Tom & Bernadette, November 2018 in Cienfuegos Cuba Mountain Park. “It was here first symptoms appeared but we did not know it. It was a rocky path up the mountain to view the falls and scenery. Bernadette could not keep up. She was upset because she felt she was holding me back. I told her we are doing fine. We blamed it on being tired. In retrospect her feet would not go where she wanted them placed.”
A cancer diagnosis is a devastating new reality for the individual facing the disease and their surrounding family and loved ones. Amidst the overwhelming number of questions regarding treatment options, a new way of life sets in.
Being a caregiver can be scary. Because of this, NFCR supporter Tom wants to share his experience with others. Tom benefited immensely from the support and suggestions his friends and family could provide. As such, he wants to share his insights for all who seek assistance caring for someone they love, particularly those caring for someone with glioblastoma (GBM), which comes with a unique set of challenges.
He hopes that others will also share their experiences to create a centralized, accessible resource should they find themselves in a similar situation.
Early Indicators of Disease
Tom and his wife Bernadette were happily living their daily life when they noticed Bernadette’s occasional fumbling for certain words or movements. At first, these actions seemed small and thus insignificant, attributing it perhaps to age. But as a registered nurse certified in Gerontology, Bernadette’s instinct kicked in, and concern quickly grew about the possibility of a brain tumor. Bernadette was then diagnosed with Stage IV glioblastoma in December 2018. She continued to lose her motor skills and inability to communicate and grew frustrated with her diminishing abilities.
Consequently, Tom became Bernadette’s full-time caregiver while she sought radiation and chemotherapy. Bernadette received speech and physical therapy at home.
Cancer Caregiver Tips from Tom
While caring for his wife, Tom observed three critical areas of her life that needed special attention and extra care: her comfort, her movement and mobility, and her communication.
Because GBM endangers the brain, there are recognizable symptoms that help you provide better comfort and ease of day-to-day management. Symptoms of brain tumors can include:
- Muscle weakness or loss of balance
- Memory problems
- Nausea and vomiting
- Speech problems
- Loss of appetite
- Blurred or double vision
- Mood or personality changes
- Changes in sensation
- Numbness or tingling
Tips for Improving Comfort
First, understand what goes into creating a comfortable environment for your loved one and commit to building it. For example, Bernadette would become upset if the TV was turned off, so Tom ensured the TV was always on in the background. She also requested Dr. Seuss’ ‘Yurtle the Turtle’ be read to her, which Tom happily obliged, despite confusing them. Loud noises were also avoided in their home after Bernadette received her biopsy.
Knowing they were possible, Tom posted instructions on identifying a seizure in their home and asked any guests to read them while visiting. This simple step ensured better preparedness and awareness of all surrounding Bernadette.
At mealtime, Tom provided options for Bernadette to choose from rather than forcing discomfort by relying on her to communicate her preferences. Tom’s actions eliminated unnecessary burdens from Bernadette to allow her as much ease as possible. Usually, he was rewarded with her loving smile.
Additionally, singing with friends became another comfort and joy for Bernadette. Her speech therapist also encouraged her to do acapella singing as a beneficial breathing exercise.
Eventually, Bernadette’s mobility declined, and they needed to find ways to address the discomfort this brought. For instance, since she spent more time sitting on the commode and in bed, Tom made sure to apply skin crème to help alleviate and prevent sores.
Tips for Maintaining Movement and Mobility
As Bernadette’s mobility decreased, there were a couple of insights Tom learned early on. Such as:
- Movement on one side of her body became more difficult than the other.
- Consequently, shuffling was easier to accomplish using one side of her body.
- Her lack of mobility did not imply a lack of strength but rather that the brain’s communication could not transfer to muscle movement.
With this knowledge, Tom began improving accessibility across their home and to and from their required appointments.
First, they installed safety grab bars throughout the home as a precaution. Then they secured furniture sliders that would help quickly move furniture while assisting Bernadette to move about.
A Lazy Susan from a friend’s dining room table became another essential piece of equipment for Tom, as it helped within the home and in public. With the Lazy Susan, Tom could help Bernadette stand upright and rotate it to position her in front of her destination.
Another surprisingly versatile tool was towels. By laying down a towel before transitioning Bernadette, Tom could more effectively shift her body into a more comfortable position. Towels were used when traveling to appointments and throughout the home.
Finally, a leather power lift chair made Bernadette’s favorite parts of her home still accessible to her, such as her sunroom. Leather seats made a big difference in facilitating movement.
Tips for Facilitating Communication
Throughout treatment, Bernadette grew frustrated with being unable to communicate. Her requests and thoughts became unexpected and difficult to relay. She felt immensely accomplished when her care team finally understood her.
Preventing multiple conversations from occurring around Bernadette was essential. Otherwise, she would get frustrated not being able to follow along. When communicating with her, Tom also encouraged simple conversation that could be easily maintained using yes or no answers. Occasionally, Tom would use a variation of the game charades to guess what word she was trying to say. A dry-erase board throughout the house helped fill the other gaps in facilitating the conversation.
Combatting Cancer through NFCR Research
Despite doctors predicting she had about nine months to live, Bernadette lived for just three months after her diagnosis, going to sleep in March 2019. The average life expectancy after a GBM diagnosis is a dismal 14-16 months.
NFCR believes GBM AGILE is the solution to improving these outcomes.
GBM AGILE is a paradigm-shifting clinical trial system that efficiently tests new treatments, advancing effective ones faster and rejecting ineffective ones quickly. Learn more about this innovative program, including trial sites that may be enrolling patients. Increased treatment options for GBM patients provide the hope that their prognosis can improve.
Similarly, enhanced caregiving support can go a long way to improving cancer patients’ quality of life. Throughout his experience as a caregiver, Tom realized that he often had to think outside the box. Above all, he advises patience, patience, patience.
NFCR encourages you to help us add to the list. Please send us a note about your experience at firstname.lastname@example.org. We also hope these tips bring comfort and ease to you and your loved one.