hiya all my hubby had a hypoxic brain injury about 15months ago last month he was improving so much like talking walkin was more aware of himself and everyone but all of a sudden his stopped talking walking is not really intrested in anything just wants to sleep all the time has stopped using his mobile phone and he couldnt stay without his phone he will always play games or try to type or even call but thats all stopped im just getting very worried has this ever happend to anyone who had a brain injury or is the carer of someone with the injury im getting so worried about him i hope his recovery hasnt stopped here
whats happing to hubby he was improving so well la... - Headway
whats happing to hubby he was improving so well last month
Written by
fity123r
To view profiles and participate in discussions please or .
Read more about...
52 Replies
•
Hi fity. I had what my family thought was a relapse at around the 12 month point but we later put it down to a meltdown after months of my overstepping my limitations.
Acknowledging any mental or physical decline doesn't come easily and we assume that surviving means we'll be 'back to normal' through patience and determination. But it takes years not months to reach an equilibrium and it can be one step forwards and two back in the process.
My family were warned about setbacks if I didn't take things easy but no one could stop me from proving I was as fit and capable as ever.
Do you think your man has been pushing himself too hard ? 🤔
hi cat3
thank you for replying back to me cat i think yes he has been pushing himself to much the last month and i think maybe now his jus so over tired but i will be calling the gp tomorrow as i am really worried about him
he has his first speech session on thursday so i really do hope it goes good
but your right brain injuries do take years rather than months to recover and thats only if the survivor is lucky
It'll be interesting on Thursday to see your husband's response to the therapist. If he engages with a higher level of interest, and speaks, then it suggests he's been lacking stimulation.
I live alone so my low moods don't affect others and I can act bright eyed & bushy tailed if needed. I think the loss of our old lives can cause (amongst so many other issues) clinical depression which can be utterly debilitating.
If all else fails I'm guessing he might benefit from psychotherapy or antidepressants ? I don't know how I would've coped without them. Have these been considered Fity ? x
hi cat3
yes he is actually on mitazipine for depression his been on it since may last year his medications are all mainly for sleep his on 2sleeping tablets melatonin and and another sleeping pill and is also on lorazpam for his behaivor but his behaivor has improved so much that i dont give him lorazpam he dont need it last year this time he was so aggressive agitating but that all has stopped the last time he was aggressive was probably in november his on a mediction call tetrabenizine and thats for his involuntary movements chorea which he got from the injury
i really hope things go well in his first speech session fingers crossed xx
Hi fifty. It is 18 months since my now 39 year old sons cardiac arrest and subsequent hypoxia injury.
My son unfortunately hasn’t recovered as well as your husband but we have had setback with speech. His speech has declined a lot and some weeks he doesn’t say anything but does mouth answers but no sound comes. We haven’t had a definitive diagnosis of why this has happened except it could be down to loss of muscle tone ( same reason offered in part to why he started curling his tongue back and occluding his airway). He only returned to his care placement this week after a long period in hospital. He is going to be assessed by speech therapist this week and see if any help can be given with this. He is also well overdue for his Botox injections which do help with his muscle tone - 🤞he gets these soon - don’t know if your husband has had these or would be any benefit for him.
I do remember being told by therapists ( Walkergate Rehabilitation) that sometimes patients get into a low mood and can withdraw into themselves and stop engaging as they had previously. Maybe this has happened with your husband and he may need extra help/medication and encouragement to pick himself back up and get back to how well he was progressing.
Last suggestion maybe his medications need a review incase anything has upset his system or if he has some infection brewing. Our son always seems to sleep more than his usual when an infection is lurking. As ever all a lot of ‘ifs’ and ‘maybes’.
I hope this is just a small blip on your husband’s recovery journey and he starts amazing you again very soon.
Take care. Nanapal x
hi nanapal
first of all thank you so much for taking out time to reply back to me
i really hope things improve for your son and the outcome is really good
my hubby has his first speech session on thursday so i really hope that
i think my hubby was over doing things he wasnt setting for one second even during the night and yes i did have some sleepness nights with him
you mentioned botax what is that actually used for is it for involuntary movements ? my husband does have involuntary movements on his face and body maybe botax can help him
Hi, the Botox injections are given to my son to help relax his muscles as he has very bad spasticity and contractures in all four limbs. It is worth asking if they are appropriate for your husband.
I hope things are soon back on the upward trend for us all. Take care. x
Hiya
I'm so sorry to hear your husband is at this stage. If you maybe remember I'd mention that we had similar and that's why he was finally put onto this medication. It was at about the 1 ish year point I think....maybe less.
The neurologist calls it global apathy syndrome. That is part of the reason why he has been put on the Levadopa. His injury affected just about every part of his brain but the basal ganglia are responsible for the production of dopamine, the "I can be bothered" chemical in your brain that makes you do stuff. Like recognise that you are thirsty and then act on it. Initiate action like getting up for the toilet or because you have seen something and want to go and pick it up. Or enjoy something and want to repeat that activity to get the same enjoyment. His therapists saw similar. He lost his speech, he just lost interest. His neurologist admitted him for a couple of days for an MRI and a battery of cognitive tests and a bit of a test of the medication on a high dosage. The medication is helping, but he's not perfect.
