Thank you for adding me to your group.
I was prompted to find a group after my partner (he had the aneursym) and I got into an argument about dinner.
I didn’t recognize the signs that it was too much for him to cook dinner, but he offered and he wouldn’t let me. But he became very aggro.
It’s difficult for partners to know when to offer help, when not to, when to recognize it’s too much for them. It’s also difficult to be the brunt of anger and not get angry yourself–like, how are you supposed to be understanding but not a doormat? I’m lost as to what to do.
Hey Christaine,
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends. When it comes to neurology (the brain) slight changes can have some MASSIVE effects. I’ve required a few neurosurgeries and none of the recoveries have been the same neither in length nor in symptoms/side effects.
You saying about your partner becoming aggro, ouch, that sounds familiar, …me too. For me a lot of it was frustration, not frustration with others but more frustration with self. I never needed help before, in fact, I was the helper. If others needed assistance, I was there to help and then suddenly, POOF, and many of those skills I had vanished, my stamina had vanished. I still had the drive to do things but my body no longer had the ability. Little tasks that were simple now seemed overwhelming, and the frustration of it all, just awful. I’ve often said ‘I don’t know how my wife put up with me…’
Us, males, we don’t deal with things/emotions the way females do. I’m sorry to say but some of us have no clue, we use brawn ie ‘I man, I strong…’ “I can deal with anything…” That is, until something so massive comes along that no physical strength can overcome it, then what? We often get overwhelmed with frustration and we often take it out on those around us, it’s unintentional, I didn’t even know I was doing it until the wife sat me down and we had a BIG, LONG conversation.
My wife was trying to help and I know that, but I wanted to do as I had before, only I couldn’t. Accepting that… …ohhh, that was a VERY bitter pill to swallow, I needed help, but I didn’t need it all the time. My wife could see I was battling but I saw it as building some sort of stamina to get back to ‘normal’. So we ‘sort of’ come to an agreement, if I needed assistance, I would ask and I had to be honest about needing help too. Asking for help when I’m in freefall from a great height is a bit late, so asking for help prior (or identifying I needed help before) crashing to the ground was not normal for me, so I had to learn that. But by the same accord (Well, ‘same’ in my view) my wife had to learn to back off. We agreed to set some boundaries for both of us.
What to do?
Personally, I would suggest you need to have an open and frank conversation. Your world’s have changed somewhat for both of you, but in differing ways for you both. Have a sitdown, open conversation where you can both explain where you are at and get him to explain just where he is at too. This way you can both explain your views, your concerns and come to some sort of consensus. Again, sometimes us males just don’t see (let alone understand) where out partner’s mindset maybe at and sometimes we need to have that explained to us. Yes, it’s stressful for us the patients and often because of that personal stress, we forget that it’s just as stressful for everybody else involved around us too.
Now look, I am the very last person who will tell you this is all a simple, straight line process, why? Because that would be a straight out lie. There are more humps, hollows and twists than a rollercoaster on this journey, but if you can give your partner some guidance and take some guidance from him yourself, those ‘humps, hollows’ don’t need to be as impactful. There needs to be a little give and take from both sides.
Start with a chat.
Hope it helps.
Merl from the Modsupport Team
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Welcome @ChristianeDolores! You’ve certainly been through it. As Merl has said, open communication is key to helping each other. I ruptured, I’ve always said I popped my pipe. I also have personality changes, the main one for me is I talk way too much. I now will often tell myself, “For the love of God, shut up!” But it took several years for me to have awareness of my thought processing, I didn’t have the words for it back then, just that my brain was black. I had no emotion so any would have been a godsend in the beginning.
After my release from NSICU, I came straight home with no rehabilitation. My Neurosurgeon was in another county and didn’t know what was available in our rural area so she left it up to my then PCP who was also ignorant and could only tell me to get a new Neurosurgeon. Fortunately, I knew I needed speech and physical therapies and I knew where to access them. I also needed OT, but the one OT in our area that worked with adults was booked. My Speech Therapist worked with the OT and one of the things I had to do was cook something simple. We decided on sopapillas. She forgot a couple of ingredients and I had to look in their cupboards and come up with alternatives like sugar instead of honey. We used flour tortillas instead of mixing the pastry from scratch. No deep fryer, so pan fried. I thought I did ok but knew I had some problems. Those difficulties resulted in a doctor’s order not to cook unsupervised.
