AGING & CARING: The secret guilt of caregivers

BY PAULA SPENCER, CARING.COM SENIOR EDITOR

Many of us looking after an elder have heard the nagging whisper of guilt, like a pesky monkey parked on the shoulders who just won’t quit poking us: Feeling guilty when you lose your patience, feeling guilty for complaining about lack of sleep or lack of money, feeling guilty about not having enough time for the person or for the rest of your family.

There’s even happiness guilt – when caregivers feel bad about feeling good.

It’s a strange paradox that having positive feelings should be yet another source of self-flagellation, but there you have it. Take, for example, the caregiver I talked with recently who’d been agonizing over whether it was time to place her mother in a care facility. Her mother, an obese diabetic, had incontinence that was getting harder to manage, and there were increasing signs of advancing dementia. The daughter just couldn’t decide what to do. Then the mother needed a foot amputation related to her diabetes. She was discharged to a rehabilitation facility, and the transition made it clear to them both that an assisted living facility was a better, safer option than either’s home.

Providence had made the decision. The daughter was relieved, and yet simultaneously, pricked with guilt that she should feel relieved. “Somehow it seems like I let her down even though it worked out OK,” she says.

Other places where this kind of guilt dogs caregivers:

• Using respite care, so you can get a break.

• Leaving the person in someone else’s care for several days, so you can take a vacation with your family without him or her.

• Hiring regular in-home help for few hours a week (or more) to lighten your load.

• Transitioning a parent or other relative into a long-term care situation (even if everybody likes it).

Why do we feel guilty even about events that make life easier? One reason is that we’re the victim of our own best intentions. We want to do our best, want to do it all, and when we can’t met our own Olympian standards (by the way, virtually no caregiver can, especially solo), we can’t help feeling we failed a little bit. And then that pesky monkey taunts us that we therefore don’t deserve a break today.

Confession: Guilt is a favorite topic of mine. And not just because I’m so ace at feeling it. For years, covering the parenting end of the family beat, I’ve interviewed everyone from Drs. Spock, Brazelton, Sears, and Karp to researchers, psychologists, and most importantly, countless mothers. (Talk about the real experts in guilt!) It’s amazing how often the topic of guilt burbles up. And it strikes me that much of what I learned about mom guilt transfers to caregivers of adults –including this curious phenomenon of guilt over cutting ourselves a break.

Some rules of thumb about guilt:

• You can’t ignore this pesky emotion, can’t will it away. Guilt simply is. So straight off, don’t think there’s anything bad or wrong about your feeling it.

• There’s good guilt and bad guilt. Good guilt is the kind that causes us to examine our behavior and make a change, if necessary. If you feel guilty because, say, you were impatient with a parent with dementia, it’s like a little poke reminding you to try a little harder next time because hey, patience really is a virtue. Unfortunately what eats most of us alive is bad guilt. Bad guilt has no constructive underbelly. Bad guilt makes you feel guilty about a situation that you can’t help (your parent has to move into rehab, for example) or that is actually a positive for you (you’re hiring home care because you can’t do it all yourself)

• Beware the oughts-shoulda-couldas. For caregivers, this refrain can sound like: “I ought to be able to handle this; I’m her daughter.” Or, “I shouldn’t feel so happy about going someplace without Dad.” Or, “I could have handled that better.” Things (and feelings) are what they are; stewing or denying wastes precious energy.

• Guilt creeps in when we discount ourselves. Ironically, selfless people tend to feel proportionately more guilt. Because they work so hard aspiring to an ideal way of doing things for others, they tend to ignore the inconvenient reality that they have to look after themselves all the more. They may even forget that they, too, deserve extras and shortcuts. Or, when they finally get around to (by choice or force) having a Calgon bath or lunching out with friends, it feels as alien as it does great. That’s a sign you probably need to follow your self care with more self care.

• Guilt loves high standards. News flash: Nobody’s perfect. No caregiver anticipates every fall or bedsore. Tempers boil. Germs sneak in. Bills slip through unpaid. Life happens, in other words, no matter how much you love the person or how much you feel you “owe” him or her. Aim to be a “B” caregiver instead of an A+ caregiver, and everybody’s going to be happier.

• No mom is an island. No caregiver, either. I think it’s no coincidence that most of the “happy guilt” that creeps into a caregiver’s mind follows having the load lightened by getting help. It’s such a persistent canard that it’s somehow a sign of weakness to ask for or find assistance, and from as many sources of help as you can locate or who will offer it.

As I write this, I’m resisting that childrearing cliché, “it takes a village,” with all my might. But I bet those villagers (parents, caregivers, whomever) are not only happy — but less guilt-ridden, too.

  • Atlanta, you’re not alone.

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