Author Topic: How does everyone cope?  (Read 14239 times)

er

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Re: How does everyone cope?
« Reply #15 on: June 17, 2008, 10:27:20 pm »
Sheryl
Kidding and good humor and some one to listen is always good medicine.

Thank you Mary for understanding. Your mother , son and grandchildren sounds like they are in good hands. It always feels good to have some one who cares.
eve

Tamara

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Re: How does everyone cope?
« Reply #16 on: June 19, 2008, 04:13:52 pm »
Great new category - I've been caregiver for my disabled daughter for the past 10 years.  She functions at about a 2 year old level.  BALANCE is the key - instead of worrying about the things she can't do (like talk), it is much more productive to work on what she CAN DO. We also keep our family - both immediate and extended - doing things together as much as possible.  We adapt as necessary (Anna rides in a special needs trailer behind our bikes), and we extend our world to her as much as we can on her level.  To her credit, she is an easy-going, happy child, and we can pretty much go anywhere as long as she's not hungry or tired, and we bring her book bag along.  We do festivals, long car vacations, church, restaurants, pretty much everywhere, with few exceptions.  Both of Anna's brothers, while evil to each other on occasion, both adore their sister, so that helps, too.

I have also been interim caregiver to both of my parents this past winter and spring, and find again, that integration of family and activities really promotes the best mental health for everyone.

Tam
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

SherryLB

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Re: How does everyone cope?
« Reply #17 on: June 26, 2008, 04:27:10 pm »
I find it hard to consider myself a caregiver -- my husband has been able to go back to work full time since his an was removed in March of 2006.  And he is able to do most things he did before, but at a much slower pace.  It is probably ME who is having the most difficult time.  There was a post in March about personality changes that I replied to.  THAT is where we - me are struggling.  Little did we know when his surgery was done, how our lives would change.  I often wish I could talk to his doctors in private -- why weren't we told what would/could happen??  I did not find this site until well after the surgery when I was trying to put a handle on why he was the way he was.  He went into surgery one person and came out someone else.  Is it because the tumor was large and pressing on his brainstem?  Is it because he was in surgery for over 8 hours?  Do all an surgery patients have symtoms similar to stroke patients?  And why is the weakness in his body on the same side as the tumor?  Will his balance ever come back?  Does the lack of feeling in the face come back?  See what I mean?  So many questions, no answers. 

All I want is my husband back.  I am sometimes so sad.  His mother told me a few times it could've been worse.  HOW?!  She doesn't live with him or see him every day.  The doctor's told us up to a year's recovery.  OK, I can live with that.  But NOBODY told us about what can possibly happen regarding personality.  It is like sometimes he doesn't understand what I am saying - just looks at me with a blank look.   

There, I have dumped.  Maybe that is what I need to do.  I don't really talk to anybody about how I feel.  If anything, I have probably shut people out.  Nobody likes to talk about the elephant in the room and I get tired of saying "he's fine" when they ask about him.  We have a new "normal" at our house now.  WHAT else am I supposed to say??  It is so hard to see him now -- and remembering how he was before the surgery.  It is like it aged him 30 years. 

My husband would say sometimes in the first months after the surgery, if I expressed frustration -- "trade places with me".  Well, guess what?  I WISH I COULD!!  He could probably deal with me better than I am dealing with him.


leapyrtwins

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Re: How does everyone cope?
« Reply #18 on: June 26, 2008, 06:38:59 pm »
I often wish I could talk to his doctors in private -- why weren't we told what would/could happen?? 

Sherry -

why can't you do this?  I know there are HIPPA laws and such, but my mother talks to my father's doctors on the phone all the time.  My father doesn't have an AN, but he's had other health issues - 5 way bypass, hips replaced, etc. - and no, he's not senile.  He just doesn't always remember to ask vital questions, or often is uncomfortable asking them, so my mother usually has direct contact with his docs.  The docs seem to have no problem with this, and it's certainly helped out both my parents.

Maybe you could call or make an appointment with your husband's doctors and tell them of your concerns.  Afterall, you are his wife and - although I hate to assume things - that should give you some "privileges"; at least IMO. 

