Hi, i never imagined that this is where life would take us as a family. A year ago, we were served notice on a house we were renting because the landlord wanted to cash in on the property. We had lived there for almost 12 years. We built alot of wonderful memories there and we were also blessed with 2 beautiful children during our time there. My partner and i emptied out the kids savings and between the two of us, we managed to come up with a deposit for a mortgage. The landlord wanted way more than what the property was worth so we had to find an alternative solution. I pushed almost 80 to 90 hours a week while my partner strategised and navigated us through the property buying arena and we did it. During this time, my partner and i put everything in storage and we stayed in about 8 different air bnb's during the 6 months whilst we waited for our new build. It was just me and her lifting everything into storage because we couldn't afford removal guys. Despite the numerous moving, it became a mini adventure for the kids. Eventually the day came when we were finally given the keys and we moved in. Two weeks after moving in, my partner had a bleed in her brain brought on by an AVM. It was the most challenging experience ive ever had. It started with a migraine and then followed by her going into a seizure and then she became unresponsive. The ambulance on the mobile unable to find our place. The kids screaming upstairs and me running up to tell them that everything was going to be okay. Running back to my partner and checking her condition to update the ambulance on the line. The vomit all over the floor and on my clothes from her being sick. The shallow breathing. All our memories, all our dreams just melted into this moment. I couldn't believe what was happening. 2 ambulances and a rapid response doctor came and they worked on her for hours.
She is now recovering on a stroke unit. The entire admission has been a nightmare but thats another story for another day. My partner is in her early 40's and she has recovered remarkably well. She can now mobilise on her own and her appetite has started to improve. The ward want her to go to a specialist brain injury unit but she wants to come home. Though she does not remember our new home and the air bnbs we stayed, she just wants to be back home with the kids and me. Its heartbreaking seeing her cry and plead to come home. At times she thinks im the one conspiring with the doctors to keep her in. The OT feel that the brain injury unit is the ideal way forward for her because it will give her the best chance of living a relatively normal life. On the other hand, we have no idea when there will be a place at this unit. All this while, my partner is descending into depression where she cries uncontrollably and i can feel her sadness. Everyone in her bay has been discharged. None of the patients are her age and she has noticed this. The OT highlighted that the community service would not provide my partner with the support she needs. I am so confused and heart-broken. I would love her to go to the brain injury unit but i also want her home with the kids. Im thinking of asking for her to be discharged into my care but i have no idea how i would care for her. Though there are significant improvements in her physicaland mental state, her personality changes by the hour. Each personality seems to come with its own memories and ideas. She forgets things and some of her memories are obscured and mixed up. Its really challenging. Im told this is normal and it will improve in time. Her sight was also affected by the bleed but this is slowly improving.
Is waiting for the brain injury worth it ?
Apologise for the long message. Just my way of venting i guess
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Mykel1
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Please Mykel listen to the doctors. Your partner needs specialist care and all the amenities of the unit. This desperation to return home is the classic response for anyone with a brain injury, but I fear it could be detrimental to her progress.
I had a Subarachnoid bleed 10 years ago, so your account of the chaos feels (from what family told me) all too familiar. The timeframe is important so it would be helpful to know how recently your lady had the bleed ?
Many people plead to go home, so instinctive is the need for familiarity, and seeing them so upset is heartbreaking. But returning home can be disastrous if it's too premature for their needs, causing them and their family panic and discomfort, not to mention lack of ongoing neuro care.
Speaking with the Headway team might be useful. By phoning the helpline you could get further support and advice. The number is freephone - 0808 800 2244.
Or, if not in UK ; email at - helpline@headway.org.uk
Brain injury is a complex issue needing highly specialist care and families' emotions are tested to the limit when making these types of decisions. I wish you strength at this time m'love... Cat x
Very Good Advice indeed cat. I too was the 'Longest' on my ward- mind you it was the 'Short Stay Ward' (the explanation is a bit Complicated but, boils down to, where my Team were Based.)
Do let her 'go' to the Specialist unit, try to Dissuade her from coming Home ..... At The Moment, that is! (Please DON'T give her the impression you don't Want Her Period).
Sorry but you will HAVE to Give this TIME, in 'spades'.
I’m very sorry your family is going through this, it takes me right back to the early times of our journey.
