Supporting Glioblastoma Patient: What can I expect as the caregiver?

@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

We are on very similar paths. My wife stays active, with taking daily 1-2 mile walks. She is also on a keto-genic diet- no sugar and low carbs. She is also on a strict supplement regimen to decrease inflammation and boost immune system. Despite all this, the fatigue is real, and she often has to push through it. I know everyone is different, but generally anything he can do to improve his health can be helpful. Fresh, organic, low sugar fruits and veggies; fresh air and sunshine ( wear sunscreen and cover up when undergoing treatment); and something we need to do more of: laugh and love life! Feel free to write back- we're all in this battle together.

@mattk56 hi have you seen any changes being on the keto diet. There is a doctor in Boston who has written many papers on keto helping with GLB recovery. He doesn't get a lot of attention from the medical profession but seems pretty serious in his approach

@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

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.

@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 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

@annagayle
Your son has hit a stage with glioblastoma that can be pretty common. He probably just wants to sleep. You can play some of his favorite music that might stimulate his brain. Do you have nurses aides whom come to help you? While your son is in bed, you want to keep him comfortable. Bed baths, skin care, oral care, anything you can think of that will be comforting. These are skills that the nurses or nurse aides can teach you. And talk to him. Talking to your son is so important! Some researchers and doctors believe that a person can hear until they no longer can
As far as funding, the hospice social worker is the best person to ask. Every state is different so I can’t answer that question. But you can try calling your state’s Agency on Aging and ask for guidance. There is probably an office in your town.
Are other family members able to help you?

@annagayle I found information on Area’s Agency on Aging. This discussion. that was posted a while ago, has lots of info that you will find helpful.
https://connect.mayoclinic.org/comment/1489908/. I borrowed it from @kedim .

@becsbuddy
Thank u for all your kind words ,,,info. I will ask his hospice nurse about some things...she will know where I should turn to. And yes, Justin has a 24 hr life partner/caregiver who is a godsend to us..his name is Oscar and he is amazing. Oscar provides 90% of Justin's care..
Once again thank u..