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Spouse of Cancer victim needs help

help_me_keep_faith
Posts: 2
Joined: Jul 2009

My husband (49) had a seizure in June 2008 and was diagnosed with an Oligodendroglioma tumor in his left temporal lobe. Surgery is not possible, because of the location. He received radiation and chemo. Every 3 months he gets a MRI. Well my main concern is, he has very bad mood swings. The one moment he will laugh but in a wink of an eye he will get aggressive. His latest mood is - he wants a divorce. I have suggested a support group since he was diagnosed, but he is full of excuses. Any suggestions on how I should handle the latest situation? I am considering calling his physician for help, but will it be ethical?

PBJ Austin
Posts: 346
Joined: Mar 2009

Not only is it ethical for you to speak with the doctor I believe it is your duty. Your husband is not behaving rationally and he is unable to recognize that himself. It is possible a change in meds can help. Please call the doctor at once and keep in touch, we do care. Good luck and please post back.

angelsbaby's picture
angelsbaby
Posts: 1161
Joined: May 2008

I would be calling now. Take care

michelle

Mannie
Posts: 51
Joined: Oct 2008

If you call your husband's doctor's nurse practitioner and talk to them they would definitely be able to help you and I would strongly suggest going to a support group by yourself. You don't need to take him with you and you would feel freer to talk about what is really going on with you and what's going on in your house without your husband there. It's ethical and don't feel bad about doing it.

My mom was on the phone with my doc's nurse practitioner when I asked her to call when I was irrational and even when I didn't ask her to call but was still irrational. She did it because she needed to to help me; she was my caregiver and that was her job at that moment. A nurse practitioner will be able to talk to you for longer and will be able to explain everything to you in a simplified manner and will be able to call in new meds or tell you what to try.

Good luck with everything and take care,

Mannie

sue Siwek
Posts: 281
Joined: Jun 2009

your husband has been put on decadron most likely. it is a steroid and it makes them very agitated. he will become very aggressive and angry with you. know that this will subside when he is off it. in the mean time you will have to try to put up with it which will not be easy. i would talk to the physician, any of them. actually when you meet with one along with your husband suggest it. most doctors dealing with cancer especially brain cancer know that decadron causes problems. if your man is like most men and i am sure he is! he will listen to someone else rather than you. confront it in front of your husband and the doctor. tell them what you think. he will be ticked but the doctor if he is any good will take it from there and your husband will agree with the doctors wishes. also be aware that he can become addicted to decadron and when he is off it if he exhibits sleeplessness(my husbands experience), see the doctor because he needs help in backing off of it. in my opinion, nearly 10 years, anything is ehtical, you are your husbands advocate.

infoneeded
Posts: 24
Joined: Jul 2009

Your not alone. My husband has been on decadron for two months and is currently tapering off. He has informed me that in our twenty years of marriage he hasn't loved me in the last 10 years and has no desire to be around me. Then the next minute I am the one he is looking to for all of the answers and wanting me to handle everything in his life. It has been three months since his GBM Stage IV dagnosis and I have been on the longest roller coaster ride of my life. I went out with friends for the first time last night. I wish I had done it sooner. It was my friends that helped remind me that the man I married isn't the one talking to me. His doctors and I have been pleading with him to be on an anti depressant but he refuses. He knows I talk to the doctor and nurse practitioner and now lies to them about how he feels. Hang in there and find support. I am now making time for myself. I am going out with friends weekly and joining a gym. It is all I can do to keep from letting my husband take me down with him and his rages.

sue Siwek
Posts: 281
Joined: Jun 2009

your comments take me back 9 + years when my husband was diagnosed. i experienced the roller coaster ride that you have. it is awful! let me tell you about today, for the first time in 9+ years my husband said that he felt good! yes, he still has problems but with the help of anti depressants and other medications that he takes for an added problem, parkinson's disease he had his first good day! i am thrilled! this is not to say that he has not felt pleasure and enjoyment and even smiling in those 9 years but, he actually feels good. the struggle is worth it. we have invested as i am sure all of you have time and energy in a relationship and as bad as it has been i couldn't let go because i always wanted and hoped for this one day....he feels good.

infoneeded
Posts: 24
Joined: Jul 2009

I am so happy for you. I too keep waiting for the day he feels good and has a smile on his face. Treasure it. I hope it lasts.

sue Siwek
Posts: 281
Joined: Jun 2009

i know that things will be better once he is off the steroid.

help_me_keep_faith
Posts: 2
Joined: Jul 2009

The only medication my husband is using at the moment is Keppra. I am still waiting for the nurse to call me back.

sue Siwek
Posts: 281
Joined: Jun 2009

get on line, type in side effects of keppra. it is a long list, 2 pages of info and it states that one of the side effects is personality change and being irritable. it sounds very much like a steroid but is used to prevent seizures. talk to the doctor about it and maybe something can be done or at least they can maybe give you a time line as to when he will be done using it.

onionhead22
Posts: 2
Joined: Aug 2009

I've been w/ Charlie for 10 years. He has been my rock. Now lung cancer has spread to his brain. We just finished some radio static, IDK. I just can't take anymore cancer info. But Decadron-it's evil. This is our second time on it and I want to leave. He shoved me today! He has never laid a hand on me-in anger-ever! I'm gettin mad myself and I keep getting the "put yourself in his shoes" speech from the one out of four daughters that comes over to check on him or offer rides to appointments. I feel so bad. He also gets pissed when I go to the appts and ask questions or talk at all. I have POA but we are not married. I don't think I can make it to the end. We are one year in, but I've never felt so worthless in my life, and believe me, he and decadron don't let me get thru a day without telling me how I'm messing up something.

