Author Topic: Feeling alone  (Read 7938 times)

Ronimeryl

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Feeling alone
« on: September 30, 2010, 04:57:24 pm »
Hi. I am new to this. My husband's surgery for removal of an atypical schwnoma (there was a cyst in the middle of it) was in January 2009.  I feel sick most of the time that I cannot make things better for him.  His face is still mildly paralyzed (this bothers him, not me) and he has some trouble eating.  He thinks his speech is poor (he was a trial attorney) but I disagree. The worst were headaches that at times made him irrational (he tried to get out of my car at 60MPH).  He recently had mroe surgery to have a neurostimulator implanted. The ehadaches are still there but less frequent and less severe.  Our life is limited. he is always tired and cranky. I don't blame him, but I can't seem to help him either. we both work 12 hour days, and I do all the hosuehold chores- he is just not able.  He has also had serious personal problems with his daughter which don't help things.  Sometimes I resnet what has happened. we are young enought to enjoy our lives, but rarely do more than go for a walk on the weekends.  Sometimes I just go out myself.  He is frequently cranky and irritable.  What am I not doing right?

epodjn

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Re: Feeling alone
« Reply #1 on: September 30, 2010, 05:40:57 pm »
Most likely you are not doing anything wrong. This AN ride is different for everyone but it sounds like he is depressed. There is a learning curve to dealing with post AN surgery. It's hard to explain if you haven't experienced. You just don't feel normal or like yourself anymore. I also have facial paralysis and I can tell you it takes a lot out of you emotionally. Can he smile? That's huge, at least it was for me. Once I could do a small smile I felt like I was getting some of my old life back. Most people think paralysis is just not being able to move your face but that is the tip of the iceberg. For me it feels like I'm wearing a cement mask on half of my face. It's very uncomfortable.  Does he have other problems ie SSD, balance? Just the paralysis and headaches are enough but it all adds up to be very debilitating. I would definitely seek out medical help and have him evaluated for depression.
There is a thread that has been going lately about not feeling normal after surgery. It might help you understand if you have a chance to read it.
Now for you. I know this is very hard on spouses. I see my sweet husband struggle when I am too tired to talk or do things with him. You need to take care of you and do something enjoyable just for yourself. And most importantly, don't feel guilty for feeling good or having a good day or enjoying yourself. It won't help your husband and he will feel more guilty and depressed if he thinks he is doing that to you.
Stick with this group. There is a wealth of wisdom here and you will get the support you need. It would be great if your husband joined too. He would be able to see that he is not alone and he would also be able to see that their is life after AN.
Julie
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!

GM

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Re: Feeling alone
« Reply #2 on: September 30, 2010, 06:04:11 pm »
I know this isn't the same thing...but I'm hoping this helps.

I saw an episode on Dr. Phil about a man that had terminal cancer and how his wife's life was impacted by his bad moods, constant criticism, etc.

He helped her to understand that although she loved her husband dearly,  she could not eliminate what he was feeling or his fears....he had to work on that himself. 

She could be there for what he couldn't do...and help him with it.  Not only did her husband need to realize his limits, she needed to realize hers.

...help your husband but most importantly help yourself.   
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

Lizard

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Re: Feeling alone
« Reply #3 on: October 01, 2010, 10:54:31 am »
This does sound like a tough situation, but do not blame yourself.  Recovery can be very tough and many of us become depressed, has he gone to see anyone about his anger and/or depression?  It seems to be catching up with him and will probably not get better until he accepts his new normal. 
Best of luck to you and you are not alone, we're here!  See if you can get him to come on the forum, it might be really good for him to get some of the emotions out...

Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

Tod

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Re: Feeling alone
« Reply #4 on: October 01, 2010, 01:01:42 pm »
I was a caregiver before I became a patient. I also did my best to emotionally support my sister when she became our Mom's caregiver.

The very most important aspect of this situation you have to come to terms with is this: You can't fix it.

You can take care of him, you can do your very best to help him through this, but in the end, you simply can't fix it. Nor should you try. From the little you posted, it sounds like you are doing the right things. Throughout the years I was caring for emotionally disturbed son and a seriously depressed wife, I kept wondering what I was doing wrong. My sister did the same thing and three years after Mom died, she wonders the same thing.

When we provide care for someone we love, it is hard work. When things don't seem to improve it can be downright scary. Not to mention depressing. So, take heart and accept it that you likely aren't doing anything wrong.

And then make sure you are taking care of yourself. It is very easy for caregiver to forget to do that, or to feel it should be the last thing you do. The simple fact is, if you don't take care of yourself, you can't take care of anyone else.

There were times that I resented what my son was doing to the family. Your resentment is normal. Your life has changed, things are not easy and perhaps you wonder what the future holds. Acknowledging your honest feelings is the first step towards dealing with them constructively since no one really wants to live in resentment of their spouse. Understand why you feel the way you do, take good care of yourself, and take care of your husband...as needed. One of the best things my wife has done for me has been to stay out of my way and allow me to fend more and more for myself.

I can sympathize with your husband's problems eating and talking. I can't generally swallow without drinking, if I bend over after eating the food will come right out of my stomach, and a number of other problems. Until recently I had been spared the pain of headaches. I'm not an attorney, but I do have to speak a lot in my job at length...I thought I was going to pass out from hypoxia this morning. So I have some idea of what he is going through.

I hope this is helpful in some way, but more, I hope you are taking good care of yourself.

-Tod

Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

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28 Sessions of FSR @ MCV ended 2/9/12.