care system. We’d love to hear from you. Here’s our phone number. It’s 6-1-7-600-87-90, that’s 6-1-7-6-0-0-8-7-9-0. You can also email us. We’re at contact@theshapeofcare-dot-org. Again, that’s contact@theshapeofcare-dot-org. We’ll try to get answers for you in Episode 6 of the series.
You can learn more about The Shape of Care, connect with us on Facebook, Twitter and Instagram @the-shape-of-care. You can find out more about the people we’ve interviewed, read The Shape of Care Blog and see lots of caregiving resources at the-shape-of-care-dot-org. This project has been a labor of love, with the support of friends and family. If you like what you’re hearing, please support us with a donation to The Shape of Care at the-shape-of-care-dot-org. We’d be really grateful!
The Shape of Care is produced at Whiskey Lane Productions in West Roxbury, Massachusetts. Helen Barrington is the Executive Producer; the mix engineer is James Donahue; and our assistant producer is Alex Birch. Special thanks to podcast advisor, Lisa Mullins. Sarah Wasko created our logo; Kate Krosschell developed our marketing plan; and Maggie Taylor is our marketing consultant. Our theme music is “Break Out” written by Josh Rosen. He performs his composition on piano, with Stan Strickland on sax and percussion. Other music in this episode is by Blue Dot Sessions. I’m your host and the co-producer of this podcast, Mindy Fried. See you next week.