“Nothing prepares you for dealing with a loved one with glioblastoma. I always felt I could turn to BTN for help and support. They made the journey much easier. I can’t imagine what it would have been like without them.”
Kate, BTN Caregiver
For a couple of years my brother Dave had memory problems and would buy ginkgo biloba hoping it would help. By 2020 I had to take over his affairs because he was unable to do so himself. I lived in Montana and he lived in northwest Indiana. I had to set him up for food stamps, rental assistance, Medicaid, and Social Security retirement. I couldn’t make an appointment with a neurologist without insurance. In late January 2021 an MRI revealed a huge brain tumor that covered almost half his brain. Biopsies from surgery in early February confirmed cancer. After his hospitalization the oncologist said it was an astrocytoma and recommended follow-up with a neurosurgeon at Northwestern Medical Center in Chicago. In mid-March he was feeling horrible and underwent surgery again. By then he was aphasic at times and his personality had changed.
It was around this time I connected with My Navigator. We had an appointment for her to call me. Her first words were “Hello.” Instead of returning her greeting I unexpectedly burst into tears and said, “This is so horrible!” My Navigator was so kind and understanding. From there we discussed the issues and she obtained his medical records.
By this time Dave was bouncing around nursing homes and local hospitals because of COVID and an infection. He became difficult to deal with, so I contacted Northwestern to transfer him there for help. Upon his release his discharge papers revealed that during surgery he had previously been found to have a grade 3 glioma, and during this surgery he was found to have glioblastoma. I was very angry that this had not been told to me after his surgery. Astonishingly, doctors there still recommended treatment, but after reading medical articles I learned that after ten weeks it was unlikely treatment would change the outcome. I also felt he wouldn’t tolerate treatment.
This is where My Navigator’s support was enormous. One of the nursing facilities would not let his daughter speak to him by phone at the nursing station. My Navigator knew this was wrong. By this time I was starting to think he needed hospice. It was an extremely difficult decision, and I don’t think I could have had confidence in my choice without My Navigator. She knew the medical side of the situation and I could discuss it with her in a way the doctors seemed unable to.
After I decided to place him in hospice I researched the Medicare website to find the best two options. I was not up for contacting hospices, so the social worker reached out and gave me her perspective on them. She also contacted the nursing facilities I thought looked promising. One called me and they took him in.
The hospice I chose turned out to be spectacular. My brother had been a guitarist and the make-wishes-come-true coordinator brought a friend who was an acoustic rock guitarist. It was magical. My brother became himself again, as much as his tumor allowed. He lived another 11 months. Some staff at the nursing home cried when he died. I sent My Navigator pictures of a visit he made to listen to the guitarist play at a local pub—again facilitated by the hospice.
Nothing prepares you for dealing with a loved one with glioblastoma. I always felt I could turn to BTN for help and support. They made the journey much easier. I can’t imagine what it would have been like without them.
Submitted by Kate, BTN Caregiver
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