I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is B is for Boundaries & Caregiving.
Sometimes as a caregiver, you can get so focused on taking care of your loved one that the boundaries between you and the patient can get blurred. Setting boundaries in your caregiving relationship can ease both caregiver burnout as well as the guilt that both the caregiver and patient often feel as a result.
“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
Former First Lady, and caregiver advocate, Rosalynn Carter
Blurred boundary lines can manifest themselves in many ways:
You might find it difficult to make decisions.
You don’t want to hurt your loved one’s feelings. Maybe you’re even worried about how others will perceive the way you are handling things. You can hear the whispers already, “Can you believe she is still going bowling once a week while her husband is going through cancer?” But, when you are able to set clear boundaries, you don’t worry about the whispers, because you know that you’ve made the right decision for yourself. Your bowling night might be the one thing that keeps you from losing it during the most stressful time of your life.
You feel exhausted when you don’t have clear boundaries.
Whether this is in other relationships such as work and church, or in your relationship with the loved one you are caring for, boundaries help to bring a sense of peace and order to your life. All of the things you agree to do eventually will wear you out. Even if you were able to take on the same schedule before you became a caregiver, it’s much more difficult to maintain when you are also living with the emotional strain cancer puts on patients, their families, and their caregivers.
You’re just trying to be helpful.
Maybe you’re just doing what you’ve always done (before you became a caregiver). Some caregivers find serving others to be therapeutic. It takes their mind off of their worries and gives them something to feel in control of. Even if you fall into this category of people, keep in mind that you can get too much of a good thing. Use caution when agreeing or volunteering to do things, especially if they are things that require a long-term commitment.
It’s common for your role as a caregiver to change over time. It may become more intense and time-consuming, requiring you to cut back on the things you’ve always done in the past. Letting go of those things, especially things you really love doing, is hard. Remind yourself that this isn’t permanent. At some point, you will be able to say “yes,” again to responsibilities you enjoy, outside of your caregiving role.
For now, it’s a good idea to allow yourself an “out.” Say, “I would love to help, but there is the possibility that my caregiving responsibilities will interfere with this at some point. This lets the people in your life know that at some point you may need to pull out of a commitment.
Sometimes this lack of boundaries develops out of habit.
You start saying yes. More “opportunities” arise, and before you know it, your calendar is ready to fall off of the fridge, it’s so heavy with ink.
Some people lack the assertiveness it takes to say, “no.” Have you ever had someone ask you to can do something for them, and because you are afraid of letting them down, you agree, even though you really don’t want to? It can happen to anyone, but if it happens too often, it can contribute to burnout. As a caregiver, you already have a lot of responsibilities.
Blurry boundaries create chaos, which isn’t good for anyone. That chaos can show up in your schedule and in your relationships. You may wonder where your boundaries are (or even if you should have them at all). When you add too much to your list of things to do, you are bound to drop the ball at some point. This can lead to feelings of guilt and anxiety. Even worse, you can end up resenting the people you are serving, including the patient you are caring for. By setting clear boundaries, everyone knows where they stand and what they can and shouldn’t expect of you. This includes you!
Sometimes patients expect more than what is reasonable and healthy.
Being ill can cause a patient to feel afraid and alone. It’s natural for them to rely on you, heavily to help them through these times. Sometimes this can become unhealthy. They may make you feel guilty for going out with friends or having another commitment that keeps you from doing what they would like you to do for them. The longer you allow this to continue, the more difficult it will be for them to understand that they are being unreasonable.
“You’ve always spent Friday nights with me in the past.
Why do you need to go to your quilting group now?”
As a caregiver, you’re already one demand away from burnout. Trying to live up to the expectations of a patient without boundaries can slide a caregiver over the edge. Even if it’s difficult at first, your loved one will eventually understand and get accustomed to your boundaries.
Do you as a caregiver demand too much from yourself?
With these responsibilities, you might feel like you fall short of your own expectations. This not only contributes to caregiver guilt but patient guilt, as well. Most patients can see when you are neglecting other relationships and responsibilities in favor of caring for them. They’re also aware of how tired you are and the effects it is having on your overall health.
Boundaries are an expression of respect.
Boundaries help you and the person you are caring for determine what your role and responsibilities are. Sometimes caregivers are the ones crossing the boundaries of their loved one. They might hover, “mothering” their loved one. It’s easy to see why this happens, especially when a patient is lax in their self-care. Unfortunately, this can leave a patient feeling more like a child than an adult, capable of making decisions for themselves. Worse yet, they may feel disrespected. Often the patient was once the provider and a source of strength in the family. Now, they’re in the most vulnerable position they have ever been in. They have lost control over so many things in their lives. A caregiver who unintentionally crosses a patient’s boundaries only exacerbates this feeling.
Many patients say they feel like a burden to their loved ones.
By allowing yourself to do other things you enjoy, apart from your normal caregiving routine, you not only refresh yourself but reassure the patient that your life isn’t consumed by taking care of them. You can also reassure them directly when you encourage family members to talk about feelings. Be committed to honesty when you talk together. This shows your loved one respect. It says, “I trust that you can handle the truth. You deserve the truth.” Setting boundaries benefit both patients and caregivers.
Boundaries and Respite Time
These boundaries should include setting aside time for yourself to refresh and nurture the other relationships in your life. Sometimes this can cause some anxiety on the part of both the patient and the caregiver, especially if the level of caregiving is intense. They may worry about how they will get along when you aren’t there. If their concern is merited, have a friend or family member come to spend some time with them so they can feel safe while you have some time to yourself to relax.
When a Patient’s Cancer is Terminal
Boundaries can be especially difficult to establish and maintain if the patient has a terminal illness. The caregiver may think, “What if Mom dies tonight while I’m on a date with my girlfriend?” Kelly Grosklags, who specializes in oncology-related counseling says about this, “people die when they are ready. Don’t feel guilty if you do happen to miss the death, itself. You have to make decisions, in the moment, with the information you have at the time. You have to say no in order to say yes.”
“Love many things, for therein lies the true strength, and whosoever loves much performs much and can accomplish much, and what is done in love is done well.” –Vincent Van Gough
I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.
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In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.
My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com
Also, put your memories into words with The Memory Maker’s Journal.
I also blog at Heather Erickson Author/Writer/Speaker