oh god,where to start. i am sorry if this post upsets anyone struggling with having a bi but i am really struggling.
i feel like what has happened to my husband has destroyed our family. i care for him full time and dont leave him, only to grocery shop or walk the dog. i get 4 hours sitting service a fortnight where i literally just leave the house wander round the shops and go for a coffee. our two eldest children have left home leaving our teenager daughter to witness her dad, his confusion and perception of everything is bewildering and sometimes scary.
she crys all the time, her friends have fallen away because she stopped inviting them home,she wont go out,shes even told me that if she wasnt here anymore it would stop her feeling so sad all the time
i cant talk to my husband about it, ive tried.he didnt understand.
he is pretty much bedridden,left side spatial neglect,hemiplegia,incontinent and has half of his skull still missing.
im sorry for the miserable post but i literally do not know where to turn.
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pozza40
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Wow that's a tough read. Hopefully you can search out some much needed support, or someone here knows more than I do and can advise. It's disappointing that your two eldest have gone because their help and support is something that you sound like you really need at the moment and ongoing in to the future.
I am sorry for what you're going through. It's tough to say in the least. My brother is bedridden since 2020 January due to a cardiac arrest which left him with ischemic stroke and a TBI (hypoxia). Everything changes in the family for sure. However, I would encourage you to keep going on. Seek self care whenever you can with whatever you got. Grounding is great. Let your bare feet touch the ground as often as you can for rebalancing your energy field. That's all I can think of now. There are very many other ways. You only know how you feel. I wish you strength and hope.
If you can get hold of Amanita Muscaria tinctures they can help with what you're going through. Anyway be strong, he's probably all you got. I am with my brother at home as we speak. His speech is slurred but his long term memory seems intact. Short term is affected but he does know people. Therapy and nutrition is critical. Good day.
I'm so sorry, Pozza, this is happening to your family. It's rough.
Have you called Headway? You are allowed to ask for help for you, and for your daughter, too.
Some situations require professional help, no shame in that. It's a heavy load.
There very may well be a support group, for example, that meets online so you can talk to others (who get it and have helpful ideas) on a regular basis.
Ring Headway,social services and the brain charity today, you, like anyone else in this situation need help, all of you need help and that's normal,,My heart goes out to you all,please ring someone, just ringing can help I found I felt like I was taking a tiny bit of control into my life, where it just seemed to be spiralling downwards,
Forget the brave face the brave smile, ring and take every bit of help offered
Sorry to here another family left to get on with it.How long has this been going on ?
Contact Headway, and get a social worker if you haven't got one.
It took me and my wife separating ( three young children at home plus me and my bi) before any real help arrived.
He could possibly be eligible for direct payments. To pay for carers to give you a break.
A word if warning when and I do mean when your husband becomes aware of the situation he will be horrified and will cause him to dip in recovery. Ignorance never ends in bliss.
Please seek help and accept any that is out there.
I am so sorry to hear this, it is so hard. Do contact Headway as they have knowledge and experience in this. The GP may refer your daughter for support too and my GP also prioritises carers via a carers network. I also self-referred to IAPT although in the end I got low cost short term counselling via a charity, Headstrong (this may be local to me). It was helpful. Take care.
Reading some replies and help for your daughter - possivly Childline online support? They have info on young carers, not quie the same but may help childline.org.uk/info-advic...
I’m not surprised you are unhappy .. I think everyone has said what I would say in their replies to you .. seek help for you and your daughter . Be honest with social services as nothing get done when you say your coping .. such a shame help isn’t there automatically But with some emotional support it will help .. keep chatting on here you will also get good advice and support from people who understand .. sue x
O Pozza, I am so sorry, you have been through so much and have been amazing and strong for so long. I do hope some of the suggestions here are of help. Don't apologise for posting it's what the forum is for.. lots of love and praying for you and your family ❤️
👋 I’m really sorry to hear about your situation and the pain you and the whole family are in. It’s really awful but isn’t the end of things. It’s really not the end. Things can change and never stay the same. Please involve your older children to support their sister. What your youngest has said is very serious and she needs an outlet; someone outside to listen and help her through what she is feeling. It’s no one’s fault that you are all in this situation. You all deserve to have caring support to help you through. Your daughter would benefit maybe going to the gp for antidepressants. Talking together and being heard without guilt is key. Contact Headway, gp, family and friends. Get all this stuff out in the open so it doesn’t ruminate and gain power. I remember saying what your daughter has said, I ended up with the local crisis team. You all deserve help so please do reach out. The situation you are in is hard enough but it’s so much harder without support and you do all very much need it. Also contact social services. Speak to the minister at your local church. There are people willing to help you and often just having people hear your situation and understanding the enormous stress you’re under, does help. Sharing the load that’s in your minds constantly by talking to others who understand makes a huge difference. I truly hope you’re able to do these things and get the support you deserve.
Hello Pozza, I've just been reading your older posts. It sounds like you and your family have had an incredibly hard three years. Four hours sitting service a fortnight sounds incrediby little support, when you are caring for someone who is permanently bed bound - it would be hard to care for someone for even a few weeks in that position. I know it's difficult organising help and support when you are already very stretched emotionally and physically - but as the others say you do need to get help for you all urgently now. What do the Headway helpline people say? As the others say here it sounds like they are a good place to start. I'm so sorry I haven't got any direct experience to give you in this - only the point of view of someone looking in from the outside.
