Your Care: Your Story

(Editor's Note: In honor of family caregivers, Caregiving.com featured a special section on its site throughout the week of Thanksgiving: Five Days, Five Caregiving Stories. The five profiled family caregivers, who participated in online support groups sponsored by Caregiving.com, discuss their worries, their struggles, their battles—and their ability to overcome.)

Joan is of the sandwich generation. But, her sandwich has a little mayo on it—a little white hair.

Two years ago, Joan and her husband welcomed three teen-aged grandchildren into their home. Unable to live with their parents, the children moved from out-of-state to Joan’s home in Florida just prior to the start of a new school year. In the blink of an eye, the 63-year-old grandmother found herself registering three children for school—something she hadn’t done in some thirty years. Already caring for her mother, Joan’s caregiving school enrollment swelled to four.

“My faith in God and in my husband help and they really helped in the very beginning,” Joan says. “All I could think was: The kids need me now. And, my mom needs my help now.” So, she did. She does.

Two years and one high school graduation later, Joan and her family have survived better than their household appliances; they’ve replaced a backed-up septic tank (from teen-agers who enjoy those one-hour showers), a washer machine, a TV--and have added a punching bag to the garage. “The kids asked for one,” Joan says. “They use it to vent and get their anger out. I’ve used it a few times myself,” she adds.

Her 88-year-old mother who lives nearby in a retirement center continues to meet her own personal goal of remaining in her apartment. Joan helps by ensuring her mother has her medications and groceries, transports her to doctor appointments, and manages her finances. Joan also calls her mother every morning, just to makes sure that she’s up and okay.

Joan and her 64-year-old husband continue to work as well as raise their grandchildren and care for her mom. Her husband works full-time, hoping to retire when the last grandchild leaves home. Joan is self-employed, working a flexible schedule in order to be available for the children. Joan and her husband work as a tag team, backing each other up with decisions about restrictions (disciplinary action such as loss of phone or computer usage), taking breaks, and taking weekend trips away. This fall, Joan took a weekend trip with a friend to St. Augustine, Fla.; the next weekend, her husband enjoyed a weekend away at a music fest.

The adjustment for the children and for their grandparents has been rocky. The paperwork, required by the state, Joan faced to enroll her grandchildren in school, to apply for their benefits, and to provide for their well-being was overwhelming. “You don’t come out of those (state and local) offices with any dignity,” Joan says.

To further Joan’s frustration, state agencies have high turn-over rates with case workers. In the first year, the family had four different caseworkers. Luckily, they’ve had one case worker during this past year; that case worker was able to get counseling for the kids this past summer—an immense help. “I’m very proud of the kids,” Joan says. “They all have good grades. And, our grandson plays on his school’s football team.” Her middle grandchild has a part-time job and attends high school; the youngest, her grandson, mows lawns to earn extra money. Her oldest granddaughter, the high school graduate, lives nearby, working and attending college courses.

Holidays, in particular, are difficult. “The first Christmas, Mother’s Day and birthdays were really tough,” she says. “They’re tough no matter what you do.” Joan and her husband have faced tough times before throughout their 45-year marriage, but “we’re feeling it more now because of our own physical aches and pains”, Joan explains.

The challenge of being available to three children and her mother can be exhausting. “I value any free time I can get,” she says. She makes time to take art classes and journals whenever she can. She created her own sanctuary in her Florida backyard, complete with its own swing and flower garden. “I’ll sit in the swing and just write,” she says.

Keeping space for herself is critical to her survival, as is extra support from family and friends. She attends a monthly support group for family caregivers of aging relatives, searches the Internet to meet other grandparents raising grandchildren, and enjoys a new hobby: Television. “I just don’t have the energy that I had when our children were growing up,” she says. “I’m tired at the end of the day. I watch TV now, which I didn’t do before. But, it’s just nice to sit.”

What does she like to watch on TV? “Antiques Roadshow,” she says. “I like antiques. I’m becoming one myself.”

"I think caregivers know gratitiude better than anyone, because we must catch and embrace the good moments as they come. There are so many that are difficult. I am grateful when my mother is able to share a time with me, and we can laugh together, like we used to, or when she is having a good day or a good part of the day, or when we tell each other we love each other other. I am grateful that she can still laugh and smile at things, that she still can share with me some wonderful memories, that I have had so many years of her company and love. I am grateful for all the beautiful things of life, the simple things, the moments."

--Lynn, who cares for her mother

Your Opinion: What makes a successful family caregiver?

We asked Josefina Carbonell, Assistant Secretary for Aging, U.S. Department of Health and Human Services, What are the characteristics or traits of a successful family caregiver?

Her thoughts:

"Successful caregivers:

Get as much information as they can about their loved ones' illnesses and identify services available in the community. Information helps them to make informed decisions. Don't wait until there is a crisis to begin to look.
Remember to get immunized and obtain routine preventive screenings.
Take some time each day to do something for themselves.
Don't try to do it all by themselves. Don't be afraid to ask for help from relatives, friends or persons from your faith community. A physician recently informed me that he wrote prescriptions for respite care for caregivers in his practice that they could give to a relative. He says it works!
Don't skip meals and make sure that their diet is balanced.
Set aside some time each day for physical activity.
Understand their medications and take them properly.
See their physicians if they suspect that they are depressed or anxious.

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