What to Know When Your Parent Has Mesothelioma

Many adult children are familiar with the traditional reversal of responsibility for care as their parents get older, becoming the caretaker rather than the person being cared for. Even so, a parent being diagnosed with mesothelioma can present unique challenges for their adult children. It is easy to be overwhelmed by the experience of watching a parent face a serious illness like mesothelioma, all while balancing caretaking responsibilities with the stressors of everyday life. Many adult children describe a complex mix of emotions about their parents’ mesothelioma journey, often experiencing a full gamut from grief, sadness, and helplessness to fear, anger, and frustration, all undergirded by a deep sense of love.

Whether you’re a young adult trying to find your footing or an older adult raising your own family, your parent’s mesothelioma diagnosis may be daunting and may feel like something no one else can understand. However, you are not alone. Many adult children of mesothelioma patients have walked this path before you and are walking it alongside you now.

While each family’s mesothelioma journey is unique, this article will explore insights gleaned from other adult children of mesothelioma patients, which may be helpful in finding the balance between caring for your parent and caring for yourself.

• It’s okay to feel your feelings (including feeling overwhelmed): Many adult children of mesothelioma patients feel the need to “stay strong” and deny their own emotional needs in order to provide assistance and care to their parents—even while secretly falling apart inside. Many describe feeling guilty about their feelings, especially if they are negative, as well as a general sense of overwhelm that keeps them from fully recognizing and processing what they are experiencing emotionally. It’s important to remember that your feelings about your parents’ mesothelioma are normal, including the emotional whiplash you may be experiencing—moving quickly between shock, sadness, resolve, and hope, all cycling again and again. Give yourself space to feel, grieve, and not have all the answers.

• Talk—and listen—to your parent about what they are going through. When it comes to conditions like mesothelioma, it can be hard to know what to say—or how much to say—to your diagnosed parent. Your parent may or may not want to talk about their diagnosis with you. They may have difficulty talking about it at all, with anyone, but they may also have questions they aren’t ready to ask you or fears they don’t want to burden you with.

One of the most powerful gifts you can give your parent (and yourself) is making space for honest conversation on their terms. Let your parent know you’re there to listen without judgment. If the time feels right, you can ask gentle guiding questions (such as, “What are you most worried about?”; “What helps you feel supported?”; “Is there anything you want me to know?”) These conversations can sometimes be hard, but they can also open the door to connection, understanding, and love—as well as comfort for both you and your parent during a trying time.

• Be aware of—and sensitive to—the role reversal. As mentioned earlier, one of the biggest things that both mesothelioma patients and their adult children struggle with is the role reversal from caretaker to person being cared for. This may be unfamiliar ground for both you and your parent as you navigate your new dynamic. It can be very strange to see the person who you once thought was invincible now lean on you for support—and it can be just as strange for them.

Many adult children of mesothelioma patients have found it useful to shift the focus of their parent-child relationship from hierarchy to partnership. Now that you are both adults, you aren’t necessarily taking charge of your parent, as your parent did when you were a child—rather, you’re walking beside them and lending support on their journey. 

• Respect your parent’s autonomy but be ready to step in to help. Related to the previous point, one of the main ways you can effectively and respectfully move through your parents’ mesothelioma journey with them is to keep their autonomy and dignity intact whenever possible. It’s hard to watch a parent become more vulnerable, but it’s crucial to strike a balance between supporting and taking over. Ask them how they want to handle decisions, include them in conversations, and let them lead when they can. Respect their wishes and decision-making, even when you don’t agree.

There may come a time when you do need to step in to act in your parent’s best interest, in the event that they are no longer capable of doing so themselves—especially when they need help with logistics, paperwork, or emotional processing. However, it is advised to try to maintain their independence whenever you can, which can preserve their dignity and your relationship.

• Let other people help. Many adult children of mesothelioma patients express feeling the need or the obligation to shoulder everything themselves, leading them to avoid reaching out for help. Sometimes, it can feel like asking for help—or simply accepting offers to help from others—is a sign of weakness or a rejection of your responsibilities to your parent. However, it’s important to remember that there is nothing weak about asking for or accepting help. On the contrary, allowing other people to help you care for your parent is a sign of love and respect, both for your parent, yourself, and the person helping out.

Whether it’s a sibling taking a turn with appointments, a neighbor dropping off meals, or a friend listening when you need to vent, say yes when people offer support. And if they don’t offer, ask. Create space for a community of care where tasks can be delegated. This will give you the energy and emotional space to be fully present in the moments that matter most.

• Don’t forget to take care of yourself: While a parent’s mesothelioma journey contains many ups and downs, it is ultimately a very difficult experience—potentially one of the most difficult experiences of your lifetime. It can also be all-encompassing, narrowing your world to your parent’s needs, their appointments, and their care. And while you want to be there for them fully, your own emotional and physical wellbeing matters too. It’s important to acknowledge that you’re doing the best you can, and you deserve support and care, too. Consider seeing a cancer-informed therapist or joining a mesothelioma support group to help you process your emotions. Make sure you are eating, drinking, and sleeping enough, and try to take breaks—even small ones—on a regular basis to recharge.

• Be present in the ways that matter: Amid the uncertainty, fear, and pain of mesothelioma, try to be present with your parent to embrace the everyday joy of being together with them. Embrace spontaneous moments of deep connection in small joys. A walk around the block. A shared laugh. A meaningful conversation. A treasured memory. An acknowledgement of past harm. A silent moment of just being together.

Having a parent with mesothelioma is an intense, life-changing experience, but you are not alone in it. Adult children of people with mesothelioma are doing something incredibly hard—and incredibly meaningful—in moving through their parents’ mesothelioma journey alongside them. Remember that your love, no matter how messy or imperfect, is a light in the dark. That love will endure, no matter what happens next.

Are you or a loved one looking for more information about mesothelioma? Satterley & Kelley, PLLC can help. Call our office in Louisville at 502-589-5600 or toll-free at 855-385-9532. You may also complete our contact form for a free initial consultation.