Do you have a local Headway group anywhere near you?
Your daughter's feelings are a high priority, will she go to the GP with you when you have some of your respite care? Is her school aware of her current feelings and home situation - they may well have access to support for her - also many areas have a range of mental health support for the under eighteens.
Don't forget that either of you can talk about anything at all, not just suicide, to the Samaritans phone number is 24/7 on 116 123 samaritans.org/
I'm thinking that you need help to get some support organised, because I suspect you are already stretched very thinly emotionally and practically. Have you any friends or family, or the local church, that can help you contact the GP, and any agencies, or social workers that could provide support? Another mind thinking about this with you coud be a huge help. Is it possible to find your husband some respite residential care so that you can have a break and just focus on your daughter - your lives have been totally turned upside down in the last three years, and you deserve support.
A further option is to email your MP - their staff tend to have knowledge of a wide range of support agencies, and may be able to point out a source of support that you haven't considered yet. Or at least raise with them that support in your area for people in your situation is very limited.
Sorry for this ramble, I hope that you can get some practical and emotional support to help you and your daughter and husband to piece your lives back together after what has been happening. You're all in my prayers x
It's no wonder you are struggling - anyone would. It sounds like you are trying to carry an impossible weight.
On it's own being a teenager can be a challenging time, plus with everything else going on it must be even more so for her now.
Unfortunately talking to your husband might not be that helpful in your, understandble, state. I suffered a relatively minor BI 6 years ago & I'm still struggling to understand it's effects & the new me - which is a battle in itself. To try and be a supportive husband at the same time may be beyond him for the moment - through no lack or love or effort on his part. I know my wife sometimes gets frustrated/infuriated by some of my actions which seem to make sense to me but not to her. Perhaps I have lost some of the self-awareness/knowledge I had previously? Then again I always was a grumpy bugger!😏
I would echo other comments about seeking any and all help. It is absolutely no reflection on you or your family. An impossible load, is an impossible load - no one could/should have to bear it alone. Please seek help before you break.
Unfortunately in my experience it is the 'squeaky wheel' that gets that help - be that 'squeaky wheel'. It's not right and it shouldn't be that way but that's a different discussion. Sadly, you may have to knock on a lot of doors before you get that help - persevere.
If you need to vent, rant, ask for advice please feel you can do so on this group. Remember the only stupid question, is the one you don't ask. You are not alone and for better or worse there are a lot of people out there who have walked a similar path. We all may have had different journeys but there's no need to walk it alone.
My heart breaks for you, it really does. I can only echo what others have said, especially asking Headway and the Brain Charity for help. Not sure if the latter is everywhere - there's one in Liverpool, it's very good. I pray things will get better for you all xx
Definitely read all you can through Headway as that may help some of the understanding of what's happening. Try their local support group too.
Are there any charities local to you? Thinking of carer groups for you or your daughter. Found help by speaking to people in similar situations. It helps you feel less alone.
thank you everyone, its been an exhausting day.trying to an appointment with the gp literally mindboggling. with my surgery you have to ring at 8.30 to ask for an emergency appointment,after being on hold for 55 minutes i got to triage,explained situation. our usual gp who knows our situation is not in until wednesday. i decide to wait to see him rather than explain it all again,only to receive a text this afternoon that the appointment is cancelled and rescheduled for 31st.
i rang surgery,on hold 40 minutes to be told no availability until end of the month,in frustration i said "i cant believe this,im actually telling you that my daughter is thinking about taking her own life and you want me to wait until the end of the month"
ive been instructed to ring again in morning for an emergency appointment and if she worsens take her to a&e where mental health crisis team are.
ive informed the school,they were very good,said take the week to let things calm and let them know what happens with gp. shes due her gcse exams in the summer so i dont know what we are going to do about them.that can wait for another day.
thanks for all your kind messages and suggestions, i will try them all. im going to try hard to be the squeaky wheel for the sake of my family x
So sorry to read the real struggles you, your daughter and of course your husband are going through. Hopefully you have found some help and comfort from all your friends here.
My son was unable to return to our home due to the very complex medical needs he has following his brain injury. Fortunately he is in a marvellous rehabilitation unit very close by enabling me to visit at least 3 times a week and stay for around 4 or 5 hours with him. Having a very good insight into the enormous caring each and every day/night you must give your husband it is no wonder you are feeling so low and unhappy. I expect you put the brave face and smile on for your husband and daughter and anyone else who asks how you are doing - don’t we all!
Definitely become ‘the squeaky wheel’ - as many others will agree you have to do whatever it takes to make all of your lives liveable. An example of this is seeing my son this afternoon up in his comfy chair ( what a battle that was to get - squeaky wheel I definitely was) looking well, responding correctly with blinks to questions on flash cards and just enjoying watching the general hustle and bustle going on outside of his room.
I truly hope you are able to get the help and support you need very soon. Take care. Nanapal x
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