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Stress and Burnout in Brain Tumor Caregivers

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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. 

Staying Strong as a Caregiver: Day to Day Life Changes

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Written by: Courtney Benisch – Regional Relationship Coordinator for Head for the Cure

Once you become a caregiver, your life changes instantly. Roles will reverse in the household and it will change the way you go about doing things day to day. As a 23-year-old caregiver, I made a drastic life change after my mom was diagnosed with a Glioblastoma in 2016: I immediately moved back in with my parents to help take care of her. Thankfully, my step-dad, brother, and I all had jobs that were flexible and allowed us to spend as much time with my mom as we could.

Suddenly your life is filled with doctor’s appointments, therapy appointments, and your “normal” life schedule isn’t so “normal” anymore. You learn more medical terms in a few doctor’s appointments than you would ever expect to in a lifetime. I learned more about short-term and long-term disability, and what Explanation of Benefits were in a matter of one phone call than I expected to before I was 50. I remember telling my mom’s best friend that my brother and I doubled our age seconds after my mom was diagnosed.

Since I lived with my parents again, yes that meant home cooked meals, but it also meant learning all the names of the different medications my mom was now taking: chemotherapy pills, anti-nausea pills to offset the chemo, steroids, blood thinners, the list goes on and on. Plus, you have to recite those and the dosages every time you go into a doctor’s visit. Did I mention knowing the side effects, too? My mom developed blood clots from one of her chemotherapy treatments, and we had to constantly check for the symptoms. She did unfortunately develop them, and we had to go to the emergency room at 4am one morning because it was so bad.

Due to the location of the tumor in my mom’s brain, she had to attend physical therapy and occupational therapy throughout her treatment. My step-dad and I would take turns taking her to these so the other could do things around the house, catch up on work, or even take a nap. My mom had severe balance issues, so the physical therapy was supposed to help her regain strength in her legs and better her balance. She was dependent on holding onto something while walking, whether it was a walker, the kitchen counter, or our hand.

Brain tumors are unlike any other tumor due to the nature of their location. Where they are in the brain has a huge effect on a person’s functions more than any other tumor would.  Occupational therapy was needed because my mom’s memory loss and lack of cognition. We weren’t sure if she was going to remember how to brush her teeth or take a shower, so that’s what OT helped with. She had homework to do after each visit, just like I had homework growing up after school.

As a caregiver you live through everything the patient is going through day in and day out. For me, that still is the hardest part. You cognitively see how this disease affects a person drastically. The biggest change for me was my perspective on life. I woke up every morning not knowing if it was going to be the last day with my mom, and that changes you. You realize life is way too short to sweat the small stuff and you can’t plan your life years out. Everyone who knew my mom enjoyed each day with her as they could, and I know we all cherish that to this day.

As I mentioned in my previous article, being a caregiver doesn’t stop. You will carry that title for the rest of your life, and you should do so with pride. You honored your loved one in the best way possible, just being there for them through thick and thin. Whether your loved one is here with us today or has passed, they know that you did the best you could during a very difficult time.

Brains for the Cure is a different kind of resource for patients and caregivers and it is helping people adjust to their new “normal” life the best they can. If I knew about it when my mom was sick, it would have made things a lot easier on us. The Patient Resource Guide is an amazing item that BFTC created and it can help you in so many ways. It gives you definitions for all the medical terms that come into your life, it has a space to write any notes the doctor may give you, and more. You can print out your own guide here.

Adding Speech Therapy to Your Treatment

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Any type of brain tumor has the potential to affect cognitive abilities of the patient such as their ability to speak. According to an article published by American Speech-Language-Hearing Association Wire in 2012, around 30-50% of brain tumor patients will experience what is known as aphasia. Aphasia is the “loss of ability to understand or express speech”.

Each patient can have different symptoms before they are diagnosed, and those symptoms have the possibility to change after surgery or treatment. It is not uncommon for patients to take part in tests before, during, and after surgery.

Some tests that may be performed include The Boston Diagnostic Aphasia Examination, Western Aphasia Battery, Peabody Picture Vocabulary Test, and Token Test. All of these tests can be taken by patients before, during, or after surgery. Tests taken prior to surgery can give a patient’s doctors a baseline to compare with any tests taken during or after surgery.

After surgery, patients may choose to seek out a speech therapist if they are still having trouble with any modalities of language, including language production, comprehension, reading, and writing. Patients may be in therapy for a few months or could be treated longer after surgery if they have more difficulties.

Speech therapists can also be helpful for patients having difficulty eating and/or swallowing.

Find a certified speech therapist through the American Speech-Language-Hearing Association’s (ASHA) searchable database.

Sources: ASHAWire: “Treating Cancer-Related Aphasia”

Adding Music Therapy to Your Treatment

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When someone is diagnosed with a brain tumor, the initial next steps include determining a treatment plan. The standard of care for a brain tumor may include more clinical treatments such as surgery, chemotherapy, and radiation. Additionally, patients may need to go through a variety of other therapies, including physical therapy or speech therapy directed at assisting the patient’s day to day functionality. One option patients may not automatically consider is music therapy.

Music therapy was formally introduced into Western medicine in the 1950s and is a less common type of therapy. However, it can assist in managing side effects of diagnosis and treatment such as anxiety, nausea, stress, and depression. According to an article published by M.D. Anderson Cancer Center, “When used in conjunction with conventional cancer treatments, music therapy has been found to help reduce pain and discomfort; improve mood and diminish stress; increase quality of life; and allow patients to better communicate their fears, sadness or other feelings.”

When working with a music therapist, there are two forms of therapy in which to participate: active or receptive.

Active therapy is more physically engaging and encourages patients to sing and play instruments. A therapist may have you sing about your most recent doctor’s appointment or play a percussion instrument while talking about your last chemotherapy treatment.

Receptive therapy is simply listening to recorded or live music and uses the therapeutic aspects of music to assist with the side effects of treatment.

Whether you were recently diagnosed, are currently going through treatment, or are a survivor, music therapy can be beneficial in all stages of your brain cancer journey. Music therapy can also be helpful for caregivers, family, and friends needing to find a way to cope with stress, anxiety, or depression.

You can find a qualified Music Therapist through the American Music Therapy Association’s directory.

Sources: National Center for Biotechnology Information, The ASCO Post, MD Anderson Cancer Center