Glioblastoma IV and personality changes

Mia21
Mia21 Member Posts: 2
edited March 2014 in Caregivers #1
My husband was diagnosed with a glioblastoma IV in 2004. His treatment consisted of surgery to remove most of the tumor, gammaknife surgery to impede the growth of what was left behind, radiation and chemo. My question is this, since the surgery his personality has changed in that he becomes extremely angry and frustrated over the littlest things, i.e. a knot in his shoelaces, tooth brushes not aligned properly, etc. I know this sounds like OCD and he gets over it relatively quickly and it's like it never happeend, but at that particular moment in time I hear such anger in his voice that it really stresses me out. We have been married for 23 years and I know he wasn't like this until after the surgery. Am I losing my mind or has anyone else experienced this kind of change after brain surgery?

Comments

  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #2
    Had the same problem.....
    My husband has stage IV colon cancer, and while he was on the chemo, we found he acted the same way. He would forget things we told, and tell us we had not told him that. We could never do things as well as he could. It did eventually go away, so all I can say is hang in there!


    Sue
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
    You are Not Alone
    Hi Mia and welcome to the caregivers board. I was a caregiver for my dad. He passed away in March from ec with mets to the liver. He would have the same symptoms. Freak out over the littlest things. We spoke with his dr. who suggested he start taking ativan for the anxiety, and adderall for the OCD. Both of these worked. I would suggest speaking to his dr about his behavior. Good luck. Keep in touch.
    Tina
  • sippican
    sippican Member Posts: 6
    #4
    personality changes
    My husband has been fighting GBM grade IV since Nov 2009. Yes, his personality became much more angry, impatient and mean. He is like Dr Jeckyll and Mr. Hyde-I never know who to expect. He becomes bothered over the most irrational small things. After the second tumor was removed he has become much more OCD as well. He has thrown away all my things that he regards as clutter, he sprays Lysol everywhere. He gets mad at my children for singing or dancing or making any kind of noise or unexpected movement. He seems displeased with everything about me or our kids and has daggers in his eyes when we do the smallest thing to annoy him. He picks arguments almost every night. He has always been the most thoughtful and measured man; we have had a great marriage for 23 years and this is devastating to me. Understandably he is mad at the world but this is incredibly difficult on us. It is very hurtful; I have to keep reminding myself he can't help it. His father is a neurosurgeon and has confirmed that both the surgery and the chemo drugs will affect personality, exaggerating characteristics that are already there and creating increased irritability.
    He is also on Keppra for anti seizure and steroids which will also cause increased irritability.
    The doctors prescribed Lexapro (anti depressant) but he refuses to take it. I am sure it would help as I have started taking an anti depressant and it has helped me.
    When he acts inappropriately I try to disengage myself and leave the room or go out for a drive until I cool down. Prayer helps a lot too.
    Good luck
  • Tina2000
    Tina2000 Member Posts: 2
    #5
    sippican said:

    personality changes
    My husband has been fighting GBM grade IV since Nov 2009. Yes, his personality became much more angry, impatient and mean. He is like Dr Jeckyll and Mr. Hyde-I never know who to expect. He becomes bothered over the most irrational small things. After the second tumor was removed he has become much more OCD as well. He has thrown away all my things that he regards as clutter, he sprays Lysol everywhere. He gets mad at my children for singing or dancing or making any kind of noise or unexpected movement. He seems displeased with everything about me or our kids and has daggers in his eyes when we do the smallest thing to annoy him. He picks arguments almost every night. He has always been the most thoughtful and measured man; we have had a great marriage for 23 years and this is devastating to me. Understandably he is mad at the world but this is incredibly difficult on us. It is very hurtful; I have to keep reminding myself he can't help it. His father is a neurosurgeon and has confirmed that both the surgery and the chemo drugs will affect personality, exaggerating characteristics that are already there and creating increased irritability.
    He is also on Keppra for anti seizure and steroids which will also cause increased irritability.
    The doctors prescribed Lexapro (anti depressant) but he refuses to take it. I am sure it would help as I have started taking an anti depressant and it has helped me.
    When he acts inappropriately I try to disengage myself and leave the room or go out for a drive until I cool down. Prayer helps a lot too.
    Good luck

