And I hope no one minds me posting this..I feel I need to let it out and hopefully you guys understand why..day began ok.. breakfast then presies open then hubby retired to bed for usual nap.
Except that's it. He didn't want to get up for lunch. Nor subsequently every 2 hours on asking him and providing fluids...nope. don't want to. I'm tired.
This does happen every so often and given that he doesn't retain what day it is two minutes after opening presies... There's no malice but I literally spent the day alone. I did get him up at five but only as he needed the loo and persuaded him to call his mum.
But he went back to bed at six.
I'm sure many folk were alone.im sure many people's lives have changed due to brain injury.
I'm still struggling with acceptance of how my life has changed too
I think I'm there then a real day of let's just remind you pops along.
We can't pick and choose the good/bad days but sometimes I want to scream at what this has done to us both.
Rant over..sorry...not meant to offend or upset... Just no one else will understand !!!!!!
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Carer16
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My wife was much the same, 'I'll get up in 10 minutes', take her up a cup of coffee 10 minutes later and she's asleep. Most of the day rolled by with the same answer. She did get up for Christmas dinner but fell asleep on the sofa. The enthusiasm was there but the fatigue was just too much. For me personally, yes I felt alone but last Christmas she was still in Critical Care in an induced coma so I was just glad to have her here. Life has changed for us both, goals and dreams tossed in the bin and replaced by what would could have been. We were lucky she survived and has recovered so well, I knew the past year would be about survival first and recovery second. Hopefully the new decade will bring brighter days and rebuilt dreams.
I too am lucky my husband survived but more and more each day it's like he's slipping away .
He has been post injury 4and a half years and he's happy with life because he has no memory of before so he's contended and knows he's cared for.
I'm just harsh I suppose.
I don't "expect" things. There's always good and bad days ... There was no malice in his day ...just prefers to stay in bed and he was tired....I'm not denying it.
I just am looking at it from a different angle I guess.... Maybe wrongly.
I feel robbed of what we had.
We are never going to be the couple we were. But we make the most of now... At least I try to .....but it still hurts. I guess that's what I need to get past.
Counselling again maybe....I don't know. But the days that meant so much just don't count now...and it does hurt. Sorry if the post sounds self pity.....it's just trying to reason it all out....
It's not self pity, it's the loss of what you once had. A TBI has an immediate impact, not just on those that survive but on the immediate family. As carers we are thrust into a area that we are not trained or prepared for, our life changes in an instant. Our cherished times, Christmas, birthdays, anniversaries, holidays are no longer special days, they just become another day. I, like you, wish those days would return and I too often feel alone and resentful for what has been lost
After all you are only human with the human emotion of bereavement of your previous relationship and normal life but of frustration too.. please don’t be harsh on yourself but I suppose in 2020 make extra time for yourself within your careers role as you count aswell ... you still have your life to live and that matters too. None of these feelings mean your love is less.
Thankyou. I think it's about moving on ...it feels like I'm single and I'm not.i wanted to spend my whole life with this man and it's just cruel. To both in different ways
Think I'm having a wobble day. Normally strong but think I just feel lonely this time of year. I hope everyday it's going to be a good one but many aren't. The only blessing is he doesn't remember. He doesn't recall anything about ten mins after its happened. Xx
So sad this happens to people and changes relationships.. sending positive healing thoughts for 2020... maybe look for interest/clubs to join so you feel you’ve got a life outside your caring role you have to be looked after aswell but it’s all very normal that you should matter too and you can be assured your hubby would want happiness for you ...
I have carers help out do I go swimming and I've just started walking netball ....things I love.its all very up in the air...lots of things to contend with.we had trouble with some carers but seem to have decent team now...but your house never feels like hour own home. Really.... Talk about want it all eh....
My heart goes out to those like yourself. Many survivors with chronic fatigue and memory issues exist in their own world and, though it's obviously not a life they would've chosen, it's nowhere near as stressful and demanding as that of a caring partner.
I've been lucky enough to manage my own care and, living mostly alone, I can have as many sneaky lie-ins as I need. But getting through Christmas, despite my family's understanding and patience, is exhausting. So I put everything into Christmas day and then use Boxing day for complete rest, in bed with my laptop and occasional trips for food etc.
Being a carer doesn't automatically turn people into angelic robots. You still have feelings, needs and limitations. Rant as much as needed m'dear if it helps. I've nothing but admiration for your selflessness, and you deserve SO much more.
Take care and treat yourself when possible.... Cat x
No, and that's a crying shame. You're basically in a continual state of bereavement for your husband. It's a harsh reality that the only route to survival is cherishing contacts elsewhere with the companionship and affection that can bring. An additional life is often the only means of preserving personal wellbeing.
