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Staying Strong as a Caregiver: Taking Care of Yourself

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

The role of being a caregiver is all in the name, caring for someone else in any type of capacity. We care for our loved one battling a terrible disease 24/7, but do we ever return the favor to ourselves? Being a caregiver for my mom took a toll on me and my family mentally, physically, and most of all, emotionally. We never thought to take a step back and care for ourselves when my mom was fighting her battle with brain cancer because our focus was on her, and any doing anything else felt selfish. I want you to know that you are not the only ones who have felt this way.

Being a caregiver is a title you will have for the rest of your life, but at a point you realize it goes both ways: caring for your loved one and yourself. After my mom was diagnosed with a Glioblastoma, I naturally took the role of the leader. I made sure my mom, stepdad, and brother were all doing okay, but I never looked inward. I internalized everything because I knew I had to keep strong for my family.

After my mom passed, I moved out of my parents’ house, moved back in with friends and returned back to work. I thought that going back to living how I did before my mom got sick was the easiest way to grieve. I would distract myself by immersing myself into work, going on trips, and distracting myself any way I could. I was wrong and I am still paying for it to this day mentally and emotionally.

According to the Anxiety and Depression Association of America 40%-70% of caregivers show symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression.

There isn’t a certain way to process trauma or grief, but there are healthy and non-healthy ways to go about it. There is a reason why they call it the “stages” of grieving because you go through them in different ways and at different times of your life. Knowing myself, I knew I had to talk to someone about what I had gone through. The hospice facility that my mom was at offered counseling, so I started going right after she passed.

When I moved back in with friends, I started to feel like a “normal” 20-something again, but I was still internalizing every feeling about my losing my mom. My new normal wasn’t what I thought it would be. I would get headaches from the stress, my anxiety skyrocketed, and depression set in. I knew at that point I would need to see a licensed psychologist. It took a while to find the right one, but when I did, it helped immediately.

My family and I have learned to manage our grief in different outlets that work for us. We still participate in Head for the Cure events around the country to honor my mom. My step dad helps out with a local non-profit, BeHeadStrong, since they were a huge part in helping us when my mom was sick. Also, as a high school teacher my brother has connected with other students who have gone through the same thing.

There is no shame in going to talk to someone about your life and your feelings, and as a caregiver I felt like there was a stigma about going to therapy. Even three years after my mom’s passing, I continue to go because the one thing I’ve learned is that grief will be with you forever, but you are in control of how you manage it. As a caregiver, at any age, you need to take care of yourself too. Whether it is taking mental health days, going to concerts, talking with a therapist, the options are endless.

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Choosing the Right Doctor for Brain Tumor Treatment

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Finding the right doctor, and entire treatment team, for brain tumor treatment is incredibly important for a patient. Doctors and survivors from across the country share where they see the importance in choosing the best team for treatment.

Dr. Nina Paleologos of Advocate Aurora Health shares the importance of choosing the right neurosurgeon based on the type of tumor and placement. An example she shares is having surgery for only a biopsy versus having a tumor resected. In the case of having a tumor resected, depending on its placement, a neurosurgeon with experience doing awake craniotomies could be an important factor to choosing the right surgeon.

Dr. Roy Jensen of the University of Kansas Cancer centers advises most if not all patients to seek second opinions when available. He also encourages seeking treatment at a NCI Designated Cancer Center when the option is available. When looking at centers for second opinions, the doctor that provided the initial diagnosis should be able to suggest options to you.

Hillary is a grade III/IV brain stem astrocytoma survivor and was treated at Texas Oncology. After her first MRI, she immediately knew she needed to see a neurologist, but which neurologist was the real question. With the help of family physicians she found Dr. Groves. Hillary notes that it’s important to find someone you can be comfortable with throughout the course of treatment and after.

Dr. Nick Avgeropolous from UF Health Cancer Center shares the value in feeling confident in the treatment team you’ve assembled. “But, I think that there needs to be also some trust in the person who’s caring for you or the team who’s caring for you or some independent validation or verification. And that’s how confident that a person is doing the right thing or making the right decisions, irrespective of outcome.”

Lisa is a ganglioglioma survivor and continues to manage her symptoms. Lisa knew she had the right surgeon from the moment she met him. She felt a level of comfort with him that was important to her and her family throughout her care, and she describes him as caring, funny, and on top of everything.

