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Because You Care

You imagine yourself as a loving caregiver but then come up short of time, money, and patience. What do you do?

By Katherine Griffin

BecauseYouCare_HP

When Priscilla Fitzpatrick's elderly parents made plans to move near her, she knew she would be taking a more active role in their care, but she welcomed the chance to see them through their later years. Then, just a month before they arrived—and shortly after she celebrated her daughter's first birthday—Fitzpatrick was diagnosed with cancer. It felt as if her world was cracking apart. And once her parents did move nearby, their world collapsed on top of hers.

"The move put my father's Alzheimer's into rapid progression," says Fitzpatrick, who lives in Richmond, Virginia. "Then my mother got really ill with rheumatoid arthritis. Over the next two years, each of them was hospitalized twice. In between the hospitalizations, I would try to see them several times a week. I did their shopping and really anything else you can think of. I would be helping my dad communicate, helping him go to the bathroom, helping him wipe himself. And I was the person my mother would cry to. She was overwhelmed."

Meanwhile, Fitzpatrick was trying to cope with the treatment she was undergoing for the cancer that had invaded her thyroid gland, as well as the fears that the diagnosis brought—scariest of all, the possibility that she might not see her baby daughter, Frankie, grow up. After three surgeries and two rounds of radiation, she's come through the worst of it, and her prognosis is good. She's fully involved in the joyous exhaustion of being the mother of a lively, energetic four-year-old and is back at her part-time job in the local public school system. But her parents' continuing decline has meant that she's had little respite to process all that's happened and little sense that she's returned to a normal life. Her father is now in a nursing home, and her mother's needs are greater than ever. Although Fitzpatrick has nine siblings, most live several hours away, so she continues to shoulder most of the burden of her parents' care.

Situations like these are becoming sadly, awfully, familiar. Some 44 million—44 million!—Americans provide care to other adults, most often elderly parents. Typically, these caregivers are women in the middle years of their own lives who are suddenly thrust into a role for which, even if they'd vaguely seen it coming, they're completely unprepared. All at once they have to be a financial planner, housing manager, medical advocate, navigator of social-service bureaucracy, and sometimes a therapist. That's on top of handling the gradual loss of a loved one to a world of pain, confusion, and decline.

There seems to be no end to the difficult emotions that these situations bring up. "Most of us haven't faced what it really means to have these bodies that are going to get old and die," says Nischala Joy Devi, a yoga and meditation teacher who cofounded the Commonweal Cancer Help program in Bolinas, California, and is the author of The Healing Path of Yoga. "So caregiving brings up our own helplessness and fear."

For many caregivers, though, the dominant emotions aren't always the ones you'd expect. When I asked Fitzpatrick about difficult emotions, she unhesitatingly answered that resentment was the worst. "I'd resent my brothers and sisters for not coming to visit," she says. "Sometimes I'd resent my mother. I'd think, 'Why couldn't you have handled this?' I've lost a lot of empathy, and I don't like that in myself."

Mired in a Swamp

Too often if you're a caregiver, you find yourself mired in a swamp of anger, resentment, and irritation. When you're finally able to take a breath and get a little perspective, you feel guilty for having those feelings. The challenge becomes not just doing all that needs to be done, but finding a way to do it with some kindness and grace. How to cope with anger so that it doesn't leach into your interactions with the person you're caring for? How to find the stamina and patience to manage the insurance paperwork, phone calls to social workers, trips to the emergency room? How to face what sometimes feels like a black hole of needs, without getting overwhelmed and depressed?

Phillip Moffitt, a longtime yoga practitioner and member of the Teachers Council at Spirit Rock Meditation Center in Woodacre, California, is intimately familiar with this difficult terrain. He's had primary caregiving responsibilities in his own life and has counseled hundreds of caregivers. Last year I became one of them.

I meet Moffitt on a gorgeous spring day at Spirit Rock. Outside the meditation hall, the rolling hills are a vibrant green; hawks wheel overhead against a deep blue sky. Some 200 people have gathered for a workshop that Moffitt's held for each of the past five years, to offer caregivers a break andhelp them apply spiritual wisdom to their work.

I've come here because of a promise I made to my father that I'm finding hard to keep. My dad died in 2006 after a long struggle with Alzheimer's and Parkinson's disease. A few years earlier, I'd agreed to take his place as the person who would make medical decisions for his favorite cousin, Kitty, should the need arise. As the children of Irish immigrants, the two of them had shared a hardscrabble Depression-era childhood. Their early history included parents who'd died young, uncles crippled and killed by railroad accidents, and cousins who were sick for months with rheumatic fever. But they also shared a network of extended family that somehow cushioned the blows.

