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Susan Partnow — A Life Interrupted

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Susan Partnow with her husband, Jim.

When we are called to be caregivers

By SALLY JEAN FOX

Life is what happens when you’re busy making other plans. —John Lennon

Few of us deliberately plan to become caregivers. We have lives, commitments, and passions that are important to us, all of which could be dramatically disrupted by a loved one’s illness, physical or mental challenges, or accident. While it might be difficult to think about how we would cope and provide care if the worst should happen, the time to consider it is now.

Susan Partnow’s life abruptly changed when she was 71 and her husband, Jim, received a diagnosis of laryngoesophageal cancer that required life-altering surgery. Then, two years later, tragedy again struck her family, and she added a new role to her plate—caregiver to a caregiver, this time supporting her daughter.

At the time of Jim’s diagnosis, Susan was enjoying new freedom after leaving her job as a consultant in a health care system. For 18 months, she had been planning a service project about which she was passionate, leading a citizen diplomacy mission to Kashmir, India. Unfortunately, the trip was scheduled to begin just two weeks after her husband Jim’s surgery.

Technically, she and her husband were separated and lived independently of each other on different floors of their house. Yet Susan knew she was the one person in his life who could be his primary caregiver and that this was how she was being called to serve.

But what about India? She could cancel the personal portion of the trip. But 24 people were depending on her to lead the mission. She knew that the surgery her husband was facing was grim, requiring the removal of his larynx (voice box) and the reconstruction of his esophagus. Even after the surgery, he would require months of rehabilitative care.

Susan said “yes” to caregiving and set to work to figure out how to lead the Kashmir mission before stepping into her new role. She was determined to make it work. “My whole being was clear—I needed to go.”

Unlike some of us suddenly confronted by complex events or tragedy, Susan had several assets going for her. She knew how to navigate the health care system and research appropriate care options for Jim, including rehabilitation hospitals. She had a strong network of friends she could ask for support. And she had developed many beneficial personal practices as a teacher of “Compassionate Listening.”

A plan for her absence emerged. Friends stepped up to help. One volunteered to “be Susan” in her absence. Jim moved into a rehab hospital the day before Susan’s flight to India. But the move didn’t go smoothly. The weekend staff wasn’t prepared for the level of care needed to support a man who couldn’t speak and had a tracheostomy. And Jim was scared. Hours before her flight to India, Susan held an emergency meeting with the rehab hospital director to try to improve the situation.

But when Susan woke up her first morning in India, she saw a text from Jim pleading, “Get me out of here.” Jim wanted her nearby. But she was thousands of miles away and had to rely on the friend she had left in charge, who was increasingly overwhelmed by the situation. Things did not go perfectly while she was away, but two and a half weeks after departing Susan was back in Seattle in her new role as primary caregiver. The long haul of rehab began. Jim could neither speak nor swallow and couldn’t eat on his own. After months of healing and speech therapy, Jim finally mastered his smartphone so he could text to communicate. Then, he learned to speak using an electrolarynx. (Sadly, he will always need a tube to eat.)

When he was finally able to return home, Jim required extensive care. Susan had to learn the mechanics of tube feeding with many messy mishaps. “I’m not a nurse, and I’m not good at feeding and wound care.” What she was good at, though, was finding help. Home health provided some. Other support came from friends who visited Jim, walked the dog, and did tasks, thus giving Susan breaks.

Susan’s “Compassionate Listening” training helped her face a heart-wrenching situation with more equanimity than many of us would have. She worked to have compassion for herself and Jim, and to practice returning to her heart, again and again, when challenges set her spinning. She could also ask the difficult questions some of us would avoid, like when she said to Jim, “Do you want to go on?” That question turned out to be a shocking wake-up call that helped him move forward.

Tragedy strikes again

Susan Partnow’s caregiving responsibilities would have been more than enough for most of us, but two years after Jim’s surgery, another tragedy struck the family. Her daughter, Jessica, and son-in-law, Kurtiss, were one year into a happy marriage when he, at 38, had a catastrophic stroke.  Kurtiss survived the stroke to face a life with disabilities affecting his mind, coordination, and movement. Impacted by severe ataxia, he can’t walk or coordinate his movements, nor can he sing or play piano, as he once had done so beautifully. His career as a software engineer is gone. Jessica must bring in income and continue her career in nonprofit management and journalism while trying to support her husband’s many needs.

