Spousal Help!

[nancyann]

Farah:  I don't know what to say,
other than your husband is still very angry over having to deal with this nightmare
& is taking it out on you (we always let the anger out on the ones we love the most).
Can you go for therapy alone ?  You also need to take care of yourself (I know therapy
isn't cheap).  There's no right or wrong to what you're doing/not doing - that's just his anger coming out.
You've been dealing with this for 4+ months, I can't imagine what a strain it is for you (and him).

Please take care of yourself, keep a peaceful heart.   Nancy

[Cheryl R]

Farah.     Is your husband on any medication for depression?      I would say that much of his anger and problems are coming from within him and no matter what you say or do,he will reject them as wrong.         Also did he have an negative or angry type of personality before and this is just bringing it out even worse.     Did he have a low frusration level also?       I think men have a harder time with health issues and this goes against their thoughts they can handle anything that comes along,                   I had my first AN surgery in 2001 and always felt like it took a year to recover physically and a 2nd year to recover emotionally.         I have no good answers for you except that  I feel he needs personal help apart from any marriage counseling.         Maybe even back off a bit from trying to "fix" him and be good to your self if this is possible.  
    Your situitation seems to be beyond the usual strain that a health issue puts on a marriage and hope you are able to get whatever help is needed to resolve it.
            Good luck to you both.                                  Cheryl R

[Dealy]

Farrah: I feel so sorry for you when you stated in your 2nd e-mail what you are having too go through. I want too share a story with you that may help and may not. I had radiation treatment in Baltimore,Maryland last summer> we frequently had too wait in this small lounge until it was our turn. People would come in and set and sometimes we would strike up a conversation and other times not. A guy and his wife would come in every day and he would just stare off into space and talk too know one. He seemed oblivious too us all. One day his wife says he comes home from treatment-slams the door-will not talk too her-and she does not see him for the rest of the evening. She was trying to be suportive but too no avail. So we tried too give her some advice and let him have his space for awhile. One day I started talking too him as patient too patient-trying too relate with him. He never said much so I felt I never hit a button with him. The next day he came for his treatment and wanted too talk to us. Apparently we had opened his door just a crack. They say patience is a virtue . Well this same lady writes us monthly from Baltimore. I am not trying to put a feather in my cap-but may I suggest-like others have a AN Support group where he can talk too others like him. When I had my first AN back in 1988 my doctor said it would take 6 months to feel somewhat normal-and like others said up too two years too get back to so called normal. I am on my 2nd go around with an AN because I am an NF2-had radiation on my only hearing ear and am close-not quite their of going completely deaf. If anyone thinks that is easy too endure-think again. However_I take it a day at a time. I hope you find the strength to hang in with your husband. The crack may open in his door too one day. Have faith that it will. God Bless-Ron.

[pearchica]

Farah- I don't know what to day to you- the other members of our website have given you great advise. I guess just keep up with the counseling. Please know that you have done nothing wrong though and I don't think your husband really means that utlimately.  He's just frustrated with the situation.  I think the caretaker takes the brunt of the stress- you feel helpless and you are trying to be supportive. Know that we are with you and your husband both through the proccess.  I feel helpless trying to give you advise- however it sounds like you are taking the right steps- seeking counseling- getting your husband to talk to other AN'ers.  Hang in there. Annie

[Stevey]

Farah,

I wish you well and applaud your peserverence, be sure to remember not to neglect your own needs.  It is good that you have started counseling but sometimes it can take a while and sometimes more than one counselor choice.  It sounds as if your husband is suffering much and we all can empathize with him here, but he may need to consider psych meds if counseling fails to meet his needs.  I have been there for different reasons (death of mother during a stressful time, merger at work, purchase of first home and first pregnancy for us all in about 3 months, I lost my ability to focus completely and became really withdrawn).  I wish you both the healing that you need to thrive, grow and heal.

God Bless you both,

Steve

[ixta]

Hey Farah. Fawcett? lol

naw, well I am one of those angry husbands, Also work as a Therapist 

And ya, Life is a DOWNER when you loose half your HEAD from an amputation
. I yell at my wife when Angry, very touchy, I was in the OR, super sensitive too, I even yelled at her to get out of the room because I was in soo much dizzying pain!