My dear next door neighbours have been 'struck down' by rapid onset dementia and it's harrowing to watch. He has diminished from an active, kind & intelligent man to an obsessive and paranoid wreck, getting dressed in the nighttime and announcing he's going back to live with his parents (he's in his eighties).
His wife is dealing with this complex & exhausting issue alone...….and grieving for a husband who doesn't recognise her. Their son stays with him two afternoons a week so she can spend time with friends ; she tells me it's what keeps her sane.
It sounds like you're doing all you can to keep yourself fit and sane m'love. And I hope you can gradually manage to take some steps back (albeit painful) so the grieving won't be quite so raw. You're all (carers) heroes in my view.....
I know what you mean about wanting to scream. In my case I am the brain injured person. I still can't believe it all nearly four years on. I send you my very best wishes. I know in my head that life isn't fair, but that doesn't alter how hard it is, does it?
Hi my heart goes out to you!The loss and grief you must be feeling... Its so tragic and feels utterly unkind that many people have to find ways to come to terms with such a change in life enforced on them.. Like yourself. I can't really add anything that hasn't been said... I just wanted to send you love and say that I feel for you and hope things improve for you both and you find ways to cope. Be kind to yourself for having these thoughts too... You wouldn't be human if you weren't. Wishing you comfort and love xx
Oh and having carers in my home I personally would find a, nightmare no matter how good or helpful they were (or how needed)!! When my son first had his brain injury and was told if he needed it he would be supported at home I remember feeling total horror at the prospect of intrudion into our home! I'm so so grateful it hasn't come to that... So i can totally understand how challenging that must be. Our desire for our own space is an essential need I hope you can find new ways to claim some much needed sanctuary. X
You aren't feeling sorry for yourself, you are justifiably disappointed about what life has handed out to you because it can be so bl***y unfair. I was a carer for a long time. It was exhausting and thankless - especially from the one I was looking after. The person they were had gone and what was left became someone I did not recognize and could no longer share things with, including sensible conversation.
Carers can find birthdays and Christmas very lonely, especially when tied to the house as well. Both occasions amplify emotions. To be frank, I got more companionship from our little dog and walks with her (even for half an hour) were small sparks of light in seemingly endless dismal days.
Do use this forum to vent. Also, if you haven't already, think about joining Carers UK at carersuk.org/ I found them invaluable.
This might sound daft given the lack of social services funding, but you are entitled to a carer's assessment so that social services are at least made aware of your situation. In the light of that, also, think about respite care to give you a break at least once a year, just for a few days.
Make sure your GP knows that you are a carer. You need monitoring in your own right - don't let your doctor off the hook about this!
Meanwhile, you have support here and you are of course stronger than you realize.
It sounds like your hubby is doing what he needs to, but you feeling alone is wrong, you need support or the screams become real. You must push for a carer's assessment, this should highlight available support. Also Headway can help or signpost you, also the stroke association.
Remember you are not alone in dealing with the fallout, reach out to the GP, social services, Headway, and the stroke association.
I am the one who had the SAH, so was determined to make it as normal as possible Christmas day. Pressies opened chocs at the ready and TV on to Queen the group . After seeing them in live aid and then in Concert at Wembley and somewhere I cannot remember. I gave up and had a sleep 10 mins my Daughter walked in and said "how longs Dad going to watch Queen Mum?" We both laughed and tutted I went back to bed and she took dog out I awoke feeling refreshed and Queen was playing...Arghhhh lol xxxx Be well All xxx
Your definitely not alone. I have spent the week without a support worker, my choice for Christmas. My partner has his best time in the morning and naps in the afternoon. Considering his fatigue, he's done well but unless we had visitors, I have found myself sat with the tv as company.
Our life before his tbi was very energetic, so life has dramatically changed and there are days that I relax and enjoy the quiet time, when he naps and days where I wish it hadn't happened and we were back as before.
I now, after over 2 and half years, have a day doing what I want, while he does something like fishing, with support, once a month.
Make the most of good days and try to fill the bad days. The people on this sight are amazing and it's good to have that support when it's needed 😘
Late reply, but heartfelt nonetheless. the carers do get forgotten about, and it's true that it's your life that's ruined too. I really felt for you when you talked about your hopes and dreams which have gone. It's horrible. You just have to look for the little wins, like the other day my husband said he loved me, for the first time since his injury nearly a year ago. And as someone else said, definitely a dog, ours is such a source of comfort to me, gets me out, fresh air, exercise, talking to other dog walkers. Don't know what I would do without him. Please take care, try and stay positive, and remember it's never over until the fat lady sings! xx
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