Mesothelioma Caregivers: Helping My Patients Work Through Guilt
Health & Wellness
Written by Dana Nolan | Edited by Amy Edel
I’ve talked with many caregivers of mesothelioma patients in support groups, caregiver classes and in individual therapy when they’re struggling emotionally. A very common emotion caregivers tell me they wrestle with is guilt.
What Caregivers Have Shared With Me
- “I wish there was more I could do to help my spouse feel better.”
- “I feel guilty when I want some time to myself to do the things I need to do.”
- “Sometimes I get impatient or cranky with my [loved one with mesothelioma].”
- “I get stressed because I can’t get everything done and then I feel like a failure.”
Family members sometimes expect that their commitment as a mesothelioma caregiver is a reflection of how much they love the patient. For example: “I should demonstrate my love for them through the level of caregiving I provide. So, I must go to all the medical appointments, prepare every meal and do all the errands as a reflection of that love.”
They tell me they sometimes feel like a failure when they can’t do everything. Equating our love for someone with mesothelioma and how much caregiving we feel obligated to do sets us up for exhaustion.
The Physical and Emotional Challenges of Caregiving
Caregivers of mesothelioma patients may not have much experience with how physically and emotionally challenging being a caregiver can be. Having unrealistic expectations of our own capabilities and of caregiving challenges is very common.
Helping a loved one bathe, dress, move around the house or get in and out of a car requires strength and stamina. Caregivers may also find themselves providing wound care after mesothelioma surgery or helping loved ones through the side effects of chemo or radiation, which require patience, attention and energy. Managing medications, operating home medical devices and keeping up with household tasks are significant demands on both physical and mental energy.
Family caregivers don’t always allow themselves to clock out or take a break. Professional caregivers such as doctors and nurses etc. work their shift but then they can go home and decompress and take care of their own needs. Family caregivers may struggle with asking for help or accept that they can’t be on-call 24/7.
Recognizing and Challenging Caregiver Guilt
One of the ways I help caregivers who are feeling guilty is to ask: “What exactly have you done wrong to feel so guilty?” Typically, guilt isn’t an accurate emotion because we can feel guilt while having done nothing wrong in objective terms.
If someone feels guilty leaving their partner with mesothelioma for a few hours to get a haircut and meet a friend for lunch, I encourage them to ask: “What’s so wrong with taking a break for a few hours to look after your own needs?” I ask caregivers to consider: “If the roles were reversed, would you want your loved one who is a caregiver to you to feel guilty if they took a break to recharge or look after their own needs?” This type of role reversal question is usually helpful to challenge those guilty feelings that caregivers may have.
Feeling overwhelmed and irritable is common when we feel stressed as a caregiver. These are understandable human emotions. But it’s important that we take care of ourselves physically and emotionally to allow us to continue to function. While it can feel counterintuitive as a caregiver to take time for our own care, it’s vital that caregivers prioritize their own physical, social and emotional needs sometimes.
Caregiving a loved one with mesothelioma can be a rewarding yet difficult role to take on. Feeling guilty about how we’re doing as caregivers can make us even more stressed. So it’s important to recognize when we’re feeling guilty and to challenge those negative thoughts and give ourselves some grace.
