Husband Glioblastoma Multiforme 4 behaviour

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Husband Glioblastoma Multiforme 4 behaviour

by Nursekaz on Mon Jan 09, 2017 08:02 AM

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Hi my husband was diagnosed in November 2015 with GBM. Ashes had surgery and is currently having Chemoradiotherapy. He's had to stop driving and working but is doing fantastically well in coping with all his treatment. My question and problem is that he is changed from the surgery. Sometimes the changes are subtle and others don't notice them other than our 2 daughters aged 24 and 25. He can be horrible critical and verbally very abusive. I'm finding this difficult as I'm damned if I do and damned if I don't. We are only to speak of positive things although we have all our affairs in order. Before this he was a night shift worker so we didn't spend a lot of time together. I'm still working 2 days a week and this is a blessing but I have a constant knot in my stomach and am tired of hearing enjoy every moment you have with him. I feel guilty but I'm already exhausted and have spoken to his Drs but he is pleasant to all others. Any helpful advice? Cheers Karen

RE: Husband Glioblastoma Multiforme 4 behaviour

by modesta on Mon Jan 09, 2017 08:16 PM

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Karen, I am sorry to hear about you husband. I know first hand aboutthe personality change.  I have no advice, we went thru it for 31 months and there wasn't anything that helped.  I usually has to do with where the tumor is - again I am sorry.

Modesta

RE: Husband Glioblastoma Multiforme 4 behaviour

by Nursekaz on Mon Jan 09, 2017 08:19 PM

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Modesta, Thank you so much for your reply. It's a comfort to know that it's not just me. It's so awful. But thank you again Karen

RE: Husband Glioblastoma Multiforme 4 behaviour

by Wifeofmichael on Tue Jan 10, 2017 02:02 AM

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I'm so sorry your family is going through this. Yes, sometimes there is a pretty dramatic personality change. It's harder to deal with and stay objective when it's that subtle stuff. I kept thinking it was just me or if I did ( fill in the blank) better, faster, anticipated what he needed better...blah blah blah. i finally got convinced by his oncologist that it was the cancer talking, not him. Any cancer is devastating, they're all horrible beasts. Brain cancer has the added component of personality and behavior challenges. Read up on the parts of his brain affected by the cancer and treatment. Loss of control, fear, grief gets jumbled up in there along with the specific personality and behavior changes. Then we all have our baggage thst comes from just being human. It's really hard but this site has good resources and lots of understanding.

RE: Husband Glioblastoma Multiforme 4 behaviour

by jenniferleigh on Wed Jan 18, 2017 03:07 AM

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My husband has a grade 3 astrocytoma and all three of my children (ages 22,20,15) has noticed a significant change in him.  We have fought this beast for almost 5 years.  March 31st will be 5 years he had a grand mal seizure and discovered the first tumor. It was removed in July 2012.  Chemo was an epic fail.  Radiation worked but a new tumor showed up in the radiated field 3 years ago and nearly killed him.  Avastin has helped the tumor stay put.  He cannot work or drive.  He has become belliegerent about his beliefs in politics and religion, hostile, and never smiles anymore.  It's like the man I married is gone. Our marriage is just a signed piece of paper now as I struggle with every aspect of it. Thank you for posting all of your struggles.  This is the first time for me to reach out like this to a group.  I am glad I am not the only one struggling. People who do not live in my circumstances are somewhat judgemental towards me.....they simply have no clue what I go through every single day.  

RE: Husband Glioblastoma Multiforme 4 behaviour

by Wifeofmichael on Wed Jan 18, 2017 04:38 AM

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I have retreated from folks who don't get it and gravitate towards those who do. I've had people approach me and say they know what I'm going through, but I've also been on the receiving end of some pretty clueless remarks. It's can be a schizophrenic existence so do whatever it takes to stay centered and grounded. I go to great lengths to create an environment that keeps my guy from getting riled. And we don't go out to stores or restaurants very much. It's overwhelming and unfamiliar and noisy. He goes 'lower brain' on me and he's fighting mad or panicked and fleeing across the parking lot. He watches lots of tv because he's lying on the couch most of the day. If he's yelling at the news( who isn't these days) I suggest a change in activity, ask for help which gets him refocused. or get him out of the situation that is pissing him off. Let's go for a walk, I need help with ---- I suggest a movie or the old tv show network. Westerns movies are great and seem to keep him calm. good scenery, easy to tell the good guys from the bad guys and happy endings. No dark, negative stuff, violent gory or degrading movies or shows in our home. Not with that Astrocytoma dragging him down.... Look at the caregiver support message board, there's lots of understanding there.

RE: Husband Glioblastoma Multiforme 4 behaviour

by modesta on Wed Jan 18, 2017 03:34 PM

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Wifeofmichael, it's funny you talk about westerns - that was one of the things that did keep my husband calm.  Even when he got to the point of not opening his eyes much, we didn't always know if he was awake until we tried to turn the channel and we would point at the TV (meaning "put it back") without even opening his eyes.  I think you have some good ideas, I did the same thing, as far as distracting him from what was upsetting him.  Best of Luck/lots of prayers for all!

Modesta

RE: Husband Glioblastoma Multiforme 4 behaviour

by jenniferleigh on Wed Jan 18, 2017 08:53 PM

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Would your husband become mesmerized by the TV?  My husband will just stop walking through the room to a task he was doing to watch a commercial/show and forget what he is doing.  Or he has become mesmerized by social media, sit for HOURS at his desk.  I wish I could distract my husband from what upsets him but its usually me that he gets upset with!! LOL. 

RE: Husband Glioblastoma Multiforme 4 behaviour

by Nursekaz on Thu Jan 19, 2017 01:54 AM

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Hi Jenniferleigh my husband Barry was diagnosed with a Stage IV Glioblastoma in November last year. He's had surgery and is just coming to the end of 30 radiotherapy treatments with chemotherapy everyday for the 6 weeks. He'll have a rest for 4 weeks and then an MRI to see where we're at. Some days are lovely but most are a grind as he is extremely difficult. His horrible mood swings have calmed a little as his cortisone dose is now nil. The radiotherapy Oncologists and the Chemotherapy Oncologists are about this but if there's any swelling back on it no questions. I want you not to feel alone I sometimes feel like I'm going nuts as he can be Mr Nice to others. I've said it before we are all fighting this horrible cancer. Day in day out and it's a pig of a thing. My oldest daughter says to me Mum we lost dad the day of his surgery and she's right

RE: Husband Glioblastoma Multiforme 4 behaviour

by Roxie12345 on Tue Jan 31, 2017 04:10 PM

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My mother who had GBM stage IV had a change in personality as well. She was always sweet and rather soft-spoken, but this changed with her illness. She seemed most upset with my dad- but he was doing the best he could. He didn't take it to heart- but I know it was so difficult for him. He was the main caregiver and did almost everything for her. There is no doubt in my mind that it was the brain tumor that caused it. There's no way she would have treated him that way before- especially since he was doing everything he could for her.

I would say hang in there and keep remembering that it is not him- it's the tumor.

God bless.

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