Twenty-five years ago, when my mother became ill and partially dependent, the word caregiver didn't exist. As nearly as I can determine, it wasn't in the dictionary until 1997. I didn't think of myself as a caregiver, but simply as a daughter who, when her mother required help, would figure out how to provide the care that was needed.
In my particular situation, my daughter and I became a caregiving team. She lived a short distance from her grandmother, while I lived and worked almost two thousand miles away. I made the major decisions, provided suggestions.
I remember wishing I knew someone else who was a caregiver so I could talk about it with them. In my circle of friends, I was the first middle-aged daughter to take care of an aging parent. My friends wanted to help, but my particular situation was out of the realm of their experience. I constantly juggled fear, frustration, irritation, indecision, and guilt that I wasn't doing enough for my mother and that I shouldn't be living on the other side of the country during her time of need.
Unresolved Issues Between My Mother & Myself
At the end of her life, the most difficult thing for me was the sadness I felt, not only because of the loss, but because some of the misunderstandings and unresolved issues between my mother and myself were never openly discussed or repaired. Perhaps if I had heard stories of mother-daughter reconciliations, I could have put some of my anxieties to rest long ago.
During the years that followed the death of my mother, I talked with friends and family members about my pain and sadness over the fact that there had been no healing of our relationship. Our life together included lies, anger, hurt, and disappointment. Over the years, neither of us found a way to face these things, let them go, or reach out to each other with love.
Difficult Relationships Healed Through Caregiving
In the two decades since her death, people have told me many stories of difficult mother-daughter relationships that healed through caregiving. I've read several, collected some for my radio programs and books, and talked with people who have their own caregiver stories to tell. Their stories have given me the gift of healing. Forgiveness, compassion, acceptance, and love grow through empathy for and understanding of the experiences of others.
Family caregivers often feel burdened, overwhelmed, and stressed. There's a good chance that a person who has taken on the responsibility of caring for another will experience feelings of depression, helplessness, and isolation. Yet, we are far from alone. Dana Reeve, wife of actor Christopher Reeve who suffered paralyzing spinal cord injuries, told me:
"One of the things that I've realized is that I'm part of a group called 'caregivers,' and there are millions of us. It's often something that we take on willingly because we love the person and because we feel it's our duty, and yet we don't see it as a job, necessarily, and it really is. Not that we wouldn't do it anyway."
Millions of us are currently providing care and assistance to someone who is ill, frail, or disabled, or we have done so in the past. Many times I've heard the figure quoted that only 5 percent of those requiring care are living in facilities that provide professional services. The other 95 percent live in their home or in the home of a relative. Their care has been taken on by family members or friends for whom caregiving isn't a paying job or a chosen career. An estimated twenty-five million adults have added a volunteer caregiving commitment to an already full life.
Taking On The Caregiver Role: Sometimes Unforeseen, Unplanned
We most often become caregivers through unforeseen and unplanned-for circumstances. A father falls suddenly ill, a mother becomes increasingly forgetful, a spouse is diagnosed with a terminal illness, a grandmother is too frail to care for herself, an elderly friend is without family or resources, a child is born with severe physical or mental limitations. With little or no warning, we become caregivers.
We take on the role of caregiver because the alternatives aren't acceptable to our families or ourselves. Often we don't know what we're getting into, but we make the leap anyway, take on the responsibility, and hope for the best. Our day often includes dealing with frustration, stress, irritation, exhaustion, confusion, and guilt. Yet, sadness and uncertainty are only part of the experience. Caregiving is also about knowing we've done our best and served someone we love.
Caregiving: Touching New Depths of Compassion and Gratitude
Through the caregiving experience we can expand our vision, touch new depths of compassion and gratitude, and reassess our priorities. A daughter, herself in her sixties, shared with me some thoughts as she reflected back on the time when she sat with her dying, semiconscious mother.
"Hard as it all had been taking charge of her personal care, seeing my own living patterns changed in almost every conceivable way, struggling with the guilt of never doing enough, still in some way I can't really explain there's been some immeasurable value for me in just being there for her. Through this experience of caregiving, I think I've really grown and learned a lot about myself."
