Stress and Burnout in Brain Tumor Caregivers

When a loved one faces a brain tumor, caregiver stress can cause exhaustion, depression, and anxiety. Recognize the signs and take steps to connect.

When a loved one gets a brain tumor diagnosis, someone must step into the crucial role of caregiver. This is a brave step to take, full of its own stresses and challenges, in addition to sharing in much of the stress that the patient is under. And while caregivers are understandably focused on putting the health and well-being of their loved one first, they’re often not prepared for just how hard their own road will be.

Caregiver stress syndrome, sometimes called caregiver burnout, is a form of chronic stress, which may show up in the form of physical, mental, and emotional exhaustion. It may take the form of anxiety and depression. 

Two older adults in fleece jackets, holding arms as they walk down the street.
Caregivers are an invaluable part of the brain tumor community. For anyone taking on this stressful role, remember that connecting with people, finding space for yourself, and keeping perspective can help you keep your head above water. Photo by Jack Finnigan on Unsplash

And if you’re starting to feel this way, it’s important to understand that a) this is common and normal, b) you’re not a failure or a bad person if you’re experiencing it, and c) there are ways of coping beyond silent suffering. Whether you have early signs of caregiver stress, or you’ve been dealing with it for a while, you can still stop the spiral, stay connected to other people, and not lose yourself. 

So why does caregiver stress happen? It’s easy to tell ourselves at first that nothing is more important than doing everything we can for our loved one while they’re in the trial of their life. Yet even when you deeply believe in what you’re doing, it can take all that you have to give and more. Better understanding of the road ahead can help you be ready.

Causes

Some of the causes, according to the Cleveland Clinic

Role confusion: It can be difficult for a person to separate her role as caregiver from her role as spouse, lover, child, friend or another close relationship. Caregiving may become the primary dimension of the relationship and you may feel like your needs from the relationship have been lost.

Unrealistic expectations: You may expect that caregiving will be a duty that makes you happy. But in many cases it can make you sad or stressed or angry, especially if your loved one’s state is worsening. 

Lack of control: Caregiving comes down to directing resources for a loved ones care. Often caregivers find that the resources they need, whether money, time, knowledge, assistance, and good advice, can’t be found. 

Excessive demands: No one person can do everything, but often caregivers feel like they’re expected to be a superhero. This expectation can come from yourself, from the patient, or from other loved ones and supporters. But nobody can do it all and trying to may lead to consistent feelings of failure.  

Prevention

Whether you recognize symptoms of caregiver stress or not, it’s always worthwhile to do some things that prioritize your own well-being as well as your loved one’s. 

  • Talk about your stresses, fears, and frustrations with someone you trust. 
  • Accept help. Look to cancer organizations, churches, support groups, and groups of friends and family. Don’t be afraid to ask — people care about you and want to help.
  • Be realistic. While it’s important to hold on to hope, remember that whether your loved one gets better or not is mostly out of your hands. 
  • Set aside time for you. Taking care of yourself doesn’t stop just because you’re taking care of somebody else. Not only are you allowed to do something just because it makes you happy—it’s important to do so.
  • Set your own health goals. Think about the foods and activities that will keep you strong and positive, and figure out how to get those on a regular basis. Share your goals with supporters and allow them to help you. 
  • Go to a professional. A counselor, therapist, social worker, or clergy member will understand what you’re going through and will be happy to provide a nonjudgemental ear.
  • Join a group. Sometimes it can feel like you’re the only person in the world who knows your situation, but there are others walking the same road. So don’t walk alone. 

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