Kind of at a loss as to what to do

I’m not quite sure what is going on. My experience of those in this group is that you are all tremendously supportive and caring. Yesterday the husband, in his 80s, of one of our friends passed away. He had been suffering the last ten or so years with a number of disabling illnesses, including I think dementia (I can’t find the word I was looking for, so dementia will have to do). Anyway I blurted out how wonderful he got to end his suffering and his family doesn’t have to have the burden of taking care of him anymore. My wife was quite upset by the comment I guess in relationship to her thinking I don’t want to be here anymore with all that a brain injury type life has to offer. Honestly sometimes I do feel that way. Even though that is true I still do everything I am capable of to make a good go of it. Too many times I find I overdo things much to my and my wife’s detriment. It definitely gets very frustrating for both of us. I didn’t say what I did to upset anyone. I guess it is part of the non-filtered communication that happens with the brain injury. Anyway I’m at a bit of a loss as to how to communicate with my wife in a better way about this kind of thing going forward.

I seem to be a bit of a mess today. The other thing bothering me is my attitude about holidays. I can’t say I was big into them before my brain injury. My Dad was and still is at 92, very anti-holiday celebration and made them suck for us, so I probably adopted a similar attitude that way, even though I want it to be different. But I have noticed since the brain injury it is even worse. When a holiday, anniversary, etc. is coming up my immediate reaction is “oh s*** ” or some other four letter word. Part of it is feeling overwhelmed at having to add one more thing to life that I feel incapable of taking care of.

Who am I kidding I’ve got so many confusing things and thoughts going on I don’t even know where to start. I feel stuck between wanting to get some counseling, but upsetting my wife by doing so because my perception is she thinks we should be able to work it out ourselves. I can’t even believe I am posting this in this public group, not something I would normally ever do, as I tend to be very self-contained.

I better stop now. Thanks for listening or I guess really reading this. Best wishes to all of you.

16 Replies

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  • Sca

    I'm sorry for your troubles. I sense there is a lot going on but let me start by saying that I honestly believe that not a single soul (bi or not) is deliberately inappropriate when a death occurs.

    I can't remember if you've had any help but certainly seek it. It took me a long time to realise I needed help to sort my head out and it was possibly the best thing I did.

    Have you got the leaflets from Headway and shared them with your wife?

    My guess is that you feel like you"don't want to be here anymore " when you have overdone it. Even those of us who are control freaks and manage most of the time feel like c**p when we overdo it.

    Are you expecting too much of yourself? The OT had a job on her hands trying to rein in my expectations and the thing that helped me was the timetable. You can get your wife to help you set one up. You must be ruthless with it and only put in the necessities and leave time for the nice things they are every bit as important.THE MOS IMPORTANT THING IS TO BUILD IN PLENTY OF REST PERIODS.

    Give your wife a big hug tell her you love her and explain that asking for help will make you better able to cope.

    As for the holiday and celebration thing. I get it. I can honestly say that one of the benefits of my brain injury is that I no longer have an aversion to celebrating milestones like birthdays or anniversaries and we try to get at least 2 breaks a year even if its just a couple of days away. It helps to recharge

    Hope there is something here to help

    Lots of love n hugs

    Xoxoxoxoxoxo

  • Thank you. Am I expecting too much of myself? Absolutely, its what I do best. I'll have to communicate more with my wife about the counseling thing for sure. And sticking to the schedule, I do have one, has been a challenge. I guess in that way I am a slow learner, thinking it won't matter this one time, which turns out to be two or three days a week. That just isn't working. thanks for the reminder. I really appreciate your response.

  • You are welcome.

    Forgot to say give yourself permission to be proud of yourself and your achievements whatever they are.

    I know its very un British but practice it .

    Love n hugs

    Xoxo

  • Hi Sca, just lost my post so excuse me if I reply tomorrow now, l will come back. I know where you are coming from here but it'll take a bit more time to re- type it all .

    Love Janet xxx

  • Sca, it can only be a good thing that you've decided to speak out to a 'public group' when the whole purpose of that group is listening to, and supporting, folk like yourself.

    I hope you can persuade your wife that in seeking counselling/therapy you're hoping to learn new & better ways of expressing yourself which can only benefit you both, and others around you.

    It's usually the partner or carer who is campaigning for professional help whilst those of us with the brain injury fight against it, claiming there's no problem, so your attitude is unusual, and very refreshing !

    Well done Sca for binging this out into the open ; and if you feel you need help then you owe it to yourself to go for it. The brain is a fragile organ which, after any type of trauma, needs all the help it can get.

    Oh, and I'm sure there will be compromises to solve your holiday dilemma........................I hope so !

    Take care & best wishes, Cat x

  • Thank you for your compassion.

  • Hi Sca

    It is good you felt able to post. Often difficult thoughts are better out than in - you feel unburdened to some degree, writing them down goves the brain a chance to process them at writing rather than thinking speed, and if there is anyway others can help, then they will do their level best... this is offered in that spirit.