Kitty had never married, and my dad was her closest relative. I didn't know her well, but I'd always liked her. She and my dad both had what I thought of as a particularly Irish ability to deflect emotional pain with a joke and a laugh. She was tall, with beautifully coiffed white hair, and though her income was limited, she was invariably elegantly dressed.

Stepping In

When my dad brought up the subject of caring for Kitty, an image of her lying serenely in bed in a light-filled room flashed through my mind. I envisioned myself in that room, wise and compassionate, holding her hand and quietly deciding when it would be time to turn off the machines and let her go. I said I'd be happy to take his place.

Three years later reality set in. I got a call saying that Kitty had been hospitalized; she'd been hallucinating and was malnourished. Her doctor said that her dementia was likely to get worse, and she couldn't live alone any longer. The hospital would be discharging her within a week, and I had to find her a place to live.

While I leapt into action to do what needed to be done, I discovered to my dismay that I was not the kind and loving caregiver I'd imagined I'd be. During my dad's illness, my mom was on the frontlines, and I gave her a lot of support. It was wrenching and painful, but the emotions felt pure, clean; they were intense, to be sure, but didn't come tangled in a skein of aversion, annoyance, and guilt.

With Kitty, though, it was different. The demands on my time quickly felt unremitting, and I resented all of them. It started when she was still in the hospital, and I had just a few days to figure out where she would live. I had to take time off from work—right now—to consult with social workers and a lawyer, tour convalescent homes and assisted-living facilities, draft a power of attorney, and bring a notary to the hospital. Kitty's town was 15 miles away from mine, and there was a bridge undergoing earthquake retrofitting between them. Driving back and forth every couple of days, I usually got stuck in teeth-gritting traffic.

Then I spent the better part of four weekends cleaning out her apartment. It was a small place, but her dementia had brought on a habit of shopping at thrift stores for more clothes than she could possibly wear. Her bed, her couch, her dresser—every horizontal surface was covered with them, and the closets were stuffed full. Under the clothes I found crumpled bills and bank statements, lists in her spidery handwriting, half-eaten frozen dinners, candy wrappers. The place looked as though a giant had picked it up, turned it upside down, and shaken it. It smelled bad, and it was depressing. Other relatives pitched in, but I was the point person and the decision maker.

Facing Fears

Aside from all the tedious logistics, seeing the evidence of Kitty's decline brought up shadowy fears that I—also a childless woman—really didn't want to think about: What would the late stages of my own life look like? On the way to my last day, would confusion, disarray, illness, and pain be inevitable?

Over the months that followed, the demands of my role as Kitty's caregiver would ease off for a while, then start up again. Her bank made repeated mistakes, forgetting to put my name on one of her accounts. To get her finances straightened out, I had to fax reams of documents to her HMO, Social Security, the investment company that held her IRAs. Just when I'd gotten some set of paperwork sorted out, I'd get a call at work from the assisted-living staff: Kitty's cat had run out of food, and could I bring some over today? Driving in bumper-to-bumper traffic across that bridge, sometimes I'd just roll up the windows and scream.

After she had finally settled in at the assisted-living facility, I'd sometimes go for weeks or months without calling her. I felt guilty, but I just didn't want to have to do anything more for her.

My anger and frustration weren't directed at Kitty herself. I had shielded her from a lot of what I'd had to do, and she was unfailingly appreciative of the things she did know about. And I was moved at the resilience she showed as she adjusted to her new life; at mealtimes, for instance, she helped other residents who had a hard time feeding themselves. But when I got calls about something else she needed, my dark feelings resurfaced—with an intensity that shook me and didn't square with my ideas about myself.

At the Spirit Rock workshop, Phillip Moffitt becomes the first of several yoga and meditation teachers I consult. How, I ask him, can I be a better caregiver?

First, says Moffitt, an impish-looking man of 61 with a mop of curly dark hair, he doesn't much like the word caregiver. Instead, he prefers to use the phrase care provider. Caregiver, he says, sets up the expectation that you're going to get something back. "That's the death knell for being able to keep up a steady course as a care provider."

Caregiving as Practice

One crucial thing, Moffitt says, is not to feel guilty about the difficult feelings that caregiving brings up; all that does is add to the burden. "You have this attitude that you should be feeling better about doing this," he says. "That's just a concept. You feel how you feel. You're not supposed to go, 'Oh, how wonderful. This feels so good and it's an honor to serve.' No—what's really happening is, 'This is a drag, but I'm doing it.' That becomes the practice."

