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When Family Caregivers Seek Help but Then Reject It

Guilt and worry may keep a caregiver from accepting some much-needed assistance

spinner image A woman delivering a meal to a friend that is a caregiver
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As two close siblings, Marie and her older sister, Carol, had quickly devised a mutually agreeable caregiving plan following their mother’s stroke. Because Marie was married and still working, Carol would move in with Mom and become her primary caregiver while Marie pitched in on weekends. But however well-conceived their arrangement, things turned out differently. Whenever Marie said she’d spend time with Mom so that Carol could go out with friends, Carol said yes at first but soon after found reasons to change her mind. It was as if she was determined to do it all herself or thought that no one — not even her capable sister — could care for their mother as well as she did. If Marie then protested, Carol would make light of switching plans. But she wouldn’t leave Mom.

Why would Carol act this way? This common interaction has been called “help-seeking, help-rejecting” behavior. The caregiver understands the importance of self-care and knows she is supposed to ask others for assistance but can’t bring herself to use it. Oftentimes, guilt about neglecting her perceived duties is the cause; other times, it’s justified by expedience. (“It’s just easier if I do it myself.”) I think of this pattern as “yes-but” caregiving. For example, a caregiver might say, “Yes, that would be wonderful if you would drop off dinner for us,” followed soon after by, “But Mom always prefers my cooking.” Or: “Yes, I would greatly appreciate it if you would take Mom to her doctor’s appointment,” followed by, “But it’s better for me to go since I can best answer the doctor’s questions.”

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The rationales offered by yes-but caregivers for saying no after having said yes aren’t implausible. However, their sudden changes of direction often leave others feeling confused and frustrated. Family members and friends may even feel personally rejected, as if the assistance they could give is deemed deficient; after a couple of rounds of this, they may back away entirely. Caregivers lose vital support that way. They also fail to receive help that, in truth, they do need to sustain themselves over caregiving’s months and years.

How can others understand yes-but caregivers’ choices and convince them to accept the help they originally agreed to? Here are some ideas:

Don’t take yes for an answer

Certainly, there are many caregivers who are overjoyed for any aid they can get. But others, like Carol, are guilt-ridden and ambivalent about accepting help; it’s a safe assumption that, even when they say yes, they have qualms about it and are prone to reversing course. Rather than experience this as rejection, view it instead as a reflection of the caregiver’s inner struggles. You can help reduce those struggles, at least a little, by granting them wide latitude and saying mildly, “Whatever works for you. I’m here for you if you should ever need me.” You can also add empathetically, “You are so devoted to providing care. It must be hard at times to allow others to help.”

Stress that the caregiver is still giving care

If a caregiver feels that accepting others’ help will accord her a carefree break, then she may be uneasy about it as if she’s being lazy or avoidant. But if you frame utilizing help as extending, not relieving, her caregiving, then she is more likely to stick with “yes.”

For example, if Marie tells her sister to enjoy lunch with friends while she drives Mom to a medical appointment, then Carol’s guilty feelings may be stirred and her reluctance piqued. But if Marie says to Carol, instead, “It would be a big help to me if you would write down exactly what you want me to say to the doctor and also be available by phone if I need you,” then Carol is being a caregiver by delegation, fulfilling a duty through Marie she still sees as her own. She probably won’t overturn the plan.

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Take a chance and show up

If yes-but caregivers’ reversals persist, then it may be time to deliver aid without consent. Don’t ask for permission to make dinner one night; arrive at the door with a surprise quiche and quart of ice cream. Don’t wait for the invitation to make a friendly visit; drop by, even for a few minutes, to lighten the mood. Call the caregiver and ask how she is coping. Email her silly cartoons. Keep inserting yourself as a caring presence. Yes-but caregivers aren’t generally rude and don’t want to hurt anyone’s feelings. They just want to feel less guilty. Be a trusted source of relatively guilt-free help.

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