The following account is from the perspective of a carer and a partner. Please do not see this as being one sided because I cannot start to imagine what she is going through but I also feel I am part of this journey and just needed to speak my mind. My partner and I have been through a lot. From being serviced notice in April 2021, to staying in several Airbnb’s thereafter with our two kids. We pulled ourselves together and managed to purchase a house and moved in last year in May. Two weeks upon moving in, my partner suffered a major bleed in her brain following a ruptured AVM. She was at deaths doors, and it was a very challenging time. I was already working two jobs at the time because we had to raise money for the mortgage deposit and other bits and bobs. I had planned on scaling down the second job but I had to go full throttle when she got ill as I had no financial back up. I was balancing two almost full-time jobs, running a household, two kids, everything was still in boxes and in storage, partner in hospital about 50 miles away and I was seeing her daily. It was a nightmare. I wasn’t able to take sick from work because that would have prevented me from working my second job. I needed the second job because I had no access to my partners accounts. I am quite a solitary person by nature, and we are a quiet and close family. I have no friends or family. That does not really bother me because I am quite a minimalist and I tend to try and stand on my two feet and rely on myself where I can.
During this entire process I stood by my partners side until she regained consciousness. When she started coming to, i was called everything under the sun as she accused me of poisoning here and having brought about the bleed in her brain. I was accused of sleeping with other women and that one of the women had moved into the house with me. Despite my reassurance and pleading, she would not take anything I said onboard. She shouted at me on the ward and kicked me out of the ward more times than I can count but I came back the next day. During this time, I made sure her employer was aware of her condition and ensured that she still had a job and was being paid. She stopped eating at one point and I had to bringing in food three times a day whilst balancing these two jobs and being emotionally available for the kids. Again, I am not crying victim nor am I angling for a medal, I am just trying to put into perspective the human side of my experiences. I feel I have been pulled to such physical and emotional extremes that are beyond anything I have ever experienced yet I kept coming back the next day.
She eventually stopped saying the things she was saying about me, but it is difficult to tell whether she has actually stopped thinking them. She was in hospital for about 8 months and was discharged about a month ago. Since she has been home, she has opted to sleep in a different room. When I tried hugging her, she moves away. On the two occasions where she has allowed me to hug her, she won’t lift a finger to hug me back. There is no intimacy whatsoever, no smiles towards, nothing. When I speak, its as though she can smell Sulphur in the air because she just gets so annoyed. Even the kids have picked up on this. She has just become so distant. The kids have also picked up on how emotionally distant she can be at times. A couple of weeks ago, out of the blue, she just walked into the bedroom and pulled out all my clothes from the wardrobe and told me to move out. This really rattled the kids. The next day she said she was unable to recall this. She did confide in my son and told him that she no longer had feelings for me and wants to start over on her own. She has not expressed this since, but she keeps to herself and does not talk to me about what she is thinking. It is quite interesting because when I talk to her, she is clearly upset at me and seems angry. When the kids start talking to her, her voice is softer and warner to them and she makes the effort to speak to them. I know I am not a child and do not expect the same level of attention but from a humanistic point of view, a smile or a how you doing would make my day.
