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Supporting Glioblastoma Patient: What can I expect as the caregiver?
Caregivers | Last Active: 9 hours ago | Replies (33)Comment receiving replies
Hello. I know I am late to the comment but I am a caregiver for my mom who had a grade 4 glioblastoma removed in October 2023. It was smack dab in the middle of the left side of the brain where we are. All our functions and speech etc. most people only live 18 months without treatment and she we were brought in one night after her surgery and told she wasn’t going to make it. Then all of a sudden she opened her eyes and asked for water and then everyday was a struggle, her right side partially paralyzed from the tumour removal along with really bad aphasia. But then all of a sudden she started getting a little feeling back here and there and she was healthily enough by August 2024 to start radiation and chemotherapy. She rocked it but after it was done is when she was super sick. All the way till Christmas. Then most of the radiation was out of her system and now she is still here and we are on month 20!!! So I suggest radiation if possible. It is worth it and did give her time and now they are saying she might get years. They don’t really know but she is the exception to the rule. She is in the 25% that live past 18 months. If you need anything at all or anyone reading this, please reach out. I have been through it all and trust me I can help. I can also tell you how to get funding and care. There is so many resources out there but you have to find them on your own. It’s sad really. You would think healthcare workers would help but they don’t. You will find that, help is very minimal and they will push you to take care of your loved one on your own but trust me, it takes a village. You need supports and help in so many ways. Please please reach out. You’re never alone. I will pray for you and your husband.
Replies to "Hello. I know I am late to the comment but I am a caregiver for my..."
Hello,
Do you know any agencies that could help watch my partner so I can take some time off?
Thank you.
I could use some advice with my niece she just turned 26 yesterday and we are looking at long term care now and is struggling
@justasmalltowngirl hello I am new to this group. My mom has glioblastoma grade 4 and was diagnosed last year dec. had surgery on nov.1 and then we got the pathology report back on dec.1.
She did radiation 3 weeks, had c-diff she had a really hard time. She did 6 months of chemo.
They told us the tumor didn’t comeback 2 weeks later we met with the surgeon and she had another surgery . She was
Monday surgery day, Tuesday icu and Wednesday home. Crazy right?
She ended back in the hospital 2 week after that due to a fall and hurt her head. They did about 4 ct scans. They didn’t say much but a little inflammation. Now all she does is sleeps all the time and is really confused!!!! I have been trying to get her to urgent care to get her 2 staples in head removed but she has no memory. Is this normal? Do you think she will return to normal or is this the new norm?? Nobody is telling me nothing.. is she declining? I don’t know if you can answer me but at least give me some info if you can that is… thank you so much for reading this long msg! Amber
@justasmalltowngirl ..
Hello I am caregiver to my 34 yr old son that has stage 4 gliobastoma and I would appreciate any and all info for caring, funding or whatever u would be willing to pass along..I pray that your mother is still doing good...thanks
@justasmalltowngirl Hello, I was just wondering how your mom is doing. My partner is starting 5 days on, 23 off chemo and after that he will be monitored with MRI scans. So far, apart loss of peripheral vision, you wouldn’t know anything was wrong. Your post about your mom has given me hope. We’re still at the 15-18 months prognosis, the consultant wouldn’t budge on that. We’re in the UK, not that’s relevant. I really hope your mom is still doing well and that you don’t mind me asking about her.
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Thank you for your post. I am the caregiver for my son. We are working with three hospitals and the staffs have been great. However, we are going to need funding resources soon. They have not been able to provide and suggestions so far. I’m trying to research between treatments etc. I would appreciate any suggestions on organizations etc to reach out to.
Thank you