My husband was also in the same position,in total with hospital and the specialist stroke unit he was away from home for a year. I too,would say encourage your wife to go to the unit. Not only is there a whole team of people there who work with your wife everyday to improve,they can advise and help your family prepare for the future.
You really only see the benefit of this stage afterwards, when you look back. At the time, it’s distressing leaving your loved one somewhere especially when they may not be thinking rationally. But I would say my husband really calmed down a lot over his time in rehab.
He is not the same man personality wise, he never recovered mobility but we are trying as a family to rebuild our new normal and the time in rehab gave him the best chance,and for our family to come to terms with the new him.
I know it’s extremely hard, seems impossible but things will calm down and become not so scary but it really does take time and lots of it.
Hi there my wife had a brain haemorrhage in December 2019 and after 3 months in hospital she went to a Rehab Unit for brain injuries until June 2020 and the another for behavioural issues until November 2020. Because of lockdown I was unable to visit some some months and could look round the second Unit before she went there. The first Unit was brilliant but the second not. If I had been able to inspect beforehand she would not have gone there. Really the point I am making is visit the Unit before she goes there to reassure yourself that it is suitable and look at the facilities they offer. Hopefully you will be pleasantly surprised by what they actually do. If you are anywhere near St Neots the first Unit is called The Marbrook Centre
In addition at the first Unit she was seeing the visiting neurologist who sorted out her medication - having observed her behaviours. This would not have happened at home and medication is very important given the change in brain function.
My wife has limited mobility and does not make new memories but we muddle through ! apart from the normal stoke medication she also has antidepressants and anti psychotic tablets. They have really helped her mood and behaviour.
She needs more than you can give, and neither of you are really aware yet of what this all means. It is a long long marathon.
People with bi's are not very aware to not at all aware of what is going on for them.
Do be very reassuring, let her know that she needs some rehab and you need time to get the place ready for her - and that is true - you don't know what equipment she may or may not need at this point.
Let her know that is the option for her best and fastest recovery, and you and the children need her...
Basically all the reassuring things you can think of... tell her multiple times every time you see her because she may not remember. Leave cards or things she can see when you aren't there so she can see she not on her own.
Don't forget to ask about programs for yourself and then the children. there is lots of info on line, but that isn't the same as hearing others talk about how they are with supporting their dear ones going through it all.
Keep a journal if you haven't started already - write notes of what you noticed, keep track of what tests she had when and who you spoke to about her care, include phone numbers. You may need them later and they can be hard, if not impossible, to find, after the fact.
Writing down how she is every day will also help you see the progress she is making, even though she will have some backwards days some times. It will also come in handy when people are asking you what you've observed. You may also be able to spot patterns that may be based on things you don't notice at the time, say for example, the weather. And, say she's upset every Wednesday, then ask what is different in her routine on Tuesday or Wednesday - that kind of thing.
Your children also need your time and stability, with her getting good care and rehab in a unit, you also will be able to do better for them and not burn out, or not burn out as fast.
You've got a lot to juggle.
Of course you really want her to come home and of course she really wants to come home. That's normal. And, the docs are saying she needs specialist care and you just can't give that at home.
Have patience, stay strong, take one moment at a time...
Hi Mykel I was in a very similar situation 14 months ago with my hisband who sustained a Hypoxic Brain Injury as a result of a Cardiac Arrest.
I am a Nurse by background and knew I could take up to 6 months off work to support him. The Medical and Therapy Team felt it would be in his Best Interest to to go to a Brain Injury Unit, however there was a significant wait up to 12 weeks. There was however a Community Neuro Rehabilitation Team led by a Neuro Psychologist in our area who was able to support if he came home.
We had a best interest meeting and I managed to persuade the team it was in his Best Interest to come home, with the community team support and with myself delivering his rehab myself at home on a 1-1 basis.
He came home and I am not going to lie It was very hard work 24 hours round the clock. Not to forget the moods and behaviours and not having others to support. Family relations broke down as a result but we pushed on.
The community team came to visit him the week after discharge and his Psychologist felt he would still benefit from a inpatient bed in the brain injury unit so listed him for a bed (less wait time if admitted from community). 5 weeks later a bed became available and he was admitted. Bearing in mind he had already been at home for 6 weeks and I had already started all his brain injury strategies and made a good dtart on his rehab program.
