“In all our contacts, it is probably the sense of being really needed and wanted which gives us the greatest satisfaction and creates the most lasting bond.” —Eleanor Roosevelt
Crystal is a trim Korean American woman who managed an ice-cream parlor until she retired. Once customers came in a couple of times, Crystal always remembered them. She and her husband, Joel, were my friends of the road. Jim and I dropped in for cones and we often attended the same concerts and worked together on community projects.
One Sunday, as I was looking over tomatoes at the farmers market, I saw Crystal pushing Joel in a wheelchair. Joel waved and smiled at me over the basket of produce he had in his lap. He conveyed his usual friendly persona, but his smile was crooked and his right arm hung by his side. I hugged him and we chatted for a minute. His speech was slower, softer, and more limited. Occasionally he scrambled words and I had to guess what he was trying to say. When he pointed to the bluegrass band nearby, Crystal rolled him over by the stage. Then she and I sat down under a cottonwood tree by the little creek that ran beside the market.
“After Joel’s stroke, our lives became much smaller,” she said. Joel suffered considerable cognitive impairment and required a great deal of physical therapy. Also, like many stroke patients, right after his stroke, he was depressed. Crystal said, “Joel’s doing better now. At first, we were both overwhelmed. Overnight our lives morphed into something totally different.”
Now Crystal’s life is built around caring for Joel. She drives him to his appointments and helps him with his speech and physical therapy exercises. She pays the bills, deals with taxes, and, most frustrating of all, she manages all the insurance and medical and government paperwork. “You would not believe how many hours I spend examining manuals and bills,” she said, shaking her head.
She misses the Joel who helped her work through ordinary human problems such as getting along with her siblings and dealing with a difficult neighbor. Joel had been empathic yet practical in his approach to relationship issues. He had known her family for decades and, at just the right moment, he could make a joke or suggestion. However, Joel still helps in any way he can. He is always there to listen and comfort Crystal. Sometimes he can’t express his ideas the way he wants, but he can still joke, nod sympathetically, and put his good arm around her.
Crystal said that they are adjusting to their new lives. They listen to podcasts or watch comedies. Three times a week, she invites someone over for tea or drinks. Old friends come to visit and fill them in on what is going on around them.
“We don’t compare our life now to our old life. It’s a different life. But we still love each other and get along,” Crystal continues. “I wouldn’t want Joel anywhere but with me.”
Crystal is a typical caregiver, a woman in our life stage caring for a family member with health problems. Her life has changed radically and she misses her former life, but she is making the best of her new situation.
Not all women who want to care for a family member can do it. Sometimes, they live a thousand miles away or have demanding jobs or health problems. Other times, they simply have too many people to care for and must make hard choices. Often women wish they could do more and feel guilty that they cannot.
Caregiving for most women can be immensely fulfilling and terribly difficult. It’s the ultimate “both/and” experience. It provides us with the opportunity to feel useful but, at the same time, it can be isolating and hard on our health.
Traditionally, women have always cared for the old, the infirm, and the young. Like almost all generations before us, our generation of women was raised to be self-sacrificing. Our duties are not necessarily onerous. In fact, most of us have been caregivers all of our lives and continuing in this role can be satisfying. If we are lucky, we live in a rich web of interdependent relationships. We visit our friends in hospitals, make condolence casseroles, care for ill family members, and assist neighbors in times of need. We enjoy the people we help and know that some of them may later return the favor.
Caregiving requires us to put aside our own needs and sacrifice our time for the welfare of another. Especially as the work approaches full-time, it’s bound to have its dismal aspects. Yet many people choose to do it and feel good about it. Because of its paradoxical nature, caregiving presents us an opportunity to explore the question “What do we mean by happiness?”
Caregiving provides many of us with meaning and purpose. In an era when 40 percent of Americans feel as if their lives have no meaning, this is no small benefit. Yet, a 2015 survey by the National Alliance for Caregiving found that almost 40 percent of caregivers find their work highly stressful and between 40 percent and 70 percent of caregivers suffer from depression.
