Q&A with Jo Owens, author of A Funny Kind of Paradise

Jo Owens became a nursing home aide in Canada out of a need for money, and came away with her calling. And from that experience, the pain and the human glory, came her debut novel A Funny Kind of Paradise, set in a Canadian nursing home.

The Vancouver Sun wrote “Owens…captures the skill and tenderness of caring for someone at the end of life in direct and unvarnished prose…Each [care aide] …is richly drawn and complex… [and the novel] serves to illuminate a vital profession that has been rarely documented in fiction.”

“Her writing is richly informed by her 20 years working as a care aide in Victoria, British Columbia,” said interviewer Len Fishman, head of the University of Massachusetts Gerontology Institute. And their conversation continues from there. Thanks to Taryn T. Hojlo for the interview transcription.

Author Jo Owens

LF: Let’s start by asking why you became a care aide and what’s kept you in that profession for 20 years?

JO: Actually, desperation drove me there. Much like Molly [a character in the book], an aide suggested that I take this job and that I would be good at it, and I absolutely needed money. That got me over the initial stages when it was terrifying to be doing something so new. What keeps me at it is that I have a calling for this work. I definitely ended up in the right place.

LF: The book’s narrator is Francesca, or Franny. She’s in her late sixties, and a stroke has left her unable to move, walk, talk, or eat, but Franny’s cognition is completely intact. Tell us more about her, and let’s start with you reading a passage.

JO: [reads from A Funny Kind of Paradise – youtube link]

“Franny says, ‘The stroke has left me emotionally labile, and the feelings I’ve struggled so hard to contain (or at least disguise in shrouds of anger) are naked for all the world to see. I literally lack the muscular strength to suppress them.

But here is the gift. I don’t care. I don’t care! My right hand is useless, I can’t speak and more people have seen my bare ass in the last year than if I was a streaker at the opera, because I need my diaper changed, for God’s sake. Do you think I care if you see me cry?’”

LF: Tell us a little more about her.

JO: Francesca was a strong, independent woman who ended up raising her two children on her own. She’s a home-based small business accountant, and she kind of came at life as though…if you attacked it with hammer, you’re going to get the job done. That’s not necessarily the best way to parent children, so like everyone else, she has her own baggage and things to think about. Originally, she was the kind of person who would say to herself, as you often hear people say, “If that happens to me, I would rather die.”

LF: She recalls a time when she accompanied her son’s class to a nursing home around Christmas time. When they leave, she tells him, “I’d rather be dead than have to live in a place like that.” Later she thinks, “I changed my mind when I came here.” What changed?

JO: First of all, I think that the will to live is extremely strong. We think that we can’t tolerate this, but it’s amazing what humans can get used to and even learn to embrace. Partly, that’s what’s going on, but also Franny was fortunate to end up in a good facility where she has loving care and she’s still engaged in life. She enjoys watching the care aides that work around her and gossip freely in front her because Franny can’t repeat what she’s hearing. She thinks about her children and she’s still engaged with her son who comes to see her. There’s enough in her life to make her life meaningful. This is my experience at work. When suffering becomes acute, residents do say they’d rather die. And we do hear that. But generally speaking, I find that people want to live. And they continue to want to live. Much longer than we’d think.

LF: Franny’s got issues – fear and anger are her “left and right crutches” as she puts it – and she’s really trying to work through them. Have you seen residents that you’ve cared for grow emotionally as she does?

JO: Absolutely. Absolutely I have seen people change and grow. We do. Our situations force us to. It was the famous psychologist, Karen Horney, who said, “Life itself remains a very good therapist.” Things happen. We’re forced to change, and life doesn’t stop because you’re forced into care. You’re still going to be changing. For Franny personally, I used my imagination obviously to create what’s happening to her, but as she thinks about what is meaningful in life, thinks about what she can change and what she can’t change – particularly with regard to her son, her missing daughter, and how she behaved in the past – as new residents come into her life, she is adjusting her thinking and she’s moving along in her mind, as people do. And yes, I’ve seen that in care.

LF: So, as you’ve mentioned, Franny’s brain is sharp and because she can’t talk the aides are actually more willing to speak their minds in front of her, even confide in her. What were you hoping we’d learn, through her, about the inner workings of a nursing home?

