Struggling as a carer

[Pixieloo]

So my husband had a brain injury 2 years ago he was in hospital for 3 months, and has done amazingly well, I on the other hand am buckling fast.I find him exhausting and frustrating I feel disconnected and joyless. I feel terrible for the resentment I feel towards him now...I just need help to live ...any words of wisdom would be appreciated I feel like I'm going to implodes..

[RecoveringH]

First things first, you. Pick up the phone, go into a private room, shut the door, sit down with a hot drink, and phone the Samaritans, and start talking it through out loud. You will feel so much more clearer and by talking, you will be releasing the pressure that has built up.

We never imagine we need the Samaritans phone line in our lives, however, talking it through with a stranger is sometimes the most helpful activity you can do to see clearly.

Headway helpline may be able to offer practical assistance to ease his day to day.

Best

[TaIaV]

Dear Pixieloo,

I am glad that you reached out in this community. It sounds like you have been persevering for 2 years and now are feeling stretched to your limits. That is a terrible way to feel and it can be damaging, too. Listen to your instinct about a potential "implosion". It sounds like you need to access a near term release valve or counseling to get you past this immediate crisis.Please reach out to several places -- for example the Samaritans as recommended by RecoveringH.

Beyond that, like all of us, you face two ways forward to a better state: 1. Changing the reality of your situation and/or 2. Changing how you let it affect you.

Regarding changing the reality. I don't know how much help you get with the actual caregiving (we caregivers often wait too long to access help) or whether the frustration comes more from the relationship and interactions with your husband. Perhaps your joylessness comes from the overall awareness of how your life has changed. Sometimes getting to the end of our rope is what really pushes us to face the kinds of changes that are actually possible. Perhaps a friend or counselor can help you catalogue all of the things that you would like to be different and then, ideas about how you could change them -- a little, or dramatically. Don't feel the need to be realistic when you do this. Dream big. Even unrealistic ideas can lead to other, doable changes.

Regarding changing how the situation affects you. Once again, I don't know the details and I don't want to offend you by recommending things that do not apply or that you already know well. With that caveat, I'll mention a few possibilities:

- Detaching emotionally from the situation and even the relationship may be necessary to get yourself "Connected and joyful" as an individual again. His life and your life as a couple may have changed forever in ways that are largely out of your control, but you can nurture your self. People have faced this same challenge in wars, in prison, in destitution. Those who survive such calamities best are those who find and protect a personal source of meaning and joy. You can do this. It sounds like it may be essential if the facts of the matter are as dispiriting as they sound.

- Sometimes we get so attached to our idea of how things should be different that each instance of how things actually are drives us crazy. Accepting that some of those things will not change removes the irritation. It sounds defeatist. It is actually a life saver ( and a relationship-saver). It is remarkable to me how effective it is to use that" switch" that turns off the constant feeling of resentment or irritation. [Clearly, a situation of abuse, etc should never be tolerated.]

I'll stop here. I am sorry that your life took this turn and that you are in such distress. I hope you will get help. There are much better times ahead for you, I am sure.

[Pixieloo in reply to TaIaV]

Thankyou for replying, I feel like a fraud tbh as hes done so well physically but mentally hes draining the forgetfulness the constant mindless chatter the lack of responsibility or mindfulness, if been poorly all weekend and he just hasnt noticed the house is a state the dogs need walking shopping needs doing and I have to work aswell. He used to be an engineer and earn good money we have been turned down for every benefit going and despite being signed of by the dr hes taken a zero hour contract night shift job washing up in a pie factory, which for me is some welcome time to myself

[Pixieloo in reply to TaIaV]

I really appreciate your reply, people just think hes done really well and I must be so happy, I really really am far from this.He suffers with lack of empathy or understanding for other people I always say its like he has autism now

[Elenor3 in reply to Pixieloo]

I’m so sorry to hear about your completely understandable struggles. It’s very difficult when such a dramatic personality change happens overnight. Things may yet improve if your husband gains more insight into how he is since the brain injury. Just wondered if he’s had follow up Neuropsychology sessions? It’s difficult to hear that your behaviour has changed, but once you accept it, you can get to a place where you can try and recognise that you’re not the same as you were before. Is it worth contacting your GP and asking for further support for your husband? Just a thought . Wishing you many better days to come x

[Pixieloo in reply to Elenor3]

Thankyou for your reply, gp just refers us to time to talk or Hedway, atm hes on a zero hr contract we are lucky if he gets 1 shift a week, hes only able to wash up as he gets in a muddle on the assembly line, I just need some time to myself desperately, last night with lockdown looming the temptation to get on my car and just go was great. Covid has put pay to any face to face therapy but he was having speech and language via phone call, but tbh she didnt really get a handle on what life is like with him.

[Elenor3 in reply to Pixieloo]

I wonder if going back to the GP and explaining that the community based groups aren’t improving matters and asking if professional medical assistance with a neuropsychologist would be possible? In many areas this is time limited - so maybe only six or eight sessions - but he’s just as entitled to help as anyone else. If the GP refuses to refer him for this I’d ask them to explain why? . Wishing you all the best over these next four weeks - maybe if you can try getting out of the house for even just twenty minutes and walking briskly round the nearby streets might helps to diffuse any atmosphere xx

[Pixieloo in reply to Elenor3]

Thankyou this morning I felt like getting in my car and disappearing, I cant see life getting any more positive tbh, he cant keep a job he used to be an engineer, we can get any benefits and that 8snt for lack of trying, even our MP wont respond re this.

