I don’t know what I’m doing : I think I must be the... - Headway


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I don’t know what I’m doing

pozza40 profile image

I think I must be the weakest person I know. My husbands only been home 2 weeks and I’m really struggling.

I am sitting here in tears, and I just broke down in front of him because I couldn’t move his bed into position.this is all so hard, my family is collapsing and I am trying so hard to keep it together and try to keep things normal for the kids.

I feel really selfish,feeling this way.i want my old husband back, he is here in body but it’s not him.the kids don’t know what to say to him so are staying in their rooms.

I feel sick with loss,of my husband as he was and our old life.

What do I do,I can’t see a way to make this better

12 Replies

Does your husband have a social worker? Speak to Headway? Call the rehab place where he was? Do something Pozza, your sanity is the most important thing here. I will be thinking of you, I always am, please let me know how things go x

And you are not selfish, you are a wonderful, kind and loving person in grief for your old life. I know exactly how this feels.

Yes this is totally normal to have these moments, I'm at work but when I get down time this evening when everyone settled will respond again.

I'm wondering how much support you have Pozza ? You're facing a challenging and unreal situation caring for the man who was previously fit and capable and someone you relied on.

The strangeness of that changed relationship will be heightened now in a home setting, and your new caring responsibilities will feel truly overwhelming. And after trying so hard to cope this past 2 weeks, I suspect the shock of reality has fully hit with the bed issue being the 'last straw'.

Keep reminding your children you are aware of their fears and their loss of the old dad they've always known. It does get easier as the newness and fear of the unknown starts to fade ...........but please let your GP know how you're struggling ; he/she might suggest temporary medication to relieve the stress and help you cope during these difficult, early days. And ask for any availablehelp & support.

You're not weak my dear - and certainly not selfish. Going through trauma such as you have, and caring for children whilst taking on care of your husband shows determination and guts. You are human, and not yet trained in climbing mountains....

Phone the helpline on 0808 800 2244 for advice on extra support and kindness. Sincere best wishes, Cat x

Hi pozza, the first part of sorting things out is to realise that you are struggling. You are not selfish for grieving the loss of what had been, that is natural.

You can't shoulder all this on your own, you need help, social services can help, and you need a carers assessment, to find what support you need. Social services are usually contactable via your local council.

Contact Headway, they offer support for the 'survivor' and the family, they run activities for children to explore how they cope with the changes, and they can help you.

Talk to your GP, explain how you are feeling, and how difficult you are finding caring.

You are not weak, and it is not a sign of weakness to reach out for help, it is a strength.

You need to prioritise yourself as number one.

I am really glad that you have joined this forum, and I am glad that you have the strength to reach out and ask for help.

You are NOT selfish. You are NOT superwoman. You are HUMAN and this is hard as hell. It's of non-use for me to say that you must not be so hard on yourself, because that's impossible. What you're feeling is 110% valid and I fear these feelings when my husband comes home. Who do you have supporting you?

As already said, DO NOT BE HARD ON YOURSELF. Everything you have said and experienced are normal and the kids are protecting themselves in this adaptation. They actually may come to terms quicker than you, as kids are very resilient and you must give them some credit for that too. Gradually you will all get used to the different life, but dont consider that a bad thing. At least you still have your husband...be grateful for that. Whilst I hate to say it will be a long haul, pick out the positives, however small and magnify those. The road may be bumpy, but believe you can do it. You will find inner strength.

Best, ❤️

Hi Pozza40, I wish I could say this face to face sitting down with tissues over a coffee then take a deep breathe with you. The first 6months is totally beyond emotional and physically exhausted.

I was on my knees this continued for 4.5months eased slightly at 6months. The best I could do was wash, dress myself, but on demand constantly with children and husbands caring needs.

The crying, nausea, unwanted thoughts were constant for me the first 3months,, I thought I'd been beaten, I couldn't do it and few points thought he needs residential now.

Were now 13months No major changes everything still same with caring, and behaviour, but somehow its become natural we have adjusted.

You will have these moments, I had that moment just two weeks ago, but with time I have noticed it eases and shortened but lingers around for longer

Children, my son 16 in July he wont talk to my talk we thought he was becoming talkative until my husband had a moment and hes gone back in room, he doesn't come out. My toddler been offered play therapy as she has witnessed behaviour no child should see, but past month seeing positive changes

You my lovely just got to persevere, and get through hour by hour. If your lucky to have friends, family take every opportunity.

