A brain tumor diagnosis is a life-changing event, not only for the person with the tumor but also for family members and other loved ones. Although every caregiving experience is unique, many find it helpful to talk to others going through similar experiences. The ABTA offers resources that can help you feel connected and can help you cope.
The role of a caregiver is difficult to summarize, because it is different for each person and often evolves over time. The good news is, you’re not alone. Your caregiver role may include:
Your role as a caregiver will probably change throughout the course of the patient’s illness. For example, after diagnosis, you may be focused on education yourself about brain tumors and types of brain tumor treatments. At another point along the journey, you may be helping the patient manage side effects from treatment or help the patient coordinate follow-up appointments. This may seem overwhelming at first. But after making the initial big decisions of choosing a medical facility and treatment plan, caregivers often feel they are in a place to be proactive, whether that involves researching complementary therapies, finding a support group, or looking into home care options.
It can be difficult to put yourself first, especially when thinking about everything that’s going on with the patient. But taking care of yourself will help you be a better caregiver.
Brain tumor treatment often involves many different healthcare providers and facilities. As the patient’s primary caregiver, you’re a key part of the patient’s healthcare team, too. Having good communication with the patient’s doctors will lead to the best outcomes. Here are some things to know when communicating with the healthcare team:
A brain tumor diagnosis affects more people than just the patient. It has a major effect on your life as the primary caregiver, and those effects ripple out to the patient’s family and friends as well. As with any major life challenge, it’s difficult to predict how those close to you will respond. Some relationships may become strained, while others grow stronger. The most important thing is to make sure you have support, whether that comes from family, friends, professionals, or others.
There is no easy way to share the news of a brain tumor diagnosis. Talk with the patient and decide together who you want to tell and how you want to tell them. Remember that a wide range of reactions are common.
It’s understandable to want to shield children from serious and scary topics like a brain tumor diagnosis. However, having an open conversation with children – in an age-appropriate way – can be effective in helping them cope with the diagnosis and adjust to the changes it will bring to the family. Here are some tips to help start the conversation:
Friends and family may look to you for updates on the patient’s condition. However, sharing updates with many different people may be draining and time consuming. Some caregivers have found that asking another person to serve as the “updater,” sharing the latest information with other family and friends, can be very helpful.
Sometimes family and friends may not know what they can do to help. Next time someone says, “Let me know if there’s anything I can do,” give them a copy of this caregiver’s assistance checklist for family and friends.
You are committed to standing by the person you love throughout the brain tumor journey, but caring for a spouse or partner comes with unique challenges. Personality and behavior changes may feel hurtful. It may be hard to accept that the person you love is now different, especially if he or she doesn’t see the changes.
Make sure you are getting the help and support you need – both day-to-day support as well as emotional support – so you are able to accept and live with the “new normal.”
If your parent is diagnosed with a brain tumor, the role reversal of caring for the person who once cared for you may seem strange to both you and them. Everyone handles a situation like this differently. Know that taking on the role of a caregiver can trigger anxiety, stress, and depression. To make these challenges more bearable, it’s important to ask for help from other family members, friends, and colleagues. You can also find support groups online or in person. For practical, day-to-day support, you may want to research care options.