“She said ‘they were never there for me when I needed them because they were always fighting with each other, and now I’m supposed to take care of them? ” recalled Roberta Cole, co-author of “Caregiving from the Heart: Tales of Inspiration.”
The woman described is one of the almost 100 caregivers across the United States Cole interviewed for the book. She heard time and time again stories of people who had strained relationships with their elderly parents, but were forced to pick up the around-the-clock caregiving.
The woman told Cole: “ I’m resigned to doing this because when they’re not around, I’ll feel guilty. It’s just sad to see they never are going to stop hating each other.”
Cole recounted how another man told the story of his estranged relationship with his father. He is gay, and his father rejected him when he was a young adult. Now, years later, his father’s health was failing and he was the only one who showed up at his dad’s bedside to care.
“He came back to care for his father, because he felt it was his last hope to melt the ice,” said Cole, a New York City writer and university teacher who took care of her own mother during her last 10 years. “He was hoping that finally he could find a way for his dad to identify with him and to share a bond they never had.”
These stories, and dozens of others hint at the emotional and spiritual land mines a growing number of people face as they suddenly and unexpectedly are thrown into the role of caregiver.
"Even if you had the best parent in the world, every caregiver is at some point reluctant or at least ambivalent, making the difficulty of the situation even greater,“ said Cole.
Taking on the role of caregiver can be especially tough for adult children who may have to navigate caring for an elderly parent who wasn’t that great at parenting. Or, with the growing divorce rate and evolving scope of families, many ex-spouses are finding themselves thrust into the role of caregiver for their children’s father or mother–the person they divorced. Also prevalent are those people who are forced to take on the role of caregiver in non-loving and often abusive relationships.
Certainly illness becomes a spiritual teacher in the practices of forgiveness, prayer, and letting go, according to Amy Baker, a self-proclaimed “reluctant caregiver,” who chronicles her perseverance and hope as she coped with the decline and death of her parents in her book, "Slow Dancing at Death's Door: Helping Your Parents Through the Last Stages of Life." The book details Baker's own strained relationship with her parents and how she reconnected with both of them before their deaths.
“Dealing with the emotional and spiritual issues becomes paramount,” said Baker, a Fort Worth, Texas, mom of two teenagers. “The raw emotions just come pouring out. What we don’t realize is that all of these unresolved relationships are simmering somewhere ready to surface. The reality is, we all will become sick and die one day, and our loved ones will too. It’s a truth we can no longer ignore.”
"The luckiest ones are able to do that with their parents, but that's rare,” said Baker. “Most of the time, you’re going to face some pretty heavy spiritual and emotional baggage through the experience of caregiving.”
Even when we’ve experienced a change of heart in caregiving an elderly relative or loved one where the loving was not so visible, the reluctant caregiver syndrome spills over to the sibling front, where family members are stuck repeating childhood conflicts and having those conflicts turn into a war on how to best care for mom and dad, according to Kevin O’Connor, a professional speaker, consultant, and pastoral counselor educator at Loyola University in Chicago. (See tips below)
What’s more, caregivers of parents, ex-spouses, or relatives who haven't been loving or caring can feel especially alone and isolated, said Lori Ovitz, author of “Facing the Mirror With Cancer,” (Belle Press). Through her non-profit organization, www.facingthemirror.org, this former Hollywood and TV makeup artist visits patients – adults, teens and children – at the University of Chicago Hospitals and across the country, using makeup to make a difference in how cancer patients, and their caregivers, look and feel. (See tips below)
Frequently, Ovitz deals with young children whose parents are “overwhelmed by what has happened to their child and just can’t deal with it.”
“They do their best to be the caregiver, but the role is too overwhelming,” said Ovitz. “There was one little baby boy where everyone decided it was just better for him to stay in the hospital and be cared for than to go home. It’s heartbreaking.”
For all caregivers–unexpected, reluctant, or no matter what the situation, caregiving is a role that is learned along the way.
"We learn that caregivers come in many different forms, that there is no right way to care and that if we can take care as well as give it and make peace with the experiences along the way, it can be a transformative journey," said Cole.