I don't know how to be supportive

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.:joy:

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.