The roller coaster ride caused by decadron

Caregiver1963

This site has been a wonderful source of support for me during this time as the caregiver for my husband with brain cancer. This week has been an especially hard week so I hope it is ok that I vent..He had a biopsy a few weeks ago as the last MRI showed progression of the tumor despite the chemo therapy he was receiving. After the biopsy his symptoms continued to worsen and he became very angry as he thought that the surgeon " made a mistake" during the biopsy which caused his physical symptoms to worsen. He has a CT scan done which showed a small brain bleed, but the follow up CT scan actually showed it was an area of calcification. The surgeon indicated that his increasing symptoms are the result of the tumor Meanwhile he is receiving decadron, which has greatly effected his mood. He cries often, calls me every name in the book, threatens to leave me etc. His doctors are aware of these issues and at this point need him to stay on the same dose of decadron to help his physical symptoms. In the meantime, he has complained to his siblings about me and I actually got a lecture from one of his siblings telling me that I am the reason he is crying all the time and that I need to improve our relationship. I tried to explain to his siblings the effects of decadron- but they don't believe anything I tell them. Just what I need in the midst of being the caregiver, working full time and dealing with my own pain seeing my husband change from the caring , strong person he used to be. His family also have indicated to my husband they don't think he is getting good care at the teaching facility he receives care at so he has cancelled his appointment with his neuro oncologist- it was at this appointment when he would have started a new chemo regime. The ironic thing is that his family has been hands off with any of his care since his diagnosis but they are very good at giving advice!

The ways I am coping with this are walking away when he yells at me or calls me names, sharing my frustrations with family and friends,regularily seeing a counselor at work and limiting my contact with his family members who increase my stress. I also make sure to exercise regularily and eat properly. I would be interested in knowing of any other coping strategies I could try.
Thank you and Best wishes to you all
Mary

Barbara53

untie from the whipping post
Your situation sounds terrible, but as primary caregiver I know how it is to see bizarre things, and then have our patient act normal around others. They have no idea what goes on, but they might if you let them. Can you arrange to need some time away, and line up your husband's sibs to take turns spending time with him? He may behave perfectly while they are there, but they will still get a much better idea of what is involved in his care.

Develop a planned response to the verbal abuse. Remind your husband that you are his partner and best friend, and tell him you will no longer stay in the room when his drugs start talking. When it happens, quietly leave the room and close the door.

It's such a sad situation, but it sounds like you are doing a saintly job!

lindaprocopio

(((Hugs)))).
I'm not a caregiver; I'm a cancer patient/survivor. And, honestly, I think it easier to HAVE cancer than it is to be a caregiver, so you have my sympathy and support.

It seems to me that you have a pretty good handle on coping strategies. I just wanted to verify your observations on decadron. My pre/during-chemo steroids always make me uncharacteristically aggressive and tactless, not to mention sleepless for days. I interrupt people; I give unasked-for opinions on things that are none of my business; it's pretty obnoxious. Because I am AWARE that I'm not myself on these steroids, I can control it somewhat by biting my tongue (figuratively) and I bring a book to read during the ride to the clinic and during my chemo infusion, and try and keep my mouth shut.

My husband bravely called my attention to the problem, although he waited until I was off the influence of the decadron to do that, an option you don't currently have. But if you get the chance, perhaps he will also already be aware that he is not himself on this stuff, and may be able to control some of his reaction to it himself. Maybe; maybe not.

If it helps you at all, I will also share that on decadron, your husband probably physically feels much better than off it. Steroids really do tamper down the uncomfortable inflammation and digestive issues. I know that you are paying dearly emptionally for his added physical comfort. But perhaps it will make the sacrifice more bearable knowing that it is helping him be more comfortable. ((((Big hugs)))).

NataliaD

Been there...
Hi Mary-

This is my first post to this board and your message caught my eye. My husband also has been on the decadron and his personality also changed. When he was on chemo (he's NED now & hopefully forever), he was nasty and mean. At one of his onc appointments, I told the doctor and he put my husband on Xanax. It was for anxiety, but I'll tell you it helped with anxiety and his outbursts. If he would start his antics with me, I would tell him to "take a pill". He would then realize he wasn't being nice to me.

When he goes back to an oncologist, see if they can maybe give him something.

I feel for you. Good luck and let us know how you make out.
Natalia

Caregiver1963

NataliaD said:

Been there...
Hi Mary-

This is my first post to this board and your message caught my eye. My husband also has been on the decadron and his personality also changed. When he was on chemo (he's NED now & hopefully forever), he was nasty and mean. At one of his onc appointments, I told the doctor and he put my husband on Xanax. It was for anxiety, but I'll tell you it helped with anxiety and his outbursts. If he would start his antics with me, I would tell him to "take a pill". He would then realize he wasn't being nice to me.

When he goes back to an oncologist, see if they can maybe give him something.

I feel for you. Good luck and let us know how you make out.
Natalia

Your thoughts are very helpful
Linda, Barbara and Natalia,
Thank you for your thoughts and suggestions- all have been so helpful! Leaving the room when he has an outburst has worked and been very effective. He also has been agreeable to taking his ativan when he starts to feel tense and that has helped too.
He has started to taper the decadron so I know that there is a light at the end of the tunnel at least for now ! I am more confident that I will be even better prepared if there is a next time dealing with the decadron. In regards to his siblings- I think that they are all understanding now that when they come to visit my husband, I am going to use the time to spend time away with my family and friends for a break.
Best Wishes to you all
Mary