    me too
    My husband has glioblastoma stage 4 since Dec 2010, 2 months after our last daughter got married and moved to Wash DC. She and my other daughter have refused to give up hope for a cure, so they keep flying in and hauling him off to Cedars Sinai X4, and now Fred Hutch in Seattle X2 so far. These trips are killing him faster than the tumor and the radiation damage. He has lost the ability to read, to write, to tell time, and he is losing speech. His personality is radically changing, and I get the brunt of that. He can be charming and polite to everyone else, but when he is alone with me, he screams, he yells, he blames me for everything, he barks nonsensical orders at me....etc. I am a basket of anxiety. I can barely function myself anymore. If I eat, I get sick, and have diarrhea from the stress. My only escape is to go to work (I am a general practioner, medical doctor, with is ironic, I know). I am ok at work. Then on the way home my stomach turns to knots because I ddon't know which husband will be there. He sleeps a lot which is the best. Next best is when he decides to putter in the yard, or go into the basement and shred old receipts or whatever. He's quiet and leaves me alone. Then the monster appears when he decides to do something he needs my help with like making a list (he can't write), or paying bills, or anything. He is incoherent and gets more and more angry agitated, loud, scary, and I don't know how to make him quiet down or stop his attack. So far it's verbal, but I know it could turn physical at any time. I am hiring a caregiver tomorrow that was recommended by a friend. He may be a lifesaving buffer if that is where we are headed.
    Living in Terror,
    Tina
  • LilChemoSmoker
    LilChemoSmoker Member Posts: 185
    #6
    Tina2000 said:

    me too
    My husband has glioblastoma stage 4 since Dec 2010, 2 months after our last daughter got married and moved to Wash DC. She and my other daughter have refused to give up hope for a cure, so they keep flying in and hauling him off to Cedars Sinai X4, and now Fred Hutch in Seattle X2 so far. These trips are killing him faster than the tumor and the radiation damage. He has lost the ability to read, to write, to tell time, and he is losing speech. His personality is radically changing, and I get the brunt of that. He can be charming and polite to everyone else, but when he is alone with me, he screams, he yells, he blames me for everything, he barks nonsensical orders at me....etc. I am a basket of anxiety. I can barely function myself anymore. If I eat, I get sick, and have diarrhea from the stress. My only escape is to go to work (I am a general practioner, medical doctor, with is ironic, I know). I am ok at work. Then on the way home my stomach turns to knots because I ddon't know which husband will be there. He sleeps a lot which is the best. Next best is when he decides to putter in the yard, or go into the basement and shred old receipts or whatever. He's quiet and leaves me alone. Then the monster appears when he decides to do something he needs my help with like making a list (he can't write), or paying bills, or anything. He is incoherent and gets more and more angry agitated, loud, scary, and I don't know how to make him quiet down or stop his attack. So far it's verbal, but I know it could turn physical at any time. I am hiring a caregiver tomorrow that was recommended by a friend. He may be a lifesaving buffer if that is where we are headed.
    Living in Terror,
    Tina

    Tina I am so sorry!
    Tina,

    Does your husband qualify for Hospice? They may be able to help as well. I know you are probably scared to death where this is leading at home and hiring a nurse is a good idea, I just didn't know if you had also thought of utilizing their services as well. If he truly can't be cured, then they will help.

    I am so sorry for your situation and I couldn't imagine walking in your shoes at this moment. I pray that you can find a safe place to be in all of this even if it means bringing in outsiders.

