I had surgery 16 months ago and always keep myself positive..however, this situation defeats me. My husband had always been with me and last week he told me that he needed a 'break' from me and him having to repeat word for me many, many, times. ( I have brain injury) I just don't know what to do about this. Most of us need a break now and then but this is the first time in 12 years together that he has ever needed a 'break from me!! I just don't understand...I have come a long way, re-learning to talk, write, read etc, and I know it must be very hard for him too, but this had shattered me. He is away for a week and whilst I am doing ok, I am so very sad and lots of crying I'm afraid. Does anyone have any ideas as to how I can deal with this? I am also having an angiogram on friday to make sure there is no new anuerisms. If you have any ideas to help me, I would really love to hear from you.
Wow, we really never know how much this AVM thing effects other people, until something like this happens, huh!!! We all want the perfect person who can be there for us through thick and thin, but reality sometimes never matches that, after all, none of us are perfect. Please stay strong and (even though this feels like crap to say) know that there was nothing you could have done differently (like, could you have only asked him 11 times to repeat himself instead of 12 that one time???). He is going through growing pains, he’ll either grow to accept the new ‘you’ and your new situation (both of your situations) or he won’t. But stay strong for yourself and your recovery!!!
Hi Lesley, I’m not much of a talker to begin with but my wife wants me to report my day to her when I get home form work eeeeveryyy day. I’m a Realtor and I get a lot of phone calls all the time. Whenever I’m with her and I get a ph call from a client or a internet lead she wants to know who it was, what did they want etc etc. My answer is usually always the same but honestly after a while it dose get me to the point were I could use a break now and then. I cant speak for all men but coming from kiwi male, if he needs a break and asks for it let him have it without resistance. And you, don’t stress about it, have some fun for yourself.
Thank you Nicole, and you are right, there was nothing else I could do as my language skills are not great, but they are getting better! And yes, he will grow to accept me now, or he won’t; whatever happens, I will stay strong and continue to recover. Again, thanks so much for your support.xx
dear lesley belive me your not alone its harder for the people closet to us i have the most caring wife of thirty years but we both had to have time out you and me and other avms can relate but partners feel shut out and i think just need a week of not hearing obout the avm my wife has said to me theres hardly a day goes by i dont complain or wish i was like my old self and not so tired weak dizzy etc etc so a break can be a good thing as long as you know its whe best thing for both of you it sure helped my wife and i and we love each other more than ever please dont hurt youreself more than your already hurting. things will work outwill work out stay strong shane crottyxo
Just wanted to let you know that I think every thing will be okay,Mike has been there for you all the way as you told me when we meet. Now he needs to have some space,I think he has been going on auto pilot since it all happend,then his Fathers health wouldn’t have helped. I think he just needs to sit back and take it all in. I know it is upsetting but you are a very strong person and you will both work it out.
If you wan’t to talk you knew we are always here, also let me know how you go with the Angiogram on Friday. Remember stay poisitive,you are in my thoughts.
Love and Toodles Gay
Dear Lesley…As I’ve been through the same issue, it wasn’t with my husband, who passed away before I had my AVM, it was with my Daughter. She took care of me for a year after my brain bleed and after awhile, she became tired. However, as I’m getting better so is she! Stay strong and keep working on yourself.
Lesley, I definitely feel for you as well. My husband and I had been married for nearly 20 years before the day our lives changed. He was there almost constantly during the 2 1/2 months I was in the hospital. He was there almost constantly after I got home and still couldn’t take care of myself. And now that I am able to be left alone without causing too much damage to myself or our house, he’s still here.
Yes, it must be very difficult on those closest to us, especially when they are bearing the brunt of our injuries. Imagine how difficult it was for them fearing that we wouldn’t live or if we did live, in what capacity would we be able to function? And then how exhausting it must be for them to be so depended on! That’s a huge load for them to bear.
Your husband probably just needs time to process everything and to deal with his own emotions about all of this.
For you part, however, I understand how scared and alone you feel. I would absolutely panic if my husband said that to me. Though I do manage to function daily on my own, there is no way I could live independently now nor probably for the rest of my life. You probably feel abandoned and very very afraid!
But ultimately, you need to take care of you, whether your husband can find the strength to deal with this or not! No matter what happens, you will continue to recover and you’ll need to figure out how to live your best possible life, with or without him. Stay strong and don’t let this set your recovery back. You keep going!!
Lesley I can’t agree more with everyone here that sometimes our love ones just need a little break and I believe sometimes it is harder on them then us. I know it really gets to my husband at times. Keep strong!
Sending all by best to you
What can I say?? Thank you to all of you just doesn’t seem enough. Trish, you said exactly how I feel and I have been very selfish. I will stay strong and work harder at understanding how he will be going through. Thank God for this site and for all you amazing people who understand me and my recovery Thanks to Lee Ann, Triish, Lousia, Gay, Shane, Brett and Nicole. I would be lost without you all. xx
Lesley, you are not being selfish, not at all! You feel how you feel, and your are absolutely entitled to be feeling it!
I will tell you that your post sparked a huge discussion between my husband and I last night. I was so saddened by it and it brought back all the fears I have about it all being too much for my husband and the fear that he would decide to pack it up and move on to an easier life.
He and our children are my whole life and I can only imagine what I would do if he decided to leave.
But like the old saying, that which does not kill us only makes us stronger…You will do this, and you will be so much stronger. You will surprise yourself at how truly fabulous you are! Please don’t hesitate to reach out to us again, whenever you need us!
I just could not stop crying, and just wishing I could give you a big hug. Wishing that your husband could know just how deeply you are hurting.
So, if it’s any consolation, you helped reassure me that my husband, while often frustrated beyond comprehension, is still in it with me, at least for now!
Is there a supoprt group in your area? My husband and I attend a monthly meeting for people with AVMs and aneurysms. It helps the caretakers (spouses, families, and friends) as much as the patients. One man comes alone, since his wife is too sick to attend. The caretakers get to share their frustrations and understand what is part of the recovery/coping process. Everyone is learning how to live a “new normal” life. Another option is hospice care. Many people mistakenly believe that hospice is only for end-of-life medical care. But hospice is also for chronic problems and non-medical issues. My sister volunteered with hospice and would help with things like sitting with the “patient” for an hour or so while the caretaker went to the market or doctor’s appt. Sometimes, my sister would just help with little chores (like sorting photos for a couple trying to make a scrapbook for their children.) You both need a break. Good luck.
Trish you are a wonderful lady. Thank you so much for your true and loving words. Sometimes I just don’t know if it’s my ‘normal’ head or my injury talking or thinking! I too would have loved to have a big hug!! And yes, I am so glad that through this hard time, I was able to help you a little.
My husband comes home today, so we’ll see how things are; he wants to be here for my angiopram tomorrow, so I guess that’s a plus. Take care Trish, and again, thanks you.xx
You are a brave soul for sharing your story with all of us. I went through a lot of same experiences that you are going through, I’ve had an AVM more than 4 years ago. I guess all AVM survivor would go through some sort of personal trauma. I had the up and downs as well, at times I felt so helpless, angry, however there are times when I feel happy and blessed to have survived. My relationship with my wife has also gone through many roller coaster rides. After a couple of years of this struggle, I came to the understanding that everything in life happens for a purpose, after a friend of mine gave me a book called “A purpose driven life”. My solution is to find faith in God and pray. I am happy to have my wife and my children, and every moment that we share is a blessing. I am happy with each day that she gives me.