“What do I do with everything I’ve learned about caregiving?”
Most caregivers willingly and lovingly take on the duties that are required of them. We give our all to ensure that their husbands, wives, parents, children or other loved ones manage their disability, illness, even death, with as much dignity, compassion, and independence as possible. For many, devoting ourselves so completely can become life transforming.
One of the hardest lessons caregivers learn is letting go. It starts with letting go of our previous dreams and expectations. But, at the end, “Letting go means allowing the one who has died to leave and continue on her journey,” writes Victoria Frigo in You Can Help Someone Who’s Grieving. To achieve healing, the grieving person will need to ‘let go’ again and again in many different ways. Be aware that these last good-byes are some of the hardest things a person will ever do.”
In this separation, it is possible to see the caregiving experience from a different perspective with a greater sense of peace and a vision of the greater whole in which we live. The pain, anger, guilt, resentment and fear that we may have experienced while in the depths of caring for our loved ones is given a chance to dissipate. This distance, however small, allows us to see our roles—our gifts and shortcomings—with more clarity and compassion.
Myrna is a single mother who lost her young daughter to leukemia. “While I was a caregiver, all I could see was the two of us. Now that she has been gone two years, I can see that everyone suffers in some way, that we all go through experiences that make us more human. It was very healing to understand the connections that we have even in the worst of times. I am no longer alone in my grief, and know that I can move on and still have a meaningful life, even though Karen can never be replaced.”
Extending a Hand Back and Planning Ahead
The end of caregiving is both an ending and a beginning. Moving on involves using our hard-earned wisdom in new ways: reestablishing priorities, coping with grief more softly, and refocusing on what truly matters in life. Many caregivers chose to share their experience and knowledge with others who follow. We often become hospice volunteers, visit residents in convalescent facilities, or advocate for more funding for community resources for caregivers and their loved ones. We volunteer in church programs for elders or help families with special needs children; we teach classes on caregiving; we organize brown-bag lunches at work or push employers to institute caregiver benefits. We create web sites, develop newsletters, join local and national health organizations, and lobby the media to cover caregiving issues.
Timid and isolated during caregiving, many of us have risen above our hardships and become strong voices for others who are still struggling. We are messengers of caring, giving support where we can and creating new ways of sharing expertise.
Compassion in Action
For Tom, the frustration and anger over the problems his parents had with Medicare and healthcare providers spurred him to develop special software for families to demystify Medicare paperwork and help track providers and payments.
For Carol, seven years of long-distance caregiving for a father with Parkinson’s disease propelled her into the arena of congressional lobbying. She advocates for increased funding for research for Parkinson’s.
For Karen, caregiving for a deeply religious mother with Alzheimer’s inspired her to develop a program whereby ill loved ones can attend religious services with their caregivers despite incontinence, frailty or disability.
For Irene, a social worker, losing two children to a congenital heart problem led her to develop a therapeutic process to help chronically ill patients and their families. She also established a foundation in her daughter’s memory and authored two books on the challenges of long-term illness.
By learning from our own experience and helping others, we former caregivers become mentors to those who are just beginning down the path of caregiving. We are able to look back on what we’ve experienced, seeing the pain from a bit of distance and charting a new course. Life is no longer about the pain and frustration, but the memories and a need and desire to reconnect with others, to smile again and to recognize that we are different, tested by the fires and having survived great odds. We are in the best position to guide others, and in doing so we often find compassion, connection and community.