My mother, an 86-year-old widow, lives alone in a small town in the farming country of central Kansas. Born and raised in the town, she returned there with my father after his retirement, leaving the big city in order to spend their "golden years" with her sisters, brothers, and childhood friends back home. Unfortunately it wasn't long after my parents' return that the siblings became ill and died; many of the old friends died as well. Mom took care of her family, one by one, through dementia, strokes, and cancer; and just when she thought she could take a break, my father was diagnosed with Alzheimer's disease and her caregiving resumed again. During those years, Mom had her own share of health problems that required the care of family, and that care always fell to me. Like mother, like daughter.
I moved from Kansas to Colorado back when my parents had plenty of family and relatively good health. But over the last 20 years, in addition to regular visits, I've probably made two dozen trips to Kansas to be with them during each health crisis. When my father was in the late stages of Alzheimer's, I frequently went home to relieve my mother and helped her move him to a nursing home a few months before his death.
My brother lives only an hour from my mother and he provides a lot of support—but of a limited kind. My sister also would be willing to help, though she freely admits she is not a nurturer. Having a young son with health problems makes it difficult for her to get away. It appears that I'm the ideal caregiver: female, nurturer, no kids.
My mother's most recent health problem is a condition that has caused her much discomfort and stress for more than a year. Her doctor has been reluctant to recommend surgery to correct the problem because of Mom's age and history of heart disease. Mom has tried her best to live with the condition, but finally she can't deal with it any longer and insists on the surgery, with the understanding that the choice could endanger her life. Soon after, Mom calls to tell me about the planned surgery. Though she doesn't ask me to come home, I know she's hoping I'll volunteer. After the call, I switch into "caregiver mode," and everything else in my life takes a back seat to Mom's urgent need and my concern for her. I quickly arrange for unpaid leave from work. It's easy to do, thanks to employers and co-workers who are sensitive to the issues of family caregivers, but still I feel guilty about leaving. I find myself justifying the need to go by explaining, "Mom's 86 and she has heart problems...," as if the surgery alone isn't important enough to require my leaving to be with her. I know my employers understand, so why do I feel the need to dramatize?
During the drive, I also have a talk with myself about taking care of me while I'm taking care of Mom. Usually, in these situations, I become Super Caregiver—that amazing and tireless woman who handles rude nurses, bodily fluids and insurance forms with equal aplomb. A lot gets done, but "little me" gets lost when that mission-driven woman takes over. This time, I'll try to keep a bit of time for myself and remember that I don't have to be the perfect caregiver. Perhaps there can be room for Adequately Competent Caregiver and me.
The next few days are a blur of long hours spent sitting by Mom's hospital bed, fluffing her pillows, giving her water, calling the nurses, straightening her blankets, entertaining her visitors, walking her and her IV pole and catheter bag up and down the halls, and making quick trips to her house for meals and sleep. Mom does well in spite of minor complications and sleepless, noisy-hospital nights. Each day she's a little more energetic, and each day I'm a little more tired. By Thursday, she's well enough to come home and I'm nearly exhausted. But I have only two more days to spend with her, and I want to enjoy the time and get as much done as possible before I go.
Once Mom comes home, my adjunct care becomes primary and hands-on. She needs help with bathing and toileting and things get a little messy, so I put on my "this doesn't bother me" face and clean up. I know she thinks I can handle anything (after all, I used to work on an ambulance), but inside I'm reeling a little. I'm glad she's not embarrassed in front of me, or maybe she's just putting on her "this doesn't embarrass me" face. If she can give up her modesty, I guess I can put aside my squeamishness.
now, we don't have the luxury of indulging in either.
Before I leave for Colorado, I make arrangements for home health care: someone to help Mom with bathing, housecleaning, grocery shopping and meals. Her nieces and nephews call to check on her, and I imagine I hear disapproval in their voices when I mention outside care. One offers to take Mom to her home and I am both touched and a little offended. Does she think I should do more to help her? Does she understand that I can't stay here indefinitely and that Mom couldn't—and wouldn't—come home with me to stay in Colorado?
By Sunday morning, when it's time for me to go, I feel reasonably comfortable that Mom will be all right on her own, with help from the health care agency, her good friends and neighbors, and my brother. Still, it's hard to leave. I always wonder if I'll see her again, and it saddens me to know how lonely she'll be after our non-stop time together. Nevertheless, I climb into my car and pull out of the driveway, and Mom smiles bravely and waves goodbye.
Driving away from her house, I start to cry—from tiredness, from relief, from knowing that there will be another crisis all too soon. Mom made it through this time, but next time—or some time after—she won't, and I'm already starting to grieve. I know that I can't cure her or hold on to her; I can only love her and be there when she needs my care. Sometimes, that doesn't seem like a lot, but of course it is—it's all we ever have—and I'm thankful that I've had the chance to love her and care for her once again.
Nine more hours of driving … better stop for a cup of coffee.
I'm a caregiver for a parent who has a different condition than the author's mother, but so many items in this article hit home and I'm grateful to see them in black and white. A role-reversal with a parent who has always cared for others but now needs help herself, feeling the need to explain or justify to others when you need time for caregiving, maintaining dignity while handling personal hygiene situations, outsiders who offer useless/hurtful suggestions or "help"... It makes me feel less alone to know that others sometimes feel the same way. This is one of the most heartfelt and best-written articles on caregiving that I've ever read. Bravo to the author for sharing her story.