Unfortunately the brain injury unit was not what was explained to us and I wouldn’t put my dog in there. My husband lasted 2 weeks and then I decided to bring him home again. There was no compassion or empathy, no attempts to reassure the service users, he was left to rot with minimal interaction. He was receiving more rehab from his community team than the inpatient team. He was so distressed, it was harder to see him in there than it was in ITU in his coma following his cardiac arrest.
So he came home again it was far from easy, it was very challenging but pushed forward. My husband is as equally determined to get better as I am to get him better. Just prior to my 6 months off work came to an end, I contacted Social Services to gain support and they pay for 35 hours support per week whilst I am in work and I employ the support workers directly. They continue with his Rehab in my absence.
My husband has made significant improvements and continues to do so. His Neuro Psychologist admitted very recently that he has progressed much further that she expected him to too and well ahead of where she would expect him to be now even if he went into the brain injury unit.
Before making any decisions I would suggest that you do your research, particularly into the brain injury unit that the hospital propose your wife goes to. Get feedback from past and current service users and not the ones the brain injury unit suggest. Go and visit the unit. Research what community services are available to you and ask why they are not able to support? If you decide to bring her home, make sure you are ready for the worse, ready for the biggest challenge of your life mentally and physically. Join support groups on social media and study headways website.
I hope that helps, please dont let it put you off making any decisions, you know your wife best and I fully advocate there is no better person to make such decisions than yourself. Just please do your research first. If you have any questions let me know.
I am glad you had the skills and background to support your husband. Clearly it was a big thing for you to support him at home.
Having peole who are really supportive is really important.
I am conscious that my Sub Arachnoid Haemorrhage is relatively mild, but it still keeps changing and as I recover, I become aware of new things to check out. I’ve not had much formal support. My informal support has mainly been my wife and a couple of medics in my extended family.
I used to work for Headway a few years ago and I am very aware how varied ABI’s can be.
I would encourage Mykel to talk to specialists - both medical and in Headway. It can be a very tough joirney and both you and your wife will really benefit from good support
I honestly cannot start to express my gratitude to all the replies. Thank you so much. I am deeply appreciative of this. This is the first time i have reached out and received actual 'human responses '. The doctors never have time and are constantly changing around. The permanent nurses on the ward are so few and clearly overwhelmed that they never have much time to update me on progress. The agency nurses are there to get their pay cheque and will tell me 'ive never worked here but ill get the doctor to speak to you'.
From an emotional perspective, i would love her to come home but now having digested everything, i can see how complicated this will become. Im balancing two jobs at the moment to keep ontop of the finances. Plus with 2 kids and the upkeep of a house, it will be challenging without the right support. I wish there was some sort of instruction manual about these things. Never in a million years would i have ever seen this happening to us. Navigating through these complex emotions by myself is quite a challenge. I am really greatful to have come across this site.
I will have a look at the placement once they tell me where it will be. I just hope she sticks with it.
I see that your system over there is kinda like Canada. I’ve been trying for 2 weeks to get the doctor to call me for an update on my Mom since her hospital is a 2.5 drive away. The nurses are overworked or disinterested. The orderlies down right abusive at times. I finally visited my Mom on the weekend to see she might have had another stroke in her eye. I left a note for the doctor to call. She didn’t. The nurse told me to leave a another message and keep calling all day like 10x. Apparently my message got through and they got my my Mom medication yesterday. It all will feel like chaos at times or overwhelming but please keep on fighting for the right care.
My best advice would be to stay organized in what treatments your partner is receiving and since you have 2 jobs & kiddos i assume you won’t have a lot of free time. 😉 Get a binder with those plastic sleeves that you can put documentation regarding your partner’s care in. Then also keep a list of all the professionals your partner will be seeing. There should be a large team when comes to brain injury. If you aren’t working with paper then on your computer or phone make a folders with all this info as when you get stressed/upset/angry/overwhelmed (as all of us do in this situation) and might forget some things. I also bought a calendar sheet notepad for my Mom to write down treatments, financial things I need to do for her etc. Then I can also note her progress on this calendar (like speech getting better, improvements in walking) and look back at progress. This will also help your partner see how much progress is made when they can’t remember.
Also photos of my own progress over the years helped too.
Hi Mykel1 , YES, YES,YES!!! In my opinion, do everything you can to go to the specialist brain injury rehab unit. You have a window of time to make the most significant recovery ( although it continues slowly for years)
All I can say is my husband experience. His brain haemorrhage happened in the early stages similar to your experience. We were travelling in Spain. We lived in France at the time. When we returned to France some weeks later he was still sedated, paralysed ( bedbound) incontinent.