    I am not sure whether your wife was upset by your comment because she disagreed with you, or because she related it back to you. I am sure she understands that you know how precious life is - every BI survivor has a reality to that understanding that others may in fact struggle with. Some people will translate that into a sanctity of life that the quality of said life doesn't always warrant, usually because they have not had the opportunity or the need to think things through. I recently wrote my 'living will' or advance directive. My husband was quite surprised about my requirements for end-of-life care (or care if I become seriously disabled because I haemmorage before the docs get to me to fix me). These are hard things to weigh up, and truth is that because of your experience you are closer to an understanding of mortality than most, which gives you a perspective others may not share. It is a tricky one coming from such an informed perspective but your view is a valid expression based on real experience. As was said by others I am sure your wife knows you weren 't being deliberately hurtful.

    In terms of moving it forward, a discussion about a living will might help - in many ways everyone should have one, same as an ordinary will. It would give you and your wife a chance to put scenarios on the table and talk about how you might wish to respond to them. Age UK has lots of info and suggestions on their website about this sort of thing.

    And it isn't morbid or only for the old: I am 45 and fully expect with treatment to be kicking around in my 90s. But I can't guarantee I won't be knocked down by a bus today any more than anyone else can, and that is before you throw an aneurysm into the mix...

    The holiday and pacing questions have a common thread which I suspect is driven by your desire to do the best you can within your circumstances. In ME circles they talk of an 'energy envelope' which I have always found a helpful image if interpreted quite literally - and my guess is that you have one that is C5 size and it is constantly rammed full of lots of papers representing lots of parts of your life, and then along comes a nice fat, glossy A4 Thomas Cook brochure. Not surprising that your reaction to that is 'oh sh!t' really...

    Getting used to the fact that your envelope is C5 size and no longer an A4 jiffy bag with expandable sides to boot is I am beginning to think a lifelong struggle. So much of life comes on A4 sheets and so try as we might we always find it hard when we are presented with them and have to fold them over, or tear them up and hope we don't miss anything, or can follow on with the second bit later. There is only 1 way to deal with that glossy brochure though - forget it, and ask instead for a small leaflet. Less glossy. Less likely to contain 400 options, maybe only have 6 to choose from. And these will be far simpler in terms of offer too. And when it comes to putting that leaflet in your already full envelope you have to decide what else you will take out and leave on the mantelpiece for a few months... because you can't do it all.

    Counselling with a neuropsych is a really fantastic way to get new angles on living with your injury and managing life so as to get as much into the envelope as possible without the corners getting unstuck. I am sure your wife is absolutely lovely, but she maybe doesn't know all the tricks of fitting life into a C5 envelope... after all she doesn't need to, hers is A4. Just as you have had to come to terms with it, she too has to recognise that post-BI she can't be the answer to everything for you. Pre-BI she probably never even assumed that: it is a 'carer' misconception that arrives at the beginning and sometimes doesn't shift. It is inherently protective and well meant, but can end up feeling a bit like a thick rubber band round the envelope. And you don't need one... you need to work out how not to ram the envelope so full that stuff doesn't fall out.

    A neuropsych will take the rubber band off and help you with setting up a filing system to keep your papers in order. It can feel a bit odd having this other person in your life to start with if you aren't used to it: but at the end of the day there are all sorts of health related things you wouldn't dream of dealing with by yourself, including taking a tooth out, dealing with a flesh injury such as a burn, or coping with a breakdown, and this is somewhere on that spectrum, and it is partly preventative too. If you have had no help to date you will both find it extremely enlightening. My neuropsych is my 'go to' person with any new health issue...she has been with me throughout the last 4 years of my illness, sometimes on a regular basis, sometimes only infrequently - and she is the only medical professional who has a comprehensive understanding of how my various conditions and issues inter-relate. A very useful person to have in my team. I hope you find your new team-mate soon.

    Wishing you good luck as you move forward. Go well x

  • I continue to be amazed at the level of help and caring of the people in this group. It is very reassuring for me.

    Thank you for all of your ideas. They are very helpful. I think my wife related the comment back to me. I know she is really struggling like I am with my new limitations. She has been very supportive of the new me and I think there are times we all reach a point where it all gets to be too much.

    Sorry, I'm not familiar with the ME acronym. What does ME stand for? I'd like to find more information about that. The envelope concept is interesting and definitely seems to describe one of the challenges I am having.

    Thanks again for your concern and help.

  • It is myalgic encephalomyelitis - basically thought by some to be a low level inflammatory condition of the brain, often associated with a viral onset. Unfortunately, aka 'yuppie flu' in the press (rather unkindly) or chronic fatigue syndrome or CFS by the medical profession in the UK - a rather limited description when fatigue is only part of the problem. Research efforts were dominated in the 80s and 90s by psychologists alleged to have deals with medical insurance companies and so without sufficient research into the biological basis for the condition it remains little understood (think MS in the 1960s pre MRI) whilst very debilitating (you are considered to be merely a moderate sufferer if you have lost less than 50% of your previous function...)