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MaryBKAriz

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Re: How does everyone cope?
« Reply #19 on: June 27, 2008, 10:20:03 am »
Hi Sherry,

First I am sending you a big hug. I feel so sad for you. This has to be so hard for you!!!! 

It occurred to me when reading your message that many people who go through major surgery of many types have side effects of depression. Could this be causing his personality changes?

Jan, great point! Even if the doctor didn't give direct feedback (which I would hope he would), it gives HIM important information he can follow up on. I think guys don't often tell doctors all the symptoms. If you go in with him, I think you could say something like "he doesn't seem to be himself since his surgery".

My thoughts are with you. Hang in there, we are cheering you on!

Another big hug,

Mary

Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Raydean

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Re: How does everyone cope?
« Reply #20 on: June 27, 2008, 07:26:48 pm »
Hi Sherry

I'm not a Doctor or anything.  I was the wife of someone that also had a large AN with similar outcomes.   First of all  do contact your husband's doctor and share with him or her your observations and concerns.This can often be done by phone.  Right now the Doctor only has part of the picture, your input would help to give him/her a clearer picture and could lead to referrals to Doctors that may be able to help.  With large tumors it is possible to have multiple residual neurological deficits and symptoms as a result of complications of acoustic neuroma with or without hydrocephalus.  These may include complaints of neurocognitive impairments, changes in personality. mood disorder, tumor side extremity paresis. tumor side limb ataxia, tumor side sensory impairment and ataxic gait along with the dysfunction of the cranial nerves ranging from 5th, 7th, 8th, 9th 10th and 12th

Sherry, for me it was like the man i married and knew for 25 years died, this "new person"  I still deeply loved, but the person I had married was gone. The physical body remained, but the specialness that made Chet, Chet was gone. It was made worse because i felt like no one understood.  I was constantly told 'how lucky I was' and how "it could of been alot worse".  I knew both of these statements were true, but i wanted my husband back.  Sherry, as much as we both had to be grateful for, there were also losses and those loses must be acknowledge and grieved for.  I wasted alot of time trying  to get back to where we were before the surgery, that i fail to see the possibilities.  It took me awhile to realize that, that life was gone.   All of those feelings that you are having, from the joy of his still being here, to the anger, frustration, the hurt from mood/personality disorder,  every one of your feelings are Ok.  You have a right to feel the way you do.   

What I know to be true (and why you need to talk to his doctor) you are his safe person.  It is you who he feels the safest with, which also means it is you who sees the person that no one else sees.  It is you he'll trust enough to see the full range of emotions, you will see him at his worst.    If there is personality/mood disorder it can be extremely confusing (and hurtful) since things can be normal one minute and angry the next.  Adds whole new meaning to "turning on a dime" The truth is with so many outcomes it's very possible that a emotional dependency developes adding to the caregivers plate.

All of us have positive and negative traits.  With brain injury some of these traits are reved up a few notches.  As an example, if a person tended to be alittle on the selfish side, or maybe argumentive  prior to surgery, say 3 on a scale of 10, thru the years we just probably said or thought "get over it", but with brain injury the same traits may be now at a 7 out of 10, very noticeable to you, but because he has always been this way, he is unable to see how he is now.
It is part of the brain injury, no matter what the cause.

Balance does improve, it's something that has to worked at, but does get better.  This does not mean that the ataxic gait and or tumor side upper and lower extremity paresis. tumor side limb ataxia will improve. Again I'm not a doctor.  But I can share what Sherry is describing is probably
alot like Chet was.  If either Chet or Sherry's husband passed you on the street, no one would think brain tumor, most everyone would ask " when did he have the stroke".  With the facial paralysis and tumor side limb impairment, this is what the world sees, a person that has had a stroke.

Sherry, i never did have all of the answers, tho i tried hard to get them, I did reach a point that the answers no longer mattered, know that the doctors won't have all of the answers.  Start with evaluations.  A good neurologist can help sort thru the impairments and help find the cause. They can outline the impairments.  Testing such as an EMG (gee it's been awhile, hope those are the right intials) can help you determine where your husbands facial paralysis is at and help you chart a course of possible treatment in the future.  a neuropsychological evaluation will help to better quantify neurocognitive impairments.  An eye specialist to help keep watch on possible problems resulting from the facial paralsis. No one doctor will have all of the answers, but each doctor that you see will give you part of the answers.  Kinda like a puzzle, you may not have all of the pieces, but you'll have enough pieces to be able to see the picture.  Once you have the picture then plotting out the way will be easier.