Even though one does not see it, I am amputated. Left ear. Gone.
 I am extra pissed at my boss or giving me a review, under "communication" she put, below standards.
Needs to listen better, improve understanding and follow directions.

you talk about wanting to bring a shotgun to work!
I am in the process of quitting my job and getting another.

your husband is going through a process that no one else near him is. so he will retreat to his own world.
It is VERY hard to explain to others what a life altering experience it is to have one of your senses taken from you.

He needs to visit this board.


send him to my site.

http://www.thestatus.com

visit a patient page

h username
biologyfly06 password

Also, If the Marriage was already on the rocks before the Diagnosis.
it makes it more difficult.

Try to automatically always be on his hearing side in public, parties, etc. Don't make it a "known" thing that you do it either. Let it come naturally. Don't try and do things for him that he can do himself.

I have known my wife for over 10 yrs, married for five.

I knew her 360 degrees around me STEREO SOUND ALL THE TIMEl

Half of her being has DIED to me due to that. and That Death, I am still adjusting to,
The Death of her being "auditorily" visible to me on my left.
it hurts.
Direction has died too.
not knowing where something is.

Depressed mood is common with hearing loss and there are many hear" on the boards adjusting to that.

You could say he's in Bereavement and dealing with- Kubler Ross, steps on the Dying Process.

1. Denial and Isolation: Used by almost all patients in some form. It is a usually temporary shock response to bad news. Isolation arises from people, even family members, avoiding the dying person. People can slip back into this stage when there are new developments or the person feels they can no longer cope.

2. Anger: Different ways of expression

-Anger at God: "Why me?" Feeling that others are more deserving.

-Envy of others: Other people don't seem to care, they are enjoying life while the dying person experiences pain. Others aren't dying.

-Projected on environment: Anger towards doctors, nurses, and families.

3. Bargaining: A brief stage, hard to study because it is often between patient and God.

-If God didn't respond to anger, maybe being "good" will work.

-Attempts to postpone: "If only I could live to see . . ."

4. Depression: Mourning for losses

-Reactive depression (past losses): loss of job, hobbies, mobility.

-Preparatory depression (losses yet to come): dependence on family,

etc.

5. Acceptance: This is not a "happy" stage, it is usually void of feelings. It takes a while to reach this stage and a person who fights until the end will not reach it. It consists of basically giving up and realizing that death is inevitable.

    * Hope is an important aspect of all stages. A person's hope can help them through difficult times.
(copied pasted from google)


Most of us are in Step 4.
I was able to say goodbye to my hearing at least for 2 months b4 surgery.


I said goodbye to birds in the morning. everytime I could.
and the whisper of my wife in the nightime.everytime I could.

[Musicman]

Check to see if there are any AN support groups in your area.  There should be a list here.  But, you might also check with the place that did the procedure.  They may have a list of groups.

[kkweiher]

hey Farrah,    I feel so bad for your situation.  Not that many days ago I was very mad too.  I had my AN removed by way of trans lab.  I felt I lookes like a science project and was so mad I couldn't go play in Tunica, MS with my live in boyfriend of 8 years.  He has been my rock through all of this yet I still yelled and screamed at him like a mad woman. He had taken care of me and all the arrangements since we found my AN (on his birthday) and even though i would not admit it at the time I was in no shape to endure a 7 hr car ride (we live in yukon, oklahoma) for me to go with him.  I stayed with my parents and had a nice visit and Joe (my boyfriend) had some much needed R & R from playing nurse maid to me.  It sounds to me that your hubby is on a different wave lenghth than I am.  I went into my ordeal with the attitude its broke and they can fix it so do it and they have.  I still have a ways to travel  back to a full recovery but the moe positive I can be the faster it will come.  I hope your husband will have the same feelings I have had.  I love and appreciate my partner more than ever now. GOOD LUCK!!!!
kkweiher

[Omaschwannoma]

Okay, most ANers will probably not like what I'm going to say, but how can the patient really expect the caregiver to "understand" what they are feeling physically and emotionally?  Patients need to take responsibility and know the caregiver is NOT a mind reader nor can they "feel" your pain, even though we explain, it is not the same.  I do understand the "outbursts" and sympathize with ANers, but you get what you give.  If you give anger/frustration, you will receive anger/frustration, this true and simple motto applies to all emotions.  Yes, ANers do go through a huge learning curve dealing with what is not the same in our world, but change happens not only to us personally, but all around us, all the time and learning to accept this is the easiest road to walk down, the path of less resistance you know. 

