“I could have done that!” my friend grumped as I carried a stack of laundry into Pedro’s hospital room. I cringed inwardly and smiled outwardly.
“I didn’t have a lot to wash.” I set the neatly folded and wrapped stack of clean clothes in my suitcase and shoved it into the corner of the cramped room. “Thank you for the offer.”
“How much did it cost you?” she interrogated. “It’s free at my house.”
“It cost much less than a train ride and gas to get out to your place. I do appreciate your concern.” Inwardly, I seethed. While I appreciated her offer to help, couldn’t she understand that I preferred to wash and fold my own unmentionables—or let a stranger do it for me? Why did every interaction with her seem to heat my emotions to boiling? She only wanted to help—to do what she felt was her part in helping Pedro get well.
“Thank you for playing UNO with Pedro,” I said, as graciously as I could. “I get tired of losing to him.”
“It’s the least I could do. Why don’t you let me take your laundry home with me, and I’ll wash it and bring it back the next time I come.”
“No, thank you. I have what I need and I’m headed back to Montana in a few days.” Enough already with the laundry, I felt like screaming. Instead, I shared my schedule for the next week with her and tried to divert her attention from complaining about the nurses, the doctors and Pedro’s progress. At last, she left. And I was left with my thoughts of how to deal with pushy people who wanted to help.
On the one hand, I felt so grateful to everyone who helped us. My parents came to live with us and take care of our daughters so that I could rush off to San Francisco whenever Pedro needed me. My parents also subbed for Pedro and me at our teaching jobs. Pedro’s brother and sister-in-law, who lived 90 minutes out of San Francisco, spent as much time with Pedro as they could, and opened their home to him in the brief periods of time between hospital stays. Friends and acquaintances, moved by our story, sent letters, cards of encouragement, and money to help us with our travel expenses.
On the other hand, I resented the pushy people who felt that they knew best how to fight cancer and arrange my life. People who wanted to do my laundry when it wasn’t practical. People who knew that Pedro’s illness would go away if he just confessed his sins. People who thought they didn’t need to wear a mask when they came in the room ‘because they weren’t sick’ or ‘just washed their hands.’ People who thought they knew more than the doctors and nurses and liked to share THEIR opinion about Pedro’s treatment plan. It seemed like every pushy person I’d ever known had suddenly gotten ten times pushier.
I needed some boundaries—and I needed to not feel guilty for imposing them! Being a people-pleaser sort of person, this was not easy for me. Graciously refusing that impractical offer was the first of many boundaries I learned how to set. Here are some tips on boundary setting that I and other caregivers have learned from our experiences:
1. YOU and the one you care for have the right to set boundaries. (tweet this) This includes who has information about the status of the patient and who gets to visit. In our case, we had to keep the location of Pedro’s treatment on a need-to-know basis so that one particular person would not arrive on the scene with cast and crew ready to harangue the hospital staff and cause no end of drama. We kept this important person involved by sending letters and updates mailed from various cities (yes, we went to great lengths to keep the boundaries in place for the peace of mind of everyone involved!).
2. You don’t have to explain or rationalize your boundaries to other people. Caregiving brings trauma to the caregiver. It’s ok to not answer your phone, your text messages or emails when you need some ‘time out’ from caregiving.
3. State your most important boundaries clearly. It’s ok to write out a list of boundaries and post them on your front door for all well wishers to read before they enter. This way, you won’t be put in the awkward situation of refusing entry to someone. Post a sign on your front day that says: “We welcome visitors, but please do your visiting by phone if you are sick or have been exposed to sickness recently.”
4. Graciously listen to advice, but don’t feel badly if you don’t take it. The advice that friends, family and complete strangers freely offer may make you shake your head in disbelief. Choose to assume that the advice was given in love, smile kindly, and don’t take offense. You have the right to never do what they suggest.
5. Make a list of how people can help BEFORE people start asking if they can help. During times of illness and distress, people WILL reach out to help you. If you make a list of ways that you would appreciate help before they start asking, you’ll never be caught off guard when someone asks how they can help. If you need help with meals when your loved one is home, put that on the list (don’t forget to include dietary restrictions). If you don’t mind people doing your laundry or cleaning your house, put those things on the list. The list is completely up to you, but it allows you to set boundaries that you are comfortable with while at the same time giving those who care about you something constructive to do.
6. Don’t be afraid to change your boundaries as you need to. Life changes at the speed of light when fighting cancer. It’s OK to change your list of what you need, to change who you want to see, what advice you want to take, who you seek out for comfort and the things you would like distance from. You are in control of balancing your boundaries and your needs.
What boundaries have you struggled to set as a caregiver?