Sherry, having walked in your shoes I have got give you a hug, and to tell you that i am so proud of you.  I know that this isn't easy and that there are easy outs that could be taken, but you stayed.  Next time Rascal Flatts "Everyday" song comes on , listen to the words.  That's you he's singing about.

Geez, I know that this won't make sense and i do apologize, but it'll make sense to Sherry, or at least I hope it does.  Sherry, please email thru this site anytime.

Hugs and prayers
Raydean
 



 



Do not go where the path may lead, go instead where there is no path and leave a trail.

Sheryl

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Re: How does everyone cope?
« Reply #21 on: June 27, 2008, 08:37:20 pm »
Raydean - I posted on this thread earlier but as soon as I read your post and Sherry's, I shivered and my eyes filled up when I realized that is what my husband and I are going through.  Yes, we try humor and "understanding" but I doubt things will be the same as "BT" - before tumor.  In fact, I have started seeing the psychotherapist that my husband had been going to - a wonderful, caring, knowledgeable man - and he said, "after what we've been through, your lives won't be the same".  We are still working through how to deal with the "new life".  My husband  constantly says he would rather have had a hip or knee replacement, heart surgery, or other procedure than to have his head cut open and then have this "benign" (meningioma) growth reappear 2-1/2 years later for an encore performance.  He refuses a second surgery and is dealing with the effects of swelling after Cyberknife and horrible reaction to Decadron which did not seem to help.  Every day is focused on our health issues - mainly his - and it is constant. 
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma.
Would affect gag reflex, facial sensation, tinnitus, and swallowing but no symptoms.
Only 7 mm of growth in 15 years. With no symptoms. Continuing W&W

Kaybo

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Re: How does everyone cope?
« Reply #22 on: June 27, 2008, 09:24:00 pm »
Sherry~
Your post struck a chord with me - not because I have to deal with someone who has changed, but because I have always felt like I changed!  Many times I have told people that I am NOT the girl my hubby married - and that really bothers me.  I think that the big saving grace for us, unlike y'all, was that we had only been married for a year and so we were still adjusting to each other.  I can't even imagine what it would have been like if we had spent most of our lives together and then the big whammy!  Even though it was hard because I was so young and that we had NOT been married for long, I guess that is yet another thing for me to count as a blessing.  On the flip side, I am pretty outgoing and on the go all the time so I might have driven my more low-key hubby insane if I had continued at the pace I went before AN surgery!!  LOL!!  Incidentally, I did have the "stroke" symptoms and I have asked the same questions about why the same side is affected but received no real answers.  I was in surgery for 14 hours...I really don't think that has EVERYTHING to do with it (I think Pooter had a LONG surgery and doesn't have all the effects I did) - it is the same ole answer - no two AN's are the same...
You will be in my prayers...if you ever want to chat, please PM me.

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

yardtick

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Re: How does everyone cope?
« Reply #23 on: June 28, 2008, 08:32:04 am »
K,

I've said to my girlfriend Pauline that I am not the same person I was two years ago.  I get feeling so down at times and it bugs the daylights out of me because I was the life of the party.  My husband has a harder time coping than I do.  He's had to learn to just let me go.  When I have really bad headaches I'm in bed.  When I'm better I'm back with him.  It really put a strain on our relationship, but we are working through it.  Louie doesn't like to see me hurting.  He feels helpless and he works in health care. 

Our social life has come to a stand still.  I can never commit to going out or entertaining because I never know how I'm going to feel.  I'm tired all the time.  It was worse when I was working.  I went from work to bed, from bed to work.  I never really saw my family or friends.  My one girlfriend Susie told me at Christmas that the sparkle has gone out of my eyes.  I was very mischievous.  My 17 yr old son is so much like me.  I would laugh for no reason, just to laugh.  I think that was one of the things Louie loved most about me.  Slowly I'm working on finding myself again.