JO: One of the reasons I set this novel in a five-bed ward is because I wanted to be able to show Franny listening to people talking all the time…I wanted people to see how human your aides are…Every one of your [aides] comes with their own set of baggage. And I wanted to show some of the things that the care givers are trying to balance, some of the things that they have on their plate. The struggle that is part of life, trying to triage six to eight – or in worse scenarios, 12 to 14 – residents. Who eats what, who do you go to first? How can you give everyone good care, not just the ones that can speak up and demand it, but also the ones that are immobile and deserve just as much of your love and attention? I wanted to do that in a way that wasn’t completely preachy, and boring and I really hope that I achieved that goal because what happens in [nursing homes], in that private little world, is frequently not seen, and I wanted to show it.

LF: In Franny’s world, licensed nurses, whether it’s LPNs or RNs, are distant figures and doctors are almost entirely absent; it’s all about the aides. Is this what it looks like on the inside?

JO: I’m sure I showed quite a bit of bias there because I am a care aide, so I think it’s all about me [laughs]. But, in terms of the bulk of time caring, aides are the faces that the residents are going to see the most. I see my people every day, whereas the doctor might see you every two weeks if you have a problem, less if you don’t. The LPNs are going to see you every day also to give you your pills and if you have a dressing change, you’ll see them a little bit more. The RN, as I mentioned to you before, at my facility the RN has one hundred people. They’re going to deal with problems. So, it may be very difficult to even know their name. The care aide is the person that they see. I did an interview with a person in Toronto whose father was in care. He told me that the care aides became his father’s family. Even though I only know a small portion of my resident, the part that they are now – the whole iceberg of their previous life is unknown to me except for a little bio that might be done by a social worker or a family member – I have this tiny little part of this person, right? But they’re still mine. I have them every day. I know how they want their socks pulled up – do you want a little space at the end, or do you want them nice and snug? Do you want your tea spun like this or like that? They’re mine.

LF: I want to ask you about families of nursing home residents, especially those that visit frequently. What qualities do staff most appreciate?

JO: The first thing that’s coming to my mind, Len, is forgiveness. Maybe I’m only speaking for myself, but I want to be forgiven for my imperfections. I’m going to do the very best that I can, and sometimes it’s going to feel like it’s not enough because sometimes it’s not enough – I just run out of time. I forgot to bring your husband down for his visit, which is now going to be downstairs in the village square, or I’m not able to brush your family member’s teeth, their hair isn’t…Yeah, I want to be forgiven for the fact that I can’t do a perfect job. Maybe other care aides would speak differently.

LF: Two aides in your book are talking about the difficult daughter of one of their residents. The mother is pretty difficult, too. And one aide sums up her philosophy as follows, “If we only looked after the people who deserved kindness, it’d be a skinny job.” This is a telling commentary on the challenge of being a good caregiver, so tell us about it.

JO: This reminds me of a fridge magnet I once saw that said, “The staff are human and will react unpredictably when abused,” as opposed to being a robot. Every healthcare worker has a right to be treated like a human being. We have little signs in our elevator saying that if you don’t treat the staff with respect, you will be required to leave. But the people that I’m working with are emotionally labile and sometimes they have difficulty controlling any number of their emotions, whether it’s anger or frustration or – sometimes they yell at us, sometimes they hit us.

LF: In recognizing the time that we’re living in, in the U.S., residents account for about 40 percent of COVID deaths nationally. In Canada, the percentage is even higher. It seems to me that this hasn’t caused as much of an outcry as one might expect. What do you think?

JO: So, this is a question I was asked in the NPR interview and so I gave it a lot of thought, Len, because I had difficulty answering it. And here’s the reason I had difficulty: I do not want to contribute to our phobia of death. There is a time when it is good to die. At the same time, how we treat the more vulnerable members of our population during a pandemic is a measure of our integrity as a society. It’s really important not to get the idea that any group in our society, whether it’s their age, their ethnic background, their financial worth, their sexual orientation, that that group is in any way disposable, because that’s the kind of thinking that Hitler had. It is not acceptable.

LF: What do you want people to know about your job?

JO: Well, I was hoping that with my book I would be able to increase empathy for the people that live and work in care. But what would I want them to know? We’re here and we’re alive and just as important as anybody else – really that’s the only message.

Dean David Cash announces retirement of Institute Director Len Fishman

I write to announce that Len Fishman, after serving seven years as director of the Gerontology Institute at the McCormack Graduate School of Policy and Global Studies, will be retiring on August 31.

Gerontology Institute Director Len Fishman

A nationally recognized leader in health care and aging, Len’s priorities as director were guided by two goals. First, increasing the institute’s relevance, reputation and influence through its research and policy work. Second, boosting external funding.

He achieved both. Thanks to the Institute’s enterprising faculty and fellows, external funding from grants nearly tripled during Fishman’s tenure, and private donations soared. Financial support for students increased two and a half times, opening doors for future scholars and policymakers.

