If ever there was an indication that this issue is not a future reality -- that the future is now -- it is the finding from Families and Work Institute's Elder Care Study that 42% of employed Americans have provided elder care in the past five years. That’s almost one in two of us -- nearly 54.6 million employees. But ask people about their experiences caring for elderly relatives, and you’ll find it colors our own attitudes about aging.
It has been more than five years since my mother’s death. I have copies of one of the last photographs I ever took of her spread throughout our house. It is the photograph we used for her obituary. She is sitting in her favorite crewel chair, looking straight at me, and smiling.
I spent the last eight weeks of her life caring for her, as did my sister and my husband. It all began when a non-critical incident, a slight fall that occurred when she was getting up from her desk after balancing her checkbook, turned into a medical nightmare because she was given Morphine several times, despite our calls to the hospital telling them that it had almost killed her eight years before in the same hospital. And then they gave her more drugs, compounding her drug reaction. All of this happened before we could travel the 550 miles from our homes to hers the following day.
Mother was almost 98 years old at the time, but she had been quite healthy for someone her age, as that glorious photograph of her that I so cherish reveals.
We brought Mother back to her own home, where she most wanted to be. From then on, every day seemed like a battle. We had to fight to set up a good system of home-based care for her -- learning how to administer medical procedures, filling out complex forms for insurance, getting the right medical equipment delivered and finding people to help us who were “caregivers” in the true sense of that word.
We won those battles, but we lost the big one -- ultimately, Mother’s systems began to shut down despite her valiant will to live. When one has an experience like this, one can feel disheartened or embittered or one can try to use the experience to bring about change. In honor of the kind of person my mother always was, I have chosen the latter route.
First, we worked to bring changes in the hospital system where she had been cared for. Spearheaded by Mother’s beloved doctor, Kathleen Mimnagh, the hospital system now lists “adverse reactions” in addition to anaphylactic allergies on every patient’s computerized medical history; they have developed procedures to ensure that the emergency room and the admitting floors communicate about a patient’s drug reactions; they include treating patient’s families with respect as a “quality” measure the hospital is to be held accountable for; and they have made a commitment to reduce “unnecessary deaths.”
Second, I wanted to do something on a larger scale. As the president of a research organization that conducts ongoing studies of the U.S. workforce, I was in a remarkable position to create a study that shares the experiences of a nationally representative group of caregivers and asks them for their wishes to bring about change. So when people asked us about donations in Mother’s memory, we invited them to contribute to this study. From small donations of a couple of dollars to a large donation from IBM, we have created The Elder Care Study.
Perhaps surprisingly, men and women are equally likely to provide elder care, although there are many differences in the way this plays out in their lives: women are more likely (44%) than men (38%) to provide elder care on a regular basis rather than on an intermittent basis. In addition, women spend more time and provide more hands-on care than men. Women are more often stuck with the bathing, feeding, toileting and intimate daily care that can be so draining physically and emotionally. And despite many hours providing care, caregivers work just as many hours as other employees do. And elder care isn’t the only care they are providing -- 46% of women who are caregivers and 40% of the men also have children under the age of 18 at home.
When asked about their wishes for change, we find that many elder caregivers DREAD aging; they want to escape from aging as it exists today. They say:
I don't even want to think about it. I want to pass in my sleep of old age. It's an ugly time of life—the last few years of suffering.
I would rather die in a car wreck than put anyone through what I had to go through taking care of my mother.
Yet there are positives too. Despite the many challenges they faced, most family caregivers at some point after the elder’s death feel the experience has been positive -- with 60% saying that their relationship with their parent or relative improved. This is especially true if they have family support or caregiving support.
Although there are some inescapable difficulties that come with aging and illness, there is huge room for improvement. As our country grows older, we desperately need to use some of the more effective models of care for the elderly that already exist, and we need to develop and test new models.
The first thing to do is bring this conversation out into the open. Have you cared for a parent or relative suffering from dementia? What feelings about your own aging did it bring out in you? How did you cope? How did you pay for it? Manage it? Please share your ideas with us. Nothing would be a more fitting tribute to my mother than this.
PS: We're honored to release the Elder Care Study in conjunction with the Shriver Report: A Woman's Nation Takes on Alzheimer's.
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