Carer needing support

Hi all, sorry just, needed to whinge & this is the only place I can.

As some of you may know me & hubby were in a RTA 15 months ago where he suffered a severe TBI.

He is doing ok I suppose, but having stayed strong most of the time myself, things seem to b falling apart.

Really struggling with sleep, tired and full of aches & pains( I am no youngster so bound to happen), I am finding it really hard to cope, especially with the sudden mood changes.

We seem to have one appointment after another,just trying to sort his many problems, eyesight, dizziness, balance, meds, it just goes on & on.

I have to sort everything now, from bills to household chores, meds. Oping with dicks depression and mood changes & all the problems that anyone with a TBI already knows.

I know it sounds really selfish, but it's so hard .everyone is rightly concerned about him, but sometimes I think, what about me?.I am going through it too.

I don't have time to get my cracked tooth filled, or my hair cut.

Anyway, can't say all this to anyone else, but sure someone here will understand & feel better for getting it off my chest. No more tears 2 nite, but may have another glass of grape juice and try to get some sleep.

Thanks all x

14 Replies

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  • Hiya & don't put too much blame on yourself for feeling the way U do, it's not easy

    Can U not get someone t take over for an hour or so cos it seems essential that U get a little bit of me time, you've got t look after U as well, otherwise you''ll be of no use to your husband & it's starting t sound like you're getting close t that stage now !!!

    Book a hairdressing appt, go an get your tooth fixed cos it really isn't fair on you - contact social services or someone if U can't get a carer. I'm sure someone else will know who exactly but there must be someone who can give U a break ;o)

    Re the struggling with sleep, you might well have seen my other posts, but a 20 minute power nap, refreshes U completely. Even if U don't literally sleep, closing your eyes & sitting there quietly, completely relaxed with your eyes shut will have the same effect.

    Give it a go, what have U got t lose ??? - 20 minutes !!! but it might just change your life.

    The thing is don't go too far past the 20 minutes because then U move into a different part of sleep so won't have the same effect.

    If U don't feel refreshed by some chance U can always have another 20 minute nap but they must be broken up, having a 40 minute nap as I tried to explain before just won't be the same !!!

  • Bless you, go and shout at the world in general, your doctor and your family and friends . Take up every offer of coffee by saying yes come to mine and let them take over the chatting and get yourself ten or twenty mins to your self.

    Have you tried your local carers services or daycare services.

    Wish I could come give you a break.

  • Oh my heart really goes out to you. Please try and get a break, like the others have suggested, asking friends to chat with your husband, having short lay down etc.

    Also could you get proper carer's support for your husband? Then they could take him to your local headway group - or headway may be able to collect him. Best of both worlds, hubby gets someone to chat to etc and you get a complete break.

    Be kind to yourself too - you matter as well :)

  • Really feel for you Hun, my fiancé suffered a TBI last September and came home from hospital in Feb, it's hard going caring for someone on your own but I had to learn to accept help from family and friends so that I could do the simple things like getting a hair cut! I had to get this whole new routine going too which was hard but things like getting Les into to watch TV about 7pm and then having time to soak in the bath or read for an hour we're essential to us both.

    Please look into your local day care services to as it's important for your husband to get some independence back, although we want to wrap them up in cotton wool.

    Unfortunately, les went back into hospital in July for a routine op and had a brain stem stroke so is now in a coma! And we are back on the roller coaster.

    Sending you a big hug as I know we need that sometimes more than anything else, take care x

  • Hi dillyd

    You must spare time for you , I am so in a position were I get help from a paid carer 3 days a week,

    My wife had a SAH which left her with short term memory problems , Whinge away you are not on your own - push the doctor for more support for you, the RTA has affected you both , is there a Headway near you , or do you have a social worker who could get you some support . best wishes

  • My wife does pretty much the same for me as you do for your husband and I also know that she gets little or no acknowledgement for the massive support and difference to my life that she makes. When in company and meeting people who sympathise with me I always try to draw their attention to the massive amount of pressure that Pam has to cope with on a daily basis and how much she helps me cope with the various problems and feeling that I have and strongly supports me when confronted by people who don't understand that 'invisible illness' can be severely debilitating and devastatingly life changing.

    I haven't, as yet, read the rest of the reply to this thread but I am pretty sure that they will be pretty much along the same lines.

