My 88-year-old father was in pretty darn good health when I noticed over the phone that his words were getting jumbled. I thought maybe the first time he was just sleepy, so I waited another week and talked to him again. This time, the words were coming out even more jumbled. I urged my mother to get him to see a doctor and maybe have some tests done because I was worried about an aneurysm or a stroke.
On June 30, 2024, they went in for a battery of tests and by the end of the day were told that my father had a terminal glioblastoma tumor on his left temporal lobe affecting his speech and growing rapidly. This news devastated my family, and his many many friends in the community. My dad was a vibrant, social, soulful guy who loved art and loved to garden. He could talk to anybody about anything — nobody was a stranger to him.
The fact that his communication skills had been scrambled upset him, but he soldiered on, and the surgery was scheduled for early February. After a “successful” surgery (we were told the tumor was fully removed), I knew that the truth of the matter is that this kind of aggressive cancer, glioblastoma, cannot be fully removed.
The surgery affected his cognitive abilities, and he reverted to very childlike behaviors and understanding of simple things. This put an extra strain on the family, but I was mostly concerned about him. I dropped everything in California just before surgery to spend time with him, and I stayed for the month of February so that I could manage his hospital stay, therapists, and his potential rehab transition.
Somehow, we pulled off getting him home temporarily, so he could sleep in his own bed and wake up on his birthday. However, the next day we had to take him into the rehab facility. I was happy with our choice, but he was a little resistant. That said, I had to get back to life in California, so I left him in good hands and expected to go back at some point soon.
My parents have a Medicare advantage plan, and, instead of allowing him to stay for 30 days if they only had Medicare, this plan reassesses every few days…and he had to leave two days after I got back to my own home. Needless to say, the month of March was difficult for my mother and for him as his condition worsened, and his cognitive functioning never really returned.
We were already grieving, as was he, and he could even say that he was going to die, but it was in flashes of lucidity swirling around in the whirlpool of confusion. I’ve never experienced anything so tragic. I came back to him in April, stayed for the month, and he was doing relatively well — until suddenly he wasn’t.
He lost control of his right side, and we ended up having to take him back to the hospital. He never came home again. We found a memory care assisted living place for him. This was difficult for all involved because he was a very big man, 6’7” with basically zero mobility, but the caretakers at the facility did the best they could, and I was happy with his care there. His room was cozy, private, clean, and new, but I don’t really think he cared. That was basically for us. He tried to get up a few times and fell and had to go back to the hospital, ultimately coming back to the room, and continued to decline.
I stayed all of April and came back to California in May for a bit of respite, and to finish up the school year (I was teaching). Dad passed on June 14, 2024. From the time of diagnosis to the time of his death was 4.5 months. The day he died, that time span felt like a blink of an eye. But while he was suffering through it, 4.5 months felt like 45 years. I don’t know how else to explain it.
There is nothing redeeming about glioblastoma. There is nothing good to say about it. The cancer is not just in his brain, but in the hearts and minds of all connected to the victim of this awful disease. Sometimes I wonder if he really even should’ve had the surgery… I know he would’ve passed sooner, but perhaps his cognitive function would’ve been intact longer. And who knows what kind of pain he would’ve been in… Hindsight is not always 20/20. I miss him every day, but I have never regretted spending one moment of time at his side when he was going through this.
Everything was put on hold when we received the diagnosis and prognosis. I went into full-time caretaking mode, but also had a life, a full-time job, and students back in California. It was hard to juggle this, and there had been many changes where I worked, so after my mom and dad were asleep, I would do my work until about 2 a.m. and then get up and do it all again.
Something outside of me gave me the strength to keep going and to have patience. I would lose patience with people who weren’t patient, though, and I crossed paths with so many angels who called themselves therapists or care caretakers, nurses, and friends that it restored my faith in humanity — enough to get me by.
There is support out there for the caretakers, but you do have to look for it. It doesn’t matter if you disagree with someone that you love, it doesn’t matter what your political affiliation is, it doesn’t matter what religion you are, what country you are from, or your economic status. What matters is what you contribute to ease pain of others suffering. And to do as much as possible to stay connected to the person who is suffering, the person you love. Hug your people. Set aside work, set aside cleaning the house, set aside everything.