    I also have a 'functional neurological disorder' which affects my gait, which varies from being relatively ok to look at but 98-year-old kind of slow, to incredibly spastic and robotic. The two conditions both result in impaired brain function, as my brain tries to come up with alternative pathways for tasks it seems to have trouble with executing automatically these days, such as walking and thinking, and I have been measured when in a good spell as operating at between 50-75% of my pre-illness capacity in terms of brain function (never mind the arms and legs....😄). Both conditions usually result in a GP sending you off to psychotherapy, so I have had 5 years contact with my neuropsych, who assures me, and others who need to be talked to by a medical professional in order to believe it, that I am perfectly sane, just neurologically impaired in a way the medics don't yet understand or have the correct tests to identify. My experience on this forum reassures me of that too: that I have so much in common with people who have suffered some kind of detectable neurological assault is oddly reassuring to one whose condition is still thought to be a figment of the imagination in 50% of the UK's GPs eyes....

  • Hi Sca,

    I'm back and rested.

    I was saying that I know how you feel. Each day can be such a trial to wade through it can be a constant reminder too of how your life used to be.

    I have never had counselling and probably should have, it's very difficult to deal with life changing events like ours. One day your fine and going about life as normal, and then Bang, in my case any way floored by a virus, I eventually come round in hospital no idea why I'm there unable to.move, feed myself walk or even think logically. 2 months later disgorged back into the real world and told to get on with basically.

    So, I think we can all be excused for sometimes having a fatalistic look on life.

    But, in my case I think my husband needs the counselling more than me, he can bury his head in the sand a bit too much, and doesn't like to talk about it.

    He's recently lost his best friend and also his mother in a two month period, so denying that he's struggling to cope too.

    It puts such a strain on me, trying to hold things togethrr.

    I have a journal that I write in when it all gets too much for my brain to cope, it has"letters to my husband"" he may or may not red it one day, but I use it as my counsellor, I tell it just how I am feeling, warts and all, all my frustrations and how I'd like him to help. He knows it's there but I don't think he reads it, too uncomfortable.

    I know he had a bad time when he thought he was losing me, but life goes on and it's different now.

    It will all be fine I know, as it will be for you and your family, it's just hard to make them understand how the new you works now isn't it?

    Take care and come back if you wish, you can private message me if you want that's fine.

    Look at that counselling, but not just for you, I'm a great believer in it being necessary for close family too .

    Love Janet xxxxx

  • Thank you for the support Janet. Best wishes to you.

  • You sound much like myself in every respect. That's no bad thing, he says modestly... ;-).

    Sorry, I have no serious advice to offer - but the fact you are recognising issues and seeking solutions is a good thing. No one who has a BI, including a relationship, wouldn't benefit from Counselling/CBT etc at an appropriate time.

    B

  • Hi Sca :) so sorry to hear all that. Like everyone else - I totally understand as I've been there myself very recently, and although I seem to be getting a handle on it - it's still hard for family to really 'get it'. I've said a few inappropriate things and am worried about returning to work in case I start staying facts lol - but has anyone ever been sacked for telling the truth? Maybe I'll be the first lol.

    What I really wanted to say to you is this......you would be very surprised at the number of non brain injured people I've met since my accident who have said very inappropriate and sometimes hurtful things to me. They have no excuse whatsoever and you'd be shocked if I told you what's been said to me by people who are supposed to be friends. I'll never forget at my mothers funeral, a very good friend came up and hugged me and said 'aw - you're a little orphan now' - not intended to cause any offence - just stating a fact . But the best part is ........now that some time has passed we laugh about this and it's part of the story of that day which always makes me smile. We're still good friends :) . I hope that your wife and family do the same - it's just part of living and it's time to move on. As for your mention of holidays - well I'm not even going to go there :) suffice to say that you're not alone :) Good luck with everythg and do seek some hepl. X and O

  • Hi,

    Bit tired to write much but just wanted to say that I don't think what you said about your friend was totally inappropriate...people don't often talk about death openly...practical matters and emotional ones too. ...I'm sure it was said with compassion...and mayve just been receiving in a different tone (not your fault).

    Hope you find some ways of making life more comfortable....Maybe the guy that left me at time of my illness knew we wouldn't cope with the complexity of brain injury....so I am on my own. Hope you and your family find ways forward...and do remember that couples,families and friends don't always see eye to eye on everything all the time anyway. X

  • I always think if you talk to someone else (no matter who it is! even the postman!) and you glean a tiny bit of useful advice or information its definately worth doing-so just go for the counselling and if you dont feel you get anything from it ,dont go again.

    You seem like a very straight forward honest person, which may be the problem, sometimes the honesty is a virtue but sometimes a pain! but nobody is perfect so dont beat yourself up over it! x

  • You have spoken out to the right people. That's a great start. I agree with all of the above comments. You take care and stop fretting, just do what you know you want to do. Best wishes. XX

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