It's a warm evening, all our friends are at a BBQ, no we weren't invited. Hubby needs to be in bed by nine, else it all goes pear shaped the next day,so I am sat here on my lonesome getting pxxxxx on a bottle of wine. We used to have a great social life,now because hubby has a TBI we are both excluded. He goes off to bed quite happy but I sit and cry for the life we used to have.
I know I am so lucky still to have him, but it's so hard sometimes. Am i being completely selfish or do other carers feel the same.
We have some good friends, but they can't possibly understand how I feel. It's a huge change of life for me as well, just because I seem cheerful on the outside, try looking a bit deeper.
Sorry for the moaning, but gotta let off steam sometimes!
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dillyd
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No, your're not being selfish. I feel so guilty because we dont go out like we used to, my husband is out tonight with his friends and I'm at home alone, wishing I could go but I can't cope with the noise and busy pubs, plus I like to be in bed by ten to give me the best chance of a good day next day. He doesn't go out late often.
We go out early evening if we're going out, cinema usually and it only happens once a month or so, I miss the social interaction too, it's not just the carers.
As I've said before, I envy the fact that my husband leaves the house for work every day and I'm left here, my life is reduced to filling and emptying the dishwasher, doing the clothes washing, some ironing, a little cleaning and some cooking. All the things I hated doing, but I intersperse those things with hobbies, what makes life interesting for anyone ??
I could get so maudlin but don't worry about feeling selfish, it's allowed, you may just have to get a bit creative to improve things.
Most of the time we cope really well,but having led really active lives before, sometimes it comes hard.
We had both just retired and had huge plans for what we were going to do, then bam, a driver hit us head on and my husband suffered a severe diffuse axomal brain injury.. That was nearly a year ago, so our first summer when everything is different.
Know what u mean about housework, nothing more boring x
I know exactly where you are coming from, my wife (TBI early 2011) generally turns in about 9:30pm. I'm a bit of a night person and would happily stay up until 1:30am if not for the fact that she wakes earlier and I have to be up to help her get ready and breakfast etc.
No, you are not being selfish. You need some "me" time, that's all. The hardest bit is learning not to feel guilty about it.
It took almost 3 years to adjust our lifestyle, biggest step was letting go of what might have been. I had to retire early taking a hit on my pension and become a full time carer earlier this year.
Through this forum, local carers group and local headway group we now have a few more friends who understand as well.
I quite often crash out about 8pm I do still sleep long hrs, 12 or so. Luckily my wife is a early bird so tends not to be up late, sometimes she stays up watching tv, murders or cooking or both! I occasionally still get my pulse checked....
I Hope things improve for you all , Helping or being a Carer is very demanding and takes its toll on peoples lives ,our life changed over night after the RTA and took my relationship away my future happy times . I miss them all each and every day they have recovered but never will they back how they were ( Why them/us i ask my self every day ), Only because their Mam has been fighting the system for over a year do they have any help as they will never be the Two lovely people they once were , I think we all get these blues feelings from time to time , mine is the fact i am not there for them today and i regret it . love you all xxx.
Hello Dillyd. Your situation sounds similar to ours. My husband had a SAH and stroke October 2012. We had just downsized our house ready to go on more and more holidays abroad, bought a new car etc etc. I was working part time in a lovely little job. Then, as you say, Wham your life changes for ever.
Don't ever feel guilty, although I know you will. No one asks for their lives to be bulldozed in the space of a few hours. It will never be the same, but with hard work and determination it can be good again.
Steve has made such amazing progress in the time since he left hospital in February 2013, and is even now managing to play golf (his passion) with the help of The Disabled Golf Assocation. We have just come back from a wonderful weekend in Scotland visiting my son on his 40th birthday, and now we are planning our first holiday abroad in the near future, all being well. So things will get better, as I said never the same as before but take tim to adjust and enjoy each day. The lonely times still hit you now and again, and the sadness at the old life dying, but at least we still have them here, something that for a few weeks, I didn't think would be possible.
All the very best wishes to you, and please get in touch if you want to talk any time. We are in Leicestershire, not sure where you are.
I know a year is a long time but not where brain trauma is concerned. Mine was Dec2011 and it's only now that the fatigue is becoming more manageable. Previously I was in a comatose state by 9pm each evening (then awake and restless by 3am). Now I rarely put out the light before 2am and sleep through but, admittedly, I rarely emerge 'til 11am. But I never nap during the day although I do have to rest occasionally by sitting and using the laptop or doing a crossword.
We all seem to settle into a routine which suits our needs eventually but in the first year or so it can be very much trial and error and, I believe, quite a challenge for loved ones/carers.
I suspect things will improve with a little more time but will happen so gradually that it won't be all that noticeable at first. For me it's been mostly about acceptance alongside the daily fight to 'do better'.
There are folk on here who've been severely disadvantaged by brain trauma who've progressed amazingly...............but gradually......... and are accomplishing ambitious goals.
So all is not automatically lost dillyd...........maybe just on hold for a little while longer.
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Crushing Fatigue
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