Also though, I wonder if this is something that is quite commonplace. Like a period where you realise that this is it. You're not going to wake up and be cured and how you were, and some depression descends.
My husbandfelt that for certain, he would often say that he feels sad. However when the psychiatrist ran all his tests before they started his trial on the drug, his mood tested quite high.
I think he was just a bit down for a while. However everyone is different etc.
How is he saying he feels? What does he get up to in a day? Did you say you work through the day in one of your last posts?❤️
hi ored13
where do i start from last much was amazing and this month its like back to square one
yes i do work full time and my nephew is with my hubby but his been telling me to his always sleeping watches tv for a short time and falls asleep does that with me to i think his over done it last month i am going to call the gp tomorrow
my husbands actually feels very down confused these days and i have seen him cry to which breaks my heart icant do anything to help him and that hurts me so much i hope i had a magic wound il cure every brain injury survivor
this is a very long journey ored we jus have to carry on and on and on 🥲🥲
Has he had any contact with your local Headway group or coordinator. They do activities etc. Our area manager gave me a call and spok about options. It may be good to just be around others in a similar situation now that he seems to be at the processing things stage. For both him and yourself. I get frustrated with my husband I mean we're only human. But I wish that he would show some interest in engaging with other survivors. Bear in mind that him and you will be going through the stages of grief at different rates. It's part of the process. I think I'm still in the anger stage. I hear you can repeat stages ...I may just have heard this in my head because I'm hoping I'm not completely crazy. But though this is hurting 😞, could it possibly be an essential part of his recovery? You may have to remind me of this when I'm feeling low about set backs as well. He was doing so well the last I'd heard. Maybe he is just tired and thoughtful? Whichever way, watching what we see as a decline is so difficult especially when there have been signs of improvement. ❤️
(Apologies if this sounds a bit disjointed. There are a lot of random distractions today and I had to keep coming back to my reply😆)
ohhhhh oredi bless ya and thank you for takin the time to reply back i understand where u coming from "distractions" i mean i know exactly what you mean when one foot is in the kitchen and the next ones in the living room🧐
you know what we need to be positive no matter how many set backs we get they will improve and i know they will🤞🙏🙏🤞 patients and being positive is the best thing for us right now i bet you next year this time we will go back to our posts and we will say well done to ourselves for being there for our husbands
i know its extremely hard and some times we cry about the whole situation get angry pissed off and think why me ? and the" ifs" and "buts" come in but your right we are only human❤
well my hubby has his first speech session tomorrow and this is after 10 months of him bein discharge from rehab to be honest im looking forward to it hubby is still very tired im jus thinking could it be all the slippin tablets his on that effect him the next day to i rang the gp for an appointment for him i think he needs an scan n maybe some blood test to
how is your hubby what has he been upto have things improved with his speech now?
Hi,
How did the speech therapy session go? I didn't know you're husband was on sleeping tabs.
I won't lie I had a massive wobble yesterday and into last night . And today I have a huge emotional hangover. Which is basically wanting everyone to leave me alone but they won't😆. My son had been stuck to me like glue all morning, usually he would just be on his laptop in his room. I think he's vacuuming this dad's chair now. I dunno, scared to go downstairs in case he's vacuuming his sister.
Husband seems fine all the time. Some days I tell him he's living in candyfloss cloud land because he's so content.
hi oredi
yeah hubby has been on sleeping pills since he was in rehab otherwise he wont sleep but even sometimes these sleeping pills dont even work does your hubby sleep well during the night is he on any sleeping pills?
yeah the speech session went ok the women was showing some objects to my hubby and asking him to tell her what they were which he did but she noticed when he was trying to speak he wispered instead and it was not loud she think thats to do with his involuntary movement chorea which is making it harder for my hubby to speak
she said chorea can even cause swollowing problems to but thank god he can swollow xx
Interesting. And you're husband has no Parkinsonism? In rehab the speech therapists latched onto volume therapy because they said his voice is very quiet (I doubt it was the right things to focus on volume and not other things, anyway). I do remember one of our sessions the (not new but not part of the rehab team) therapist mentioning this sort of thing. They worked with him on LSVT loud. This is how we have our current therapist as she is trained in it. Worth looking at. But the reason I asked about the Parkinsonism is that it is something symptomatic of someone with Parkinson's. Small movements and quiet speech. Many have said that they feel like they're doing both things normally but to us it's barely Audible. Or the movements are tiny. Worth an ask and a look about. I found our therapist on twitter and she luckily is an NHS therapist.
As far as sleep....my husband can sleep quite a lot depending on what's been going on in life to be fair.
