Caregivers Also Need to Be Care Receivers

NEW YORK—Just deciding to go out for an evening can be a big decision for someone taking care of a sick family member. The caregiver can feel guilty or may not have anyone to take care of the sick relative, or may simply feel too depressed to go out. The stress may even affect the person the caregiver is striving so hard to care for.

Dominick Bonanno, CSW, a Cancer Care Inc. social worker and program coordinator, had some advice about these common but painful decisions during a Cancer Care teleconference for caregivers. His first tip—caregivers also need to be care receivers, which includes self-care or taking a break.

“There’s always the question of whether to accept an invitation or decline it. It’s a judgment call, but if you want to go, talk with the host or hostess about your particular needs and establish a plan of action,” he said.

As an example, Mr. Bonanno cited a woman whose teenage son is seriously ill and in the hospital. She is invited to dinner. Part of her wants to go even if it’s only for a couple of hours before returning to the hospital, but she’s afraid that while she is there, she might break down and spoil the dinner for the other guests.

“This women needs to talk to the host or hostess,” Mr. Bonanno said. “She could tell them she will go for a little while, but that she may suddenly feel that she can’t be with people, that she may need to cry. She may want to go to a bedroom or bathroom for some time alone without having to worry that people are going to come after her and make a fuss.”

Having that understanding beforehand, Mr. Bonanno said, allows the caregiver to claim the safe emotional space he or she may need.

On the other hand, the caregiver should not be forced to go out by well-meaning friends and family. “Don’t let yourself be pushed into celebrating a holiday, for example, if you are not in a cheerful mood,” he said. “If you feel emotionally or physically drained, you may want to postpone hosting a holiday dinner. Give yourself permission to postpone it, to set boundaries.”

Caretakers also need to give themselves permission to take a break, and the loved one may need a break from them, too. “Did you and your husband love to go out, but now that he has been diagnosed with cancer, you don’t leave the house? Do you feel you always have to be there to protect him?” Mr. Bonanno asked. “If someone calls and invites you somewhere, that may be the break that you need. Or friends may offer to spend the day at your house so you won’t be alone.”

Use Support System Strategically

Having a support system, someone to fill in while the caretaker takes a break or help in other ways, is of the utmost importance. Mr. Bonanno advised caregivers to use their support system strategically.

“You can cry on Aunt Susie’s shoulder, and she’ll be calm and comfort you. Uncle Paul may not be able to do this, but he could drive you to the hospital,” Mr. Bonanno said. “So in your support system, find out people’s strengths and go for those strengths. Don’t expect people to do things that they may not be able to do—because you’re setting yourself up for disappointment. Don’t try to make an Aunt Susie out of an Uncle Paul.”

Reducing stress will give caretakers more patience, Mr. Bonanno said. They will feel less resentment and less trapped. “Good care receiving will lead to good caregiving,” he concluded.