In her essay “What is the Good Life?” Emily Esfahani Smith compares happy lives to meaningful ones. Happiness is about feeling good and getting what we want. In a sense, it is about taking. On the other hand, meaningful lives often involve suffering and self-sacrifice in the service of a transcendent purpose. However, Smith concludes, “Happiness seekers are unhappy when they don’t get what they want. Meaning seekers can survive negative events.”
The question here is, how do we define happiness? We don’t have adequate words to parse its many forms, and we could benefit from more nuanced language. We need a word for the happiness we feel eating ice cream at a festival, after making love on a lazy fall afternoon, on hearing that one of our grandchildren won a scholarship, or when we run into a long-lost friend at an airport.
Contentment is a form of happiness, as is excitement over interesting things happening. Anticipating a vacation or a Saturday-night party is one kind of happiness, and getting a good night’s sleep and waking up refreshed is another. Finally, there is the happiness that comes from helping other people and doing our duty. We need all these kinds of happiness in some particular balance. It’s the balance that is tricky.
American culture doesn’t make it easy to sort through this issue. Americans tend to value work that produces income, but actually, the most important work for society often doesn’t do that. Sadly, professional caregivers are poorly paid and many unpaid caregivers are not acknowledged for their constant efforts. If we define work as the creation of the good on earth, then caregiving is some of the best work we can do.
As friends or family members and caregivers, we can help a great deal by listening and empathizing with women who are in the thick of it. We can bring them small gifts, such as books, chocolates, or flowers, and make sure they are invited to get-togethers even if it is unlikely they will make it. When women are homebound caretakers, a daily phone call can be a lifesaver. We can acknowledge both the efforts other women are making and validate the importance of those efforts.
Ardith is a graphic artist who takes care of a cantankerous mother. Her mother should be in a care facility, but refuses to go. Several times a day, she calls Ardith demanding that she come fix her garbage disposal, help her with her hair, or wash her clothes. When Ardith does these things, her mother doesn’t thank her. She takes it for granted that Ardith will serve her in all ways.
While Ardith does her best to set limits, she does not want her mother to suffer. That means that, after long days of work, she drives to her mother’s instead of going home to cook a meal for herself and her husband. Ardith is tired all the time and sighs whenever she speaks of her mother.
Over time, her relationship with her mother has affected her marriage and her mental health. She knows her husband will stay loyal, but she feels guilty that she misses so much time with him. She cannot help but feel used and bitter. Ardith told me, “I received awards for my art, but nothing for Mom Duty.”
“I’m buying you a trophy and a dozen roses,” I said.
Ardith laughed and said, “Just buy me the roses. Yellow, please.”
I bought the roses but, at the same time, I know that Ardith’s and all other caregivers’ primary validation must be internal. When we do something arduous such as deal with an insurance company all day, we must give ourselves credit for our skill and persistence. At the end of a difficult afternoon, we need to remind ourselves that we perform honorable labor and that there will be better days. That is harder than it sounds. Perhaps caregivers should tape a note on their bathroom mirrors reminding them to praise themselves for their day’s labors.
As Ardith told me, “Nothing I’ve ever done is as punishing as caring for my mother. I have no time for myself. I oscillate between guilt and rage. My blood pressure is up.”
She continued. “I tell myself I am earning stars in my crown for heaven. On my deathbed, this will be what I am most proud of. I persevered at a thankless task simply because it was the right thing to do.”
When we are caring for anyone on a full-time basis, we must learn to balance taking care of others with taking care of ourselves. We need to develop a truly effective self-care plan. Step one of our plan can be exploring and accepting our own emotions about the situation. We can acknowledge our ambivalence, our anger, frustration, and bitterness. We can go outside and scream in frustration or break down and cry for as long as we need to. Expressing strong emotions is actually a skillful way to relieve them.
We may need to set more limits. Ardith, for example, may sometimes need to say no to her crabby, ungrateful mom. But setting limits with sick loved ones usually necessitates considerable retraining. We women are socialized to feel responsible for everyone and, if we aren’t careful, we can have so much empathy that we wear ourselves down meeting others’ needs.