How have things been these past few days?
morning ored13
just getting ready for work the last couple of days have been quite lazy for my hubby his speech is still the same but iv noticed his telling me the colours of any objects i ask him eg colour of apple,wallpaper his clothes he can name colours that didnt happen before lastnight he was quite emotional was keep saying i want to get better 😢😢
when he was in rehab he did developed parkinosim in the early days where his tongue was making thse involuntary movements when he was holding a fork his hands where shaking his head was moving from one side to another but by the time he left rehab it turned out to be chorea so his being treated for chorea its when the basil gangila is damaged now he still has invountary movements but not as bad as before like early days now its affecting his legs where they keep moving and his head sometimes moves but not as fast as it was in the early days
you know ored13 iv been giving my hubby neuroplus mind supplements my work mate told me his been using them for the last 4years and they really do help with memory and cognition its been 3days now his been taking them i cant see any improvement at the moment maybe its early
iv noticed another thing and this is abit embrassing but i have to take it off my chest his been sexually active the last couple of days i mean his keep demanding for it🙈🙈🙈🙊🙊
hows your hubby doing has he done anything that has amazed you
you know what jts a slow process but they will get there be positive believe me they will❤
I had to have a chuckle at the sexually active bit😆. We had similar. But I must be honest I'vengot.too much on my plate for such things so I've told him to put a lid on it as there is zero sex drive right now....the shop is closed for repairs 🤣🤣🤣🤣. When he ce for rehab it was a THING. Then it sort of died down for a bit and life got exceptionally busy. And the rest is history. The thing that worried me was pregnancy...we already have 2 kids. Anyway...I digress.
I'll have a look at the supplements for definite thanks for the suggestion.
Our husband's injuries sound so similar, but the other way around. He had chorea but it sort of calmed down. His left arm used to sort of wonder around involuntarily. So now and again it does twitch, usually when he's tired. And I can tell when he's getting sort of obsessive because his left hand starts curling up. Usually around food or when he started sucking his finger.
That sadness and just wanting to be him again is probably such and important thing. If he didn't have that and just accepted then maybe he would be less able to make improvements. I sometimes think that mine doesn't have much of this. He is quite accepting of things. But this has of course got to do with this Global Apathy that he has. This is improving with the medication he is taking.
Has he done anything amazing.....well he has started saying please and thank you again over the past few days. It's not something that he's said to me very much, but the past couple of days he's said thank you when I've given him cough syrup and please to something else yesterday, can't remember what it was, but it is a noticeable change for me.
Does your husband have a neuropsychologist?
hi oredi13
omg my husband is saying thank you , please and welcome to me when i obviously tell him i got you this and that it certainly similar to whats happing with your hubby
my hubby does not have a neuropsychologist iv told the gp to refer him to one months back but still i havent heard from one his just about got speech therapy
your right about pregnancy i get abit stressed about that to not that i dont want kids i do but looking after hubby and working its very difficult if i jus sit at home and care for my hubby i would not be able to pay my mortgage i sometimes think to my self will life always be like this which i dont want and yes i do cry alot thinking about the whole situation im 37 and i have no kids times running out soon il hit 40 and than it will be less chances of me even conceiving it all scares me
oredi13 be honest do you think our husbands will improve with time ?
with my husband the only disabling thing is his chorea apart from that he looks fine
what is global apaty has your husband jus recently just got this or he had it when he had the injury
my husband can now wash him ownself brush his theeth and wear his top without my supervision before he couldnt do this
he can now write his own name and also mine but he is not aware of where he is he sometimes says his in italy and his 28years old but he clearly isnt the same things use to happen when he was in rehab so that has not improved yet
do you feel that your husband is sometimes confused where he is or doesnt really know how old he is xx
Um...I think that yes there will continue to be improvements. Nothing earth shattering no. But when he came home he couldn't reach down to out his trousers etc on or take them off. And noe he can. He can also take his splint off .
He can open a can of (non alcoholic) beer and has started using a bottle opener again. He can open and close the car door. I can leave him in a disabled toilet and come in once he's flushed (he used to not flush). My list is actually quite flipping long. So yes I believe there will continue to be improvements. They will be slow and they will seem like nothing but they will be there. I find the best improvements come on days where we have a bit of a falling out and we are bother like "F you!" And ignorw each other for a few hours. Those are the times when he HAS to do something for himself because I'm too mad at him and he's too mad at me. And suddenly he can do something new.
Is your husband on all the benefits? Bear in mind that you would get maternity pay. It's a bloody dauting prospect having kids now. I have to remember (I'm also coming up to 37 next month) that having the kids and James (that's his name, "my husband" is too long and there are MANY James's in the world) is what is tiring. But if it's just me and James and me and the kids...I'm not broken. But we have 2 kids. They're 11 and 7. They have activities and friends and expectations and all the things. If I had a baby now that baby would fit into the current framework and we would adapt as a family. And yes it would be bloody hard. I'm not saying that you should go and have a bunch of kids, don't get me wrong. But your husband's brain injury needn't make it the end of the road.
Don't take my advice, I'm obviously high on the hour of free time that I've got this afternoon, but things may change, who knows. But I never thought I would be at this stage where I'm sitting on the couch, my husband is upstairs having a shower, and will dress himself and then he will have lunch. Kids will come home from school and then I'll ferry them to their various activities while a friend in the village is on call and James hangs out at home with the dog watching Netflix.
If someone had told me this during that 1st week of his discharge, I would have ugly laugh/cried in their face and downed a bottle of wine into the bargain.
