How to Set Healthy Boundaries as a Chronic Illness Caregiver

Kim Moy
Sep 9
5 min read

A wood fence that stretches between two pieces of lush rural farm land.

As chronic illness caregivers, we often find ourselves drowning in an endless sea of responsibilities: medical appointments, treatment research, household chores, special requests from our loved one – and that's just before lunch.

You're not just providing care; you're living and breathing it. So it’s often hard to set healthy boundaries around your caregiving role. Yet setting boundaries is crucial to your own well-being. Setting boundaries isn't selfish. It's an act of self-preservation that allows you to continue to show up for the one you love and for yourself.

At a recent support group meeting, I gave a presentation on the importance of setting healthy boundaries, the three simple yet difficult steps to setting boundaries, and several practical tips on how to create and maintain them. This workshop highlighted parts of a larger lesson on setting boundaries in my group course “Navigating Change.” Here are some of the key takeaways:

The High Cost of Not Having Healthy Boundaries

First, let's talk about why this is so critical. When we don't set boundaries, the consequences can be crushing. As I shared with the group, I've struggled with setting boundaries, have experienced burnout, and have suffered from all of the following consequences.

Emotional Exhaustion and Burnout: We get so overrun and exhausted that we have nothing left to give. I’ve experienced burnout, and it’s no fun. Not only are you not having fun, but you are also not fun to be around. You don’t want to go there.
Resentment and Frustration: When you give and give without boundaries and without replenishing yourself, you can start to feel angry—at the situation, at your loved one, and at yourself.
Loss of Personal Identity: It's easy to get so lost in the caregiving role that you forget who you were before. You lose sight of your passions, your hobbies, and the things that make you, you. But you are more than just a caregiver. You are a whole, deserving person with your own needs, dreams, and feelings.
Physical Health Problems: A surprising number of caregivers suffer from health issues themselves. Your body can only handle so much stress before it starts to break down.
Compromised Quality of Care: If you're not well, you can't provide your best care to your loved one. If you feel like you’re drowning due to a lack of boundaries, you may become less patient, less present, and less able to problem-solve effectively.

The Three Core Steps of Boundary Setting

This isn't just about saying "no." It's a three-step process that takes practice and patience. While they seem simple, they can be really hard to do. (In the group course, we go deeper into how we can effectively take these three steps.)

Identify Your Boundaries: This is where it all begins. Take a moment to consciously think about and write down what you can and cannot do. What are your personal limits—physically, emotionally, and mentally? This is a proactive step that many of us skip.
Communicate Your Boundaries: Once you know your limits, you have to share them. This can be incredibly difficult, especially with a loved one who relies on you. As I mentioned in the workshop, it's hard to tell your partner or child, "No, I can't do that for you right now," when they’re unable to do a lot of stuff due to their illness. But we need to communicate them so others know what our limits are. It’s essential for a healthy relationship, and so that you don’t over-extend yourself and burn out.
Honor Your Boundaries: This can be the hardest part. It means respecting your own "no" and also accepting when others say "no" to you. It's about recognizing that you and your loved one are two different people with your own needs and limits. Boundaries are dynamic; they can change every day depending on the situation.

Here’s an example from my own experience with my late parents (my mother suffered from Alzheimer’s). My sister and I decided that there were certain tasks we simply couldn't or didn't want to do – partly because we also had to care for our own young kids (and I also had to care for my husband, who was very sick and disabled from ME/CFS). We were fortunate that we could hire paid caregivers to help them when we couldn’t be there in person. It wasn't a failure; it was a realistic and loving choice that preserved our relationship.

A road sign that says "observe out of bounds areas."

Seven Practical Tips to Create Boundaries as a Caregiver:

During the workshop, I offered some practical tips to help you get started.

Identify what you will and want to do: Write down all the things that you can and want to do for your loved one. Then make a list of things you’d like someone else to do. And then create a third list of things you really don’t want to do under most circumstances.
Take control of your responses: You may not control the illness, but you can control how you react. Remember that you have control over your responses, especially how you think and how you take action. You have agency, even in challenging situations.
Honor and prioritize your own well-being: This isn't a luxury; it's a necessity. You deserve to be well. And if you get too run down, you can’t be of service to anyone. You can actually cause damage to yourself and others.
Set realistic expectations and give yourself permission to adjust: Some days are better than others. It's okay to adjust your plan and reschedule. For example, it’s OK to change the plan on a day you're feeling overwhelmed or have too much to do. Maybe you’re feeling overwhelmed that day, week, or month. What can you realistically bite off and accomplish given current circumstances that are constantly changing?
Set boundaries with yourself: I encourage caregivers I work with to:- Set X number of hours/day on caregiving responsibilities. - Or maybe it’s easier to pro-actively set X number of hours/day for self-care activities that are restorative to you. - Identify a certain number of tasks or projects you can realistically take on each week or month while also balancing other aspects of your life (e.g., work, self-care, hobbies, social activities).
Delegate: Caregiving is not a one-person job. As a caregiver, you are the project manager. Find ways to get help from friends, family, or professional services. Go back to the lists of activities/chores that need to get done, but you don’t like or don’t want to do. Who would be a good person to help with certain tasks based on their skills, interests, and bandwidth?
Explicitly discuss EVERYONE’S needs & boundaries (yours and your loved one’s): Have open and honest conversations with your loved one about everyone's needs and limits. This can include respecting each other’s current headspace, respecting each other’s time, and allowing for mistakes.

If you’d like to dive deeper into setting boundaries as a caregiver, you can join the “Navigating Change” group course. (We’ll also cover other important topics, such as embracing positive self-esteem & self-worth, navigating your changing relationships, and asking for help effectively. Reach out to me at kim@caregiverwisdom.net if you'd like to learn more.) In the section about setting boundaries, I'll share what I've learned about: