Ever since I've been a caregiver, I've been waiting for The Call. If you're caring for a loved one, you know what I mean — the telephone rings, and you learn that your parent has taken a turn for the worse and you must rush to his side. In the past 12 years I've taken care of my father, then my mother and now my 93-year-old mother-in-law. The Call keeps coming, and I've been on edge the whole time, waiting.
Last August my husband and I were reluctant to take our annual family vacation. Would something happen? But we went, knowing that time with our adult children, who live all around the country, was also important.
We had just entered the rental house when the phone rang. My mother-in-law had been admitted to a hospital many hours away. My brother-in-law gave us bedside reports, and she was released the next day.
On the last day of vacation, the phone rang again. My mother had had a massive stroke. I traveled for six hours to her and stayed in the hospital with her for six days until she died.
Caregiving brings about a swirl of feelings: sadness, frustration, anger, anxiety, guilt, resentment, confusion, isolation, loss, fear, grief, impatience and stress. I have been overwhelmed, drained by sibling tension and torn between my own family, work, personal time and parental needs.
I've also experienced devotion, tenderness, intimacy, gratitude, patience and purpose in my role. In fact, a recent study from the Sloan Center on Aging & Work at Boston College found that older Americans who feel they are making a difference in caregiving and are highly engaged in what they're doing feel happier and more content. I understand that, as well.
But from my on-the-job training, professional reporting and research, including writing a weekly blog for AARP on the topic, I believe most caregivers confront three distinct and difficult experiences. With help from experts, I've also learned ways to manage them.
Caregivers frequently grieve the loss of the person they once knew, even though their loved one is still alive. Until her first stroke, in 2008, my mother, a former university English teacher, read a book a day, without glasses, and was in three book clubs. Post-stroke, she could no longer see well enough to read and couldn't process Books on Tape. Instead of dashing to a play, a lecture or a party, she stayed home, unable to walk unaided or get up from a chair by herself. She was a different person.
"When someone dies, it is an overwhelming and horrible experience, but it is the end of something," says Suzanne Mintz, cofounder of the National Family Caregivers Association and author of A Family Caregiver Speaks Up: It Doesn't Have to Be This Hard. "But with a caregiver, the grief is perpetual; it goes on and on and on." Mintz has watched her husband, diagnosed with multiple sclerosis in 1974, lose his independence. "You grieve because you've lost the life you had, and you know it won't be coming back. Both of you have the diagnosis — the person with the condition and the family caregiver," says Mintz.
One way to combat grief is to forge a way to relate to the "new" person. Chuck Niggley's wife was diagnosed with Parkinson's disease 27 years ago. "Do I ever think about what if my wife weren't ill? Sure," says the Beaverton, Ore., 73-year-old. "But I don't spend time dwelling on it. I've given up going to a three-hour movie or a baseball game with her, but we've substituted things we can do together, like attending our grandchildren's events and going to music programs."
The arts, in fact, give caregivers and their charges a powerful way to connect. Interactive creative programs — such as songwriting, storytelling, dancing, playing instruments and painting — provide ways for caregivers and care recipients to relinquish their usual roles and enjoy a fun and stimulating sensory experience together.
New York's Museum of Modern Art opens its doors to those with dementia and their caregivers each month. An art educator leads a discussion about master artists — van Gogh, Picasso, Degas — while the group views their works. This exercise taps into little-used senses and memories and ignites lively conversation, often making it impossible to tell who's taking care of whom.
My mother had always loved poetry, so I would bring Robert Louis Stevenson's A Child's Garden of Verses, a collection of the same poems she had once read to me and I had read to my children, when I visited. She'd smile as we finished the lines together, and I felt close to the mother I remembered while relating to the person she had become.