I have stuck with her and would be willing to stick with her if she could just show me some form of compassion or at least just to say something like, ‘I’m still with you, I just need time’. I would be happy with that, and I would commit the rest of my life by her side. Even when she gave me evil eyes when I walk into the room, as long as I knew there was still something there, I would never leave her side. As things stand, I am now questioning whether this is now the rest of my life, living with someone who secretly resents me for no reason. For the record, I have never cheated, and I was not sleeping with anyone, and I did not have anyone living in the house whilst she was in hospital and no, I did not poison her. It does leave me asking myself what’s the point if she wont even make the slightest of efforts. There is absolutely no positive emotions emitting from her towards me. I do honestly miss holding her, experiencing a passionate kiss from out of the blue, listening to her breathing whilst she is asleep. What got me through this difficult time was acceptance and knowing I have these two little lives and a partner that need me. I accepted that she is not going to be the same person she was. Due to my experiences, I no longer have expectations, I just appreciate what I have. It is difficult however when you feel like you are constantly being emotionally punched and drained. Not sure if this will improve in time or if this is it. I’m not someone who gets low in mood or anything like that. I am usually quite optimistic, easy going and try to see all sides of a story. This however is quite a challenge. I find myself listening to Psalms or listening to Buddhist audiobooks. I find that these give me some form of comfort and some sort of buzz or enthusiasm that i cant really explain. I even ask myself what it would be like going to church or a Buddhist temple. What sort of people will i meet. Would that give me some sort of solace. I think I'm trying to find or connect to something bigger than me. It's not so much about finding meaning but more about finding a connection. Time is the only factor that's against time. Now, just finished work and onto the dishes and the laundry and catch up on some ironing 😊
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Mykel1
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hi Mykel1. I am so sorry for your desperate situation and cannot imagine what you are going through. You sound an incredible person. I’m afraid I don’t have any words of wisdom but there are plenty of people on this forum who will have and will be only too happy to help. Try and look after yourself as well, it’s very important.
Edit: I have just looked back at your previous posts and seen that you have had lots of support previously so I apologise for jumping in.
You're all going through a lot, and I can't imagine what it must be like ... and it sure sounds like you are exhausted in every way possible.
Brain injuries are really odd things, they impact everyone differently. Part of it can be, especially in the beginning, the signals going around in there, and to various body parts, just aren't the way they were before. They get lost, sent to the wrong place, misinterpreted ...For me, for one example, I couldn't tell if something was hot or cold for the longest time, and I really had to think "what is this? is this a different temperature? is this wet? is it water? is it hot, is it cold? what is this?"
This may be part of what is going on for your wife, her perceptions of so many things may be different. There will be things she isn't aware of yet and all sorts going on, or not going on, in there.
It's terribly, terribly, unfair.
If you can reach out to Headway and ask if they have any support for you, that may help - as in speaking with others going through similar things, family counselling - I don't know what may be available. (Like, "I'm supposed to fit another thing in?"... the terribly terribly unfair part again...)
It's good her Mum instincts aren't gone where the children are concerned, they really wouldn't be able to get it at all, and would take it personally - that's kind of how children are.
It's also very likely your wife is suffering from over stimulation - just more going on than her brain can handle. So, by the time you're home in between jobs it's just that one more thing for her to deal with - especially if you are looking for some reassurance - totally normal on your part, and she also may just be able to manage it - yet.
A lot of healing goes on in the first 3 or 4 years especially, so things really are still in the early days for her.... though it seems an eternity.
I saw a video the other day which is kind of unrelated but may help give you an idea of what is going on for her. So, let's say your task for the day is eating cereal and you are given a lovely spoon to eat it with - most people have a lovely spoon. Your wife gets cereal to eat for the day - sometimes she gets handed a straw. Well, she might be able to slurp up the milk part, or she may have to relearn how to slurp up the milk part, but she's not going to be able to get the cereal part with the straw. Maybe another day, she gets handed chop sticks. If she gets really good with them, she might be able to pick up a bit of cereal. It'll likely take her all day and she's going to be pretty hungry and frustrated by then. Maybe another day she gets the slotted spaghetti spoon to use. The milk runs through, it's too big to get in her mouth, the cereal mostly slides through the holes. On no day does she get just a lovely, regular spoon. She never knows what kind of a tool she will get on the day. She likely may not even be aware the tool has a problem and the tool keeps changing - she may not even be aware she is really frustrated by it - but you will see it.
It's a tough one to go through because you really have no idea what is going on in there, and she may not really be aware either, for the most part.
That's why, if you can talk to Headway it would be a really good idea. Ask them, for example, about a neuropsychiatrist referral - one that can do family counselling and also see your wife on her own.