The rehab centre was hard but he was keen to go. After 3 months he went from wheelchair bound, pushing his wheelchair backwards with his foot to the dining room 2 floors down ( he had to work the lift) I was nt allowed to help or stay with him in dining room. Much went on the floor. When I first saw him proudly walking to visitors room upright with a zimmer for the first time I cried.
His schedule was hard, Mon Fri he had a timetable , different gyms, activities,pool and he had to sort it out himself. I could only visit after 5 pm for an hour before supper and on weekends.
At first I though they were hard, cruel, he could nt even put his T shirt on, put his arms in all the wrong holes . I was not allowed to help.
Then it dawned how amazing they were , so patient , kind, crying with me when he walked for the first time.
Obviously no experience of UK rehab but grab it when you can. The staff truly worked miracles, including his special interests In the therapy like playing / passing a rugby ball.
He had to pass a medical examination by the Rehab Consultant to be accepted. My husband wished him Bonjour and his answer was “ it is indeed a good day for you Monsieur D…… You have been accepted to my hospital. You have won the lottery!
Only much later did we both realise how right he was…..a very different path for him if he had nt been accepted.
please listen to the doctors .. Your wife needs hands on support and you and your little ones can see her as much as possible … this must be an heart breaking situation for all of you but it won’t last forever and with the best help your wife gets now will improve the future .. My injuries are very different from your wife but I know how difficult I was for my husband to deal with .. take all the help you can get and ask for more if you need it .. you will get some great advice from this group their is a vast knowledge among its memories … it helped me and I hope it will help you as well .take care sue
Oh Mykel1, how I feel for you both in this horrendous experience.
It’s very difficult for you watching your partner and her ever-changing emotions too but I personally feel that, if she could be persuaded to go into the Brain Injury Unit, it’s there that she would receive the expert therapy and counselling she’ll so obviously need. I went into one and will always all the help the therapists gave me, especially with my speech which was the most affected. I can see, and hear how much as people can understand and respond positively.
I think that nursing your partner at home would be extremely difficult for you all as your children will be affected but not being able to understand or cope with the situation. You don’t give their ages, but this is very bewildering and heartbreaking for them as they see you trying to deal with it all. What do you feel about counselling to help as you would be able to ‘vent’, or talk about it all. I had a brain injury 12 years ago but still value the completely non-judgmental and unbiased benefits of this.
Do give my love and prayers to your partner , and, of course, yourself and the children.
It’s quite ok to be angry that this has happened to ‘ruin’ everything for you-I still get angry with frustrations I’m having to handle, and it’s worse when I become overtired which is a thing I have to make sure to avoid and get the extra mental rest in order for the brain to re-charge-I know when I’m not doing but these are the sort of things which professionally train therapists would help you with.
Talking to Headway Helpline Counsellors is especially useful and I can see that you already know of Headway and its online Healthunlocked facility where we, and our loved ones can talk to others in similar situations of brain injury and its effects.
I’m sure you’ll get some support through this-and please don’t feel you need to apologise for ‘letting it all out’. It’s very necessary and here we’re to listen.
I’m sorry to hear your family is going through this. ♥️
As everyone has their own opinion it’s something you will have to decide on what is right for your family in the long-term. Right now it’s early on so a hospital would be more appropriate if it’s a good hospital with brain specific care. A single experienced expert can change the path of recovery. I’m hoping she gets someone good as brain injury recovery is slow and the path is long and totally different for everyone.
My Mom was in the hospital also begging to come home immediately after her stroke at the end of August. Now that’s been a few weeks she realizes she in need of help and needs a hospital. Your partner may or may not come to terms with that realization soon too.
I’ve learned a lot over 6 years of trying to heal myself from brain injury and it’s daily work. It slow and frustrating for both me and my fiancé. Having a family with children will make your path a little harder as they will also be affected by everything.
If your partner can get good specialized brain care from professionals in hospital in my opinion that is better than at home in the short-term. Once there progress from the short-term treatment then you will have a better idea on what ‘coming home’ could eventually look like. The brain is miraculously changing all the time and healing itself with time. ❤️🩹
Please take care of yourself and remember that you are going to do the best you can for your partner with whatever decision you make. ♥️
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