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Am I going mad?

Sorry bit of an odd title I know but long story short boyfriend in hospital for 7 weeks with hypoxic brain injury. I've visited every day he has been there, hour each way on bus etc. Everyone keeps telling me I need a break and to not go but tbh I don't feel like it is an option. His parents from Monday to this Sunday will have only visited 3 times and his brothers rarely go too. To me I can't envisage not going as I don't want him to be alone and can deal with that but what I can't deal with is everyone telling me how to be. Are they right and I am going mad or could it be like I feel and there is no right or wrong answer.

Sorry for the long rant

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Hi, there’s only you can really tell what is the best in this situation. Other people always have their opinions but it is you who is dealing with this.

Once I was out of my coma, and whilst in it too, I needed daily visits for the stimulation and also the reassurance. Brain injury is very frightening and confusing, familiar faces and loved ones are crucial to recovery.

But you also need to look after yourself. This is a long hard road you are going down, it will tax your strength and determination, please be kind and look after yourself, no one else will do that.

I hope you find the right balance.

Take care

Janet xx

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That was such a perfect reply for for the young lady. I wanted to try and help, but saw your reply first . Thankfully, because i would not have been able to have put it into words as well as you did. Thank you for helping me as well. It would of took me ages to do it as well.

Lin

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Good morning I'm so sorry you're going through this..

When my husband was in hospital in visited him everyday and everyone told me I needed a break but like you I couldn't imagine not going!! The reality is they were probably right as it wore me down completely but you have to do what feels right to you. If everyone asks you to take a break could you ask them to help you by doing food shopping/washing/cooking easily reheatable meals for you etc instead? When my husband came home we both spent quite a few weeks sleeping however be wary that when he does come home although you won't have the travelling and emotional rollercoaster of seeing your hubby in hospital you will have new hardships.

Take care of yourself the best you can make sure you eat! Sending you love and strength xx

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Sorry this has happened. Whatever you feel you need to do also be sure to take care of yourself so you'll be better able to deal with everything that is happening in your world too.

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What you are going through is extreme stress and you do need to ensure you stay healthy, to be there in the long run. My wife lost 3 stone in around 5 weeks and it was one of the worst times of her life.

From my perspective her visits along with my daughter were very helpful, although when I was somewhat better I did insist that she didn't visit everyday.

So I feel the issue is, is your boyfriend well enough to understand the stress you're under and therefore not upset by you not visiting everyday. It sounds like you're a strong person but do make sure you don't push yourself too hard, good luck during this difficult time.

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Thank you everyone I didn't imagine this could have given me more peace than it has so thank you

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After I was out of danger and on the neuro-ward my family took turns in visiting. If you can consult each other on who's-going-when, it's easy to arrange for your partner to have daily visits without you making the trip 7 days a week.

It depends on whether you agree that you need a break for one or two days a week ; whether it's causing you undue fatigue. If you're happy & organised with going each day then it's no on else's business.

Hoping your partner will be home before too long.............xx

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What sort of a state is he in?

I was in hospital for 8 months. My husband definitely couldn't come in every day. He bought a whiteboard for my room, and he would write "Rob - Wednesday afternoon", to say when he would next be in. (He had to, as my day-to-day memory was shot to hell). The hospital was about half an hour from our house, but he had our two kids to look after, and his job to go to (which has flexible hours, but also more than an hour's commute, each way!).

I would say: plan the days when you will visit, and let him know when to expect you. It does sound like going that far daily is a bit much, but I suppose it depends what sort of a state he is in, and how much he looks forward to your visits.

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Thank you he is doing well. His memory is okay short term has blips if you move his clock he can get confused about time and think he has missed visits etc but we still have his personality and humour but he has to learn to walk talk eat and get dressed etc again. X

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Oh, good, he sounds like he is doing well. When I was 4 months post-accident, my husband booked us pantomime tickets, with our almost-four-year-old. He booked them as disabled seats, in a wheelchair. However, there is a footpath under the railway, with steps either end. I walked down and up the steps, then refused to get back in the wheelchair, because I didn't *need* to. "Flump, we have 'disabled' seats, they have arranged us a special seating area, because of the wheelchair. They will be angry, if you are not in the wheelchair. Get back in, even if you don't need it!"