    I would expect that all on here would recognise sympathise with you, valuing your commitment, and NO you are NOT being selfish looking for support when you are being so SELFLESS in looking after you husband.

    I wish both you and your husband well and hope your situation can improve.

    This site is, as far as I can tell, here to give support not only to the victims but to the carers who are just as much in need of support (if not more so), so feel free to whinge away as much as you like.

  • Oh no, why is life so unfair sometimes. How r u managing to go through it all again?

    My heart goes out to you and return the hugs threefold.

    You're right, everyone needs hugs c

  • Am back to taking each day as it comes Hun, feel free to rant away whenever you feel the need x

  • It seems that you have to be at breaking point before the GP etc. can get you some help. Are there any friends who will come and keep him company for a couple of hours? In another life I had very poorly premature twins who needed feeding every 3 hours and was on my knees as people were too frightened to babysit. In the end we got them to come in pairs which worked very well.

    Please feel free to kick off or do whatever it takes to make the powers that be see that they need to put the right help in now, or they'ii be paying out a lot more in a few weeks time. You need regular help either from people coming in or a day a week in a day centre.

    If you go down, the wheels will really fall off the bus. Your health is just as important as your partners.

  • It makes perfect sense - you've been in emergency coping mode but you cannot do that forever, now your body/mind/soul is telling you it is on the edge of an emergency too - who is going to care for you both?

    Go out and shout long and loud to anybody and everybody that can help - start with your GP; Headway, Carers groups etc. The hard reality is that if you go under because you cannot care for yourself/hair/teeth/emotional/physical/psychological/spiritual self who will care for your husband?

    Don't for a minute think "I am being selfish" no you are being responsible - taking excellent care of yourself is the best thing you can do long term to help your husband too.

    Unfortunately, carers of all kinds get a rough deal as the support services/health services and ultimately government, see them as a cheap option and neglect them until they collapse unless they jump up and down and shout long and loudly and bang on every door. My Mum had multiple strokes and I had to get assertive and tough to get help for her too - I know it is not easy.

    Hugs and huge respect to you and all other carers. This is a great place to vent and offload safely.

  • Many thanks all for your support. I did manage a cAt nap today while dick was sleeping and it really did help.

    Have taken advice and managed to get care all day on Thursday.

    Won't know myself, but am going to London to see all the poppies with my son, daughter in law and grandson.

    Sure there are more sensible things I could do but really excited about it.

    Thank u all for giving me the courage to just get away for the day.

    I'm sure we will both feel better for it x

  • Throw sensible out the window! Special enjoyment with the rest of your family, different scenery and most special of all 'YOU' time! Enjoy your day and treasure every moment of it, you more than deserve it.

    The poppies look amazing on TV so up close and personal they should be overwhelming.

    I find my Granddaughter a great boost and cheerer upper so it looks like you'll have a wonderful day.

  • Hi, I also care for husband & for a while had to do everything that he used to do as well as the things I did so know how you feel. try looking up you local Headway organisation, plus the Carers Trust where you can find your local Carers centre = staff at both are great. they really helped me in the early days & it helps knowing they are still there when I need support, advice or just a should to cry on.

    Things do improve & then dip again, & you learn to adjust. but boy can it seem like forever when you are going through it.

    This site is great for support too, especially at silly times in the middle of the night when you are awake despite being exhausted & don't know what to do.

    ask for help, from friends, family or social services. you are entitled to support so you can have some time just for you, to get your tooth sorted. Many people are happy to help but don't know how to offer.

    thinking of you, sending you a huge hug. xx

  • Hi,

    Just to agree with what others have said above. My other half had her TBI in early 2011. Looking after her, working and supporting two teenage daughters ground me down over 3 years.

    I got myself into a very dark place last year, I would not wish anyone to go down that path.

    For me, a few months of Mindfulness, Meditation, a carers counsellor, and loads of Bhuddist philosophy on letting go did what 3 years of antidepressants hardly even touched.

    One of the biggest hurdles is handling the GUILT you feel as a carer when you do something for yourself. You really have to look after yourself and take that "me" time. In order to be an effective carer you have to look after yourself.

    One of my favourite meditations is metta/loving kindness, where you can flow thoughts of loving kindness to individuals and groups. However, it always starts out "May I be well, may I be happy..." and newcomers always question that, the reply is invariably "How can you flow loving kindness to someone else if you don't love yourself?"

    So give yourself a break, you deserve it!

    Take care, Dev

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