    Hugs,
    Michelle
  • jimwins
    jimwins Member Posts: 2,107
    #7
    Tina2000 said:

    me too
    My husband has glioblastoma stage 4 since Dec 2010, 2 months after our last daughter got married and moved to Wash DC. She and my other daughter have refused to give up hope for a cure, so they keep flying in and hauling him off to Cedars Sinai X4, and now Fred Hutch in Seattle X2 so far. These trips are killing him faster than the tumor and the radiation damage. He has lost the ability to read, to write, to tell time, and he is losing speech. His personality is radically changing, and I get the brunt of that. He can be charming and polite to everyone else, but when he is alone with me, he screams, he yells, he blames me for everything, he barks nonsensical orders at me....etc. I am a basket of anxiety. I can barely function myself anymore. If I eat, I get sick, and have diarrhea from the stress. My only escape is to go to work (I am a general practioner, medical doctor, with is ironic, I know). I am ok at work. Then on the way home my stomach turns to knots because I ddon't know which husband will be there. He sleeps a lot which is the best. Next best is when he decides to putter in the yard, or go into the basement and shred old receipts or whatever. He's quiet and leaves me alone. Then the monster appears when he decides to do something he needs my help with like making a list (he can't write), or paying bills, or anything. He is incoherent and gets more and more angry agitated, loud, scary, and I don't know how to make him quiet down or stop his attack. So far it's verbal, but I know it could turn physical at any time. I am hiring a caregiver tomorrow that was recommended by a friend. He may be a lifesaving buffer if that is where we are headed.
    Living in Terror,
    Tina

    Deal with the monster
    Tina,

    If you truly believe this could get physical, you should do something
    to protect yourself. I know you are a devoted wife and what is happening
    is not your husband's fault.

    Put your doctor hat on. What would you recommend to a patient who
    came to you with what you described here? I know it's hard but from
    what you've written, I fear for you.

    You said it yourself, "the monster appears". It's not your husband.
    Like Michelle, I can't imagine what this would be like.

    I'm so sorry you are having to go through this.
    Positive thoughts and hugs your way...

    Jim
  • ddpekks
    ddpekks Member Posts: 162
    #8
    Tina2000 said:

    me too
    My husband has glioblastoma stage 4 since Dec 2010, 2 months after our last daughter got married and moved to Wash DC. She and my other daughter have refused to give up hope for a cure, so they keep flying in and hauling him off to Cedars Sinai X4, and now Fred Hutch in Seattle X2 so far. These trips are killing him faster than the tumor and the radiation damage. He has lost the ability to read, to write, to tell time, and he is losing speech. His personality is radically changing, and I get the brunt of that. He can be charming and polite to everyone else, but when he is alone with me, he screams, he yells, he blames me for everything, he barks nonsensical orders at me....etc. I am a basket of anxiety. I can barely function myself anymore. If I eat, I get sick, and have diarrhea from the stress. My only escape is to go to work (I am a general practioner, medical doctor, with is ironic, I know). I am ok at work. Then on the way home my stomach turns to knots because I ddon't know which husband will be there. He sleeps a lot which is the best. Next best is when he decides to putter in the yard, or go into the basement and shred old receipts or whatever. He's quiet and leaves me alone. Then the monster appears when he decides to do something he needs my help with like making a list (he can't write), or paying bills, or anything. He is incoherent and gets more and more angry agitated, loud, scary, and I don't know how to make him quiet down or stop his attack. So far it's verbal, but I know it could turn physical at any time. I am hiring a caregiver tomorrow that was recommended by a friend. He may be a lifesaving buffer if that is where we are headed.
    Living in Terror,
    Tina

    Hi Tina and welcome,
    Michelle is right....Hospice might be a good option for you. But calling in an outside caregiver could help in the mean time.

    Take deep breaths and savor the moments when all is calm, trying to take care of yourself when possible. Looks like you are going to need lots of strength to deal with this. Come here and vent. We do not judge and are more than willing to listen to you. Sometimes talking about it helps.

    Hugs to both of you,
    Deb

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