Changes in behavior

[Susan c]

Hi all, 

 

I joined this group almost 5 years ago after my husband suffered a SAH while we were on vacation.  I am extremely lucky that other than some differences in behavior he is very well physically and mentally.  I am certainly not his caregiver as he continues to be able to take care of the house and work.

 

I don’t want to sound like I am complaining because really I am beyond blessed with his outcome.  I just don’t know how to react or respond anymore to his change in behavior.  I used to be out of the house 50 hours a week for work...working from home for the last year so I think it is just more apparent.  

 

Some things.... in bed at 8:00 almost every night and I understand his brain needs to rest (this I can be fine with if he would make an exception occasionally), he shuts down at 6:30, goes to his tv room to watch reruns of older shows (so it gets a bit lonely) it seems like he is always looking for attention repeatedly saying the same thing  (hey, look what I did ...).

 

He is the cook but after SAH constantly corrects everything I do or has to be in control to the point I am banned from the kitchen until eating and clean up duty.  It all sounds so trivial, but it is the same thing and same conversation every single night.  I don’t know if his need for control and reassurance is because he lost some of that? 

 

I love him, but I don’t know how to address any of this with him.  He doesn’t see any change nor do I want to make him feel more self conscious.  As you all know, you leave the hospital with a few sheets of after care instructions, but no one talks about the changes.

 

How do I address these issues with a man that already feels different without making it worse? Do I talk to his doc, find one for myself?  Just not sure... anyone have feedback?  

 

Sorry one other thing... he complains that I am yelling.  I know he is sensitive to noise and often when in a room with lots of conversations it can be overwhelming....but I am not yelling or raising my voice.  I don’t know how to address this either because he will get mad and shut down... ugh, I feel like I need to change my approach or my behavior but nothing I do seems to help.

[Tina]

Hi Susan  

 

Bless you, its so hard sometimes. Sending hugs your way 🤗 Never feel like you are complaining. I know your husband went through it, but so did you and both are adjusting to the new him. Lock down this past year has been very hard and working from home and being together 24/7, you have noticed these changes in his ways so much more.  

 

If you feel you really cant sit down and talk about this with your husband. I would definitely go and see his Dr, maybe go together. Your GP can refer your husband or both of you for counselling. It would be an opportunity to discuss your feelings.

 

I know you dont want to make your husband feel more self conscious but he may be totally unaware how you are feeling. I am sure his need of control and reassurance is because he lost some of that. Your lives have been turned upside down. It can take a long time to come to terms with whats happened.

 

I was a very independent person before my SAH. I worked full time and hated that i could not do the things i could before. I got very frustrated at myself. I also hated noise. This did improve over the years. I still suffer with fatigue and most nights i am in bed by 9pm. My body just goes on close down.

 

My husband has been amazing and very understanding. We talk a lot about how we feel and always have. This really did help.

 

If i go out for a late night it would take at least two days to get over and always does. Its about compromise and meeting in the middle. Communication is so important for both of you. For your husband, its about learning his limits and again compromise.

 

At 5 years i was getting there, but still struggled. I am now nearly 14 years down the line and still struggle. Good days and bad days. I had counselling in the early days and it really helped me to talk things through.

 

I hope things get easier for you both and you get some help.

Keep in touch and let us know how you are both doing.

 

Take care

Love Tina xx 

 

 

[Susan c]

Tina,

 

I cant thank you enough for your response.  I will certainly try again to talk with him.  And I can talk with his Primary care physician since he is mine too and he knows everything that has gone on.  And I need to go talk to my psychologist as well to help me better address what is going on.  

 

I just want him happy. Honestly, some times I get angry missing some of what was, but then I feel guilty. Damn, he is alive, he loves me, I love him, we have a home, we are safe and most of the time I like him...lol. And he is the strongest man I know❤️

 

I reread what I wrote last night and I thought, wow, how selfish and ungrateful.  I do believe some of this is due to the isolation of the past year...but good news, first vaccines for both of us tomorrow.  And after both vaccines we head back to our favorite vacation spot almost 5 years to the day he had the SAH.  Our happy place❤️

 

I know he gets tired and needs his quiet time.  Who doesn’t?  I see it in his face sometimes when we are out like it’s too much for him and it breaks my heart.  And yes noise...especially noisy rooms.  

 

I wish he would talk about how he is feeling, but that didn’t happen before and I am a heads down, what do we need to do to get through this personality.  This level of communication is hard for both of us. I think my reaching out was looking for reassurance that it is ok to feel frustrated, or sad, or lonely.  Thank you for letting me know this is normal and real.  Will be making some calls come Monday.  