It’s hard enough to be a caregiver. But watching those we love bear the weight of caregiving is also painful. Susan saw her daughter’s load and stepped in to help. She became a caregiver to a caregiver, spending time with Kurtiss so that Jessica could have breaks, earn income, and have some life to herself. Susan visits her daughter’s place three afternoons a week to be with Kurtiss and take him to appointments. “We’ve become great friends,” she says.

Susan is a lucky one. She has a strong community, a sense of purpose as a caregiver and activist, and well-developed inner practices. The need for care has stressed but not bankrupted her family. Still, there are painful times when she asks, “Why were we so unlucky?” or “It’s unfair.” At those times, she tries to redirect her mind toward gratitude and appreciation, while reminding herself that dwelling in suffering and misfortune, however understandable, won’t help her situation.

While Susan’s story is unique, it contains lessons for all of us who never know when we may be called to provide care:

  1. Build your community now. Talk with friends about what you would do in an emergency and how you can support each other.

  2. Develop positive mental health practices. Susan uses “Compassionate Listening.” You may use your faith or a meditative practice. Develop your resilience before tragedy strikes.

  3. Research caregiving resources in your community. What do people do when they need help? Are there care groups? Home health options? What rehab facilities are good? You may not need this information yet, but your preparation might also help another.

  4. Be willing to accept support. When we are exhausted, overloaded, or depressed, it can be hard to ask for help. But caregivers deserve care. We can learn a lot about accepting help by discovering what supports others in our communities and then offering that help.

  5. Don’t bury your grief and deep feelings. Therapy, grief counseling, caregiving support groups, books, and conversations can help.

  6. Practice self-care. Go outdoors, walk, be in nature, and notice what brings you joy. Make a list of delights—or things you can do when life takes a difficult turn. You may need it.

The challenges Susan and her family have faced, however difficult, have come with gifts. She and her husband have become closer, and she loves being connected and interwoven in the lives of Jessica and Kurtiss. Her life isn’t the one she expected, but Susan is grateful for what she has. Part of her path has always been service, and she has plenty of ways to serve. “Service is love and that’s what life is about. In that way, I have a purpose. I am needed. I am serving. I am both caring and feeling cared for,” she shares.

That’s not to say it is easy. Susan tries to have compassion for herself and others. “It’s the heartbreak I don’t like. That doesn’t go away,” she says. “There’s a deep river of sorrow under it all. And that’s how it is.”

Sally Jean Fox, PhD is the author of Meeting the Muse after Midlife: A Journey to Meaning, Creativity and Joy, a writer, artist, and creativity and transitions coach.  She lives on beautiful Vashon Island, Wash.

This story was made possible by funding support from AARP Washington and BECU. For more information, tips and resources for family caregivers in Washington state, go to: www.aarp.org/caregiverswa

Important! Your Vote Needed to Keep Long-term Care Benefit in Washington State

An initiative that threatens to eliminate the WA Cares program appears to be headed to the November ballot. Initiative 2124 would allow people to opt out of the public long-term care insurance program and would destabilize the funding it needs to succeed.

Seventy percent of adults 65 and older will require some assistance to live independently as they age. Still, most of our growing older population lacks the financial resources to pay for the care they need. While private long-term care insurance is an option, rising premiums make it too expensive for most, and many applicants are denied due to pre-existing conditions.

The WA Cares Fund provides flexible and meaningful benefits, allowing families to choose the care setting and services that best meet their needs, including help with personal care, medical assistance, home modifications, and more. The benefit can also pay family caregivers to help offset lost income while they are providing care.

If I-2124 passes, Washingtonians will lose access to this affordable guaranteed benefit to help pay for the long-term care services and support they need.

Are You a Caregiver? Check out these Resources:

 

Don’t Miss Our 4-part Series on Caregiving!

The Caregiver’s Journey—A Four-Part Series

The Caregiver’s Journey Part 2: Looking After Yourself

The Caregiver’s Journey Part 3: Getting Caregiving Help

The Caregiver’s Journey Part 4: When Caregiving Ends

Caregiver’s Journey

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