Six Hacks for Setting Boundaries as a Caregiver

Caregivers need to set boundaries in order to have the bandwidth to care for an injured or ill family member. For some caregivers, boundary setting might come easily. For others, not so much. These six hacks will help you set the boundaries you need to keep yourself healthy.

November marks another National Family Caregivers Month, a time to recognize, support, and listen to family caregivers. Everyone talks about a cancer journey, or the toll the aging process takes on our nation. But this month we want to celebrate, listen to, and find new ways to celebrate the family caregivers in our midst. Each Sunday of November you’ll heart from a different family caregiver on ways to avoid burnout, care for oneself, or make crucial decisions. You can also listen to the Self-Care Hacks podcast for interviews with family caregivers.

The Battle for Mt. Laundry

“I could have done that!” my relative grumped as I carried a stack of laundry into Pedro’s hospital room. I cringed inwardly but 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 her part to help Pedro get well.

She opened her mouth in protest and I hurried to change the subject.

“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 for now. I head back to Montana in a few days.” Enough already with the laundry, I felt like screaming.

“Can you believe that the nurse forgot to change Pedro’s sheets?” she said.

“Let me tell you my schedule for the rest of the week,” I said, hoping to avoid yet another long litany of complaints about every. single. thing.

At long last, she left. I dropped into a chair, exhausted by the effort to dodge and divert the negativity. How could I keep on dealing with pushy people who wanted to help?

Realizing I Needed to Change the Way I Interacted with Others

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 miles out of San Francisco, spent time with Pedro whenever I had to return to Montana. In between his treatments, they opened their home to him. 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 they knew best how to fight cancer and arrange my life. People who wanted to do my laundry when it wasn’t practical. Those 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.’ Some people even 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. As a people-pleaser sort of person, establishing boundaries didn’t come easily. But without firm boundaries, I would soon sink under the stress of other people’s opinions.

I had taken a firm first step in establishing boundaries when I turned down the laundry offer. Sometimes, as a caregiver, the first steps towards self-care includes mustering up the courage and setting boundaries.

These hacks on setting boundaries for caregivers will help you get a handle on the overwhelm of caring for a loved one before you suffer from caregiver stress or caregiver burnout.

1. YOU and the One You Care for Have the Right to Set Boundaries 

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 both the patient and the caregiver).

You have the right to do the same.

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. Learn how to use autoresponders. Make it clear to others that if you don’t take care of yourself, you won’t have the resources to take care of your loved one.

This post has helpful hacks for using social media as a tool to help you.

3. State Your Most Important Boundaries Clearly 

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 that says: “We welcome visitors, but please do your visiting by phone if you are sick or have been exposed to sickness recently. Wear a mask and use the hand sanitizer right inside the door.”

If the doctor says all visitors need to wear masks and booties, make sure everyone knows ahead of time. Don’t feel badly if someone chooses not to visit because of the requirements. Not your monkey, not your circus.

4. Graciously Listen to Advice, but Don’t Feel Badly if You Don’t Take it 

The advice friends, family and complete strangers freely offer may make you shake your head in disbelief. Choose to assume they gave the advice in love, smile kindly, and don’t take offense.

Something about illness and injury brings out the Dear Abby in everyone. Non-caregivers have no idea how many snippets of wisdom and advice others have already showered on you. People want to feel as if their advice or efforts helped save the life of your loved on. Humans are quirky that way.

You have the right to never do what they suggest. Especially if it involves garlic or carrot juice enemas.

5. Make a List of How People Can Help BEFORE People Start Asking if They Can Help

As soon disaster strikes, take time to start a document on your phone of all the ways people can help. The lengths people will go to help out a friend in need might astonish you. Kind friends picked our girls up from school multiple times, invited them over for a few nights so I could get a break or spend a night with Pedro in the hospital.  

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 feel 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).

Maybe 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 feel comfortable to you. At the same time it gives those who care about you something constructive to do. You can check out this free caregiver helpers template for ideas.

6. Don’t be Afraid to Change Your Boundaries as You Need to

Life changes at the speed of light when fighting cancer or dealing with a long-term care situation. You have permission to change your list of what you need. If a friend or relative starts stressing you out, you have permission to set new boundaries in order to meet YOUR needs.

Above all, you want to manage your stress levels so you’ll have the bandwidth to care for your loved one. If people take offense, remember—not my monkey, not my circus.

You get to control and balance your boundaries and your needs.

These signs of caregiver stress and caregiver burnout from Dr. Michelle Bengtson will help you assess your need for new boundaries.

While I couldn’t set a boundary of avoiding my laundry-loving relative for the duration of Pedro’s illness, I did set boundaries around our conversations. Every time she opened her mouth to complain, I’d distract her with a question about another topic. I gently, but firmly built a wall of protection around my frayed emotions. She qualified as a nice person, but not a safe person.

Surround yourself with safe people, and never fear erecting boundaries for everyone else. Safe people don’t probe, pick, and harp. They listen, encourage, and pray. Safe people only give advice after asking if you want to hear it. They will tell you the truth, but they won’t force it on you.

Caregivers need safe people to surround them. Safe people don't probe, pick, and harp. They listen, encourage, and pray. #caregiver #selfcare Click To Tweet

If you’re a caregiver, you need safe people around you in order to take care of yourself. And if you don’t take care of yourself, the loved one you care for will suffer.

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