Fishman also helped the Institute become even more prominent in its signature areas of research on older people, including economic insecurity, race- and ethnicity-related health disparities, healthy aging, and age-friendly communities, while striving to bring that work to the attention of policymakers and the general public through robust communication.

The Gerontology Institute also deepened its expertise in long-term services and supports (LTSS) under Fishman by adding a fourth center — the LeadingAge LTSS Center @UMass Boston. This three-way partnership among Community Catalyst, LeadingAge and UMass Boston unites researchers and policy analysts in academic and applied settings, an innovative collaboration illustrative of Len’s knack for building strategic alliances whose whole is greater than the sum of their parts.

Fishman and Gerontology Department Chair Jeff Burr treated their respective units as a united enterprise, resulting in increased productivity of faculty and more opportunities for students to conduct research, be mentored, and earn money for their education. Fishman and Burr led the recent effort to establish the Frank Caro Scholarship for Social Justice in Aging. Named after one of the UMass Boston Gerontology program’s founders, the fund has raised approximately $370,000 thus far. The funds will be used to recruit and support doctoral students from under-served communities.

“The last seven years have been the best years for gerontology at UMass Boston and a lot, a lot, a lot of the credit goes to Len,” Burr said.

Len came to UMass Boston after serving for 12 years as CEO of Hebrew SeniorLife, New England’s largest nonprofit provider of senior housing and health care. Prior to joining HSL, Len was president and CEO of LeadingAge, in Washington, D.C., which represents 6,000 non-profit senior housing and health care providers in the U.S. and Canada, serving over two million older people. Before that, he served in the cabinet of Governor Christine Todd Whitman as commissioner of the New Jersey Department of Health and Senior Services, where he led the governor’s initiative to unite programs serving older people into one cabinet-level department. He previously practiced law as a health-care lawyer in New Jersey and Pennsylvania.

“We are on the cusp of the greatest demographic transformation in history,” said Fishman. “The human lifespan has increased by more than a third, and very soon, one in five Americans will be 65 or older. Yet we are nowhere near ready to meet the challenges or take advantage of the opportunities presented by these changes. Our gerontology program is a beacon of learning and hope.”

“I will, of course, remain involved in the field of aging. As our chancellor, Marcelo Suarez-Orozco recently observed, population aging is one of the three greatest challenges facing humanity. My generation (me included) has not covered itself in glory in dealing with the other two: climate change and racialized inequity. My retirement will allow me to spend more time on both. It’s been an honor to work with the Gerontology program’s talented faculty, fellows, staff and students, and a privilege to work at the nation’s third most diverse university during this most recent racial reckoning. The demographics of UMass Boston’s students are a preview of what our nation is becoming – they are my greatest source of hope for the future.”

Study Examines Impact of Medicare Purchasing Program on Skilled Nursing Facilities Serving Vulnerable Populations

What happens when the government decides to reward skilled nursing facilities that perform better and penalize others that don’t do so well? The early results were not good for facilities that primarily serve vulnerable populations.

A new study led by Gerontology Institute Fellow Jennifer Gaudet Hefele looked at first-year results from the Medicare Skilled Nursing Facility Value-Based Purchasing (VBP) Program that provides bonus incentives and payment penalties to facilities based on performance. The research, recently published in Health Affairs, found facilities serving vulnerable populations got fewer bonuses and were subject to more penalties. Continue reading

Jennifer Gaudet Hefele Leads Research on Care Disparity at Nursing Homes

Reports examining racial and ethnic disparities in the quality of nursing home care typically focus on the very big picture – the collective experience of thousands of residents living in many facilities. Should the same kind of information about individual nursing homes be publicly reported as well?

It’s commonly acknowledged that in the U.S., older Black and Hispanic adults often reside in lower-quality nursing homes, which focuses debate on access to high-quality facilities rather than the care of individual residents. That begs another question: Do disparities still exist between residents of different races and ethnicities within the same nursing homes?

Assistant professor Jennifer Gaudet Hefele of the UMass Boston Gerontology Department, along with six co-authors, recently published the first study to examine within-facility differences in nursing home quality by race and ethnicity for a large set of publicly reported quality measures nationwide. Continue reading

The Journey Toward Equity in Health Care

This post originally appeared on The Joint Commission Quality Data Download blog.

By Jennifer Gaudet Hefele, PhD

“If there are differences, they should be known.”Focus group participant, White female

This is what one respondent said when asked whether a nursing home’s report card should show quality performance ratings for each race/ethnicity represented among its residents. In other words, should a nursing home report show a quality measure for how well a facility does for its Black residents and, separately, how well the facility does for its White residents? Continue reading