Funding has been approved and bed ready for my partner to move to the Specialist brain injury unit but ........... Nature, God, The Matrix or whoever governs this sadistic theme park called reality just had to throw in a COVID positive test result. Now she's not only staying in hospital for longer but now having to isolate in a side room on a different ward. How many more levels of isolation can one endure. She's already isolated from her family, her work for almost 5 months, but the governors of reality thought, oh no, thats just not enough, lets turn things up shall we. Grab some popcorn and lets see how this mere mortal will solve this one hey lol. It feels like im in check mate constantly. She cant remember the house we recently bought and thinks i forged her signature on the mortgage. She thinks im trying to keep the kids away from her and i orchastrated all this and what happened to her. A couple of days ago during a visit she shouted at me in front of the kids and told me we were never in a relationship and she believes i was living with another woman. Ive never been with anyone else and its only ever been me and her. Short term memory comes and goes but its like talking to differant people who have different sets of memories. Theres also the issue that she might refuse to go to this unit as she keeps being moved from one place to another. It took some convincing yesterday to get her to agree to go but then she tested positive. This feels like a video game where i think to myself, im playing at God level and im not doing too badly at this boss level battle. Only for someone to tap me over the shoulders and say 'mate, youre still playing novice level bro and that boss battle is just a level 4 out of 100, best buckle up and enjoy this theme park because its gonna be one hell of a ride'. Its times like this i wish the laws of physics could apply and a counter weight introduced where things could balance out or at least ease off and things kinda went our way.
I do truly apoligise for this rant. I am absolutely grateful that we have her in this world. Im grateful of how much of an improvement she has made. Im grateful for being able to experience these emotions and be part of such a beautiful world. I am thankful for so many countless things (the Gods aren't entirely that sadistic but they do have an awkward sense of humour). I am just trying to make sense of this. Why does stuff like this even happen in the first place. Its just frustrating amd its just reality i guess and we just have to keep going. I wish there was a service where people to go home and get short term support whilst waiting for the specialist unit.
Hope is like the sun. If you only believe in it when you can see it, you’ll never make it through the night.
Written by
Mykel1
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I really feel for your wife, for you and your family. The frustrations, the roller coaster of emotions from one day to the next I sympathise with you. Take one day at a time that’s all you can really do.
My experience is still ongoing. My husband had a significant brain bleed and fell down the stairs with multiple fractures. Seven weeks in a hospital in bath, four weeks in Glastonbury home to encourage him to eat and drink. Now eight weeks in Yeovil Hospital. I too have been shouted and screamed at to take him home, accused of having someone else. Verbally abused, accused of keeping him away from his grandchildren etc. so so hard to carry on but we have to on a day to day basis. The brain is such a magnificent tool until things go wrong. I hope your wife continues to improve for to have her home with you all.
Your very welcome. All our friends say look after number one, so take care of yourself and your children too it must be so scary for them. I’ve found Headline invaluable for any unanswered questions. I wrote a daily journal from day one, it really helped me come to terms what had happened, also to love ok back and see how big strides are made. Take care and yes big hugs all round.
It certainly is not anything approaching easy , especially when her poor brain is struggling so much. It's kind of like someone is flipping the tv stations on her, between real life, what she read in a book, something she saw on tv, basically whatever is in there. Jello cubes of memory not quite lined up.
You described things really well.
You will get through this.
Remember to look after you.
Maybe keep a journal?...somewhere to help you process .. and vent here any time...
It sucks she tested positive for Covid, I hope she gets over it quickly, and gets settled.
Switching different channels is exactly what it feels like. I've come to a point where I can almost feel when that subtle change happens. It's like walking through a very thin veil or the transition between warm and hot in the shower. It's like the density in the room changes and the air feels heavier. A void opens up and all the colour in the room is instantaneously drained. Even background noises drown down. It's at this point I know im now in the bad lands, the dark territory ive come to call it. Sometimes they come as emotional fists hammering down on me. Sometimes it feels like emotional needles sewing their way through me unrepentantly. At times I feel like I'm being tested, like a subtle breeze enveloping the contours of my body, looking for weaknesses and gently draining me as if by osmosis. Kind of like that eye in the Lord of the rings, just constantly watching me is how it sometimes feels when she gets into this state. Even when she's sat talking with the kids and engrosed in what they are talking about, the slightest twitch of my finger is picked up like a fish's bite on a hook or the wing of a fly on a spiders web. The conversation stops and I'm asked 'why did your finger move like that, are you taking pictures again as evidence that I'm in hospital, I can't believe you'd do this to me, the kids are never going to forgive you' and then the tears and then the accusations. All this while I can feel this eye watching me quietly like a silent spectator as if it's feeding off my responses. As if it needs this emotional debree in order for it to continue to exist. I've learnt to breathe. Deep breaths and being soft spoken. The punches roll in and I breathe, the needles prick but I continue to breathe nice, steady and easy. Just breathe. I sit in the car emotionally drained, again I breathe. It'll be okay, we can do this Myke, just breathe.
as a survivor of a severe brain injury, i can only say to take one day at a time and to look after yourself. That waway you can stastay strong for her. Just focus on the day to day things and everything else can wait. CCome on here whewhenwhenever ypu want and vent as thathatthats what this forum is here for. Its an emotional rollarcoaster of emotions when going through this houney and things are constantly changing. Has she got someone to talk things with? Someone who can help her to make sense of everything?
