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.

Engaging People with Dementia

  • Management of Aging Services grad awarded $500K grant to support project begun at UMass Boston

A modest decline of memory loss is fairly common in aging. But, Debby Dodds MAS ’14 says she could “see the disenfranchisement of early-stage memory loss” in her mother and her friends.

Debby Dodds, MAS

Relocating her mother to an assisted living community near her own family in California, Dodds was dismayed to find that the facility did not have access to wi-fi for its residents. Dodds — who works in technology — found this unfathomable.

“There was this whole population we weren’t connecting with,” she says.

Wanting to use her knowledge of technology to support older adults who, like her mother, were dealing with memory loss, Dodds decided to go back to school to understand the psycho-social aspects of the aging population. She enrolled in UMass Boston’s Management of Aging Services program — offered only online — to study gerontology and explore the field’s current research while pursuing her interest to use technology to support this population.

Among her first projects was using software downloaded to a tablet to record her voice over photos to create a story and share family memories with her mother. Soon her sibling and the grandkids were doing the same. The bonus was caregivers could play the stories for her mom to stimulate fond memories when family wasn’t there. The story engagements produced warm and happy feelings for her mother, personalized engagements with her caregivers and created enjoyable interactions for Dodds and her family members.

“Reminiscing helps us all stay connected to our past successes which can keep us happy,” says Dodds. “With memory loss, it becomes more difficult to recall our life’s joyful events. That is where technology comes in. With personalized and content-driven tablet engagement, people with dementia can stay in tune with the best parts of their personhood.”

Dodds expanded this concept for her capstone project. She created a workshop, TouchTEAM (Tablet Engaged Active Minds), which used digital technology to engage individuals with memory loss and allow their caregivers to connect with them. She launched the free program through the Santa Cruz Public library. The library provided iPads which she loaded with music, games, photographs, puzzles, and videos and volunteers worked with individuals with dementia and their families to offer new ways for them to connect. The workshops were met with considerable success.

Client engaging with CTC app

“The experience I received through the gerontology program was powerful,” says Dodds. “I really cherished my time there. The professors were knowledgeable, patient and guiding. I think one of the most valuable things was being in class with people from all over the U.S. Each state manages its aging population differently. I hadn’t anticipated how valuable that aspect would be. I’ve kept in contact with many of my colleagues and value their perspectives about our work.”

Dodds says she was offered every opportunity to tailor assignments to her interest in using technology to work with people with dementia. Today, she’s a partner in Generation Connect and helping formal caregivers across the U.S. use mobile devices with personalized content to enhance the quality of life for their clients.

Currently Dodds and her colleagues are pilot testing an app based on her capstone project. Awarded a grant of nearly $500,000 from the National Institutes of Health, National Institute on Aging, and Small Business Innovation Research program, the team is piloting the Care Team Connect (CTC) app with a variety of Visiting Angels and Right at Home, home-care agency franchises across the country.

During the pilot, managed tablets with the CTC app are customized to help home care providers collaborate with families and personalize engagement with their clients. Together they develop music playlists to enhance mood, and build a collection of personalized family photos and videos to help caregivers connect more meaningfully with clients, much like family would if they were present.

“The tailored tablet allows us to build trust between the caregiver and the client that is driven by the content family provides,” says Dodds. “There’s such a wide variety of personalized information available. Things such as favorite songs, family photos, or culturally specific events that allow us to tap into who that person is. We had a client who was Navajo, he was moved to be nearer his eldest daughter and lost touch with his culture. We provided his caregivers with a tablet that had videos of Pow Wows and news in his native language. He was thrilled to reconnect with his personhood in this way.”

Dodds says this type of technology can help reduce turnover related to the care of clients with dementia, improve the ability to age in place, and provide support for non-clinical home care services as reimbursable through supplemental benefits.

She knows firsthand how valuable this tool is for the caregiver and the patient.

“My mom lived with memory loss for ten years,” she says. “The last year of her life she lived with my family and we became user number one of the CTC app. I think most people don’t consider having their parents with dementia live with them during the last year of their life, but at that very sensitive time in our lives, it went really well. Investing in the MAS degree helped shaped my life personally and professionally, and I am grateful.”

 

Boston’s Older Population: Increasing in Racial Diversity, but Quality of Life is Shaped by Racism, Discrimination

A new report from UMass Boston identifies aging equity among Boston residents

The number of Boston residents aged 60 and older has increased by more than one-third in the last eight years and more than half of older residents are persons of color. However the experiences of these older residents differ substantially depending on race, ethnicity and gender, and challenges their abilities to thrive.

A new report, “Aging Strong for All: Examining Aging Equity in the City of Boston,” by researchers at the University of Massachusetts Boston, documents disparities across three dimensions that impact quality of life — economic security, health, social engagement — and identifies opportunities for stakeholders to ensure an environment in which “aging strong” is possible for all Boston residents. Jan Mutchler

“It has never been more critical to strategically pursue greater equity in the aging experience of Boston residents,” says Jan Mutchler, PhD, director of the Center for Social and Demographic Research on Aging at UMass Boston, a professor in the Department of Gerontology and one of the study’s authors. “The numbers of older adults are increasing and stakeholders share a growing recognition of the powerful ways in which inequity, racism, and discrimination shape health outcomes and the aging experience, amplifying the need to examine and remediate disparities in aging.”

The report identifies substantial disparities across racial and ethnic groups, such as:

Economic security

  • Poverty rates are especially high among Asian Americans and Latinos, and more than one-third of these residents age 60 or older live in households with incomes below the federal poverty line.
  • Sizable gaps differentiate racial groups. For example, while a similar share of non-Hispanic White, Black and Native American people aged 66 or older receive Social Security benefits, percentages receiving Social Security are considerably lower for Latinos and Asian Americans.
  • Housing costs in Boston place a heavy burden on older residents and half or more of renters age 60 or older pay more than 30% of their incomes for housing. Fewer homeowners bear such a heavy cost burden for housing, but older Black, Latino and Native American homeowners are at amplified risk for being cost-burdened.

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Reach Out Massachusetts Mobilizes Communities to Combat Social Isolation

The desire to spend time alone is a natural and even healthy urge. But, seeking time alone and social isolation, are not the same.

Social isolation — defined as a lack of social connections — is considered a serious public health risk and can impair one’s physical and mental health. Older adults are at increased risk for social isolation because they are more likely to have lost a spouse and close friends, live alone, suffer from a chronic illness, or have limited mobility.

To combat this devastating public health problem, the Gerontology Institute at UMass Boston and AARP Massachusetts have created a resource guide highlighting ways in which many Massachusetts cities and towns are already addressing social isolation in their communities. The guide is the first completed project of the Massachusetts Task Force to End Loneliness & Build Community. The task force is co-led by Sandra Harris, president of AARP Massachusetts, and Caitlin Coyle, Ph.D., the lead author of the resource guide and a research fellow at the Gerontology Institute at UMass Boston. Continue reading