Brains for the Cure

Get Help With Brain Tumors

Caregiver

Stress and Burnout in Brain Tumor Caregivers

by

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

by

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

by

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.

Staying Strong as a Caregiver: Day to Day Life Changes

by

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.

Staying Strong as a Caregiver: A New Series

by

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

Courtney Benisch, her family, and Team ekSTRONG participate in their first HFTC Metro KC 5K in 2016.

Hearing the diagnosis of brain cancer affects not only the patient immensely, but the family and friends as well. In 2019, 80,000 people will be diagnosed with brain cancer, which means at least 80,000 people will become a caregiver as well. In most cases, the primary caregiver is a spouse, partner, parent, or an adult child. When family is not around, close friends, co-workers, or neighbors may fill this role. The caregiver has a key role in the patient’s care. Good and reliable caregiver support is crucial to the physical and emotional well-being of those living with a brain cancer diagnosis.

Many treatments today are being shifted to the outpatient setting, where the patient does not need to be admitted to the hospital to receive treatment. This means someone is needed to be part of the day-to-day care of the patient. As a result, caregivers have many roles which continuously change as the patient’s needs change during and after cancer treatment.

Two months before my 23rd birthday, I became a caregiver. In March of 2016 my mom was diagnosed with a Glioblastoma. She fought this disease hard and there was never a day she didn’t have a smile on her face. Just nine months later, my mom’s battle ended, but my role of being a caregiver did not stop.

As a caregiver who was younger than most, I went from being a 20-something working three jobs and living with friends to moving back in with my parents, working one job, and becoming a caregiver within a matter of 24 hours. For me, my step-dad, and my brother we knew instantly that this is what we had to do.

There are things as a caregiver you never expect to do and that is by far the hardest part. My mom had severe balance issues due to the location of her tumor, so we always had to help her walk, just like when she helped me learn how to walk. We had to reteach her how to brush her teeth using tips from occupational therapy. When a chemotherapy treatment gave her blood clots, I had to learn how to give her blood thinner injections. Most of all, due to her tumor placement, her memory and cognition were severely affected. We had to learn patience beyond anything I’ve ever managed before. As any caregiver knows, it is hard watching your loved one be consumed by this horrible disease, but know they appreciate everything you do for them.

At my events with Head for the Cure as a Regional Relationship Coordinator I always talk about how as a caregiver, we’re in a club we never chose to be in, but we wouldn’t change it for the world. Caregiving doesn’t have a stop date. I believe once you are one, you never get rid of the title because you dedicated a portion of your life to your loved one when it mattered the most. Processing that takes time and that is part of the healing journey. Everyone handles being a caregiver in different ways. But one of the most important things I learned is to take care of yourself as well.

This is the first piece in the “Staying Strong as a Caregiver” series written by Courtney Benisch

Courtney is a graduate of Missouri State University with a Bachelor’s Degree in Public Relations. She began working for the Head for the Cure Foundation in August 2018 and manages their Midland, Central Texas, North Texas, San Antonio, Houston, and Phoenix 5K events.