My recovery was fraught with moments of frustration.  Frustration with what I lost and frustration with my caregiver not remembering what side to be on, finding blame, repeating oneself, headaches, difficulty trying to find the right word or processing words, exhaustion, balance, etc.  The one thing I brought into each of these times was humor, also what helped was realising my caregiver is human and has his own frustration so I would quietly tell myself to "button up" and let this one moment go.  Was I perfect?....no, was my caregiver perfect?...no, did we have our moments?....yes, do we still have our moments?...yes.  I love him. 

So come on everyone embrace your new world (caregivers too) and accept this, and one another with wild abandonment!  Our lives (caregivers too) could be worse, as we all have read there's always someone else out there worse off than us.  Let's focus on that.  Please know I say this as life is short, not life can be short, it is short.  Please, wake up today and let go of one thing that is making your recovery a hard one.  (walking sheepishly off the podium to accept her punishment).

[Musicman]

Being an AN'er, I appreciate Arushi's comments.  I know I am always thinking about "Why?" I am responding the way I do.  My process was simple and non-invasive...I had CK.  Yet, there is still a part of me on edge for what may be ahead as we wait to see what level of success.  I do accept the fact that if this had gone undetected my life quality would have deteriorated over time, probably to a point of death.  I see life a little differently having gone through the process.  I find myself more frustrated with the "stupid" emphasis on certain "stupid" things...getting upset over accidental events or when one person feels there personal opinion/preference is of more validity than another's--when both are neither better or worse than the other.

However, I also have to realize and accept the fact that I am me and others have NOT walked my life path.  So, my own perspective is truly only my own and I do not expect my caregiver to fully understand or relate because they have not walked my shoes.  Even when I communicate my feelings and fears, there is still no way to fully communicate the pathos of the experience or the influence on life forward.

[Captain Deb]

Farah, just a question--what meds is your Spouse on?--If he's still on Decadron or prednisone, both steroids, he could be suffering fron "steroid rage" which is what my dear brother suffered from on and off for years--he was an ulcerative colitis patient and that is what they treated him with and it made life hell for his wife. He eventually had a colostemy and is off the steroids and a much happier person. 

Topamax is what did it for me--I was a raving maniac for weeks-different meds affect people in different ways--just a thought. Depression is a medical condition that needs to be treated by professionals and chronic pain is almost always accompanied by some form of depression. Medication accompanied by counseling has been the way many of us have dealt with this same problem.

My heart and good thoughts go out to the both of you,

Capt Deb

[Raydean]

Dear Farah

If possible please consider setting up an appointment with a neurologist.  A neurologist focuses on the issues and possible causes and tend to be less bias then other doctor's.  It's important to check into the possibility of a brain injury or other physical problem that might be contributing to the problem as well as the emotional issues.  With outcomes there may be more losses then what a person is willing to share on a public forum.  it's not only the physical losses,  which is difficult enough, but loss of job,friends, loss of being able to do the things that you dearly loved, loss of who you are as a person, who you knew yourself to be.  To who you are now and what you may (or may not ) be able to do.   

When there are outcomes, it's really hard to reconcile life now, with life before.  It's a clearly defined  lline.  It's important for you to be able to talk to someone, just as it's important for your husband to talk to someone that he considers to be a "safe person" to talk to.  i know the position that you are in.  You  see a side of your husband that no one else is allowed to see.  You're his "safe person".  He may feel comfortable enough with you to lash out at a situation  that he no longer feels like he's in control of.   If there is brain injury sometimes that will magnify the pre existing traits.  As an example if a person prior to was angry, negative before , with injury it raises the existing traits to a whole new level, which you clearly see.  The problems is he may not see the difference, since "he has always been this way". 

 Your husband could be pushing you away, rather then run the risk of you walking away.  His self esteem may be taking a battering.  If I'm not the person i was, if I'm unable to provide for those persons I love the most, if I'm unable to meet them equally as before, then what is my worth as a person, as your husband?

Farah, never forget that at the time you did the best you could with the information that you had.  We all beat ourselves up with the could ofs, should of, if only.  I am hopeful that the both of you can build bridges.  Not to where you were before, but to a place where you both are comfortable in this 'new normal".   Never forget your worth as a person. You are caring, loving and strong. Neither of you are" lessor then".  You both are showing remarkable courage in a really complex situation.  Each of you are trying to find your way with no clear directions. 