So yes. I believe there will be changes, slow changes. Changes that the NHS may not care about or even those close to you. But they will matter to you. And there are DAYS. BAD DAYS. but they don't last forever. They're just bad days.
We are getting to the point where therapists are feeling like they can't do much more to help. We live entirely off of benefits. I will have to decide what is the most important thing and pay for a private therapist to help with it. And then we will do the odd thing at home and then I'm going to accept that things are different and that we will do what we can when we can, and actually start looking at living a little instead of fighting fires. James has no issues with memory. He sometimes forgets the odd short term thing. Like I've said the night before what he has going on tomorrow and then when i tell him it's time to make a move in the morning or we'll be late he may ask me what we are doing. He knows his age etc and remembers a lot ofnpast events...his early time in hospital and maybe the month before his injury is pretty much gone.
I think it's amazing that you're working. I hope that you're taking care of yourself as well and not just your mortgage. Not an easy thing.
I gues this giant ramble only answers one or 2 of your questions now that I think back🤣🤣🤣. And apologies for any spelling errors, but I'm too lazy to read back!😁
hey oredi
omg that is amazing your hubby can do all thses things that is improvement wow its all the hard work your doing to help him so well done you 👍
im not gonna lie the last week or so i have been so depressed with the whole situation its like today he can be so active and then come tomorrow he cant even hold a pen 😒
i know its a very very slow process i hope and i really hope the outcome is so good i just want my life back i feel so crap these days it makes me think is this my life now
i know they is alot of things that my hubby can do now but couldnt do before but still everythings a waiting game and than on top negative people put me down im just having one of those days today i just wana scream
my hubby is actually trying to use the toilet thses days he tries his best and i can see his trying that other day he was actually laughing away with me on some of his old funny pictures which never happend before xx
(((hug))) I know this feeling. And it's ok and well and truly to he expected. I have started taking St John's wort tablets along with rescue remedy drops. I used to just take the drops but a couple of weeks ago I felt so flipping terrible, it was such a dark few days that I knew I had to do something. I won't go near our doctors' surgery since they have done enough to actually get us into this situation in the 1st place, so had to go the natural route for some sort of antidepressants. I wasn't sure whether they were doing anything. But yesterday I didn't take them. It got to about 2pm and I felt this massive wave of overwhelm hit me after dealing with a motability car situation. And then I knew . Took them as soon as I got home and a couple of hours later I just felt... lighter.
Sigh....those days when they just seem broken. But yesterday was a good day. I've just started learning to accept those days. They sometimes come in pairs sometimes it's the whole week.
That's great he's trying to use the toilet. What sort of toilet set up do you have at home? We have one of those raised seats with handles that I just hate. We're meant to be getting the same sort of thing that they have in disabled toilets, but I've not heard anything in a while about that.
That's great that he's having a bit of a laugh where he didn't before. That's ba bit of progress. Is he still feeling down? How are the new supplements going?
bless u oredi thanks for replying back to me well i got my hubby a toilet frame when he was discharged from rehab yeah i bhought it off ebay but to be honest he only used it for about a month and than he was started to use the the toilet as normal where he didnt need a frame so i got rid of it than he went back a step by bloody using the pads again he wouldnt do it in the toilet than now his using the toilet again i dont know how long thats going to last😒🙄🤔
the new supplements are not doing anything at the moment i dont see any change at all but when he was taking vitamin d3 his walking was gettin better
his chorea has gone less his not moving and shaking the way he use to
you know iv noticed 1thing he can talk he jus chooses not to i dont know why his doing that like yesterday he was eating and i knew it he wants water i said what do you want jay? and he said water and than i wanted him to repeat what he said i thi k he got abit pissed off and said "give me the water otherwise leave it " !!!
his feeling very bored his always tired he dosnt really do much
its been 16months now and still there isnt any big improvement jus makes me think xx
Hello,
Sorry. Tough week.
I've been told that when emotion is involved speech can be better. I've experienced this as well.
I've this weekend started a 2 month trial with Cough Drop. He seemed fairly interested and had a go when it was downloaded....and then didn't touch it again for the rest of the weekend. I think this is just standard for him and I find it frustrating because we are considering getting him a ridiculous expensive phone. (The Samsung that folds out into a small tablet). But if it's just going to sit on the bedside table and he won't use it I'm just going to lose my mind.
It's been one of those "I am so alone" weeks. Just not having the support of another adult in the house is tough. I make soap as a hobby to keep me sane. It all went wrong yesterday. I baked cookies with our daughter, and gave her loads of attention and then said "ok, I'm going to spend some time doing my thing and you go and play". Hah....it was from that moment that the day went pair shaped. Made lunch...adding in the quite moody and tired tween brother and their dad into the bargain made things. Hard. Oh and I spilled my glass of wine EVERYWHERE in the kitchen where I had poured it to remind myself that I could sit and relax for an hour when they were all in bed. Also broke the favourite glass. Then our sin had ALL the problems including a headache and things and there was crying😔😔😔😔😔and I just needed another adult to do one this so I could deal with the other. This morning I just want my children to go to school.... QUIETLY.