OCMenno's picture
OCMenno
Posts: 26
Joined: Mar 2009

I am really sorry to hear that so many are having these kinds of side effects from the steroids. I don't know what to say. My wife is currently on Decadron and Temodar for the second time and I can honestly say that she has never had any problems with her emotions. She is always full of love, still putting our children and myself ahead of her. Please understand I am not trying to boast. I know there is always the chance that she could start having the same negative effects. I don't know why she hasn't had these same side effects with mood swings. The only problem she has with the Decadron is weight gain, sensitive skin, joint pain, etc., but even that she is taking in stride. Perhaps our faith and trust in the Lords and support group has something to do with it. My wife looks at her family and is determined to live as long as possible and as happy as possible. We just celebrated our 11th wedding anniversary. Another thing that I believe helps her is that our family and friends try as much as possible to treat her normally. Mind you they are always offering to help in any way they can with meals, housework, etc., but they do not show pitty towards her. The worst thing people can do is treat a person like they are dying and that they can not do anything anymore. We, as loved ones and care givers, need to help where it is neccessary, but we also need to let them be independant if possible and try to act normal. My wife and I will pray for all those that are having problems with the Decadron. The brain cancer alone is already so much to bear. I hope I have not offended anyone, I don't mean to come across like we are better than anyone else.

onionhead22
Posts: 2
Joined: Aug 2009

I don't find your comments offensive at all. I feel like a useless crybaby who can't deal with anything, not even, "sticks and stones" type stuff. Maybe your wife has been so fortuntate because of all the reasons you listed but one thing I did notice that makes her different from the rest of us is...she's a woman! Maybe it just affects men in this awful way, or we women caregivers are just more sensitive to the change in personality. I do have faith, even tho I admit it has been shaken, but in ten years he refuses to discuss this with me. He says it's "personal". I have tried to respect that but wish he would pray with me or something. Thanks for even reading my comment. I'm sorry to be negative and will try to remember you and your wife tomorrow when things are tense. Thank you

sue Siwek
Posts: 281
Joined: Jun 2009

onionhead22, we can not know what is going on in our spouses mind. maybe it is because they are men and have different hormones, i just don't know. i know this, that it is a tough road and you as the care giver deserve and must demand help in this situation. hopefully the clinic or hospital you are going to has a program for caregivers. if not insist to your husbands doctor that they must help you. you are the most important thing that your husband has going for his survival. i remember forcefully confronting my husband in front of his doctor. she wisely calmed us down and asked us to speak one at a time. turned out that he couldn't disagree that he was having difficulties. another time a doctor stopped him when he was being rude to me during an appointment and said to him, this women loves you it is so obvious why are you being so rude? you need care and she is willing to give it how lucky you are. that shut him up for a time. i guess what i would tell you is to ask for help, if you have to do it in front of him at least you have some protection! these doctors know what you are going through. they are grateful for your care of their patient. actually they couldn't do it without you and your husband can not do it with out you. hopefully as time passes he will get off that nasty stuff and feel better. it has been nearly 10 years since decadron and my husband is sure each day to thank me for my care of him. i believe your husband will be humbled by your care and love once he is off that evil but necessary drug. be strong, you are not alone.

infoneeded
Posts: 24
Joined: Jul 2009

My husband was diagnosed with GBM IV. He had emergency surgery after I took him to the ER. He has been on a steroid since. Today my 12 year old was with him and texted me saying Dad is scaring me. He was mad, happy, mad and it was a different mood with every sentence. We have tried to get off the steroids but the radiation has caused a lot of swelling so he is getting awful headaches. On more than one instance I was packing him up and sending him to his mother. Then I read the discussion boards and realized it isn't my husband that is being a monster it is the steroid.

He also doesn't want me talking to the doctors because I tell them the truth as to how he feels. He wants control of his body but everytime I mention a side affect or a new symptom he usually ends up with another pill. He doesn't want to be controlled by anyone or any pills. I now email the doctor before we go to let them know what is really going on. So far it has been working. They have been able to take what I say and get him to open up.

As for the self worth. It sounds like Charlie and my husband are identical. One day I was told I didn't rake the yard right. He doesn't compliment or say thank you he only finds ways to criticize everything that I do. I use to get furious. I now just walk away. You need to go out with friends every now and then. It will help you realize you aren't worthless. It took me three months before I finally caved into my friends invitations and I sure wish I had done it sooner. The nights out give me strength to go back and get through until the next dinner. In between dinners I have found another release. The day I was told I raked the yard wrong I was so mad I went in the garage grabbed the first thing I saw (a bucket) and started throwing the bucket across the yard. I am getting really good and amazed at how far I can make it go.

Good Luck my prayers are with you,
Chrissy

Deb1969's picture
Deb1969
Posts: 165
Joined: Aug 2009

My brother was diagnosed in March 2009 with the same type of tumor and location, he also has an astrocytoma. He underwent an awake craniotomy and was able to remove the astro. but had to leave the oligdend. He took 6 weeks of radiation. We were told he would have behaviors like this, may cry easlily become very angry. I think this was also exaggerated by taking Prednisone. His behaviors have improved since he no longer takes the steroid.

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