 

This site kept me sane the first year after the event.  I may not have posted because it was too raw and I was being me (needed to handle everything) to just make it through.  Thank you again Tina.

[Tina]

We are always here for you Susan. So pleased BTG kept you sane  It has been a Godsend for me and many others too. Glad you are going to try and talk to your husband again and make some calls. Yes, it is more than ok to feel frustrated, sad or lonely. It is very normal to feel this way. You are both going through a huge life changing trauma. 

 

I hope no nasty reaction to your vaccines and you both have a lovely vacation. Your happy place ❤️ enjoy, you deserve it  

 

Keep in touch

Take care

Love Tina xx

 

 

 

[V.Mama]

@Susan c my husband had a NASAH 2.5 years ago.  I can relate to some of what you have said, an increase in rigid behaviour or thinking that can drive me a bit bonkers sometimes.  Our lives, especially at home, are made up of a myriad of small things, so when something gets on our nerves, it can change how we feel about life at home.  And yes, working from home has meant we have seen a lot more of each other.  I have also had a sick 15 yo at home for 9 months, and I work from home, so having the house to myself is so super rare. 

 

I agree with Tina, you have both been through an immense trauma, and while survival and 'signs of life' as I put it are still amazing, we are human, and imperfect.  Sometimes things annoy us, but it doesn't mean we don't love our partner or that we aren't super grateful to still have them here.  

 

Here's a few of my observations, partly personal as a partner of a NASAH survivor, partly professional as a person with expertise and experience in supporting people with disability:

 

- survivors of SAH have experienced some damage to their brains.  This doesn't mean they have lost intelligence or cognition, but that their cognition may be changed, slowed, sometimes get a bit clogged up, and tasks that they used to do without thought now take active concentration at every step, which is exhausting for them.  

 

So some rigidity around routines/not being interrupted during a routine etc, are their way of coping and still being able to be as independent as possible.  Adults all need to feel capable and competent, and people with brain injury are often very aware that their brains once worked differently, and there is certainly some self protecting behaviours (pretending or denying there is a change), some anxiety ,and some grief about that.

 

 As partners, we also grieve the loss of the capacity that our partner once had.  This is normal, it happens a lot, and it is ok to feel these big and conflicting emotions.  Being able to name it and talk about it might be helpful, but as you say, it might be better for you to have this conversation with a counsellor.  

 

Your husband may or may not have a need to talk about it.  My husband and I talk about it quite a lot, especially when it is really getting him down.  Being understood, and being reassured that what he is experiencing is a real thing helps him to cope. 

 

- The fatigue your husband experiences is huge, it never goes away, and it has a real impact on his lifestyle (and yours).  I know that if I want to go somewhere that is noisy, or busy, that my husband probably will not enjoy that at all .  He gets overwhelmed and can't cope.  It's like torture for him, so I either go alone, or find a friend who enjoys those environments.  

 

My husband joined a small cycling group after his SAH as a part of his recovery, and it has always been his 'thing', his social time, his group of friends.  I fully support this, because I knew that he had to have some independence from relying on me (and I needed to not be relied on always too).  

 

Having said that, I do provide a lot of emotional support and reassurance to my husband - again, the brain injury affects his ability to regulate his emotions, he cries easily, feels things deeply.  He is very optimistic and joyful, but also very easily affected if he sees others in distress/hears distressing stories.  So he limits his exposure to that content/those stories.  

 

His sense of humour, enormous intellect and beautiful character traits are all still the same.  Sometimes I find his neurotic behaviours are a bit more concentrated than before the SAH (we all have neurotic behaviours), I try to tell myself it's 'signs of life' at those times if I feel irritated, which was our joke in hospital when he had to deal with yucky body functions - I'll say no more.

 

Your comment that your husband says you are yelling at him really caught my attention, my husband says the same to me when I am not yelling at all.  I do have a naturally strong voice, but he tells me I'm yelling or raising my voice when I'm not sometimes.  It has puzzled and annoyed me, but your response and Tina's has helped me to understand that better, thank you. 

 

Please don't feel bad or guilty at all that you have reached out for support.  We all have a different comfort level with being vulnerable, and saying things 'how they are'.  But it is really important that we can be real about what life is like for us, it is how we cope and can find a pathway through. 

 

I hope you get the support you need for you.  No person needs to be an island, or cope in isolation.  You are not being disloyal to your husband to seek support to understand his needs and behaviours better so that you can continue to be the amazing support you have been.

 

I hope your holiday is a beautiful time together.  

 

V