In fact, he says, approaching caregiving as a practice—you show up and do it consistently without a lot of drama, regardless of how you feel—allows you to learn from it in a different way. Paradoxically, you can become more present, while getting some distance from the afflictive emotions. It becomes less about accomplishing something and more about the process itself. "Someone has to push the stone up the hill," Moffitt says. "You're choosing to do it. The intention is, you're showing up to push the stone, not get it over the hill."

Throughout the daylong Spirit Rock event, Moffitt and the other presenters punctuate their talks with breaks for walking and sitting meditation. Care providers, Moffitt says, spend a lot of time in their heads, because they have to stay on top of so many logistics. He instructs us to listen for cues from our bodies that might signal ways that we could take better care of ourselves. A tightness in the belly, for instance, might suggest the need to take deeper, slower breaths as a way of nourishing ourselves. A constricted feeling in the throat might be a clue that we need to find someone to talk to.

Examining Selfishness

Indeed, virtually all the teachers I talk to over the next few months say that it's essential for caregivers not to neglect themselves. "One of the most important things we can do is take care of ourselves," Devi says. "We're taught that it's selfish—I don't know where that comes from."

Devi, too, has firsthand experience of caregiving. Her own mother grew frail and forgetful around the time she turned 90, with only enough savings left to cover perhaps a year of assisted care. Rather than risk her running out of money, Devi and her husband found a way to generate revenue that would pay for her mother's care. With her blessing, they used her funds to make a down payment on an old house near their own. Then they fixed it up and turned it into a small assisted-living facility, which they administered. "Instead of one mother, I had six," Devi says. Sometimes Devi and her husband had staff to help them, and sometimes they didn't. "Once, our caregiver quit two days before Christmas," Devi recalls. "I was working full time, traveling, and teaching. It was a really exhausting time. I thought if I could keep my center in the midst of all that, all my years of practice would be worth something."

Reaching for Respite

When you're in the midst of looking after someone whose needs are urgent and chronic, it can seem impossible to take care of yourself too: There simply aren't enough hours in the day to do all that needs to be done and fit in a yoga class, or even 20 minutes of meditation at home. And being around people who are sick, confused, or in pain can make it easy to feel that your own comfort is less important. But in the long run, putting your own needs aside isn't sustainable. The times when you feel the most squeezed are the times when it's crucial to find even tiny moments of respite.

"There's a Sufi expression," Devi says. "'Never give from the depths of your well, but from your overflow.'"

Finding small ways to replenish her well has been hugely helpful to Fitzpatrick. She's a longtime yoga practitioner, but during the most difficult parts of her own and her parents' illnesses, she just didn't have the time or energy for it. She did find comfort, though, in writing in her journal each day and in slipping away occasionally to spend a few moments in meditation or prayer. These days, she sometimes invites her mother to concentrate on breathing quietly with her while they are driving to see her father in the nursing home. And one day she did some chanting at her father's bedside, holding his hand. "He has a grip like a vise," she says. "I could feel it soften."

She's seen other caregivers who didn't make self-care a priority, and they suffered. Of one person in particular, she says, "She let her life disappear. She gained weight, and her blood pressure went up. My dad wouldn't want that for me. He would say, 'Your quality of life matters.' It's like knowing when to take Child's Pose."

What's more, taking care of yourself allows space for compassion to arise, says psychotherapist Stephen Cope, who's the director of research at the Kripalu Institute for Extraordinary Living and the author of The Wisdom of Yoga. The person you're caring for needs that compassion—as do you—but it can't be forced. And it's not likely to flow through you when you're feeling depleted. Cope's father suffered from Alzheimer's for five years before he died. "There's a teaching that compassion naturally arises when the open heart comes close to suffering," says Cope. That didn't always happen during his father's illness, but he cherishes the times when it did. "There would be times when I would go into the nursing home and I would stroke his head, and I was just right there," he says. "I would have this wave of love. But if I wanted it to happen, it wouldn't. I learned to savor those moments of authentic compassion; they carried me through a lot of moments when it wasn't there."

The Essence of Care

Those moments can become a touchstone, reminding us of why we are providing care in the first place. One day not long ago, I was driving down a sunny street in Kitty's town, on my way to see her. About a quarter mile ahead of me, a thin, white-haired woman was pushing a shopping cart in the crosswalk. The crosswalk sloped downward, and as I drew nearer I could see that the woman, bent nearly double, was struggling to keep the cart from getting away from her.

