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.
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 a caregiver from her role as a spouse, lover, child, friend, or another close relationship. Caregiving may become the primary dimension of the relationship, and you may feel like your needs in 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, 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.
- 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.
Here, we explore the experiences and coping strategies shared by caregivers who have navigated this difficult path:
Tammy L’s Breakthrough: Tammy emphasizes the importance of taking breaks to recharge. “I took a break by driving, working in my garden, and/or having my husband stay with his daughter for a few hours.”
Karen K’s Support System: Karen underscores the significance of building a strong support network. “ I hired a caregiver to help so I can get out for meetings and church activities. Friends and family have helped and encouraged a vacation without your loved one.”
Janelle S’s Self-Care: Janelle emphasizes the critical role of self-care in mitigating caregiver burnout. “Without an outlet (exercise, socializing, etc.) my physical and emotional health suffered.”
Janet’s Respite: Janet shares her recent experience of prioritizing respite care to alleviate caregiver burnout. “ Two weeks ago, I finally hired companion care to give me a true break for a few hours a week. It’s made a world of difference. “
Rich H’s Coping Mechanism: Rich reflects on his coping mechanism following the loss of his loved one. “Burnout only came after she died, I would say I was willing to give in to it then. I streamed TV to pass the time – The Amazing Race – ’cause I knew I would never want to watch it again.”
These insights highlight the multifaceted nature of caregiver burnout and the diverse strategies employed by caregivers to navigate its challenges. By prioritizing self-care, seeking support from others, and exploring healthy outlets for coping, caregivers can better preserve their well-being while continuing to provide compassionate care to their loved ones battling brain tumors.
- 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.