[Elenor3 in reply to Pixieloo]

I’m sending you a message x

[Pixieloo in reply to Elenor3]

Thankyou it's not come through yet x

[vwvanman]

Dear Pixieloo , I know this is a very difficult situation but you must set yourself some me time , it is so important you look after yourself , I am so lucky to have several female friends who help and understand my situation . I wish you loads of luck and keep smiling , since my wife haemorrhage I have perfected sarcasm as a defence .

[New_beginning]

Were coming up to 9mths, im at early stage, but i understand your emotion. Im still going through the motions. This forum is my only support I have sadly, but such a vital support for me x

[Pixieloo in reply to New_beginning]

Same for me too it's so hard isnt it I'm literally at breaking point almost 2 years to the day his car accident happened....

[New_beginning in reply to Pixieloo]

Im sure the date of accident, accumulation of exhaustion, trauma is not helping your emotional needs at this time, just to add with this lockdown with no support services. I really want to go to headway support group to meet others as i have no one, which says alot as i have a barrier around me, due to everyone disappeared months ago or not bothered with inhumame avoidance.

My chest sinking even thinking of March. To the point ive not booked no annual leave over xmas, just so i can work first 8 days and be off all of march, i know i will be a mess probably near a full nervous breakdown. I know ive had 4 mini ones for a week at a time, just been on auto pilot each timr very dazed and just sticking to structure plus toddler and teenager to add to the mix.

I really feel your emotion, and hope after the date passes you see some light or make decisions best for you both. Realistically going to be tough, i have to work full time as even if I drop 30hrs a month, still not entitled to anything, i dont get it, cant get support with childcare, and can only afford 2 half days per week, so im constantly rushing around, to finish work at home (impossible with virtual mtgs with 2yr old screaming, shouting in background). But grateful i can pay bills with help of overdraft, thats just not getting smaller. However, ive not gone down the carers assessment route yet.

Just stay strong, you have come so far x

[Pixieloo in reply to New_beginning]

You are amazing and I so appreciate your response I identify fully, myst be so hard for you with the children, my son stopped talking to me a year and a half ago when I tried telling him I was done with the marriage, I was just a caret and needed more, so that's been extremely tough. Like you I choose to work as much as I can especially xmas day, I thankgod for people like you and this forum at the moment, as people have disappeared from my life unless om cheerfully....

[New_beginning in reply to Pixieloo]

No one understands do they, reason sunday i declutted my mobile numbers and blocked, they were in fact a burden dropping there once a month message whilst living round corner, not supporting or check in were ok, peoples avoidance and behaviour i will not tolerate now im not wasting time on them. Blood or not, ive cut them off now x

[DMreader]

I totally understand you. Like you, My partner has done extremely well physically, but mentally she has issues. She got kicked out of the hospital very quickly on last shut down, now after nearly having a breakdown myself I am having to make hard decisions. You do need to take a break for your own sanity. I am a strong person but this has broke me. The constant behaviour the lack of empathy and reasoning. Only you know what goes on behind your closed door. Try and get respite I know easier said than done, but you need it. This will break you if you don’t do something to get some you time back. Good luck x keep strong.

[Pixieloo in reply to DMreader]

Thankyou for your understanding, you've nailed it exactly, I find people are sick of my moaning and think I'm ungrateful, the lack of financial support from the benefit system doesnt help, I really do feel cut off from any happiness and no idea how to get respite for myself, xx

[Pixieloo in reply to DMreader]

Its sooo hard isnt itim strong too but iv really had enough now, there is no benefit system to help you when you fall despite both of us always working, him especially had a skilled job and paid nearly £100 a week in tax, we are now living on my min wage 20 he a wk job and his zero hr contract job washing up for min wage, hes lucky if he gets 1 shift a week....

[DMreader]

Speak to your doctor about respite care for a week or two. Do you have family that could come and look after him for a while? Try anything to give yourself a break you need it.

[Pixieloo in reply to DMreader]

No fam they all live other end of the country, if tried every Avenue the last couple of years, everything thing we try is a no.

[TaIaV]

Hi Pixieloo, Just checking back in with you. I hope that you have found some relief both from internal sources and from some outside help. Wishing you well, Taia

[bellabobs in reply to TaIaV]

HI, thankyou for checking in on me, I'm ok still plodding on, nothing major has changed I'm just functioning working, keeping things going and being a carer, tbh I'd like to leave but I cant for financial reasons amongst others and we've been together 20yrs so i would be lost i think, it's a bitter sweet dilemma. I try to remeber the man he was , where I didn't have to stop him walking out in the road , etc etc but I cant. I'm quite isolated not only because of lockdown but because I feel selfish sharing these feelings of resentment xxx

[TaIaV]

Thanks for letting us know how you are. keep in touch with this group. There is no judgement here. People here know very well how someone can be fully dedicated to doing what is necessary as a caregiver and also feel burdened.

I just learned a little (1 to 2 minute) breathing exercise that I find very helpful for those moments when you need some distance or a "break" but can't get one. Here is the little instruction video youtu.be/YRPh_GaiL8s(Not working as expected?)

Wishing you strength and bits of joy.