I had an immediate flash of "Oh, no, the poor thing—somebody needs to help her." Then I got closer and realized that the person was Kitty. I pulled the car over, went to her, and helped her push the cart onto the sidewalk. She was gasping for breath, but she managed to say, "Oh, I'm so glad to see you." A wave of feelings washed over me: sadness at how much she had declined and how vulnerable she seemed out in the world, relief that she hadn't gotten hurt.

More than anything, though, I felt grateful—that at that moment, seeing her at a distance, I'd been able to see her fresh, as just a person in need of help, a person I was glad to help. All the other feelings I'd attached to the situation fell away; what was left was the heart of the matter.

Since that day Kitty's situation hasn't gotten any easier. She is growing frailer and more confused, her money is nearly gone, and she will soon need to move into a nursing home. In the months and years ahead, it's likely she will require more help from me, not less. But since that day, I have been finding ways to renew myself for the work that needs to be done.

When I had to go look at several nursing homes one morning, I made sure that I took my dog to the beach in the afternoon—letting his exuberant energy and the freshness of the ocean fill my well again. I'm taking up offers from some of Kitty's friends to drive her to doctors' appointments. I'm reminding myself that this work is scary and hard, and that I shouldn't feel guilty for sometimes wanting to turn away from it.

As for Priscilla Fitzpatrick, she has emerged from the crucible of the past two years with a fresh plan for herself. What she's been through has given her the courage, she says, to create a life that's more meaningful to her. "I find myself standing amongst the rubble, wanting to do something extraordinary," she says. "I'm lumpy, I'm scarred, and I'm middle-aged. But I have strength and a whole new perspective." She's decided to pursue a longtime dream of becoming a yoga teacher and has begun a teacher-training program at Yoga Source in Richmond.

As she spends one weekend each month steeping herself in asana as well as yoga philosophy, she's discovering deeper in-sights into her role as caregiver. As her father continues to slip away, she says that what she wants most of all is to be at peace with the situation. "You have to find a way to be as comfortable as you can with it," she says. "It's like a yoga pose. There is not one right way. You're doing the best you can—that is your right way."

5 Ways to Make Caregiving Your Practice:

If you can approach caregiving in the same spirit as you do your yoga practice, you can deepen the experience and make it easier on yourself. Here are some ideas from yoga teachers—and experienced caregivers—about how to do this.

1. Let Your Body Teach You

You can get emotions like resentment to loosen their grip by investigating how they feel in your body, says Stephen Cope of Kripalu. "Ask, 'Am I experiencing this as a tight feeling in my chest? As a lump in my throat?' That starts to break up that mind-state." By observing the emotions held in your body during yoga, you'll find it easier to recognize their physical signs as they arise during your day.

2. Work to Your Edge

Sometimes the person you're caring for needs so much that you lose your sense of boundaries and feel that there's no end to what you must do as a caregiver. It can help, Phillip Moffitt says, to repeat to yourself, "I am doing the best I can—within my abilities—to care for this person." Just as you learn not to push past your edge in yoga, in caregiving, too, you have to set limits so you don't deplete or injure yourself.

3. Seek Spaciousness

Asana practice provides constant reminders that within even the most difficult pose, you can rest in a place of steadiness and comfort. Can you find that same place when taking care of a difficult chore for your loved one? When you have to call the HMO, say, and feel yourself tense up, take three slow, deep breaths before you pick up the phone. Try to approach the call with a sense of curiosity. This time things might be different—and at the very least, you'll feel better if you don't come into the situation irritated.

4. Know When to Rest

"Usually, the most difficult emotional moments are tied up with physical fatigue," says Nischala Devi. Learn to recognize when you're tired—maybe your first sign of fatigue is crankiness, for instance, rather than feeling worn out—and take minibreaks when you need to. You may need to give up some of your other regular activities during especially demanding periods as a caregiver, but don't cut out sleep or yoga practice. If you have time for nothing else, at least spend 15 minutes each day in Viparita Karani (Legs-up-the-Wall Pose).

5. Practice Gratitude

It may not seem like it when you're trying to get a slow-moving elder out the door for a doctor's appointment or negotiating a Social Security phone system, but, as a caregiver, you have a lot to be grateful for. At the end of each day, sit quietly for a few minutes. Let images of your interactions with your loved one play through your mind. Reflect on the things for which you're grateful: the spark of spirit that still comes through in the person's smile; the squeeze of a hand that lets you know you're appreciated; seeing the person in comfortable surroundings that you helped to arrange; your own health and ability to help someone who needs you.


March 2008

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