Anyways, sorry for the rant. Monday's can often be my reset day. Oh one more thing. Our dog (who I think found and buried one of the Easter bunny eggs). Had the most diarrhea that I have ever seen all over our carpet last Sunday". I had no idea what to do. It was everywhere. I had to actually cut away the carpet and underlay and get rid of some laminate. Oh my goodness it was AWFUL. But I can almost laugh about it now and I've nearly forgiven her.
Anyway I digress and rant.
May be worth getting the frame back for definite. Does he had a bottle to use at night? I know for a fact that my husband would take the easy way out all day every day. This may have to do with the Global Apathy (which has to do withe the basal ganglia damage). But he was sort of like that before anyway. So if he knows that he has to walk to the toilet but sees the bottle there...he's going to use it...all day every day.
He definitely needs an assessment from a community occupational therapist who will be able to help you get the correct equipment so you don't have to get it on your own. I'm still gobsmacked that you didn't get any community care after discharge, that is crazy!
So
How has your week been?
hey oredi its ok to have a rant its life and we only are human so its ok mate i know the feeling of being alone sometimes you just need that extra pair of hands it happend to me when one of the eveings my nephew went out with his mates and stayed over it was so hard for me i seriously dont know what il do without my nephew he really helps me alot
oh well where shall i start from that other day i took my hobby out shopping and he was very exicted to go it was a lovley day out until we reached to tescos there was this lady who pissed me off so much he was just staring at my husband and giving him those looks as if shes seen a alien because of my hubbys chorea when his exicted and happy he intends to have alot of involuntry movements and he was like moving alot which obviously is not his fault she really upset me alot i ended up having an argument with her when i walked out i was in tears and honestly at that moment i just could not stop crying i felt so sorry and helpless for my husband it felt as because he had a brain injury his not aloud to go out because people who have no idea what a brain injury is make you feel so uncomfortable honesly i could have punched that women she really pissed me off
i think having a smart phone is really good for people with brain injuries my hubby had one since he was in rehab and that was a samsung but he left in his bed without knowing he left it there and he wet the bed and the phone got messed so i got him a new motrolla which to be honest he loved alot he always used it watching news football using watsup etc but he did the same thing again uurinated on it while he was sleeping so the screen got messed on it so i got rid of that one now i got him another motrolla e20 but he dosnt really like this one he never uses it it rings and rings and rings and he never answers it
does damage to the basil gangila ever heal?
oredi do you think our husbands brains have healed as they do say with hypoxic injury it takes 6months to recover so do you think they brains have healed because im so confused with this but if you google it it says it takes 18months to 2years to recover from abi the whole thing is so confusing if you do know the answer to this please to correct me as im just going insane 😒xx
Hi,
Sorry I've had a low few days so been quietly attempting to cope.
So what did she have to say about her blatant bad manners and narrow mindedness? This woman in Tesco. I always find this sort of behaviour really surprising when in modt cultures we teach our children in some way about being polite and not staring. So for an adult to stare at someone like that. For goodness sake if she'd looked log enough she would surely have realised that there was a problem, it's not rocket science.
There was a guy at the hospital the other day who was SUPER drunk. And not even the teen who was in the car park batted an eyelid....because "it's rude to stare" end of story. Kids are different, but not an adult. Ridiculous. Sorry you were in that situation. There is such a weird pressure when out and about. James appear completely normal, just in a wheelchair. Until he starts make involuntary noises, which you can tell he's trying to suppress. Or doesn't speak. He's lucky he gets to hide his problem with saliva (he doesn't swallow enough and overproduces) behind a mask. So if we're out and about we just look as odd as we always have, but with giant in a wheelchair being pushed by a tiny fat woman scolding their kids as they go 😂😂😂😂. Clears the crowds anyway. People keep a wide berth.
My son has my husband's old phone....it's waterproof and can literally be submerged. Is this am option? Also does your hub wear pads to bed? We went to the urologists the other day and they suggested various things which we will just try I'm stages (I sound very calm but I think I had a panic attack walking through the hospital...it was weird). However when we left I felt a lot better that there had been se actual advice given. She had mentioned the option of a sheath at night. We won't need that and I don't think it would work fo us be ause he doesn't have the best dexterity in his left hand. But have these options been given to you. I mean I'm confused that there seems to have been so little follow up on things for him?
On healing.
I may be wrong here but...as far as I understand damage to the brain doesn't actually heal as such. I mean all the trauma does but the brain sort of re-routes (I can't spell anymore it seems).
This finite amount of time given on healing is also a bit of an annoying thing because it's confusing. As far as I understand those 1st 6 months are critical healing. The big things. And I don't know that it's 6 months or a year or whatever because everyone is different. Anything after that initial period it's anyone's game I think. "Small gains". But who says they're not ongoing. A friend who's dad had a major stroke over 10 years ago, is still making small gains but because he's now at retirement age they have pulled the plug on his therapies. I hate that term "small gains" but I think it's what they call it.
