Most caregivers willingly and lovingly take on the duties that are required of them, either suddenly or over the long term. They give their all to ensure that their husbands, their parents, their children or other loved ones go through critical or chronic illness, even death, with as much dignity, compassion, and independence as possible.
For many caregivers, devoting oneself so completely can become life transforming. Caregivers often want to share the wisdom or experience with others who follow. The end of caregiving marks a stage in life, both an ending and a beginning. Moving on involves using hard-won lessons in new ways: re-establishing priorities, coping with grief more softly, and refocusing on what truly matters in one's own life rather than chasing after society's dreams and expectations.
One of the hardest lessons caregivers learn is letting go; yet in each release, healing is possible. "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, producing 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, to be forgiven, by taking even one step back. This distance, however small, allows us to see our roles - our gifts and our problems - with more realistic insight and nurturing.
"While I was a caregiver," says Myrna, a single mother who lost her young daughter to leukemia, "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
Compassion compels many former caregivers to give of themselves in new ways, small and large. When they are ready, caregivers often become hospice volunteers, visit residents in convalescent facilities, advocate for more funding for community resources, and join on-line chats to help relieve suffering and confusion. They volunteer in church programs for elders or help families with special needs children; they teach classes on caregiving; they organize brown-bag lunches at work or push employers to institute caregiver benefits. They create web sites, develop newsletters, join local and national health organizations, and lobby the media to cover caregiving issues.
Using what you have learned often blossoms into a desire to help others. Timid and isolated during caregiving, today many caregivers have risen above their hardships and become voices for others who are still in the midst of great challenges. They are messengers of caring, giving support where they can and creating new ways of sharing expertise.
For Tom, the frustration and anger over the problems his parents had with Medicare and health-care 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 to an epiphany: she developed a therapeutic process for chronically ill patients and their families to help them overcome the psychological problems often associated with illness and caregiving. In addition, she established a foundation in her daughter's memory and authored two books on the challenges of long-term illness.
Becoming a Mentor
By learning from their own experience and creating programs to help others, in these and many other ways, former caregivers become mentors to those just beginning or even well on their way along the caregiving road. They are able to look back on what they'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 they are different, tested by the fires and having survived great odds.
When you become a mentor to others, you continue to build a group of people who care about others and who are committed to bringing awareness to long-term care. You continue to help families who don't know as much as you do. Most of all, you continue to reinforce the best of what humankind can offer -compassion, connection, and community. Those who have heeded the call to care for ill or disabled loved ones are in the best position to guide others in this life passage they are the ones who have opened their hearts to suffering, and measured up to seemingly impossible demands. They know the way through the emotional labyrinth; they are the best guides, because they have survived beyond imagining. Through courage and perseverance, through untold acts of love despite great obstacles, family caregivers are at the forefront of a new kind of volunteerism and advocacy that cannot help but make this country, this world, a kinder place to live. This is no small tribute to our loved ones who have died.
This series of bereavement articles is in memory of Steven Mintz