I could cook for 10-12 people at the drop of a dime, now I'm lucky if I cook dinner for the 6 of us 4 out of 7 nights.  My house was spotless, now.....yikes.....its all hands on deck.  I crack the whip.  Everyone has to help, I cannot do it all even though I'm at home.  Yes my family has suffered along with me.  I am so grateful to have my family and friends.  Some days the old Anne Marie peeks through and I enjoy her as much as I can and hope she will stay around for longer periods of time.     

My husband, sons and a few very special friends have helped me cope.  This forum has had a hand in my ability to cope also.  Thank you!
« Last Edit: June 28, 2008, 11:01:15 am by yardtick »
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

MaryBKAriz

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Re: How does everyone cope?
« Reply #24 on: June 28, 2008, 10:40:19 am »
Anne Marie and Kay your posts really struck home for me. I have said to my husband, "I want me back". I am the neighborhood party planner. I am known for my smile, silliness and social nature. I was an enthusiastic analyzer and a fine artist - portraits. I don't feel like I am any of those things anymore but I feel an affinity for it all so I am hoping I will find my way back. Worst part I feel like I get easily agitated. My husband is laid back and energetic at the same time. This has helped and I know he has to miss the me I was. Luckily, because he is laid back, he is taking things in stride better than I am and his energy level is helping him to cope with added responsibilities. I have felt different since before I was diagnosed, even. I am fighting the hardest to be me again. I am not far off but there are some things, like being a professional artist, I am sure I won't do again. Others seem to think I am handling all of this well, so I think that is a sign that the real me is still there, it just is going to take time. Some of the negative symptoms I assume can be contributed to the fact I lost one of the best friends of my life to cancer a couple weeks after I was diagnosed. I know that made coping with things more difficult.

Sherry, I am thinking about you everyday. I am sending you hugs. I can only imagine how hard this is for you. I am cheering you on.

Take care,

Mary  8)
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Raydean

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Re: How does everyone cope?
« Reply #25 on: June 30, 2008, 03:04:46 pm »
Sheryl

Thank you for your kind reply   It was so easy to see myself in both your's and Sherry's posts.  It's really hard for most people to understand the "road less traveled"  Heck, sometimes we don't understand it and we live(d) it!!.  Part of the problem is the medical community in general doesn't have the answers that we seek.  As spouses/caregivers we hold onto the hope of "if we knew the cause" then "maybe there's a treatment".  It's hard balancing the reality of the situation, with the hope of things to come.  Harder yet is accepting that the best answer you may get is "just is".

As rare as this tumor is, it's much rarer to find yourself or love one in that 1% of outcomes.  It's not just the physical outcomes (which may be many), but also the quality of life issues, relationships, every aspect of the ANer and spouses life is touched.  It can be overwhelming and so easy to get lost in the bigness of it all.  There are no books, no road maps to direct us in the right direction.  So few  are these outcomes that it really becomes  isolating.   It took alot of inner strength and courage for both Sherry and Sheryl to post. If the answers that we seek aren't found within the medical community, how can we expect others to understand?  I think that most of the 1% are reluctant to post and share and are  very aware that of the content of what we post, often leaving out the really serious stuff because of fear it might cause others, especially the newly diagnosed.  Just being able to connect with someone that is walking in your shoes is very meaningful.

The support and understanding that Sheryl and Sherry receives will greatly touch their hearts.  Each post is like a candle, lighting the darkness.

If I can be of any help please PM me anytime.

Hugs
Raydean 
Do not go where the path may lead, go instead where there is no path and leave a trail.

bamboo

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Re: How does everyone cope?
« Reply #26 on: July 17, 2008, 01:19:23 am »
Hi, i'm new here. i'm 21 years old and my mom had acoustic neuroma surgery approx 7 months ago. As her son, i decided to drop university and work to be at home with her Its been a really difficult time as all of us have had new adjustments and challenges to deal with. She's always been so full of life and fire but since her surgery these few months have been a huge change in personality, mood and ability. I am sure it is unbelievably difficult for her to have her life change so drastically so soon and as her main caretaker it is difficult to encourage her and keep pushing her to take steps towards her recovery.
I guess i am wondering if other caretakers or family members noticed any personality changes or mood changes post-operative of the surgery? I feel bad to get frustrated sometimes with this "new" person i see and encounter everyday, but sometimes you can't help but miss who she was.
i would appreciate any other experiences or advice from other people in the similar situation