I don't know. I think it's how we approach it maybe. I was the all guns blazing type. Spend all day doing big meaningful things like they do in rehab. And James burnt out. I didn't realise at the time because he wasn't complaining about doing an excercise session and then some art and then some speech therapy. But he was broken and we weren't pacing. So going back to the small gains I guess. And just letting him do more on his own super slowly. Yesterday he took 2 hours to get out of bed, do his teeth, shower, dress and get downstairs. I helped with a bit of the dressing because we were cutting it fine. But that's ok. That's therapy I guess. I understand what OT is now. I had no idea. It's literally setting a goal in everyday life and working towards it. We are working on using a fork correctly in his left hand at the moment. And trying to incorporate it into like a lunchtime. When he came home there was no focus until the community OT referred us to a specialist. And now I finally understand some of this. They don't have to GET BETTER they have to learn to function again in a world that looks different, where everything is a challenge.
So that they have managed to get up, go to the toilet and remembered that they're going to brush their teeth and slap some deodorant on and get dressed, then check their phone...winning! The alternative has been lie in bed and do nothing until someone prompts me to. For basal ganglia damage I think this is an issue.
Righ I appear to be making up for lost time here😂. I'll not bore you with any more of my musings.😂😂😂
Anything good or new happen this week.
How do you feel you're coping?
hi ored13
things have been quite difficult for me i just cant sleep i try my very best but cant switch off this has been happing for about 3weeks now i just cant sleep at all on the other hand hubby is sleeping well during the nights now he is making slow progress with his speech now he had a speech session on thursday with went quite good he knew actually what colour is his t shirt if its ranny or sunny what he had for lunch where he lied he didnt have pasta he had rice but its ok i let him off for that
things are really improving with his walking to now he can actually walk from the living room to the back garden on his own i just supervise him or hold him with a belt from behind
with his eating he dose feed himself only when he likes whats cooked otherwise he depends on me😔
your husbands old phone probliy works wounders for now once i think he gets to use it more oftenly he get use to a phone i think thats when you should really get a new one for him
hubby had an appointment with the gp on tuesday so asked about the global apathy but he checked his notes and said he never had that when he was in rehab and to be honest because his on mitazipine that helps him towords the global apathy
but oredi i have noticed my husbands involuntry movements are not as bad as they use to be i mean they have calmed down thats why i asked if the basil gangila ever heals
i think about 2years we will see other improvements well i hope my next door had a stroke it took her 8years to walk talk so again and now she works and drives
how have things been on your side ?
has your husbands memory been effected or attention can your husband write his name my husband is now starting to write his name i mean its not perfect but he tries another thing iv been using is play doh i know it seems childish but my husband actually enjoys the play doh sessions they are good for fine motor skills xxx
Hello...it's been a bit of a strange couple of weeks. Well it seemed like it at the time, but now that it's all over I can't actually remember why.My car is giving problems, we have to buy a "for the meantime" car which I'm quite stressed about until we can get a motability car. We were told the end of January...so some time yet.
Actually on the whole involuntary movements, James had this quite a lot in hospital. I remember when we were on Skype that his left arm would lift and just float around. Quite gracefully actually (he's never been very graceful). It doesn't do that anymore, just the odd twitch. And sometimes when he's doing something that he may be slightly hyperfocused on, like eating and he also sucks his index finger. But when doing things like that it's like he forgets he has a left hand on he curls his hand up and it can make sort of random movements.
I wonder whether this is healing or whether things are just calming down.
That's so good to hear about this improvements. Speech and mobility are so important and he seems to be coming on so well, that's awesome. It can be so hard when we're in the moment to see these things and what a difference there is.
I mean, just those few things that you mentioned there, they're big!!
We did a thing the other day. Which if I think about it in normal terms is a bit laughable actually. However. We live quite rurally but in a village. James came downstairs the other day and I thought "right we'll do some toe taps on the step and then a couple of quick excercises.". I was immediately frustrated about it because some of these things just seem...I dunno. So I asked if he fancied a walk accross the road to see out neighbours' dog and the ducks. Just a quick walk to their gate to give Arlo a couple of treats. So off we set. It was really slow going and I could tell he was worried because nothing in the outside world is actually flat. He insisted when it came to crossing the road that I load him into his wheelchair (nope sorry) took him 10 minutes to cross the (narrow) street. But he did it and he was all pleased with himself. Had a chat with neighbour, dog ducks. Another local walked past so chat with them (well I was chatting). Then wheeled him back home. He was SHATTERED.
There is no way I would have thought he could have done that a year ago. Not a chance. And neither would his therapists who I think have lost faith in his ability to improve aside from his O.T. she has said that slow is all we can hope for. Slow small improvements/achievements.
Just in these messages that we've been sending back and forth, all I see are improvements. Little things, encouraging things. But they're there. They are not earth shattering. But like you said about (was it your neighbour) there can be improvements. Some major. So I think we keep chipping away and remembering. I can sort of have a look at these messages when I feel like we're heading nowhere and they remind me.