When we sense this is happening, it’s important to refocus on what we must do for ourselves in order to stay vital. This could be meditation, taking our dog for a walk, dinner out, sleeping in, or working in our garden. Once we know what we need, then we can explain to others that we will be there to help after we have cared for ourselves. Then, instead of feeling guilty, we can praise ourselves for setting healthy limits. This kind of self-protection is especially important when we are caring for someone who may need us for a long time.
We may want to ask for help from friends and family members or find a support group and schedule days off for self-care. If the person we are caring for is homebound, we can invite in visitors. A home with people coming and going is cheerful and can help our loved one keep up on the news.
• • •
Willow’s husband, Saul, had trouble with balance and had fallen twice on the way to his bookstore. Willow suspected he had some kind of ear infection. She encouraged him to see his doctor and, one afternoon, Saul closed his bookstore and went in for a checkup. The doctor ordered tests and asked Saul to come in for results in a month. Willow wanted to go with him, but she was writing a grant. Saul was alone when he heard that he had mid-stage Parkinson’s and was likely to soon have more serious symptoms.
At dinner, in his low-key way, Saul told Willow about his diagnosis and prognosis. Willow pushed away her plate and sobbed. Saul patted her arm and murmured, “We’ll be okay. Let me worry about this.”
In addition to her sorrow, Willow was frightened that Saul’s health eventually would interfere with her career, but he didn’t ask her to make any changes. However, that next month, Saul put the bookstore up for sale and hired someone to manage it until it sold.
For a while, things went on as normal. Saul flew alone to visit his brother in California. He joined an exercise group for Parkinson’s patients and continued to see friends and visit bookstores. But a year later, he fell and broke his wrist. He needed Willow’s help to dress and shower. His tremors worsened and, when he was tired, his head rolled from side to side. He had a hard time making eye contact.
At first, Willow felt overwhelmed. Her life had been upended and many of her assumptions about the future no longer held. Resources for Saul were not in place and everything required new learning. Despite her career working with people in need, Willow felt totally unprepared to be a caregiver in her personal life.
After dinner one night, Willow blurted out, “Retirement makes me think of being isolated, tired, and lying around all day in pajamas doing nothing.”
“We’d be together,” Saul replied. “Can’t you imagine that being fun?”
Willow honestly could not. She worried about her clients Ruby and Myron and all the others she would be abandoning. She wondered if she and Saul would get on each other’s nerves or become one of those couples with nothing to say to each other. When she pictured a life of putting on Saul’s shoes or helping him to the bathroom, it looked so dismal.
As they waited for a cab one evening, Willow repeated her worries about retirement. Saul looked at her with exasperated tenderness and said, “If I ever need help at home, we will hire a caregiver. The most important thing is that you be happy.”
Willow was reassured by this comment, but it made her feel guilty. Meanwhile she kept working, but she left the office at five so that she could make it home in time for Saul’s physical therapy. This arrangement wasn’t ideal for either of them. She rushed out before her day’s work was done and Saul was alone all day.
Willow felt exhausted and unfocused. Saul had been the one who had cooked and cared for her. She knew she had emotionally difficult decisions ahead. She wanted to do the right thing for Saul, but she loved running the show at work, and all of a sudden, her show was in its third act.
At home, she had times when she snapped at Saul or wondered if she was courageous enough for the fate she was facing. She prayed for strength.
Yet, at the same time, emergencies called for emergent behavior. Not everyone experiences growth when growth is required, but Willow slowly grew into a better version of herself. She accepted the new reality and switched from seeing herself as a victim to seeing herself as a volunteer.
Over the next year, as Saul’s health deteriorated, Willow became stronger by simply meeting each new challenge. Day after day she helped Saul with his many physical needs, and slowly she acquired more patience and endurance. She developed a strong set of internal resources, and she grew into a more empathic woman. Her relationship with Saul became both deeper and more fun.
Willow continued to balance work and care for Saul. She was determined to make both their time and her time enjoyable and, mostly, she succeeded. She had been a good coper all of her life and she was resilient now.
She knew that when Mother Teresa was dying, she said, “I have worked for God all of my life and I know I will soon be dancing in heaven. But I wish I had danced more during my time on earth.” No matter what situation she was in, Willow was determined to find some moments for dancing.