Debbi

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Re: How does everyone cope?
« Reply #27 on: July 17, 2008, 07:21:17 am »
HI All-

First, to all who shared - thank you.  This gives us all somethign to think about.  In my case, I started to wonder - in what ways have I changed?  I am less certain now in some situations and that feels very strange to me.  I've always been pretty confident and outgoing; now, I am challenged by going to the grocery store alone.   :P  I'm on hyper-alert when I am driving now - wlhich probably is a good thing in the long run.  I get tired and I have to lay down more often.

But (and this is big) I am still me under these new experiences and feelings.  I am lucky (like you, Mary) that my husband Willie is my rock.  He has always been the slow steady one while I have tended to run off in many directions.  We laugh that now I am finally walking at his speed - slow!  We go to bed earlier now because I get tired, but we make sure we spend that extra time well.  I know that it has been hard for him to see me go through the ups and downs and not really be able to fix it - but in many ways, this unwelcome experience has drawn us even closer.  I try to be sensitive to how scary this is for him, too.  I share my fears with him, because I think it helps both of us to put it on the table.

I have a philosphy for living that has really been put to the test this year - I beleive that, while you can't change the things that happen to you, you can control how you respond to them.  I sure didn't want to get this acoustic neuroma right now (or ever) and it has definitely made changes in my life and my business.  How I choose to respond to that, however, is totally within my control.  I occasionally let myself indulge in a little bit of self-pity; but usually my choice is to focus on the things I can do, rather than the things I can't do.  I hope this makes sense?  I still have so many things to be thankful for and I am more aware of those blessing than ever now.

For those who have loved ones who are struggling, try not to lose patience or get scared yourself.  Hold their hand, give them extra hugs, be understanding when they get tired or withdraw for a time.  And, definitely, talk! 

And, yes, talk to their doctors.  One of the things my husband and I did quite some time ago was sign the necessary forms with all of our doctors that allows our doctors to talk to us about each other's medical conditions.  This is extremely important because they cannot talk to a spouse without this due to the HPPA laws.  We are also in the process of doing this with my inlaws so that we can understand help with their health care.

I wish you all moments of serenity.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Jeff

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Re: How does everyone cope?
« Reply #28 on: July 17, 2008, 08:10:31 am »

I have a philosphy for living that has really been put to the test this year - I beleive that, while you can't change the things that happen to you, you can control how you respond to them.  I sure didn't want to get this acoustic neuroma right now (or ever) and it has definitely made changes in my life and my business.  How I choose to respond to that, however, is totally within my control.  I occasionally let myself indulge in a little bit of self-pity; but usually my choice is to focus on the things I can do, rather than the things I can't do.  I hope this makes sense?  I still have so many things to be thankful for and I am more aware of those blessing than ever now.

I wish you all moments of serenity.

Debbi
Well spoken Debbi. Here is a picture that I really like. It goes right along with your philosophy.

eff
NF2
multiple AN surgeries
last surgery June 08

MaryBKAriz

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Re: How does everyone cope?
« Reply #29 on: July 17, 2008, 10:21:02 am »
Hi all,

I LOVE the sailboat analogy - so appropriate for the situation. I think that goes for caretakers, too. I have been a caretaker in one way or another the last 5 years. It is difficult. Now I am the "caretakee" and my husband is dealing with me, my 88 year old mom, 2 grandkids here for the summer, taking care of our dogs, his new business, the house, cars, etc.

While I am gradually doing more and more then somedays I am not up to snuff and backslide. We communicate to get through this. He is the one person I can really open up to (besides this site) - so he is the reason most people are amazed with my attitude. He let's me vent and then I feel better. I try to be aware of how hard this all is for him. I try to encourage him to do things for himself. He needs some time for himself, too. I have been trying to do this as caretaker, also. You need a break just for you. Also,I am staying in touch here . This site has really helped me.

Debbi, you will never know how much of an inspiration you in particular have been for me. I thank you immensely!

Hang in there all.

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

 


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