Feeling like a prisoner

[sue-66]

I have a question for those who had or have, a wife or husband. My partner Alan, has came home to a home that he has never lived in before the motorbike accident and so feels like he is being held against his will, he says he feels like a prisoner. We have lived here for 6 months now and the past month he's been feeling like that more and getting frustrated about not being able to just do what he did naturally before, eg...get up and walk without help. We were very active walkers before. The other day he felt it was me keeping him prisoner, which I found upsetting at the time. I guess I'm asking about other people's experiences, from both sides, so that we can learn and understand. Is short term memory is not good and the last 15 years, are mixed or iffy when tired, unless he has visual pics.

[cat3]

Sue, you've watched Alan's progress over the past year bringing him from unresponsive to where he is now and it's an amazing transformation. But the need to restore normality is a natural human reaction, and after a life changing brain injury with all the chaos resulting from shock, hospitalisation, nursing staff & changes in routine, there comes that point where the brain is once again able to process what's happening around us and to recognise that things aren't as they used to be...……..and neither are we.

I guess that Alan has reached that point where he's able to reflect and experience disappointment (something we're incapable of in the early stages) and is hitting out at the one closest to him ; sadly this is usually the spouse/partner...……..all too commonly reported by those trying their best to provide care and comfort.

You're obviously doing all you can to engage him in outings and with family whilst bearing in mind his various issues and needs, but he has to understand there's only so much you can do because the effort has to come from him equally. Ultimately he's responsible for his continuing rehabilitation because the will to accept his limitations and other changes/issues has to come from within.

But there's a process, akin to grieving, which Alan might be in the throes of right now, so it could be that he's had insufficient time to fully process his situation. It seems carers need fairness but firmness in helping loved ones through what is a strange and testing period for both.

I can remember (having been previously very fit & used to trekking across the Derbyshire hills) mourning the fact that I suddenly struggled to walk out for a loaf or a paper. I used to sneak out in an attempt at independence and to prove to myself that willpower was the key but, also, after being constantly in the company of others, being alone felt really empowering.

I hope it's just a matter of more time (the brain's main healer) and that with firm encouragement for Pat to keep alternating between testing his physical and cognitive limits and resting thoroughly (perhaps to his favourite music through headphones) you'll start to see signs of acceptance and optimism.

All best wishes to you both, Love Cat x

Mmm...seem to have ended up with an essay...………… 🙄

[sue-66 in reply to cat3]

Thanks Cat, you have words of wisdom, as always and I appreciate your reply . I can't wait for him to get his powered wheelchair and get into the country, it may not be a mountain but it will hopefully help him feel less like a prisoner. x

[cat3 in reply to sue-66]

I hope the wheelchair becomes available soon ; I remember that feeling of relief seeing the outside world again after a long period of confinement. And it's more than just a break in monotony ; I remember seeing everyday mundane things (birds, trees, clouds etc.) through 'new eyes' and appreciating everything more...…..even the rain on my face. And it's well documented the Negative Ions produced by rain are beneficial for our wellbeing, especially in combatting stress & depression !

Onwards and upwards (or should I say OUTwards). Best wishes m'love, Cat x

motivationalliance.org/play...

[sue-66 in reply to cat3]

The rain never kept us in, we would still go hiking and although wet, we were happy x

[sue-66 in reply to cat3]

I love your essays Cat, they are full of information x

[SillyPhil]

It is true that after our accidents we are absolute NIGHTMARES to live with. Please read as many Headway booklets as you can. And keep reading them. So should hubby, if he is able. Many relationships fail. It is not you that hubby is angry with. He's frustrated, confused, damaged and angry with everything. I know. I've been there. I lost my Wife, family, friends, job, dogs.. BUT I didn't have access to all of the booklets, Internet etc that you guys have. My accident was 20 years ago. I am now as 'recovered' as I'm going to (people reckon that most of your recovery happens soon after the accident and keeps happening for 3 - 4 years. After that it is more a case of you adapting to the new you. This fits in with my experience and is what I've read in Headway info and online and heard from fellow Survivors). I still get frustrated and miss 'Pre-accident Phil' tho. Sue, you MUST look after YOURSELF. Take time off to stop... amd RELAX. Deep breaths. Smell the roses. Get help in if you can. Don't take what hubby says to heart. In the early stages we Survivors can be selfish, thoughtless, needy... I wish you all the best x