My BH and I eventually came up with something very workable for me as I still need things to be slow in the kitchen. I do all the prep work! I get a list of what we are having as well as the recipe. I start at the top as if I was going to do the cooking but I put everything in the proper amount in little dishes, spices and everything else. I have to go over everything multiple times because sometimes I skip some ingredients It can take several hours even now. In the beginning, I would use sticky notes, then I just started using a sharpie on the Saran Wrap. It wasn’t for BH, it was for me.
When BH comes home from work, it’s really easy as everything is ready to put together! I don’t need help grilling for the most part so we grill when weather is decent. I stopped grilling in rain and snow sometime back, age is catching up with me and I use charcoal not propane.
More importantly, you both need to have patience and a lot of it with each other. It takes time to learn what we can and can no longer do. Not weeks or months, but for the long haul as our brains are constantly finding new pathways. You, like BH, will have to learn to read body language and other tells before frustration or anger set in for both of you. He will have to learn or relearn as well. It’s a two way street. He may no longer have the ability to read body language. He may no longer have the word he wants to use, or like me, when he becomes overly tired his words may make no sense whatsoever. Try to work out with him what chores, etc he is able to do at this time. I was really frustrated in the beginning of my new journey because I knew what I no longer knew but didn’t have the words if that makes sense.
Treat each other as best friends right now. If his words are unkind, let him know, but don’t fight over it. Take a time out if you need to, it will be ok. As a once very independent person, my biggest challenge was asking for help when I needed it. Like Merl, I was in a helping profession. Remember overstimulation is probably going to get the best of him as well as lights if he has photophobia. He is very early in recovery and your health issues sure aren’t helping you, I feel for you as it must be very difficult right now. These will pass, eventually. He may need some cognitive therapy which in my opinion the best for any type of brain issue. Have the surgeon or a doctor recommend it rather than you. It’s ok to ask them for help and really good if you can talk about the issues y’all are having as a couple.
We are here for you. Don’t give up on yourself or your partner!
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OHH WOW there are so many ‘Yes, yes and yes’ for Moltroub’s statement’s above
Personality changes…Yep
Years for me to have awareness…Yep
I didn’t have the words for it back then (can’t express self)… Yep
PCP who was also ignorant (ill informed)… Yep
And then these 2 whole paragraph…
"More importantly, you both need to have patience and a lot of it with each other. It takes time to learn what we can and can no longer do. Not weeks or months, but for the long haul as our brains are constantly finding new pathways. You, like BH, will have to learn to read body language and other tells before frustration or anger set in for both of you. He will have to learn or relearn as well. It’s a two way street. He may no longer have the ability to read body language. He may no longer have the word he wants to use, or like me, when he becomes overly tired his words may make no sense whatsoever. Try to work out with him what chores, etc he is able to do at this time. I was really frustrated in the beginning of my new journey because I knew what I no longer knew but didn’t have the words if that makes sense.
Treat each other as best friends right now. If his words are unkind, let him know, but don’t fight over it. Take a time out if you need to, it will be ok. As a once very independent person, my biggest challenge was asking for help when I needed it. Like Merl, I was in a helping profession. Remember overstimulation is probably going to get the best of him as well as lights if he has photophobia. He is very early in recovery and your health issues sure aren’t helping you, I feel for you as it must be very difficult right now. These will pass, eventually. He may need some cognitive therapy which in my opinion the best for any type of brain issue. Have the surgeon or a doctor recommend it rather than you. It’s ok to ask them for help and really good if you can talk about the issues y’all are having as a couple."
…to which I cannot agree more with.
This is going to be a HUGE learning curve for both of you and I’m sorry to say it like this, but the primary emotion for both your partner and yourself is going to be one of frustration and that is pretty much normal. The only real way to deal with it is to talk and sometimes this can mean talking to a counsellor too and that’s for both of you. My situation didn’t only have an impact on me, it had a huge impact on my wife and to a lesser extent, other family members too. Some see asking for help as being a weakness, I disagree. Asking for help shows you’ve thought about it, decided you need some assistance and are doing something about it. Doing the same thing over and over, expecting a differing result is silly. We already know the result. Using outside resources, that’s smart. That’s what those services are there for, to assist. Use them to your advantage.