And please, don't misunderstand the psychiatry part - historically medicine puts everything that isn't broken or bleeding that it doesn't quite understand into the psychiatry category. A neuro psych is trained as a psychiatrist and also has a brain specialty. This makes them ideally placed to help with medication, for example, and they can also help everyone understand the complicated situation you are all in.
It might be something like she can't process the physical expression of attachment right now, for reasons that have nothing to do with you - and she gets irritated, and doesn't realize yet she is irritated or that it really isn't you at all. (Just about everyone i have met was really irritable at least for the first while - it seems to come with ... and certain things or situation triggering it more than others - not any thing personal, though it can seem that way.)
Do reach out for professional help - you are allowed to for you, your daughters, and your wife, and your family.
Hi MykelI am so sorry for the hard time you are both going through.
One thing that helps me is to remind myself, this is not permanent, in that things can and do change and may hopefully improve ..
You must both be grieving for the person that she was, which is so sad...And people are inclined to hurt and take things out on the one they love (Maybe because they are the only ones who won't walk away). I used to often see this when I worked in a hospital.
Finally yes do try a church or something, I went to a service at Christmas (for the first time since husbands stroke) I emailed the lady minister after to thank her. She got back to me and offered to visit my husband and myself.. you may need to try different churches, till you find a good 'fit'.
So sorry Mykel. Your lady is in a surreal, confusing place. She can't begin to understand the pressure you are under and subconsciously wants you, her most trusted person, to fix her. It's like a child, inconsolable and angry with a parent who can't mend their favourite toy ; your wife is lashing out in desperation. Brain injury can cause really negative and hurtful behaviour when we lose touch with our lifelong identity. Logic, empathy and fairness are emotions which often take time to for us to rediscover and relearn.
I hope you have people who can step in occasionally and afford you some respite ? Finding breaks amidst your frenetic work and care duties to be with folk who appreciate you and lift your spirits, if only for short periods, can be empowering.
Each comeback from brain trauma is unique. Mine reached its equilibrium at around the 3 year point but there has been significant cognitive & emotional progress since that point, 8 years ago. My family have moved on from fearing I'd be forever 'strange' and lost to them in the early days to seeing me as superwoman-(ish) and very much in the here & now.
Hello Mykel, I'm sorry to read about how things are since your wife's BI. It's very sad for all of you.I only had a mild TBI, but many of us, myself included, seem to experience bouts of anger as a result of a BI whether from frustration in the unwanted new selves we find ourselves to be, or apparently as a weird byproduct of the injury. I live alone, so in someways that has saved me from taking this out on anyone else, but for me, luckily anger hasn't been particularly huge - I think I read that left side damage was more likely to generate anger, and mine was right sided. But my emotions were and still are quite volatile and harder to manage. I tell myself that I also experience happiness and joy more vividly now, as well as the darker emotions of grief and anger.
Looking after anyone when they are ill is hard, and you have a lot of practical considerations with the children to cope with as well. For us as well as our carers, it's often the first time we have experienced any prolonged period of ill health - so it's a huge life shock.
Thing is, we all seem to get some level of improvement over time. So try and hang on in there for your wife and children. Don't forget the Headway helpline ( office hours 0808 800 2244) is there for you, as well as your wife, and there may also be a local Headway group where you might get support and meet people in a similar position - so not feel quite so alone. You can talk to the Samaritans about anything also 24 /7 - on 116 123
If you have any time, there's a good book that's written as a personal diary of a someone (Mardula) who had a stroke , with an excellent commentary by her neuropsychologist (Vaughan) who also explains in the second section why people with BI behave in certain ways, and how their families can help. It's called 'Mindfulness and Stroke' by Jody Mardula and Caroline Vaughan. I ordered it from my local library rather than buying it.
By all means try your local church, and while they do vary, what you are likely to find is a community that welcomes people as they are, and feels that loving the people you meet day to day is important. They often have people that are keen to support others in whatever situation they find themselves in. My faith and my new friends in church have very much helped me to cope with this huge change in my life post BI.
Hoping you continue to have the strength and love to support your family - that it sounds like you have done so well till now - and that you are able to find more support to help you cope in this very difficult time.
