“Getting through the day” An Interview with Carol Cooley

Posted on May 24, 2012 by

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Carol Cooley has worked as a physical therapist and advocate for seniors and disabled adults since 1994. She was named a finalist in the North Carolina Literary Review’s 2010 short story competition and earned an honorable mention in Glimmer Train’s May 2011 Short Story Award for New Writers. She currently lives and works in the Raleigh-Durham, N.C., area.

Cooley’s essay tells the story of Margaret, an 80-year-old painter and teacher whose mobility is affected by a stroke. Margaret’s unsuccessful rehabilitation leads to long-term care in an overwhelmed nursing home, where her family discovers the limits of Medicare. Interview conducted by Robyn Jodlowski.

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Is Margaret’s story, from illness to steady decline, a common narrative for nursing home residents?

Unfortunately, it is. Aside from people who enter a nursing home for the purpose of a short-term stay (after a joint replacement, for example), the variable is how long the decline lasts—weeks, months, or years.

How can families find out if a nursing home is a good one before moving their loved one in?

There are public records available in each state regarding inspection outcomes, but these don’t address the psychosocial dynamics and personal interactions between residents and employees. I think the best thing to do is visit several times. Walk down the halls and get a feel for the attitudes of the people who work there, especially the hands-on caregivers. These are the people who provide the most intimate care. Find out the employee turn-over rate and ask to meet and talk with some of the employees—do they seem overworked or frustrated? Also, research progressive nursing homes that may offer a different model to care. Ultimately, trust your intuition.

What would an ideal nursing home look like?

Some important points that come to mind are:

A smaller than average facility may allow for more intimate care and connection.

All residents should have the right to a private room, not strictly based on what they can pay. Privacy is something people tend to lose when they enter a nursing home.

Residents should have the ability to be outdoors daily and have plenty of outings in the community.

If physically and cognitively able, residents should be active in taking care of themselves and one another—folding laundry, cooking, cleaning, leading activities, watering plants, etc. The idea is for people to have some purpose every day—something they are responsible for so that they don’t feel helpless.

Profits should address fair compensation packages for hands-on facility workers and paid time off to avoid burnout.

The administration should have strong standards in the way employees interact with residents.

What are some of the specific barriers to individualizing end-of-life care?

Money and resources. Many families desire to have their dependent loved ones at home for their end-of-life care, but cannot provide for it, either physically or financially. Even if they can afford outside help, many still have no idea where to start looking or who to trust.

Do you think that as the Boomers age and experience some of the injustices of late life care, they will spur significant change?

Yes. How our culture manages end-of-life care is getting more and more attention. Being open to a dialogue will create more awareness. We have to keep sharing our reflections and personal experiences. The message in a personal story will speak for itself.

Where will change begin—in court? in Congress? at the facilities themselves?

Change from the inside is something that can happen now. You don’t need the governor’s signature or a bill to be passed to begin treating someone in institutionalized care with more respect.

In particularly bad cases like you describe in your essay, it seems that everyone ends up demoralized, from the staff to the patient to the family. How does a person keep working in that situation? How does one keep living?

It was emotionally consuming to experience a situation like Margaret’s. For me, staying aligned with the patient and family kept me focused on what we needed to do. I felt like I was on the right side of things with this attitude. Not all nursing home workers struggled with the indignity, or at least they didn’t show it. Some concentrated on getting through the day—watching the clock, as they say.

I suspect many long-term residents surrender to the situation. Some are so incredibly sweet-natured. Years back, I met two women in a nursing home who were roommates. They both confided in me that the best thing to do was keep quiet about their complaints. They told me they didn’t want to risk being thrown out and end up someplace worse. They were childhood friends who found each other again at the nursing home. Both requested room changes so they could be together, and were glad that they at least had each other. For some who are happy and comfortable, the nursing home is actually an upgrade to how they were living prior.

How can our culture change how we view the elderly? Do we need more Betty Whites on television? More multi-generation homes?

I think cross generational interaction in families is important. I look at my own children, who have close relationships with their grandparents. They seem to naturally respect the elderly and are somewhat humbled around seniors. I sense some of this is based on the ties they have with their grandparents. Of course, the elderly have a role in how they’re viewed, too. It’s hard not to be inspired by elderly people who keep creating and build meaning in their lives.

Can you share a successful rehabilitation story?

There have been so many that it’s hard to pick just one. I worked with a woman not much younger than Margaret, in almost the identical situation, who also did not rehabilitate enough to go home. She was admitted to long-term care. Every now and then she would come into the rehab room and tell me that she was still doing her exercises and pulling herself up on the hallway railing to practice standing. Almost a year later the standing turned into marching. The doctor gave her an order to start the therapy again. She was walking short distances soon after and became independent enough to go back home. On the day she left I told her that she rehabilitated herself. I still tell my patients her story. Never give up.

How would you define a “good” death?

It felt best to answer this question based on what I would want. At the end of my life I would want to be surrendered to the reality of my death, not reaching for something to anchor or sustain me here. In the event I couldn’t speak for myself, I’d like my loved ones to be clear on what my wishes were. I would want to be comfortable, not in pain, clean, and surrounded by things that are familiar to me—in my own home with the people I love, my pets. … I’d want to have access to plenty of fresh air, the smell of something soothing like lavender, and natural light. I would want to say “thank you” and “goodbye” to those who took the time to witness my life, then share my last breath with as many of them as possible.

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Robyn Jodlowski is an editorial assistant at Creative Nonfiction and a recent graduate of the University of Pittsburgh’s creative nonfiction MFA program. She tweets @RoJoOhNo.

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