13months down line I'm juggling work until lunchtime and work from home, it's only working now and i returned in September which I thought months prior impossible to even vision. My day starts 5:30/6am and I get to sit down for me 9/9:15pm as husband got to be in bed by 10pm latest that's if toddler dont wake up during night. My energy levels burnt out now, reason for having two week+ mode feeling crap,

Scream in pillow, pace garden anything to get this overwhelming feeling out. Put visual rota up find routine that works for whole family.

Dont put yourself down, easer said than done know. Try and hold emotions out of husbands view though.

All the best

Don’t be so hard on yourself. Being a primary caregiver is hard. I don’t know to what extent your husband is disabled or the possibility of him recovering. If his current situation is a permanent one or he’s in rehab etc. What I do know is you cannot afford yourself to get down and stay down. Life as you may have known it has changed. You cannot fight that; it only makes matters worse. Find programs to assist either with his care or a support group to give you strategies to cope. As for the kids, I don’t know their ages; however they may also benefit from talking to someone for support and more understanding of their situation. Their father, your husband is in need of care. Your family is in need of support. You have to somehow find a balance or it will all crumble. Is there a social worker assigned to your husband? Use that person for information on where to get assistance to help care for your husband and also where to get support for your family. If the kids are old enough they have to somehow come to terms that their dad needs care and you cannot do it alone; they need to help. Fighting reality in front of you, holding on to what he was is good for memories but not realizing and coming to terms with your current situation will not be beneficial to no one. Sickness, injuries can occur to anyone at anytime and often times they are life changing. Learning how to change with them is difficult but it’s also needed. “You cannot judge a fish by its ability to climb” You have to meet your husband where he is and work with him from there. I’m sure he also wishes life was at it were prior.

Hi, I've just read your post and wanted to let you know about some things with might be of help to you. My friend had a traumatic brain inury 2 yrs ago this months. He collapsed into the road, had 4 weeks in hospital, 1 week in a induced coma in ICU..

It was a big shock for me and I've tried to help him as much as I can as he has no close family and I'm the same.

It's been a big learning curve although we had some advice from our local Headway who were really nice.

I found out that I can claim Attendance Allowance for my friend and Carer's Allowance for myself. The details are on the .gov.uk website. You can claim if asap as it only starts to get paid after the person has had the condition for 6 months. It was quite easy to complete.

The money can be useful to perhaps pay for some home help to come which it what my friend has.

Also we rang our local Care Connect through the local council and they arranged for us to have a Social Worker who went through a financial assessement with us to say whether my friend would have to pay for any extra help through them. So they may be a good point of contact for you.

I think we had to contact the people who provide equipment like a walking trolly, shower seat, walking frame which were provided. Occupational therapists, think you can contact them through your doctor or via the hospital.

This site has been just brilliant for for me as I thought I was the only person who didn't know how to deal with my friends injury and I found this. I have learnt so much and have always got such lovely helpful replies from the people on here so please keep posting on it when you feel need or just want to chat.

If I think of anything else I'll get back to you. Take care. Brenda

Thanks everyone, your messages really do help me. We are getting support,my husband does have a social worker who has put a six week care package in place,after that it gets reviewed. But there’s not been any offer of anything for the children and I haven’t left the house for two weeks now.Hes so badly affected, he is in bed in what was our old dining room.

He has no use of his left side at all, he cannot sit up without two physios holding him there. He cannot stand,he is incontinent, he can just about feed himself,if I cut it up and turn his plate round half way through because he doesn’t see the left side of the plate.

This is a year after his stroke and I hate to admit it but it’s hard to see how someone can come back from this. Does anyone have any experience of such bad physical affects and getting some useful movement back.


ored13 profile image
ored13 in reply to pozza40

Sorry to hear that you have been allowed home with no care package in place for your husband who clearly sounds like he needs this. I'm quite new to all of this and have yet to see my husband in the flesh and not just through glass once. Have you looked into any private services for rehab? Maybe something alternative. Again I could say sorry to hear this that and the other but it's not really of any use. And I'm guessing you have already spoken to Headway so again won't suggest that. ❤️

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