[sue-66 in reply to SillyPhil]

Thank you sillyphil. I read a lot of headway books and come onto this site, the books are great, but its also helpful to get lots of other people's experiences too. I did help Alan to join this group, but not sure if he's ready to message yet and we are in a headway group too, although that's new for him. Alan has read the fatigue booklet but hadn't thought to give him some of the others, so will do

[Alb64]

Hi Sue.My husband suffered a cardiac arrest 18months ago and has an hypoxic brain injury now.After spending 4 months in hospital Inc 3 weeks in a coma I brought him home to a place he has lived in for over 25years.He didn't recognise our home at all.We have been married for 20 years.He doesn't remember anything of our life together.Before this happened he was very fit.He built motorbikes and furniture.Cycled long distances and never sat still.Now he can't cycle(cannot balance and has no road sense).He cannot go out alone and gets quite frustrated at times.However we have a wall of photos of family and friends.He still loves his music and even though doesn't always remember family names he can remember bands from years ago.He still has his sense of humour and is slowly adjusting to his new life.Everyone is different and all I can say is try to make time for yourself.Sending you hugs.x

[sue-66 in reply to Alb64]

Wow that is so similar to Alan. Your 20 years make my 5 seem very small. I love him still and he still has a good sense of humour and for that, I am so grateful. X

[Alb64 in reply to sue-66]

Hi Sue.A sense of humour is great.Rob makes me laugh every day with his humour.He dances about and has a fancy for silly hats.We used to do a lot of walking too.He has a wheelchair but we only use it if he's fatigued.He's back to see the consultant tomorrow for 6monthly check so we'll see how he's progressed then.x

[sue-66 in reply to Alb64]

Please let me know how you get on

[Alb64 in reply to sue-66]

Hi Sue.Took Rob to see consultant as its6 months since last visit.Saw different Dr this time.She was very nice and let him chatter away.I got bit tearful when she asked if I get time to myself.My family say if I want to go out then they will watch him .I'm very good at giving other people advice but pretty poor at doing it myself.Dr didn't try the memory test this time which I am pleased about as he got quite upset last time when he couldn't understand.Going to get outreach team to visit us again.Next visit 12 months.Called to see staff in rehab before we came home.Very pleased to see him and he loves it cos he gets kisses off the nurses.Need to sit down and have a cuppa now.x

[sue-66 in reply to Alb64]

I'm so the same regarding giving advice lol. I struggle to make time as I feel if I'm not there to help or encourage him he won't achieve things. I also feel I'll be neglecting him if I'm not there. Its a hard one, but at 17 months after his accident, I'm really trying as my family (grown up kids and young grandchildren) are being neglected, its so hard to get a balance. X

[CH56Twin]

Hello Sue very true and wise words spoken as above - and of course Cat is as always right on it. I am 2 years on after a brain infection and still struggle daily with unnecessary misunderstandings between hubby and myself. The overall message I have read in all of the replies is that you need to make time for you. Please remember that it is not only your husband whose life has been taken from under his feet but that your life has also been shaken up. The man you love has taken an unwitting side step from where you both were and you have fallen in the wake of his confusion and pain (emotions). Yes you are strong, but you are also human. If there was ever a time in your life where you needed to put yourself first this is it. Ok I agree there is a balance to be struck because hubby still needs you but the important point is that in order to continue supporting, nurturing and loving hubby you need to have that strength to carry on. Please find the time somewhere in your life to attend to your own needs. It doesn't really matter how you do it or indeed how long you spend doing it, just find time to give yourself a well needed and earned moment of respite. For me it is very like an extended grieving period, which I believe that both you and hubby are experiencing in your own very personal ways. I wish you and hubby all the very best. Please take care Clare x