Sending big hugs your way as this is a time when you really need them aand to know that you're not alone
I'm glad I have been able to help in some way. Suffering from a TBI is just as difficult and challenging for the survivors family and their life is severley impacted as well.
It can get better but it won't be an overnight thing, it will take anything from a year to severals years. I'm sorry to say it's not a short journey but a long one and that's the reality of it but it will take as long as it needs to do and you will all get there.
It's incredibly hard to watch your loved one change and try to deal with what has happened. You're both going through the same emotional journey but each of you have difficult challenges but neither of you are alone and knowing that can make a huge difference. .
I can totally symphathise my husband was in isolation as he was carrying C diff. Then tested positive and even though he was in a side room still moved him to covid ward where the care was appalling! He had fallen down stairs had brain surgery and had a large chunk of skull removed and was waiting for his cranio plasti. He went back to original ward and went to rehab in the hospital after 6 months of being on his own. This was the turning point and 9 months in he's doing great. Walking all over again and only last week moved hospitals to a specialist neuro rehab which he has taken too.
Life is awful at times and at times i didnt think i could cope. The stress of it all was unbareable but i feel we are coming out the other end. What I'm saying is is not easy but it willl become easier there is a light at the end. I thought i would never see it but its starting to glisten a little now.
I felt my eyes swell up when i read your response. My heart goes out to you and your husband. I wish the best for you and your family. You are right, sometimes its darkest before dawn.
Mykel, as you've said yourself, your wife has progressed really well physically, but the cognitive side of recovery can be pretty haphazard, often with bizarre features such as hallucinations, nonsensical notions and failure to recognize loved ones.
After a brain injury the brain struggles to make sense of the unfamiliar surroundings, faces, smells and sounds of a hospital. The 'awakening' is often littered with a mass of random 'jigsaw' pieces with no hint of the complete picture, especially when the haemorrhage itself prevented the brain from recording events.
I (apparently) routinely asked for stepladders to clean the 'filthy' ceiling in ICU despite my being pinned to the bed with drips/tubes and the ward being pristine. And my daughter Helen was distressed at my repeatedly greeting her as 'Debbie' (a neighbour) and telling her how kind she was to visit. I had bandaged hands to slow the process of pulling out tubes, and fell out of bed twice, obviously believing I could walk.
Covid has obviously added more discomfort & anxiety for your lady and I hope she will come through the virus and isolation unscathed. But what I see is a textbook brain injury, with shock and dreadful heartache for you, your wife and children, but with every chance of healthier, happier days ahead.
You'll need great emotional strength to endure this transfer phase and the wait for your wife's brain to place you back into your rightful slot. We survivors have a rough time ........but not nearly so rough as our families.
Wishing the best outcome for you all....Love & hugs, Cat x
Hi Cat. Whenever i read your responses, i genuinely feel rejuvenated with hope. Not that i lost hope in the first place but more a renewed sense of come what may, its okay. Im taken by how far you've come. My partner works as a senior scientist. Shes the brains of our family. The one who just knows what to do. She just points in the direction we are supposed to go and i dig the path that gets us there. Yesterday when i went to visit her, she had been trying to figure out why the plug she was holding wasn't plugging into the towel she had laid on the bed. My heart sank as i watched her struggle with this plug. She would occasionally raise her head and say, why isnt this going in. Just like you, she was on machines and had to have mittens because she kept pulling out the NG feed at one stage. She had also figured out how to remove the cannula from her arm. She has come a really long way and i can see the subtitle and clear improvements. I guess as humans we have an expectation of how things should go. Maybe its about letting go and allowing nature go where its meant to and allowing time to heal and recover. I guess if she had not gone into isolation, i would never have written this post and i would never have read any of these amazing and loving responses. I guess i probably wouldn't have appreciated this time as im doing right now.
Thank you and i hope you have a beautiful day. I dont know which part of the world youre in but down here, its a lovely autumn day where the colours of nature are complemented by such a beautiful autumn sky.
Your sentiment - "Maybe its about letting go and allowing nature go where it's meant to and allowing time to heal and recover" shows real acceptance and hope ; you express yourself so well !
The sun's shining here too (NW) so, yes, a lovely day. I hope there are many such as this ahead for you, your wife and your children... Do stay in touch. Xx
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