Thank you all for your reassuring comments. At the moment, my partner no longer acknowledges us as being in a relationship. She's resorted to sleeping in a separate room and does not want me to be involved in any of her hospital appointments and reviews. I've told her that I will still be here for her. I can see her struggle with things such as reading and walking and she often forgets things or gets muddled but I'm just there in the background placing the tea bag in her cup and offering to pour the water for her whilst telling her I was just about to make myself a cupper. Walking beside her and putting my hand in her arm to support her and telling her that its quite slippery and some support might be helpful. Her team are aware of what's happening and will hopefully get her a social worker. I've told myself that I'll always be here for her no matter the circumstance.
Almost a month since your previous post Mykel. There may still be discord between you but I hope glimpses of tolerance and kindness aren't too far off.
Take care of yourself & remember we're here should you need to offload. You're doing amazingly well.... x
As I write this, I’m looking outside my window. My balcony overlooks an open field of land with houses on the opposite side. From this view, I have seen countless sunsets with an unbelievable cascade of colors that makes the sky come to life like a mosaic tapestry. Swirls of blues, oranges and pink all merged into a symphony that’s transcendent and hypnotic. The houses in the foreground melting into the majestic skyline making them look superimposed. I turn my thoughts inwards and I recall that my partner had been in hospital for 8 months. She was literally at deaths door according to the surgeon but by the hands of fate, the Gods, the matrix or whatever entities that shape our reality, she is here now with us. An expression of life itself existing and forming its own memories and guiding its own recovery. Now that is a miracle. I remember my partner telling me that we were no longer together. The words were like a butchers knife craftly wielded by a surgeon as they carved their way into me. I felt like I was stood in a desert with the landscape rapidly expanding and moving further away from me. It felt like I was looking up to the night sky and the stars were being pushed further and further away from me. Beneath me it was as though the ground had opened up and I was floating on top of a dark void. Inside the void I could make out tentacles writhing and swirling but never reaching the surface. Tentacles of doubt, shame, despair fear and loneliness. It felt like I could hear faint whispers coming from the void, ‘we always knew you would amount to nothing’, ‘she doesn’t want you, nobody will want you’, ‘why cant you be more like your cousins, they are so clever’, ‘so Mike here thinks he is going to be a scientist when he grows up, well class, I have a better chance of going to moon’, ‘you’re on your own here boy’. I remember being back in the room with her as she turned on her bed to face the other way. The room was silent with streaks of light piercing though the curtains. I could make out dust particles floating around in the room as they passed the slits of light. I asked myself what emotions she infused into her words as they took form in her head. How did she assemble those words into sentences. How those words were pushed from her lips and carried into the air to eventually hit my eardrum and become decoded in my brain. How I felt when that emotion she had infused hit me like a ton of bricks. I remember standing there in absolute stillness, the moment between heart beats, the silence between thoughts, the gap between then and now. I told her that I would always be here for her and will always look out for her no matter the circumstances. It’s moments like this and experiences like this that make us realize that the world is much bigger than us. They say fear and doubt can sometimes drive faith and courage. They say its those that have been broken and forged from the lava that make the greatest leaders. I don’t really know much about bravery or being a leader, all I know is that life is a sacred force that has been gifted to us beings. The life force that is in her is the same one that I share with everything around me. It’s the same life force that’s in the trees, the flowers, the dog walker and his dog. My partner is just an expression of me as I am an expression of her, and I must do what I can to preserve that and make sure it reaches its potential.
Thank you for all your amazing comments and support. I do apologize for getting lost in my words again. They take a life of their own sometimes and I just have to allow them to breathe from time to time.
Amazing words Mykel, and thank you for sharing them,l. I believe that nothing is beyond the power of the one that creates the beauty that we can see around us in creation, but sometimes our prayers aren't always answered in the way we expect. I think Cat said above that your wife is in a really confusing place right now, but things can and do change, and your wife will very much need you while she navigates through what has happened to her.
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