Confessions of a Sometimes Caregiver

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?

On the long drive to Kansas, I have too much time to dwell on the possible outcomes of Mom’s surgery. She’s basically strong, but she is 86. Will she come out of the anesthesia? Will her high blood pressure cause a stroke? Will she have a heart attack? Or maybe, just maybe, will she be fine? I remind myself that Mom has weathered dozens of health crises. Whatever happens, we’ll find a way to deal with it. But in the background, in spite of my “Whatever will be, will be” line, is the whispered prayer, over and over: “Please let her be okay, please let her be okay ...”

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.

I arrive at my mother’s home on Saturday night, and we have all day Sunday to catch up, pack her bag, and talk about her hopes and fears. Early Monday morning, Mom checks into the hospital, and we spend some time in her room before the orderlies come to wheel her to the OR. I think a lot of “last time” thoughts: last time to tell her I love her, last time to hold her hand, last time to hear that she loves me ... I’m painfully aware of the possibilities. After the surgery begins, my brother and I sit together in the waiting room making small talk and looking up every time somebody walks by. Finally, several hours later, the surgeon comes to the room and tells us that Mom is fine, and my brother and I breathe simultaneous sighs of relief. (Whew. This is not the “last time.” Thank you.)

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?

My brother visits Mom often while I’m there, and he sternly advises her, “Mom, you’re going to have to give up your gardening now and take it easy.” I know he means well and only wants to hang on to her as long as he can; but after he leaves, I counter with, “Mom, please, keep gardening and walking and doing all of the things that make you happy. Don’t give up any part of your life until you have to.” We talk about the benefits of staying active and independent, and Mom agrees that she wants to go out kicking. (I like to imagine that when her time comes, she’ll keel over into a flowerbed with a trowel in one hand and a fistful of weeds in the other; but I know her passing isn’t likely to be that easy.)

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.