Just needed a mini rant (I'm having a few of these lately). What God is working on volume in speech of its not intelligible.
My husband's speech was better a few months ago even just after he came out of HDU and now it's taken a bit of a dip. When he speaks to us on Skype his mouth barely moves and we can understand so little. But when a staff member walks in and asks him a question and he answers it's a lot better.
Ugh I'm just frustrated. For the 1st time I felt impatient with him because I know he can speak clearer. I was with a family friend and he said hi etc as he's done before. But even she agreed that his speech seems worse rather than better 😔😔😔. Again, just having a rant. Such an odd process not being involved😐
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ored13
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Hi Ored. Your man's brain is coping with massive re-learning challenges after the initial trauma and inaction, and throughout the past 4 months he must have worked SO hard to be where he is today.
And whilst he's using intense willpower and focus for every new challenge, other abilities might be temporarily left aside. A novice juggler starts with a minimum of items and slowly adds more as their confidence builds with practice. But for your husband it's not only a matter of confidence ; his mental and physical reserves have been depleted and need re-building with rehab & perseverance.
So rehab might look like one step forwards and a few steps back for some time to come as exhaustion is mitigated by essential respite and quiet-time. It's one hell of a long process, but looks like he's made a great start !
Thanks Cat. I could kick myself for having that blip... thought gh I know it will be the 1st of many. It's probably going to be quite important for me and for us as a couple that I read a lot of books of 1st hand accounts from both people who have had a brain injury as well as family. Just to pull thinks into perspective on those days when I or he or both of us just want to throw things. And maybe some days we should just throw things because nothing is perfect and we can only contol what we can control on not one centimeter more. Your take on things appreciated as per norm.❤️
Ored, you're allowed blips with knobs on ! It's a whole new and strange learning process for you, and for your man .....with no instruction booklet.
It's a tough challenge so cut yourself some slack and learn from blips rather than 'kicking' yourself ! It'll get easier as access improves and you can re-engage with your man face to face. Keep us informed of developments ; we're always here... x
The access thing is definitely going to help I think. The 26th is not far off. That's our golden ticket date. However we have heard nothing from the ward about it. Unsurprisingly so as they neglected yup inform us formally that they were moving the ward to a different building and timings for it... Still annoyed about that.
It's heartbreaking. My pal saw his mum for the first time in months this week. She's in a care home 70miles away and he was allowed 30mins, talking via a microphone through a glass partition.
So Ored ....just 11 days before you see your man face to face ! Take some time to start being kinder to yourself in the meantime... xx
With discharge date recently mentioned, he sounds hes managing well with patience, the speech could be his way of expressing and possibly just feeling deflated still doing video calls and just wants to be home. Luckily you have seen his speech is very good so progress still maintained x
You know N_B I felt like a bit of an a#£@ for feeling that way. I have no idea what a day actually looks or feels like to him. He has, as a general rule always tried his best to hide his pain and discomfort from me. Esspecially over the past few years when it has been chronic. He could always talk to my adopted mum in the UK because she has awful fybro and poly myalgia as well as his older sister. But he would never share with me. Maybe because he felt he needs to be the man of the house and breadwinner or whatever. I dunno. I think I have grown up in the "just get on with it or lose out" school of thought. If you don't have a job you starve and live on the streets end of where I'm from. So I tend to hustle and shake things off. But there are many many things that we can't shake out off in the world of brain injury, I'm learning. This has stopped me in my tracks. For the 1st time I have had to accept that we will live off of benefits as our main source of income for now. That this process will run ME and I don't get to be in charge. And the sooner I accept that the sooner I will be able to be more understanding. I think the toughest thing for me is not knowing what he's like aside from being a face on a screen. It's a very very debilitating and abstract way of understanding what he's going through. And also what I will have to embrace as far as changes go when he comes home.
Honestly with all the psychological and immense emotions you've been through you can feel angry at times its ok, it's totally normal., its part of this journey. X
This journey scares me. But also it is helping me learn or understand what is actually important and to put things into perspective. Titles, career etc. Just not a thing for me now.
Hi there in my honest opinion I think hospital can make you very child like. I recall recovering from my rta and massive head injury of which looking back I'm extremely lucky as a recent mri revealed half of my frontal lobe is misissing. I remember in hospital being very child like and when my parents were around I would regress looking back it does seem strange I know. I'm not sure if it was an attention thing... Not sure if that helps
That's interesting, 'being child like', Jill Bolte Taylor (My stroke of Insight) the neuroscientist say to treat brain injured people as if they have the learning brain of a child. They learn in a small environment getting confident in that environment, but as soon as they are challenged with something different then children 'hide behind' the legs of a parent and seem shy. In the same way we as BI learn new things but get 'stuck' when something new comes along. I suppose the difficult thing is that friends and family may not grasp this and expect their loved ones to 'recover' be the same as before, with the same memories etc. It's a relearning experience for everyone involved.
This is definitely something I have to keep at the back of my mind...maybe I should have the words "like a child" tattooed to my hand. The risk of expectation. Expecting him to be able to dress himself, make a coffee, get up for the loo, use his tablet/phone. All these dangerous and unfair expectations. Where as my 6 year old would have her clothing set out the night before. And some days I just help her dress because there are good attention days and bad ones. Some days she can tie something and other days she can't. I have to drum this into my head somehow that there are going to be wobbly days or wobbly tasks.
Interesting you should say that. Maybe 2 months ago he said he would like to go and stay with his parents for a bit when he left hospital. I was a bit upset by that at the time but I can now see why he would have wanted that knowing probably that our house is very....bustly young kids etc and that there would not be as much focus as he would get with his parents. However, when offered that a couple of days ago he emphatically says no. I have often thought that the speech thing has to do with the fact that he doesn't have to put up a front with us and can just relax. But in that relaxing, his speech sort of goes!
He loves a screen. I told the OT today that I have seldom seen him without a screen in his free time😆. Apparently they have a Wii at the hospital which he faffs about on. But they're considering upping the ante since he's a gamer. However I hear what you're saying. This has been something we have spoken about in the family. Hi uses his gaming headset because it amplifies his voice (volume and enunciation are issues). But it's almost as if having that headset with the microphone means to him that he doesn't really need to push so hard, which I get. But I agree with you, speaking to someone on a screen vs real life is just not the same at all. At my end when he does get him, I just don't want to exhaust him by asking for constant repetition, or let him see any impatience. 😬
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