Know that we care and please feel free to email me off list.

Hugs
Raydean

 

I am here anytime you want to talk. 


 

 



 



 

 

[Denise]

Farah,

You said, "I was just wondering if any of you have also had this similar feeling of not enjoying life anymore after the surgery?  My husband says he no longer takes any pleasure in anything and all he can do is focus on the negatives such as the nightmare he is living rather than the positives of having a sucessful surgery and not having facial palsy.  Is this something that is common and if so is it temporary?"

I am just shy of two years post op.  I see alot of myself in your comments about your husband.  To be completely honest with you, after my surgery and up until recently, and I mean within the last six months, it has taken me along time to come to terms with what happened to me.  I have not been the easiest person to live with in the last two years, nor did I find it easy to be positive, and sometimes I still have a hard time finding a positive side to my AN journey.  I am finally realizing that I will never be the same as two years ago.  I can only be the best "new" me, that I can be.  I still get depressed and angry, but I am finally figuring out why.  It is hard to realize that the things you used to do, that came easily to you are not that easy anymore. The frustration level is unbelievable at times, and unfortunately we take it out on the people we love the most. Usually because they love us, and will "take" it from us, and still love us when all is said and done.

I am sure you did all the "right" things when he was diagnosed.  I think it's hard, at least for me it was, to realize that people handle things differently, and while some of my family made no effort to even call me while I was in the hospital (the are out of state).  I know they were having a difficult time handling it too.  I am sure as a spouse you see his frustration, and while I am sure it is difficult for you to deal with, he will come to terms with it in his own time.  I know you want to make everything all better for him and his anger is making it difficult for you, but I do believe with counseling and a possible change in current meds (if he is on any) or an antidepressant he will be able to find some peace of mind and learn how to deal with this life changing event.

I was not a negative person prior to my surgery, but in some respects I seem to be now.  I try not to be, but some days I just can't help it.  And on those days, I just try to remember, there are worse things that could have happened to me.  While my physical being has changed due to this AN. I am lucky my brain is functioning and I am able to work and support my family.  I don't have vertigo, migraines or some of the other symptoms that are wreaking havoc on others on this site. Like I said, it has taken me almost two years to get this point.

I think the other responses you have gotten are very helpful, the counseling is a great idea. But, remember the counseling is not a magical cure, it isn't going to work overnight, but it does help, and you have to WORK hard to get things back to where they were.  I know, I have been to counseling a few times.  Also, the medications he may be on may be contributing to his demeanor.  I wish you the best in your counseling and marriage.

Just remember it takes TIME to heal physically and mentally from an AN.
Denise

[nancyann]

It's funny Farah, I seem to be moving along on this path in a much more positive way then I was before.  It has taken almost 10 months, but I feel I was given this 'change of outer appearance' in order to delve more closely into the 'inner self'.
       I'm more at peace with myself now then I ever was 'pre-op'.  I don't know if I would have 'found myself' without this surgery/complications.   When people ask 'how are you' I answer how my spirit is, which is the most important thing.   I hope your husband can find his way.

Take care,  Nancy

[farah1978]

Dear All of you Fabulous People,
I hope you do not think I have dissappeared since it has been so long since I last wrote.  I'm still here and we're still trying to work things out.  I have read all of your messages over and over again and every single person had something of value to say.
At present my husband and I are living together quite amicably but we still have a long way to go.  We've been going to couple's therapy which has helped but I think the real turning point was when I realised that I should not be taking his anger at me personally.  He is having to deal with the loss of so many things and he doesn't know how else to chanel that sadness so it turns into anger which is projected at me.  So now I am learning to be strong and to walk away everytime he gets mad at me for not doing enough and come back when he is calm and ready to talk about things.  By doing that I am understanding how much pain he is suffering by having to deal with the fact that he will never be able to do things he loves like riding a motorcycle and DJ-ing.  He also used to love going for dinners but now the background noise interferes with any conversations he's trying to have.  Can anyone tell me if a hearing aid can help any of these obstacles.  We are also going to a local AN meeting this weekend so I shall write more on Monday.
Have a fabulous weekend,
Farah