I am sure he has plenty of improvement still to come. I would say that, if you explain and record when you will visit, he will accept it. Make sure he knows that you love him, and you *will* be coming back, in two or three days, or whatever, I am sure he will accept it.

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You have a personal relationship with your boyfriend and I reckon he needs you there. You are not going mad. Everyone else can back off; but they can put the kettle when you need to vent, and make you a cup of tea. Good luck to him and his recovery.

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Do try to look after your self, my wife came ever day I was in hospital though I was only in for short while, and said she always felt guilty leaving me, she took her sister who essentially looked after her, and fielded phone calls and what not!

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My son has a hypoxic brain injury sustained 2 1/2 years ago. We visited him every day (all day) whilst in hospital for 2 months and then had a 5 day break as it does take its toll on you. During that break his grandparents visited every day. You do need to look after yourself and I am sorry that you are going through this I know how truly terrible it is. Best of luck and hoping things improve soon. Xx

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Thank you. He is doing well now. We were lucky he has retained his personality and humour etc we just have to teach him how to eat, walk, get dressed etc again as it's those bits that have gone. If you don't mind me asking how long was he in hospital for and how long was he without oxygen? I know with brains it's too complex to be an indicator I'm curious. X

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He was in hospital for 3 months before going into rehab for 6 months. He also retained his personality etc but had to relearn to walk, dress, write etc. He has been left with poor memory and cognitive abilities. He was only 18 when this happened so age is on his side as the younger you are the prognosis for recovery is better the doctors told us. He has made remarkable progress from the early days when all looked very bleak. I'm not sure how long he was without oxygen for but it was a while I think - he had CPR waiting for the ambulance and then it took them a while to work on him at the scene until he was taken to hospital... Let me know how things go. Big hug I know how dreadful this is. X

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Thank you long process. Sounds similar although we had less on icu etc. 6 weeks. Your story sounds so similar to ours. I'm glad to hear things are going well for you. X x

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Do you feel you need a break from visiting? You do need to look after yourself as if you get ill and can’t visit that won’t help him or anyone. How is he feeling? Is he wanting visits all time or could you just phone him?

Being in hospital is boring so for me I wanted visits and did get them every day. It would have probably been better if I had my mobile with me but I had a photo of the dog that was killed in my accident on screen saver so would have been too upsetting seeing and as upsetting asking for it to be removed. I had occupational therapy and physio which took a bit of time up but no where near enough. I saw occupational as more something to do as it was things I could work on myself. Physio was what I was most bothered over and even having extra sessions of both was still boring being in hospital.

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When my son was in hospital for 5 weeks I visited every day. I didn't visit just for him, I visited for me too. It felt right for me. If I hadn't seen him every day I personally would have been more anxious and worried about him which would not have been good for me.

Do what you feel is right for you. Having said that, I was very fortunate to be able to stay with friends close to the hospital so I didn't have to travel far and I was retired so no work or other commitments.

You are far from going mad, you are loving and caring and doing what feels right for you.

Take care of yourself too as everyone has said xx

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I am a disabled person person from 1988 and still appreciate my husband being involved. He visited me not every day but my family did. I appreciate the people that came every day cos that proved love in my opinion. But my husband says that was his way of coping not coming every day.

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I hated the fact my husband hardly ever came to see me in hospital in my opinion he did not care. I still cannot forgive him 20 odd years later. No two relationships are the same. So you will know what you should do. Take advise if you feel you need a break maybe you could work something out with his family so there is always someone visiting.

Sorry not much help but credit to you for finding the time. It’s hard work.

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Our son was in hospital for a total of 6 months and I was with him every day. I couldn't stay away. Yes, it is exhausting - and I could only be at the hospital each day because I was being totally supported by family and friends (and often accompanied by them during visits). But I also needed to feel that, as his mum, I was doing everything I could possibly do to help him return to us all.

Mind you, some times he would look me straight in the eye and say "when is my mum coming to see me? I haven't seen her for weeks". Choking back a tear or two, I would take a deep breath and explain that I was his mum and that I was there every day! He stopped saying it eventually!

It made ME feel good to be there so, if visiting every day is for you, it should matter to nobody else. Keep checking your health and wellbeing though and try and get some friends or family on board to support you. x

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