Many people I spoke with shared similar thoughts about a deepening personal awareness and growing sensitivity. Beth Witrogen McLeod, sitting in her sunny living room in Northern California, told me:
"I think the ultimate learning in the giving of ourselves is that we find out who we are at heart. To give beyond any conceivable level than we ever thought we were capable of, or wanted to be capable of, or were willing to be capable of, is such a stretch of the heart. Still, the opportunity to give to someone -- that is the most healing, the most glorious connection that we can have as a human. You can't help but see the world differently. It changes you profoundly and permanently. It's a constant lesson to find out who we truly are."
Beth wrote about her caregiving experience with her parents in her book, Caregiving: The Spiritual Journey of Love, Loss, and Renewal.
New Perspective: What Is Meaningful in Life
In our conversations, the caregivers often told me how their priorities had changed -- how they had gained new perspectives of what was meaningful in their lives and learned to slow down the pace of their days. Many spoke with a newfound sense of peace.
I recall visiting with Gordon Dickman in Seattle. I was working on a totally different project at the time, and our appointment had nothing to do with caregiving. Yet, halfway through our conversation, Gordon shared an anecdote about his father's death.
"This is a story about holding an angel that I didn't know was an angel," he began.
"My father wasn't a man of words. He never said, 'I love you,' or 'Son, you did a good job,' or sat down and shared heart-to-heart talks with me. So when he was in the last days of his life and comatose, and I was lying in bed with him holding him in my arms, I thought, 'Why am I holding you in my arms like this? Why am I doing things for you that you never did for me?' And I began to reflect, during that long day until he died, on all the things he had done for me.
"He'd driven miles when I was a child to take me to movies that I wanted to see. When I first started dating and couldn't drive a car, he'd driven into town, picked up the girl, taken us to the movies, gone somewhere and waited, come back and picked us up, and taken her home. And he never complained, never said no.
"He's the one who drove me to college, set my trunk out at the corner, and drove off and waited at the end of the block until I went inside. I realized that he'd been there for me all along.
"And so I could hold him and say, 'I'm not giving you anything you didn't give to me, old man. I'm paying you back.' And I held him until he died. I didn't let go and I didn't let anyone else get in the way of that, either. I thought, 'I'm not letting go of this angel until he's gone."'
The Rewards: Every Ending Offers A New Beginning
Is it trite to repeat that old phrase, 'Every ending offers a new beginning'?" I don't think so. Those I've spoken with often used the expression "the rewards of caregiving" to describe their experiences. Some have actually called their personal growth a transformation; others make reference to the gifts of caregiving.
Often these gifts aren't perceived or understood until after the immediate pressures and concerns of active caregiving are past. This learning has no particular time frame. Yet, sometime during our lifetime, whether we're the caregiver or the recipient of care, there will be an opportunity to explore the possibilities of transforming hardship into hope, and to discover the incredible rewards and unexpected gifts of caregiving.
Caregiving can be a gift in disguise -- an experience that moves you toward a more meaningful connection with yourself and with others and a chance to nurture your spirit and transform your life.
Reprinted with permission of the publisher,
Fairview Press. ©2002. www.fairviewpress.com
The Gifts Of Caregiving: Stories of Hardship, Hope, and Healing
by Connie Goldman.
This book began as a public radio program entitled "Hardship into Hope: The Rewards of Caregiving." The program consisted of a series of interviews with family caregivers---some well known, some not so well-known, but all with inspiring stories to share. A copy of this program, recorded on a CD, has been attached to the inside back cover of this book. After that program aired nationally, many listeners urged producer Connie Goldman to write a book based on the radio program. Connie then began to collect additional conversations that put into words the special gifts of caregiving. This book is the result of her labor: an informative and inspirational anthology showing how the hardship of caregiving can be transformed into an experience of hope and healing.
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About the Author
Connie Goldman is an award-winning independent public radio producer, author, and public speaker, formerly on the staff of National Public Radio. She is the author of four books and is the recipient of the 2001 Senior Award from the American Society on Aging.