u/Responsible-Cat-4267

I posted a few days back. My husband went from a functioning status quo to semi-conscious with constant seizures in less than 24 hrs.

The swelling is so severe it is causing a significant midline shift. The doctors have him on max dosage of anti-seizure drugs and still could not stop the seizures. The steroids were not reducing the swelling enough. The neuro docs were not willing to directly say it, but the person he was is gone. He was not going to get better. He would never want to be lying is a hospital bed as he was.

I signed the papers today and they transferred him to in-hospital hospice care. The palliative care doctor estimated he has less than 4 days left.

It hurts. I am losing my best friend, the love of my life. And he is still 1.5 hrs from where I live. We had a good 6 months even with the sword of Damocles hanging over us. He was active, capable and doing things right up to the end.

At least the agony of the uncertainty is gone. Things can seem to be going so well. Then a bolt out of the blue and it is all over.

My husband (61) was diagnosed with GBM Jan 2026. It manifested with loss of motor control on his left side. A week in the hospital, lots of steroids, they got him back to pretty functional. He made it through the biopsy (tumor was ruled inoperable), the chemo/radiation with only a few issues when the docs were reducing the steroid dose. He had improved and was close to full (normal) functionality. Able to walk unassisted, care for himself, do some light chores. The NO put him on Keppra as a precaution.

Out of the blue Sunday night he had a major seizure - his entire left side was twitching/jerking. A trip to the ER - they had trouble stopping the seizure - like 3 hours of constant jerking. I believe they called it a complex partial seizure. When it started he as able to talk and coherent - as it progressed he got much less so. I don't know if that was the condition or all the drugs they were giving him. When it was reduced to mostly facial twitching, he went to sleep and they airlifted him to another hospital.

I sit at home with my husband in the hospital 1 1/2 hours away. And I have to run our business so we have income to pay for all this. No family able to help.

There are no local cancer support groups beyond one dedicated to breast cancer. My computer can not due video meetings. I feel so alone.

Is this the beginning of the end? The doctors are focused on trying to control the seizures and get the swelling down. They can't say how much left side function he will get back. My husband hates being incapacitated and will be miserable if he can't care for himself. He is more afraid of loosing his self (memory, being able to reason & communicate).

Things were going well and then suddenly they aren't. I hate this disease.