[sue-66 in reply to CH56Twin]

Thank you Claire for your reply, I am trying to gain a bit of time for myself, but at the moment, its work only, but I will try. I am hoping our week away from therapies etc, to Scotland, will give us both some time to relax and just enjoy the sea air. We do have a live in carer, which is also stressful, but needed (no real privacy) but I find it hard to let go and have some me time, but I'm working on it x

[Froggiefrog]

Hi, I know this is from something you raised a long time ago, but it could be still relevant. Your partner's frustrations and your concerns about them certainly ring true here.

As the person who has the condition ( hydrocephalus since birth ), I find it very frustrating that my recent VP shunt surgery has robbed my partner of virtually any meaningful time to call her own, once she has finished working eleven hours a day.

I hope that once I am fully recovered, I will be able to be less of a burden practically, mentally and emotionally and reduce the feelings of guilt I have about my slow recovery fatigue, concentration and memory-wise,

In my case, I feel as if I am the one imprisoning my partner, because she is used to me doing things for leisure that take me away from home for a large part of the weekend, giving her time and space that I know she needs to get respite from high maintenance

( even when well!) me.

Whilst the origins may be different, I too have a poor memory. I have coping strategies when well, but at the moment I worry that my fatigue and memory issues causes me to get anxious...which makes me tired and forgetful...

I hope that this response doesn't seem odd, being so long after you aired it and on a final note, personally, I find if my partner has arranged something to do that she enjoys and has nothing whatsoever to do with illness, hospitals or even me, far from resenting it, I celebrate it. It makes the person I love happy, why wouldn't I?

[sue-66 in reply to Froggiefrog]

Hello Froggie, since I posted this comment, I have gained a little extra me time. I will say, that in no time have I resented Alan for the lack of space 🙂 but I now feel comfortable leaving him with support, knowing they are encouraging him to do his exercises or anything else that he needs, to gain his independence (trust with any help has been difficult). I found the guilt of doing anything without him hard at first, but he is happy for me to do other things without him, but we enjoy time out, when able, to also do things together. I have not asked him how he feels, when I go off, but I will.

I love your positivity and outlook and I was interested in what worked for you, regarding the short term memory. Alan has a diary and we take photos or videos when out, to help his memory. Fatigue is awful, although if we do something, as long as it's in the early time of day and he naps in the afternoon, its manageable. He has kept his sense of humour and we laugh together lots, so anything else, we cope with as it comes along.

[Froggiefrog in reply to sue-66]

At the moment, my memory is even poorer than before my latest surgery, but I am not worried yet, as I am sure post op fatigue, a new kind of shunt, infections etc are making things seem worse than they will be, once things settle down.

I know what you mean about guilt from your side of things. I was actually thrilled when one of my partner's friends came over from America two weeks ago. The person I care about the most in the world got to do, what on the face of it, was just catching up stuff, but it was her time, her friend and her reality, It pleased me greatly to see this happen, I can assure you.

Returning to the issue of memory. If my memory does not recover to the less than average it was before. I will tackle it. Notes in my shoes work as an aid before bed time about the stuff for the next day. Comical? Yes. Effective? Yes, so the latter outweighs the former comfortably.

Early in the day works for me and did for a long while before everything got out of hand and I needed the surgery. Fatigue, impaired ability to process and retain information and being 53, not 18. The first two I will find a way to overcome but with no timescale, the third, I will just be like most men of my age and behave in a way totally at odds, age- wise, to the reality.

The ability to laugh together is a wonderful thing. From my perspective, I couldn't care less if the humour is at my expense either. It usually was ( and deservedly so ), before my shunt decided to play up and we are still the same people, so why should that change? It shouldn't and hasn't.

It seems as if things are moving in the right direction for you both. The positivity in that is something I can take inspiration from and will. Thank you for your response, especially as time has passed since your original post. Your input is much appreciated.