Survivor Spouse not doing my job well

General personal-stories
1

Hi,

I was hoping to get some feedback on how I can manage tricky situations. My husband is in recovery..his surgery was only 3 weeks ago. He's being doing amazing though. I always say if you didn't know..you wouldn't know, besides of course the huge scar on his head from the clipping surgery. However, looking deeper there are of course still some effects. One of the things is that when he gets upset his head starts to hurt pretty bad (he's blamed me for almost killing him because I got him upset). I know how serious this all is and it has been the worst experience of my life. I don't have my family in this country though and I'm working this all out with myself. I talk to my family on the phone, but it's not the same and they are 8 hours ahead of my time...so it's just hard. His family has been overbearing to me, too since they know how to care for him better that I do in their minds (his mother) and I have a lot of built up frustration around that. There are also some every day things that come up and again since he seems mostly normal, it's easy to fall back into the usual ways. I feel like my lack of sleep has a lot to do with it, since we had to get up every 4 hours for his medicine and I still have to get up at 6 to work a full-time job. So I know I'm not handling it as well as I could. I don't have an outlet and I feel like I have to take it. I am not a person that easily takes crap from anyone. So to keep the peace...mostly anyway...I'm going crazy. And my husband has his own health to regain so he has no time (or mind) to really consider what I'm going through. I have good friends and all that, but it's just not the same as getting that support from your partner. He's an amazing person and I am so proud of him. I could just use a little love and understanding too and I don't know how to get that right now. Or if I'm even allowed to think that. Am I wrong for that? It makes me feel so selfish because he's the one going through the real pain and changes. I feel like so much is expected of me and I just can't handle it. Any same experiences, suggestions, recommendations...? I want him to heal and not burden him with my issues.

2

Hi Dominique,

My husband has not has aneurysm surgery, I have. But, my husband has had two really serious illnesses during our marriage so I have an idea of what you're going through. We don't have any family nearby so I've been on my own each time. Both times, I was working full time in a quite demanding job. The last time, I was able to work from the hospital and from home. But, I finally had to call and ask my sister to come for a two week visit. I needed family support.

While your husband is recovering, it will be difficult for him to provide the kind of support you want and need. It will also be a challenge for you to understand how he's feeling and what he's experiencing. However, it may be possible for you to feel more supported and for him to feel understood, if you and he carve out some time each day over coffee, tea or some "special" non-alcoholics drink just to "share" what you each are going through.

Something that was very helpful to my husband, and to me, was when he had some "guy" time. For example, when a male friend came over and spent a couple of hours with him or took him out for a while. It gave both of us some "away" time.

Doing something soothing for him can also provides a type of intimacy for you both. Touch is powerful! A foot rub is an example of something that both the giver and receiver can enjoy. It's possible that he might just be willing to reciprocate.

I hope this will be helpful. May God bless you both.

Carole

3

Hi Carole,


Thank you for your response. I really appreciate it. I think your suggestions are great and want to integrate them. Thank you also for understanding me and sharing your experience wtih me..that alone makes me feel better about everything. It's amazing how wonderful people are..that don't even know you. Thank you. It really is a blessing.

4

Lynne, thank you for your kind words and support. It really does mean a lot to me to have this outlet and confirmation that the way I'm feeling is normal. I have to say that since I wrote this email, my husband is doing even better and has finally acknowledged my need for rest, calm and love. He's a great person and I just need to be patient. As long as I can write about it, talk about it, I think I will be ok. :) Thank you all again. It's so good to have support! Oh and his parents just retired, so they were waiting for a good time to move to their new location....which is a 6 hour flight away. They are leaving this week. Kind of relieved...

5

Hi Dominique,

I'm glad that I was able to help.

There's a BAF member, Ken Stratmann who has a blog posting "A Letter From Your Brain". I like to recommend it to people because it gives a really good description of what this journey is all about.

