2.5 years on

[Dramblys]

It's been about two years since I've been on the forum here., and 2-1/2 years since my wife had her SAH.  If you read my previous posts, you'll see that she was generally very fortunate for her outcome.   The visual disturbances I mentioned before are largely gone.  The chronic headaches are still there but not as bad and being managed with medication.

 

The doctors say she's essentially "healed".  She's hardly missed a beat with her work as a songwriter and musician and gets into her home studio most days.  But, she says she still feels changed.  Yesterday, she said she was glad I understood this when others don't (most see her as "back to herself").  I wish I could always be sufficiently present and thoughtful, though.

 

Lately I've been dealing with my own physical, mental, and emotional health concerns, and I've found that my expressions of my own pain, frustration, sadness, anxiety, etc. affect her more deeply than ever.  On some occasions, when I brought up a concern late in the day, what might previously have been a brief conversation (hopefully ending in validation) has exploded into an argument and ruined her evening, her sleep, and her mood the next day, sometimes even causing her physical pain or memory lapses. 

 

I have been seeing a clinical psychologist for several months now for my own issues, and a lot of that work has been to become more open and effective in expression of my own "things", but it's hard to put that into practice when my wife (of 22 years) can't handle those expressions as well as she used to.  To be fair though, she often pleasantly surprises me with her perception, compassion, and care at times when I'm feeling sure she's deeply disappointed in me and our relationship.

 

Today, she asked me again to avoid any serious discussions at dinnertime or later.  She's asked before, and I would love to honor this request, but I don't always know what will seem serious to her and what will not.

 

Fortunately (or not), due to the coronavirus pandemic, I'm working from home and if I'm careful, I can try to get these things out of the way earlier than when I had to wait until after my commute home, when there was only a short window before dinner.

 

Since it's been a while since my last visit, the first thing I saw when I arrived was the thread about Win's passing.  I was glad to revisit Win's first advice to me, and I really need to take it to heart:  "Do not let wife hear sad stories of doom and gloom.  I cannot take sadness anymore !!"

[V.Mama]

Hello Dramblys

 

Like you, I haven't been on BTG for a long time, and also saw Sarah's post about Win's passing.  I am so very sad for her, and her family.  Win was such a beacon of hope to so many, with her funny, gracious posts and her generous heart.  She was one of the first to respond to my first post, and I will always be grateful to have known her through BTG.

 

My husband had a non aneurysm SAH just over 12 months ago.  Like your wife, he has made an amazing recovery.  However, he has also endured the typical chronic headaches, and even though they have improved, they are ever present and get him down at times.  He now runs over 15km a week, and cycles over 100km a week.  Exercise has given him meaning and direction each day.  

 

We still don't know if he will be able to handle the demands of returning to his job as a coal train driver, we will find out soon.  I have gone from working 2 days a week to now working full time to alleviate any pressure on him to feel he has to work.  He now focuses on providing more support to our two teenaged sons so I can work.

 

Brain injury is an invisible disability.  Our loved ones endure a silent and hidden experience, and the changes to their brain function and behaviour can be finely calibrated, hard to detect in a shorter social conversation, but more obvious over a longer period of time, such as living together.  As partners, we do tend to be the people that continue to understand the experience of the survivor, as other people move on and forget.  It's great that you're seeking support on BTG with people who understand what you and your wife are experiencing.  

 

I'm not sure what to say that will be helpful to you.  I am in agreement with your wife though, I really don't like to have difficult conversations after dinner, as they also tend to unravel me, impact my sleep, and carry over to the next day if we can't resolve them.  Us ladies can be a bit complex!!  And yes, what you thought was a simple conversation can be more complicated than you expected, I agree.   

 

I wonder if writing down a summary of the conversation you want to have, and leaving it in an in-house 'mail box' that she can check when she feels ready to cope with the content would be helpful?  That way, she can control when she wants to deal with it, and choose a time she feels able to follow through the process.

 

Of course,  any in-house mail would have to be balanced with love notes or other positive stories, such as memories of pleasant experiences you have had together, holidays you went on etc. Otherwise, it would just become 'difficult' mail and she won't want to read it, who would?.  It's just an idea, see what you think.  I do wonder if giving her control about when to have discussions will reduce a 'reactive' response and give her time to prepare?

 

I agree with the advice Win gave you previously, our loved ones who have survived SAH feel things so deeply; they have met death and survived, life is so fragile, and they know their own impermanence.  In that regard, my husband gave up caring about or responding to things that previously would have bothered or irritated him.  

 

He just became very zen, and wanted to focus on being in the moment, and letting go of judgement, grudges, differences of opinion.  He doesn't tolerate people who are self involved and neurotic at all, he never really did, but now he just doesn't want to have anything to do with them.  He's quite blunt about it, I understand as it is self protective. 

 

I guess in regards to Win's advice, finding friends or family, or a paid professional, who can provide some of the listening and emotional support you are seeking is really helpful.  It is natural, normal, and necessary for us to need to be able to express our own pain or doubt, or to be really heard by others.  Our loved ones who have survived SAH just can't handle things the way they used to.  

 

There will be times, like you have noticed, that their perceptiveness and insight will touch you.  But I think they have more to deal with than us, they are living inside their bodies with their brain injury that still lingers and reminds them daily of nearly dying.  So we need to alleviate them of some of our expectations and needs.  Unfortunately, it does change the relationship dynamic, but no one is unchanged after what they and we have been through.  Change is inevitable.  There is grief, sadness, sorrow in what has been lost for both of us, and life goes on.   

 

Finding ways we can connect, that bring joy, tenderness, and celebration of being alive together, is maybe what we should focus on?  And deciding to change our expectations of the relationship, being kind to ourself, and kind to our partner?  What do you think?

 

Veronica

 

 

 

  

 

 

 

 

[Macca]

Hi Veronica,

 

Thank you for posting this answer. It is pure class, and is a fantastic response to a difficult problem. You show a lot of experience and understanding.

 

It is also interesting Dramblys, for us to remember that carers too, have their own issues to deal with, and that SAH sufferers are not the sole keepers of pain and problems.  The world isn't perfect and it is often a cruel and unforgiving place.  Life can be a struggle for many of us, and it can be a difficult job to prevail.

 

I think what matters is that we are all able  to offer care and compassion, and that life is often a question of teamwork, where we need the help of each other to pull through difficult times.  That's what makes us human.

 

There is nothing wrong with emotion, we just have to try and channel that energy in the right way, in a constructive way, where we are allowed to cry, where we are allowed to let off steam, but to rally round and overcome the issues at hand.

[Dramblys]

Thank you Veronica and Macca.

 

I like Veronica's idea of writing.  In fact, before I was working from home due to COVID-19, we both did this a lot.  I wake up much earlier than my wife, and would often leave notes for her to read after I was at work. Sometimes she'd write to me after I was in bed.  And yes, a balance of love notes and serious communication is important.

[Louise]

I think I was still healing 2.5yrs and at the 3yr mark inprovements were still happening if not that noteasable 

Things often seem more in Black and white now to me, (maybe not a good choice of words for these days we seem to find ourselves in)

 

Take care, stay-safe.. 

[Doonhamer]

Veronica's post is so true - relating to my own condition. It's quite amazing.

Thank you!!