And remember, we’re always here if you need.
Merl from the Modsupport Team
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Good Morning & THANK YOU All,
I’m so deeply touched by your thoughtful and giving responses. When I first read them, I felt a weight lift release my mind and lift my heart. That powerful thing that happens, when you realize you are not alone–imagining things, overreacting, and the whole gambit of feelings that can’t find the words. I truly appreciate it. I even mentioned this group to my partner, in the hopes that he may want to join.
It is definitely difficult for both of us, who are as you said “the helpers” in the family, to know when to ask for help, where to set the boundaries of no can do. However, each day it becomes easier. Our community of friends have been exceptional in helping us to be able to accept help.
We’re both on this journey of healing singularly and together. You find yourself confronted with habits you didn’t see before, such as my need for everyone to be good, happy. I’m learning how to “back off”, be quiet and wait.
Thank you so much
Holding your words near and so glad I found this group.
Happy Sunday
Big Love
Christiane
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Our group is what support is all about and I hope others will add to your topic. It’s the baby steps that get us to where we need to be and we have a lot of experience with it here! I’m happy to read that we are able to provide some support to you!
On asking your husband to join, of course I personally think it’s a really good decision as he will have access to others who have ruptured. We also have numerous members who’ve experienced TBI’s and those who had an incidental finding with either a repair or put on the watch and wait list. We can help to support him. The only thing I can see giving him hesitation would be venting and not wanting to hurt your feelings. Please have a conversation with him setting ground rules that either of you are allowed to say what you want here and not have an argument about it off line. You both need a safe place to vent or ask questions.
Should he not want to be a member here, it’s ok. Depending where you reside in PA, there’s probably a support group. He may want to try with UPMC. And there’s the Joe Niekro Foundation out in AZ that has support groups online, I believe, not to mention the wonderful cousins at The Bee Foundation has virtual support groups found here TBF Brain Aneurysm Support Hive - The Bee Foundation
You both may want to look at the calendar here under the BAF section as Martha is always posting online support groups meetings as well. Hopefully something will spark his interest. Some of our members are also members with other online support groups. We really need all the support we can access don’t we? I don’t do FB, but there are many there as well, I understand from BH who does have an FB account😂. With any group, I would suggest if you feel you’re not receiving the support you need, or the others aren’t helping but hurting, reach out to the Moderators of that group. Try to keep chaos and drama to a minimum if possible.
Hi. It’s been a long time since I’ve posted however this thread is apropos to my situation with my husband once again. He had his rupture and coiling over a year ago and the person who came home was indeed “changed.” I accepted that. I had talked with my therapist and family members about how i could best handle MY feelings and emotions and frustrations. I got a lot of tools for myself. Dan was frustrated and we had many heart to heart talks about me trying to provide a safe space for him to express himself. I invited him to 2 of my therapy sessions to work on how we can communicate best where each is heard. It worked on and off for a bit. However he did take a lot of frustration and anger out on me verbally and when I attempted to communicate my feelings as calmly as possible, he apologized and "promised it wouldn’t happen again. " i heard that too many times. Every time I would let myself start to feel comfortable with him, he’d go off again, instead of trying to use the tools we both learned in counseling (breathing, taking a minute, leaving the room, going for a walk, journaling, talking to someone else). I was actively practicing these things when I felt hurt or frustrated at how he was treating me and talking to me… Yes i heard him every time he shared his frustrations and i verbally acknowledged that every time. He doesn’t open up much to me (or anyone). I have backed off from asking him questions unless they concern us or our dogs. He has shared that too many questions are overwhelming so it’s my way of letting him know that I heard him… Last Wed night he looked me in the eyes and told me over and over "i don’t love you anymore. " That’s the most hurtful thing he’s said. I didn’t react in anger but in hurt and expressed that through words. He didn’t seem affected. He has the ability to control his frustration and anger without taking them out on me because he’s done it and I’ve expressed my appreciation letting him know that his efforts were appreciated. That night, however, he had no provocation and he tried to explain it off by saying that he was trying to say something that would make me tell him to leave because he’s convinced that