Glioblastoma: Anyone else struggle with being a caretaker?

Hello,

While I can’t relate to the glioblastoma diagnosis as my tumor was and is a mengioma (benign) I know how unnerving my diagnosis is, I can’t imagine how he must feel. It’s not typically a great prognosis. I suggest counseling for both. Also you need and deserve a break. Do you friends/family or adult chit who can help? Does your insurance provide some help? You need to have some time for yourself whether it be lunch with a friend, staying with a friend or getting your nails done. You can’t pour from an empty vessel. Does your husband have a friend who can take him to lunch or bring him dinner to give you a break? There are some Facebook groups who you can get support and vent. Maybe church? Just thinking outside the box. You can private message me. I’m a shoulder to lean on. Where are you located I’m happy to go and give you a break if close.
Prayers for you & your hubby. Mindset is everything maybe a good book about some one else going through same diagnosis. 🙏🫶🏼

My eldest daughter was diagnosed with brain cancer at 29; she was married with 3 small children.

Brain cancer is such a game changer and my heart goes out to you as a primary caregiver.

What I found most difficult, and still do, is knowing what behaviors and changes in her personality are from the cancer itself, or the stress and anxiety of having cancer in her lexicon of life. Her life is no longer "normal" after the diagnosis and subsequent two surgeries.

The best I can do is tell you it is imperitive you find social support in any shape, form or fashion. You cannot be 24/7 and alone socially with a brain cancer patient.

It isn't selfish to seek your own life outside his cancer experience. Yes, you can be supportive and loving, but you must set up boundaries or this disease and medical situation will do you harm.

You must build a life stronger for yourself, so YOU can survive.

It isn't selfish at all as brain cancer is SUCH a game changer.

If he won't get counseling and mental support of himself to handle his emotions - which it sounds like he probably would not - then you get some for yourself.

You providing empathy and caregiving for him does not include tolerating mental abuse of any kind.

My - what used to be kind, loving, and beautiful laughing 30 yo daughter - has changed so much from the cancer, that I have had to distance myself somewhat from her abuses over the years after her brain surgeries. I am here for her if she needs me and she does call when things get heavy as she is not "cured" - she will have more brain surgeries - as her cancer cannot be totally removed - and that is ok.

PM me if you need further support.

Hello,
This right here "depression, anxiety, anger/irratability:mood swings", I had this immediately after I started taking a certain medication following my discovery of Glioblastoma. I was prescribed this because my cancer was discovered after I had seizure and the medical field wanted to prevent me from having more seizures. I lasted 2 maybe 3 weeks on the medication before I told the oncologist, no more, I refuse to be in that awful mood and state of mind. I was given a new drug and have not been in that awful mood since. I am almost at the 2-year mark of when this all started. Briviact is what I take twice a day, and I take it faithfully at scheduled times.
If your husband has checked other options for drugs to take, and he doesn't see better results, then I am sorry for what he is going through. Don't stop checking the options that he may have.
Seek help for yourself wherever you can. God bless him and God bless you for taking care of him.
Sjt

Thank you for the reply. Yeah he is for sure losing his way now. He did better the first couple years. I do have breaks as much as I can. Which is once in a while. It’s just a challenging situation. Thank you for the advice

I appreciate the response. It has helped greatly. I’m so sorry for your daughter and you having to go through this. And her kids too.

I can’t imagine the amount of work and energy you have had to put in during FOUR YEARS! My wife was just diagnosed a few months ago and I am already mentally and physically exhausted. Her tumor was inoperable but we had three hospitalizations in a months time and got started on Chemo and radiation as soon as it was feasible. Her deterioration has been rapid and so it has been difficult to adjust quickly to taking care of her. She was an active, independent gym rat and now she can’t walk or speak. I felt at first that I needed to do it all and found it hard to accept help. My family had to convince me that I couldn’t go it alone but it still makes me feel weird having someone else take my wife to the bathroom or fold my laundry. I haven’t had to deal with verbal outbursts because she lost her ability to speak but I can see the frustration and anger and grief in her eyes but I can’t always figure out what she needs or how I can help. I can’t imagine how you have done it for so long. You must be an amazing person. My wife is not going to be a long term survivor but I know that I am going to need all the help I can get during the time she is with us. She and I have both had to lose our independence and learn to accept the generosity of others.

I am sorry to hear that. You are a very strong person. I can’t even imagine any of that. My heart goes out to you and family. You have to be the strength for your wife. And rely on people to help. I will be praying for strength for you. And whatever time you have left I hope you can cherish it. Even the small moments.

I’m just getting started with my husband’s Giloma treatments he will begin chemotherapy and Radiation on Wednesday! I’m so overwhelmed ! He’s 77 how old is your husband?

My husband is 44.
I’m sure if you are older that would be very exhausting. I hope you have someone to help you. I hope his treatments go well.

Thank you 😊 I will have my daughter and niece come to help🙏🏾