Four years ago, at 8 p.m. on Valentine’s Day, my mother died. A few hours earlier I had taken a brief break from my vigil in the hospice to wander through an excessively air-conditioned Florida mall. The kiosks were overflowing with heart-shaped Mylar balloons, stuffed bears, and chocolate roses. As I surveyed the depressingly cheerful Valentine’s paraphernalia, I thought: I really should bring her something.
It was a ridiculous thought, since my mother was in a coma and had no use for balloons or bears. Why did I feel obligated to do something more for Mom just then — as if the years my brothers and I had spent flying back and forth to be with her, the thousands of phone calls, the long hours spent at countless hospital bedsides had not adequately expressed our loyalty and affection?
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I’ve been revisiting this question lately, because a number of my middle-age patients have told me that taking care of their parents is a major source of stress. Baby boomers have parents who are living longer than ever. Plus, many of those boomers had children later in life than their parents did, so they may be juggling eldercare and childcare at the same time — all in an economy where their kids’ employment prospects and their own retirement plans feel uncertain.
The funny thing is, though, that when my patients describe the nature of the stress they feel in caring for their parents, they often don’t mention financial issues or even the daily pressure of fitting their parents’ doctors’ appointments, errands, and other needs into already jammed schedules. What they almost always mention is the emotion I felt that day in the mall: guilt.
Many of my patients experience a new or renewed closeness with their parents while helping to care for them. This was certainly the case with me and my mother. In the last years of her life, we spent more time together, and at a slower pace. Sometimes a visit consisted of hours spent in our bathrobes, talking over cups of coffee.
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But underlying this closeness was a feeling that my visits, however long or frequent, weren’t long or frequent enough. I said to a patient recently, when she told me how guilty she felt about not calling her mother more often, that she could keep her mother on speaker phone all day long, and still feel guilty. She agreed.
Some of this is survivor’s guilt. In the years when my mother became increasingly infirm, she would revel in my descriptions of office politics and kids’ sleepovers and exotic vacations. “What a full life you lead!” she would exclaim. She’d say she wished she could get in a time machine and go back to the 1960s, when she, too, was active and independent — and wearing Jackie Kennedy-style sheath dresses.
Though I know she didn’t mean them this way, I always heard Mom’s comments as an accusation, as if my being in the prime of life had nudged her from it prematurely.
Adult children caring for parents may find themselves thrust into the uncomfortable role of bad cop. Who wants to have to tell their parents that they’re not safe in their homes or behind the wheel? But who wants to risk parents falling or causing a car accident? Trying to balance an older person’s need for independence with his or her safety can leave an adult child feeling that nothing they do is right.
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Age, pain, and dementia sometimes make people irritable and demanding, which may cause those trying to help them feel unappreciated. This in turn, can cause guilt.
“How can I get mad at her?” said one patient to me about her mother, who has Alzheimer’s. “I must be a horrible person to get so frustrated with someone who can’t help how she acts.” This same woman developed headaches every time she saw her mother.
It can be especially uncomfortable when parents and children who haven’t been close are drawn together by the parents’ need for care. Several of my patients are now spending hours every week with parents and in-laws from whom they’d been distanced or even estranged. In a particularly awkward twist, one woman’s mother no longer remembers that she and her daughter were never close. The newly intimate relationship that the woman’s disability has necessitated seems natural to the mother — and is very painful for the daughter.
Perhaps we feel guilty because we can’t completely “fix” our elders. My mother told me as much once when, near the end of her life, she sounded sad and I asked what I could do to make her happier. “Nothing,” she answered, honestly. “You can’t bring me back my husband, my health, my youth. . .” Even our presence is not enough, sometimes, to salve the loneliness of age. One woman told me that she traveled four hours to visit an aunt who implored her, even as she sat in front of her holding her hands: “When are you going to visit me?”
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Maybe what we feel is not so much guilt, as vulnerability: Our parents’ frailty feels too much like a harbinger of our own. In middle age I look and sound so much like my mother that it wasn’t hard for me to imagine myself taking her place in that hospice bed —
Or does caring for our parents chafe because it’s out of the natural order of things? There’s an old proverb: “When a parent helps a child, both smile. When a child helps a parent, both weep.”
Four years after my mother’s death, the tears have dried and the guilt has evaporated. But I’d welcome them both back in a heartbeat if I could share one more cup of coffee with her.
Dr. Suzanne Koven is a primary care internist at Massachusetts General Hospital. Read her blog on Boston.com/Health.