I’d be better off without him. I’ve corrected him with my feelings, telling him that i disagree and do not feel like I’d be better off without him. I acknowledge that he feels that way. I’ve suggested counseling many many times always shot down… This time, since he seems to think that he can continue to say hurtful things and I’ll just forget about them, I’ve reinstated the counseling thing because I can’t take this any more. We are currently living together however 2 weeks before our 11th wedding anniversary, I’ve had to seperate myself from him emotionally because the damage is too deep. I’m not going anywhere nor am i telling him to. I’m trying to process this in my therapy and said that he needs to find his own way of processing his anger, hurt, frustration and sadness because the ways he’s been doing it (avoidance and blaming his brain) are not working. I do not want to have to look farther into the future other than trying to have hope. He’s been acting like nothing is wrong when he’s watching TV downstairs (we have a tiny home, unfortunately) and said that he’s sad because he’s been replaying all of our past vacations together. I told him honestly, not meanly, that the way things are right now in this moment, i wouldn’t want to go on vacation together. I need to see that he’s invested in us and communicating effectively and recognizing triggers and letting me know so we can improve our shaky relationship… I’m at a loss and cry all of the time…
It must’ve been very hurtful to have him tell you that. Sometimes we who have ruptured can be very difficult to live with. Has his doctor put him on any new medication? The only time I was mean to BH was when I was on Chantix to help me stop smoking.years ago. I told BH to move back to the other house, it was quite upsetting and BH got madder than a hornet. My brain literally felt like the back of it was on fire and I was afraid I would hurt BH. All I could keep saying was “brain burn, brain burn”. Once BH calmed down I was asked if I’d come do the yard work, I asked if BH would cook my supper everyday. I never took Chantix again.
Men seem to be more hesitant on going to a therapist. I imagine it’s because society has insisted men be strong and are not taught to ask for help when needed. In fact many people think that the only reason to see a therapist is if someone is crazy which isn’t the case at all. In the past, I’ve always suggested if you want to have a good conversation on an important subject, wait until the guy is piddling about on something. Men seem to do better when their hands are busy. However, that may be too difficult for someone who’s still in the early stages of recovery. I hope one of our male members can help out with that.
I’m going to move this entire topic out to just General in the hopes you will get more members to respond.
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Hey Kim,
I hate to admit it, but @Moltroub is correct in regard to ‘men’. We’re taught that women are the touchy feely types, in touch with their emotions and men deal with it with Braun, but when braun doesn’t deal with anything (only hides it behind an artificial wall), then what? Well, then we get frustrated and often take it out on those around us, who, more often than not, are the ones we love. We end up pushing everyone away. How do I know this? because I did the same damn thing.
I told my wife, if she wanted me to leave, I understood and I would go. In my view: This was my battle, my load, not her’s. She didn’t sign up for all of this. I didn’t think it was fair on her to have to deal with me, to feel obligated. I was removing any sense of obligation. That was my intent. Now, how I put that across in my ‘fogged mind state’ was destructive, almost matter-of-fact like ie ‘I’ll just pack my bags then…’ She was annoyed with me, not because of what I said, but the way I’d put it across. She was annoyed that I thought she’d leave or want me to leave. I was trying to make it easier on her, to give her a reason to get rid of me. She told me straight up, she wasn’t going anywhere and I stopped pushing her away.
We had a big, long conversation about communication and emotions and how we express them so that neither of us let it get to that point. I’m a male, words don’t come easy (or the wrong words come easier) and my frustration with finding words, minus the expletives, annoys me and out come the expletives. My frustration is more with myself, but I focus it at others. My wife can read me like a book, she knows my signs when I’m being overwhelmed and at times has needed to call a ‘Time out’, just to break my self-destructive mindset. My tiredness or level of exhaustion played a big role in this too and she learnt to read those signs too. I’d try and tell her “I’m OK” she’s look at me and tell me straight out “Well, that’s a lie. Look at your eyes…” my eyes give my pain level away and she knows it. Damn it.
This whole scenario is not easy for anyone, but you need clear lines of communication and an understanding of each others views and why. Without those ‘clear lines of communication’ things are often left to interpretation and we can all pick up or interpret the wrong signals. I know I do. Badly sometimes.
Merl from the Modsupport Team
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