As a side note, this weekend I heard a segment on "This American Life" about a couple who were having some difficulties until the husband was diagnosed with Asperger's Syndrome. What I understood from the segment was that when words were given to what he had been experiencing all his life (and his wife had an understanding of it), he felt liberated. They were able to identify changes in behavior that allowed him to function better in the world and to improve their relationship. The path forward started with the wife using an on-line questionnaire to walk-through Asperger's symptoms with her husband.

Maybe Ken's blog can be a help to you and your husband.

Please remember that we are here for you both, so, please don't hestitate to use this forum to blow-off steam. It's healthy.

Best wishes,

Carole

6

healing takes time and dont rush the process, take one day at a time and one upside or downside at a time.

7

Hi Laurie,

Thanks! I'm taking this whole new life situation as a sign to change some things for the better...like being more patient. It's a big learning for me..and my husband as well. He was ok'ed to go back to work according to the doctor, but his work is now restricting him and put him on 12 hours a week only, and changed him from salaried to hourly. It's a real blow to my husband, considering the doctor said he was ok to work. Are they allowed to do that? I don't expect you to have that answer, it just seems so wrong. He doesn't have a labor intensive job, so it seems odd. We almost feel like they are trying to fire him without firing him. Anyway...I'm confident things will continue to get better. We both need to be patient. I do have one other question. He says he "is here but not" when it comes to his brain and is so scared that he's not going to continue to get better. Since I don't truly know what he's going through, I told him he needs to get support and talk to people with similar traumas. Any words of encouragement I can give him?

8

Hi Jim,

Thanks for your response. I think you're right about those issues. I'm not sure what else is going through his mind, but I know he's uncomfortable talking about them. I'm going to get online with him tonight and have him sign up for this page. I think it will be helpful for him to talk to survivors like yourself. I think it would also be very encouraging for him and give him an outlet.

9

Hi Laurie,

The journey to full recovery is so different for each of us.

One way to look at the actions taken by your husband's employer is the change may be for your husband's safety as well as for the safety of his co-workers. Although, I have some questions about their changing from salary to hourly. Personnel policies differ from company to company. If their action permits you and your husband to continue to have benefit coverage and they haven't put a limit on how long he can work at his current job status, I might not be too hard on the company.

Does (did) your husband like video games? May I suggest the Nintendo DS II or another system on which you and your husband can play the Brain Age 2 games. There are some "brain" games on line but I really like Brain Age 2. The games have increasing levels of difficulty that allow you to play against yourself. You can gauge your improvement while building confidence.

Please consider giving it a try.

Carole

10

Hi Dominique, my husband is 24 month brain aneurysm rupture and stroke survivor, some days I don't know him. I day he threatened to rip my head off and then a few weeks later he said he hated me. I was crushed by his statements - he's never talked to me like that in our 25 years together. I didn't hold a grudge but my feeling were hurt and I asked him each time "why did you say that to me?" he didn't know what to say. He has aphasia (difficulty speaking). He's getting better though - he started getting acupuncture treatments 4 weeks ago. It is helping him not be so anxious, fatigued and in pain. You need to let him know in a nice way how you feel about things also.

11

I just thought of this also- I was an emotional and physical wreck when Frank got sick with his ruptured aneurysm and then he had a stroke and they found an unruptured brain aneurysm on the other side of his brain. every time I looked at him I'd cry because I thought he was dying. -- Then I talked to my friend, Susan, and she was very wise and told me that - your life as it was before is gone. you have to accept your new life, she saved my marriage and my life. I started handling what I could handle and started treating him like he wasn't on deaths door. You have to get ahold of yourself and accept your new life - as soon as you can do that it will help tremendously. Tell him to quit giving you guilt trips that you're having a hard time of it also. you need to experience your true feelings to him. good luck and god blesss. cindy

12

Dominique,

I am not able to give you the all the best anwsers but can give you a peek into what your husband my be going threw!

Hello,

I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.

I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.

How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?

Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.

What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.