Colin is a grade II oligodendroglioma survivor and was treated at MD Anderson. With Colin’s tumor not needing immediate surgery, he and his family took the time to find the right hospital and doctor for his surgery and treatment. From the recommendations of family, friends, and research, Colin chose to seek treatment in Houston at MD Anderson.

Brains for the Cure maintains a close relationship with providers at many of the country’s best brain tumor centers. Explore these sites on our “Find a Doctor” page. Many of these sites are National Cancer Institute designated research cancer centers, and members of the Brain Tumor Trials Collaborative.

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: The Year of Firsts

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

From the second your loved one gets diagnosed with brain cancer your world is turned upside down. From that point on, your life will be a new kind of “normal.” There are many aspects outside of daily life that will be different; one of them being celebrations and holidays. The first year after your loved one gets diagnosed, you will see these special days in a different way and getting through them is different as well.

When my mom was diagnosed with a Glioblastoma in March of 2016, it was a week before her 50th birthday. We had been planning a surprise party for her, but life had other surprises in store for us. We shifted around a few things, but we were able to have a little party for her in the hospital as she was recovering from surgery and in physical therapy. We still made it a special day, despite the changes in our lives.

We also celebrated my birthday, as well as my stepdad’s, and Thanksgiving when my mom was in treatment. Celebrating these holidays while a loved one is going through a disease like this is hard, but it also makes you look at them with a different perspective. We didn’t know if it was going to be her last few holidays with us, so we made the most of each and every one of them.

The hardest part for my family and I each year is Thanksgiving through Christmas. Those should be the holidays where you are the happiest, but it has been the toughest part of the year for us by far. My mom was in hospice for Thanksgiving and passed a few weeks later on December 10th. We were so thankful we had family come into town that year for Thanksgiving and be by our side for the hardest part of our lives.

Christmas was my mom’s favorite holiday and she decorated our house every year. After her passing, we weren’t sure if we wanted to hang up decorations. It was hard, but we put up the Christmas tree anyways and attempted to make it look like she would have. My brother, stepdad, and I did our best, and I think that was a good starting point in the grief process. It was the first major holiday after her passing, and we got through it together as a family.

The first year after your loved one’s diagnosis or passing is simply put, hard. Especially when it intertwines in the grieving process. For me, I mentally checked each holiday and birthday off a list after my mom passed, and after the first year, I felt like I had a weight off my shoulders. I thought if I can make it through the first year of all these special moments in my life without my mom, I could keep doing it. It makes you stronger as a whole and also makes you lean on your family members more.

Holidays and birthdays have been different since my mom’s passing, but I’m starting new traditions with my family and friends. The celebrations are a little bittersweet, but it also makes them a little more special. As a caregiver, you sometimes feel bad for celebrating these types of days when your loved one is going through this horrible disease, but you shouldn’t. If you weren’t going through this situation, you would still be celebrating birthdays or holidays, so why would this make it any different? This disease puts a new perspective on life, and you should celebrate that to the fullest.

Acts of Kindness: Remembering Steve Damm

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10 years ago, family and friends gathered to celebrate what would have been Steve Damm’s 41st birthday. They released balloons with personal notes to celebrate his life after he passed away from a glioblastoma.

The next year, Tyra, Steve’s wife, and their two children had a cake, but they weren’t sure how to celebrate. “And then it was weird. It was a sad day and we were like it’s really horrible to have a birthday when the person’s not there. And we didn’t know what to do,” said Tyra.

That birthday inspired the next birthday and the several after. On what would have been Steve’s 43rd birthday, the Damm family created “43 Acts of Kindness”. They were concerned they may not be able to complete the task, but through the power of social media, they had more than 400 acts of kindness that year.

Each year this tradition continues in Frisco, Texas, and even across the country and globe. Whether you purchase a stranger coffee or lunch, make a generous donation, or deliver a friendly card, the point is to simply be kind to others.

Along with the Damm Family and Head for the Cure, Brains for the Cure encourages you to be #DammKind today in support of Steve, his family and friends, and all those who have been affected by brain tumors.

Today is Steve Damm’s 51st birthday. Help celebrate his life and legacy by spreading kindness, even if it’s just one act. You can learn more about today’s celebration on the Check on Steve blog.