CAREGIVING -- A FAMILY AFFAIR

These past weeks I’ve been sharing some stories from my book, The Gifts of Caregiving – Stories of Hardship, Hope and Healing. Here are two stories about caregiving as a family affair. When Barb’s Aunt Carol died she had been a nursing home diagnosed with Alzheimer’s for almost ten years. The day she died, Barb sat with her, held her hand, talked to her and sang familiar songs. Now she takes care of Uncle Bert, Aunt Carol’s husband is frail and now totally alone. For as long as Barb could remember her mother took care of everyone in the family who was ill.  When her mother died three years ago, Barb assumed the responsibility of the family primary caregiver.

“I knew that if she were still alive she’d be doing this for others in the family and now it was my responsibility to take over. We take care of each other in our family; it’s just how we function. Six of us cousins in the younger generation formed a web of support around both Aunt Carol and Uncle Bert. My brother took charge of the main care for him, his bills as well as some personal care  My caregiving experience with Aunt Carol has profoundly affected my sense of parenting and the importance of family connection.  I made sure that I often brought my children to visit Aunt Carol. I wanted them to see that we take care of each other and that the generations of family are connect in this way.

Caring for Aunt Carol and Uncle Bert has taught us what it really means to be a family. Uncle Bert tells other people, ‘No one has great nieces and nephews like I have.’ But I tell him, ‘Uncle Bert, in letting us care for you and Aunt Carol, you taught us that.’ My grandparents, my parents – they all did it for each other, so it only feels natural that we should be doing this, too. Being a caregiver has deepened the ways I think about love, family and commitment.  It hasn’t been a burden for me.  It’s been a deep, personal journey – a very special experience.”

Although I’ve spoken with some who have felt they should protect their children, both young and grown, from involvement in the responsibilities of a relative’s illness, my friend Pam, who took over the responsibility of care for her mother, treated it as a family challenge from the beginning. When her Mom’s care went into overload, the result of a family conference was that a nearby nursing home would provide the physical care and each member of the family would share the visits.

“I’m conscious of wanting to model something for my kids. I hope my children will hang in there with me when I’m old and in need of care.  Before this, my kids knew their grandma the way other kids know their grandmas. They visited her a couple times a year, she baked them cookies, and they didn’t particularly let her in their lives. They liked her fine because she was their grandma, but they didn’t have a very deep emotional attachment. So now they have a chance to really know her.

One Saturday night, for example, I was out with my husband, and my younger daughter was home with a friend. They were about to go out to a party when Grandma called.  She was clearly distressed and needed somebody.  My daughter went right over there with her friend.  In some ways, that seems like a very little thing, but in this culture for a teenager to give up her Saturday night when she was about to go to a party and respond first to her Grandmother’s needs, well, that’s something, I think.

It was an incredible night, because instead of spending ten minutes with Grandma, my daughter stayed over two hours. She ended up reading inspirational verse to her. The words probably meant very little to my daughter, but she figured out that this would be calming and meaningful to her grandmother.  I think it was an important lesson for my daughter. I’m learning, and my daughter is learning as well, something about being a human being. It was lesson in compassion and understanding. I think the ultimate learning in the giving of ourselves is that we find out who we truly are.”

My conversations with family caregivers have helped me understand that caregiving can be a gift in disguise – an experience that moves you toward a more meaningful connection with yourself and with others.