Anyway considering that I have been so well and truly out of the loop. How are you doing? 🌼
hey oredi
i was actually thinking of messaging you that other day to check if your ok but i completly forgot mate
omg that is amazing oredi i know its slow and it dosnt matter atleast he crossed the road and he was proud of himself i think you should keep taking him on small walks just probliy just on the road i think that will build his confidience i think the best therapist for our husbands is us🙉 i can still remember the the one in rehab a year ago told me he would never be able to walk again his got ataxia what a load of b*****ks they dont know themselves they just doing a job and getting payed for it they dont know what emotions we go through when we hear things like that😡😢
no seriously oredi im really happy to hear about your husband just keep pushing and encouraging him when he does something praise him like well done, u can do it !!great job
my husband actually did something which amazed me😃 well that other day he was sitting on the chair after lunch and i said to him jay do u love me not that i wanted an answer back i just said it randomliy omg the answer i got was "you know i love u" he would have not said that a year ago
another thing he did i took him to the kitchen and said can u make me some tea so i put a cup and spoon and teabags infront of him and asked what else you need to make tea he looked at me and you know what he said in a sacastic way "obviously you need milk to make tea"
i can swear on it my husband chorea is calming down maybe it is healing i dont know what it is i go back to the old photos and videos to compare and i swear he was really really bad last year this time he was al over the place it was like his drunk now its still there dont get me wrong but no where near how it was last year ❤
you know what these little things they do it just makes you so happy if you tell a relative or a friend oh this what happend today they just stare at you and they think we just imaging it but these things really do happen
i tell you one thing i believe in miricles and believe me they will get better regardless of what the doctors say i dont even believe in doctors everything they told me about jay jay is completly different to that they said he will never walk talk his capicity will never come back which is a lie it did!!
🤣I'm loving the sarcastic answer🤣And also that's so sweet that he said he loves you. When there is this pack of speech relationships become so odd. There is stress and frustration and we forget some days that we can sometimes just hang out. And just because they're not making us breakfast in bed and declaring their love to us , doesn't mean it's not there.
I have to remember that James and I have been married for a while. Our relationship was all "have you spoken to the school? Remember the kids have swimming today and I'm working later tonight". We were far from the million u love you's and affection. However we had a rhythm and did things that communicated it.
I know what you mean about that attitude of "yes well there is significant damage to the brain so....forget any more improvements". It makes me so mad. They seem to write happily flint words around and just wall away to their next patient or out for lunch. We had the ultimate experience of that in the earliest weeks where we were told to pretty much pull the plug and move on. But I could feel that horrible "I just want to get home and enjoy my weekend , so can we just get on with this already".
It was flipping awful! And when we didn't accept this broad (turns out to be nonsense) statement, there was such a kickback. Worst weekend ever trying to keep someone alive, over the phone. Begging nurses and support staff to go in an have a check on him when it wasn't scheduled and they did it because that's their job and because they're somehow more compassionate than the doctors, but get paid peanuts in comparison.
(I could rant here all day)
We also have a chocolate teapot of a physiotherapist. I've sort of written her off actually. Though we do need her to refer us to certain services so we have to sort of keep in touch.
I've gone in a righ tangent and can't remember what I was actually chatting about 🤣🤣🤣🤣🤣.
But yes. We are the ultimate therapists for them because of the amount of time we spend with them. I spend hours of me week just staring at James's feet😵😳😆. Watching his toes grip the ground, how far was that step in comparison to the other. Watching his tongue move...is it moving enough (no it's not really so have to look into that). Did he pick that random thing up with his left hand!
I think I may actually be crazy.
Anyway.
Any new developments since your last message?
For us, he's started taking some responsibility for his medication. So he takes a tablet or 2, four times a day. I have alarms set for myself. And usually it would be me administering them, then our oldest started helping then our youngest because she's a little busy body, like a tiny mom. Slowly I've been trying to encourage him to open the little tubs himself whih he was useless at. But the past week or 2 I've just been saying that he needs to take his tabs and he's done it himself. Then the other morning I'd sent our sin up to tell him to take them and he'd said he already had. And this has been happening with the lunchtime one as well on and off. So he now knows that he takes one about 8 and one about 12. He also brings them with him in his pocket along with his phone. I don't really have to encourage this unless he's having a tired day and we're going out and they MUST be with us.
Also the neurologist is quite happy with the improvements that has been happening and would like to slowly increase the dosage and see whether more come.
That would of course be amazing 🌼
hey oredii am so happy to hear that james is actually taking some responsibilty of takin his medication iv got a big smile on my face no seriously that is fantastic honestly things are slowing moving now i wish jay could take his medication i think il be the happiest woman on earth if jay could take his medication but because of his memory problems and cognition its really hard at the moment he does ask me what is this medication for even tho iv told him millons of times before
nothing much has happend the last week apart from him damaging his mobile again 😡😡😡 he intends to put it in his pocket when he has a nap and than he wets it and than the bloody screen is gone so now iv decided im not gonna get him a new one i cant keep wasting money on phones so il get him a tablet so he wont put that in his pocket it wont even fit🤣🤣 i really really want him to use the toilet he can do it but gets lazy i just dont know what to do with this toilet bussiness i really do think the neromind suppliments are working as his concentration is improving the last couple of days he hasnt been talking much i feel when he tries to talk his tongue twists because of the chorea and its difficult for him
we are planning on going to the beach on tuesday but feel abit scared maybe that will be alittle to much for him at the moment as there will be lots of people there i kbow when there is alot of people walking around him he gets adgitated but that was last year so i do really want to know if that will happen now its been a good couple of months now he has not been adgitating or has been aggressive infact his moods are more settled than before his quite happy most of the days xx
We'll. You may be right about the getting him a tablet thing. Our son has an old Samsung A5 and it's waterproof. Would this be a good option do you think?
