Hi, I'm 42, with a husband, no kids, no siblings, just a difficult acting father. Not an english native speaker, living in eastern europe, so excuse my mistakes. We don't have hospice care, not many solutions for people in their final days and when they are they are expensive, not covered by insurances and not many available spots. Anyhow I wanted to take care for my mother at home as much as I can.
My mother, 73 now, has been diagnosed with glioblastoma in oct 2023.
It happened suddenly, my parents came to the city I'm living and working as a doctor to have the usual medical check-ups. When we met in the evening my mother said : I noticed that I have difficulties in finding my words for a few days. It was barely noticeable, but she did notice, because she was very good at talking. I, on the other hand, had this problem my whole life.
She thought it might have been a small stroke and I hoped with her, thinking to myself that if this is the only repercussion, it's good. We can manage it.
In 2 days she had an cerebral mri scan and when I looked at the images I knew. I tried to tell myself that maybe is something else, that I'm not seeing things right ( especially as I'm not a radiologist ) so I sent the images to a neurology doctor who confirmed what I saw.
Next it was the usual : surgery, histopathology report, radiotherapy, temozolomide, after that bevacizumab and lomustine, followed by the usual complications , dvt, pulmonary embolism, trombocitopenia and things like that.
The tumor was on her left temporal lobe, the reason it affected her speech. Her aphasia got worse quite rapidly, first there were more and more words she couldn't remember , but she managed to give me a definition and in a few weeks she was talking but nothing made sense and she couldn't understand me..
When she could still talk, the first 2 months, she mostly repeated the same frustrations related to her relationship with my father, her husband, she was stuck on this.
We tried for months exercising, trying to make new neural connections hoping that we can save the ability to comunicate for as long as possible, but things were just getting worse and worse, she was so demoralised, I was too, so in march 2024 when I saw the tumors reappeared I slowly gave up with this. She couldn't read 2 weeks after the surgery and she loved books so much. Tried audiobooks, worked for just 2-3 weeks, she couldn't understand. She couldn't watch tv, just tennis games. Days, weeks, months of boredom followed. Nothing I tried to reduce the boredom worked
We still had our most daily walks, no really conversation, except look the dog, the duck, the river, the sky is beautiful today, things like that. Since may 2024 we couldn't have our walks , she had the pulmonary embolism and after that summer came with very hot temperatures and we couldn't go out at 9 pm when it was cooler and after that she just became weaker and I live on the the 4 th floor with no elevator so it became difficult climbing the stairs.
Unfortunately I'm very bad speaker, not able to ramble about insignificant things, didn't have much to tell, I work with sick people, give bad news and things like that, not things I wanted to chat my mother with at this point. Didn't do anything else at this point except going to work and coming home.
Since august 2024 she started having seizures. After every seizure, there was a week of horror, she couldn't understand she was not able to go to the toilet even with me and my husband holding her, she kept crying and yelling that we don't want to help her , didn't want to use the adult diapers or the mobile toilet chair.
With every seizure I saw her state deteriorating and her right side of body getting weaker.
She had balance issues since december 2023, but she managed to walk in the house. She had some minor falls so we gave her an walking aid which helped when she remembered to take it.
We couldn't leave her alone in the house anymore since august 2024, so me and my husband took turns at missing work, my father is no help, I wanted for her to spend her final days at home so it's just the two of us.
Getting to the toilet got harder with every week, first I could take her mself with her walking aid, then with a rolling chair, then I needed my husband to help me as she couldn't stand on her legs, and after we got so tired and she so weak we installed a urinary sonde.
In the last 2 months she got very restless especially at night. In the last week she barely eat and drink, she keeps choking, her breathing is changing. I believe she is on her final weeks.
Now on me and my need to vent.
I was devasted when I saw the mri. My mother was my friend, we talked almost daily, she was an active woman, taking care of herself, she was still working as an engineer. As a doctor I knew the outcome the moment I saw the tumor. I was hopeless. Everyone around was so hopeful so nobody understood what I was feeling, except for my collegues. The moment I saw the tumor my question was why this tumor ? From so many cancers and tumors that you can work around for years ( and I know because I have a family with a long history of oncological diseases and they are still with us although they have these for 10 to 20 years ), why this hopeless one ? It's hard to know this and not have hope. Somehow it's like she died right then. She was also devasted, although she didn't know that much about this tumor and she didn't search but she had a cousin by marriage who died of a brain tumor in her 30's ( by the way we were both there when she died, me, age 7 and my mother ) In my growing years we had many people died both young and old ( it really affected me - to the point I started crying unstoppable when I saw my aunt with a leg cast from falling on the ice ) . I had some awful years since 2020. I haven't had a good night sleep since august. I barely function. I am feeling guilty for wanting this to be over. I suffer every time I look at her . I want my life back. I want to go out, I want to have walks in the nature, I want to be able to laugh and eat and not feel guilty. Sometimes I got out of the bus early and walked a few blocks , I didn't want to make my husband watch my mother too much. He has already helped me so much and it is not his mother.
Didn't write everything has happened these last 14 months or what I'm feeling. It's already too much, don't know if anybody will have the patience to read this.
I read some of the posts here and felt with each one of you.
It's a horrible disease, takes your loved ones long before death actually occurs. Horrible for the person who has this and for those who care for them.
Hope you will all be able to resist the time you need to be the caregiver, to make peace with yourselves after it will be over and be able to have a live after this.
HI doareu
a warm welcome to the online community. So sorry to hear about your mother. Life is too cruel.
I supported my late husband through the three years of his glioblastoma journey. So much of what you say resonates deeply with me. G was 50 when he was first diagnosed. He was a marathon runner and worked as a senior IT manager. His initial GBM was in Broca's area of the brain and right up until the last few months the majority of his symptoms were cognitive rather than physical which is hard to watch unfold. He too quickly lost the ability to read and could only watch TV shows and films that he had seen before as he struggled to follow new stories.
Something that I feel happens with a glioblastoma journey is that we lose the person we love many times throughout the journey. We grieve them many many times while they are still alive and then again when they pass and that is incredibly hard to process. I understand how you feel,
This is a safe and supportive space so please reach out here anytime. There is always someone around to listen who understands, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
For now though I'm sending you a huge virtual hug and lots of strength.
Love n hugs
Wee Me xx
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