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November 2007

Hardship into Hope:
The Rewards of Caregiving

By Connie Goldman

Connie Goldman is an award-winning independent radio producer, author, and public speaker formerly on staff at National Public Radio in Washington, D.C. She has written five books, including The Gifts of Caregiving: Stories of Hardship, Hope and Healing.

Almost 15 years ago I came across the first book I had ever seen on caregiving. It was entitled Helping Yourself Help Others, written by former first lady Rosalynn Carter. There were forty words in that book that I've since quoted hundreds of times.

"There are only four kinds of people in this world:
Those who have been caregivers, those who currently
are caregivers, those who will be caregivers, and those
who will need caregivers. That pretty much covers
all of us."

Those words woke me up to a reality about caregiving that has greatly influenced my thinking and the work I do. I'm an independent public radio producer, writer and speaker. For over twenty-five years my sole focus has been the concerns and challenges related to aging. Millions of middle-aged children have taken on the responsibility of caregiver for one or both of their parents. And yes, I've been a caregiver in the past as well for both my mom and dad. In our fast growing population of elders, spouses in their 70's, 80's and 90's are becoming caregivers for each other. That describes my current responsibility. I'm 76 and the man I share my life with is almost 80. Because the alternatives available aren't acceptable to us, we take on the commitment of serving as a caregiver for those we care about and love.

Many years ago I read ten words that shaped the direction of my career. The poet Muriel Rukeyser wrote, "The world isn't made of atoms, it's made of stories." I believe we learn about ourselves from hearing and reading the stories of others. We can gain insights and wisdom from people we don't personally know and may never meet. A story can touch a heart, bring a smile, cause a tear or get a person to reflect, compare or face a challenge or crisis in a different way. We can learn about ourselves, change an attitude, reverse a self-destructive pattern or get inspiration from another's story or experience.

In my work, I've collected hundreds of personal stories. I've interviewed caregivers of all ages. Their supportive and inspirational words are in my current book, The Gifts of Caregiving—Stories of Hardship, Hope and Healing. They've honestly shared a great deal about the stress, loneliness, boredom, drudgery, confusion, irritation, anger and exhaustion that often come with the commitment of being a caregiver. Daughters have told me about their caregiving experience providing the opportunity for healing past misunderstanding and tension with their mothers, others have talked of eventually realizing that doing the laundry, the grocery shopping, and changing the bed linen daily can be exhausting and can be done by someone else but sharing time with their mother, father, or grandparent to talk and just be together were the real rewards of caregiving. There are the millions of women who juggle caring for children, serving the needs of an ailing parent or spouse while working part-time or even full time and also continuing to manage a household.

In the hope I can offer support, comfort, insight, and inspiration to women of all ages and in all caregiving circumstances, I'm going to share pieces of real life stories that I've collected over the years.

Lois S. was the only one of the siblings that regularly planned three plane trips a month to manage the care of her widowed mother when she was diagnosed with cancer. Here's some of her story in her words.

"She was sick, living alone in Florida, and many of her friends had either died or were moving away. The stress and the constant travel exhausted me. One day my husband and I began having conversations about the possibility of my mother moving closer to us.

I have always had a very difficult relationship my mother. I could barely stand to be with her even one or two nights, and here I was thinking about bringing her to live close to us. I had spent a lifetime wanting a better relationship with my mother, but I had no clue how to fix it. I was hoping that this could be a chance to know this woman who I had, for so much of my life, absolutely resented and certainly didn't understand. That, in fact, is exactly what happened.

I began to see another side of my mother. She showed me what it meant to truly live in the face of death. It was a brave display of humor and courage. I got to see resilience that I never knew my mother possessed. Often we would just sit together; I learned about silence, about not needing to be doing or saying something all the time. We never talked about our relationship in the past. We both just let it grow and change, and we both sensed a mutual acceptance emerging – and love. The whole experience was like a gift. It's ironic that we learn more about life by learning about death, but I think that is true – it's the real learning. For me, nothing will ever take that away."

When actor Christopher Reeve was thrown from his horse and suffered a paralyzing spinal cord injury, his wife Dana became his primary caregiver. Here is a portion of the conversation we had about caregiving.

"There was incredible energy that came up for me. It was all about problem solving and getting things done. It took almost manic energy but I kept thinking, I can do it, I can do it, I can do it. Then I learned that it was going to be a long distance job, not a sprint, and I better settle into it. Now I understand that the caregiver needs nurturing as well as the loved one who needs care. Caregivers need to give themselves permission to do something every day that's self-indulgent, relaxing, and completely removed from their caregiver responsibilities. That's how we sustain ourselves for the long haul. You've probably heard this truth often but I'll repeat it again. You have to take care of yourself so you can take care of others."

I'll share one more story told by the caregiver for a father who, at his insistence, lived alone in the large two story family home. His daughter and family lived in the same city.

"For months I was involved in doing. I would get done working, go to my dad's house, make his dinner, change his bed, do the laundry, give him his medications, clean the house, and get his meals ready for the next day. I'd do that every night. My dad kept asking me to sit down and talk with him but I would always tell him that I just had too much to do.

One day I realized that I was trying to fix everything. I don't know how or when it happened, but I came to accept that my dad wasn't going to get well, that I couldn't fix him. I had touched on the wisdom to know that all I could really do was make him comfortable, and then I was ready to learn another lesson.

Being busy, filling every minute with 'doing' neglected a part of what people need in their lives. I had heard the words for years – people talking about living in the moment—but I didn't understand; I hadn't lived it. I suddenly became aware that this was an opportunity that would never come again. Anyone could do the household stuff, but no one could be with my dad like I could and there was no person in the world who could be with me like he could.

And so things changed. I'd come over to the house and just sit with him. We'd often go out to lunch and spend time talking. As we talked I felt I was touching my roots in a way I never had before. These were our best times together. Changing the priorities in my life gave me the chance to learn that my dad was really special. Looking back, the illness I had damned for so long had in truth, offered me a new way to be with my dad. I hope I never forget it. As I look back on it now those were the best times of my life. It was a blessing for me to be my dad's caregiver. It was an absolute gift."

Serving as a family caregiver can be a time of learning and personal growth. Healing can come from looking beyond the stress and grief of a situation. We can learn from the stories of others. Sometime during our lifetime, whether we're the caregiver or the recipient of care, there will most probably be an opportunity to explore the possibilities of transforming hardship into hope.

We never know where wisdom and guidance for a caregiver might come from. I leave you with some profound wisdom that I discovered on the pages of a children's book, Crow and Weasel, by Barry Lopez.

"If stories come to you, care for them. And learn
to give them away where they are needed. Sometimes
a person needs a story more than food to stay alive."

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Content last updated November 1, 2007.

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