Alternatively one of those covers that you use if your like out on expeditions and likely to drop your phone into a swamp or something?
What does his OT or even the continence service say about the wet situation? Is he aware it's happening? Is there a loss of sensation? Is he just not getting the messages to his body from his brain in time for him to get up and go?
It's so frustrating. I fought very long about this sort of thing. Got really mad and frustrated and angry at both him and the situation and then me.
Our OT encouraged that we have his prostate checked and some urine tests done. Then if that was clear push for urology and continence support.
She also made me aware that despite him just being slow moving because of his mobility and bradykinesia, there may be other things at play. He has a lot of spasticity, there could be involuntary contraction and release that we don't know about, loss of sensation, scarring from bring catheterised for a longer period. The list was pretty long. So I decided to let go of all that frustration which then meant guilt and just roll with it. Some weeks are dry weeks, and others less dry.We're not having a very dry week. (He would probably laugh at this and give me daggers at oversharing as well). But thankfully, we have the support of the continence team who sent us a whole bunch of things to try. So the thing we chose is working!
That's my overshare done. 😆
I guess what I'm trying to say is that these things will swing about, come and go. There is no reason for it and no routine. Oh. He has also been put on a medication that reduces the need to go so frequently and urgently. Downside to this is that he doesn't walk as much to the toilet and his ankles and feet are swelling. I've added that to the future me list to deal with.
But remember for your hubby: He's using his phone, and remembering to put it in his pocket (winning) and you're seeing some benefits from the supplements as well (bonus).
Go to the beach. If he's willing to go then you are winning again. Better than sitting home doing sweet nothing. Take the fatigue that comes with it. And to avoid those busybodies and starers, go when it's less busy. So early morning or wrap up and go at 4/5 when everyone else is heading home or for a takeaway. Or grab a couple of fish suppers and just go and sit on a bench close enough. That's so many steps closer to the beach than your living room or kitchen.
Oh and I've learned a new thing:. To take the hit.
Have a good day then have a few not so good days. Doesn't cancel out the good day. Or the good/new thing that happened.
You'll get there with the toilet thing. What does your husband say about it? Has he spoken to you about it. Or would he maybe react better to a GP/OT?
Anyway
Our good thing for today is that we went out to take a child to a weekly activity. He usually stays home. But today we missed our son's swimming so that we could all take him to band practice and go and faff about in a local park for half and hour or so. This would have been a very regular occurrence for us pre BI but has sort of morphed into him just sitting in the car not wanting to come out in his chair. But today I asked if he wanted to come along and he did. Then I said that he would really need to come out into the park with us and he agreed. Was quite keen. At one point I thought Netflix had swallowed him, but when I asked half an hour before we left he said he was definitely coming and started making a move to the toilet etc. (Takes us about half an hour to get out of the house and into the car.
How has today been at your end? Any plans for the weekend? (We never have plans but some good things sometimes just happen to us🤣 or nothing at all...which is the best thing😁) .
hi ored13
iv tryed all the waterproof covers even the glass you pop on the screen it still gets wet my hubby knows when he needs the loo but just gets lazy getting up and actually going to the toilet the O.T have told me to take him to the loo every hour so he will get use to it but its so hard sometimes his ok to go and sometimes i need to drap him lol
my husbands kidneys were got slightly dry in august last year so he really needs to pass urine every so often and drink plenty
today we are having a very lazy day his been sleeping most of the day i have noticed one thing in the last few days his actually trying his very best to play connect 4 and to be honest he actually enjoys it his always writing in sentences eg my name is jay before if i asked him to write his name he will only write jay his writing is abit all over the place abit like a kid but his trying
hows things on ur end anything new or intresting happend?? xxx
hi oredi13how u doing hows hubby??
just alittle update from my end well hubby can now cut his own nails!!! alittle bit help from me a couple of months ago he couldnt do that iv got a little diary and i always write things in it which he cant do well today he cut his own nails only 4nails but atleast its something
i also have noticed he can put his own top on and take it off before he could only put it on
i have noticed when his chorea is quite bad its difficult for him to talk
anything new on your side😊😊
Oh wow!!!!
This is a big deal. The hand eye coordination etc needed to cut your nail only and not your finger etc. that's excellent!
Also finding a way to take his top off is a big one
.. And one less thing you need to do for him. So so good! Bit by bit. There's a saying where I'm from that translates to little by little makes more. Maybe this is how we go? A bit at a time so we end up with a bigger overall result. What do you think?
I just keep thinking about where we were a year ago and can honestly kick myself for those negative feeling days. But they have their place too I guess just as the positive days do.
I'm a fan of the diary idea but tend to drop a comment in our family messaging group because there is no way I would remember to actually write it down😂😂😂.
Well I've noticed the past couple of days (today not included) that James had been putting his dirty pyjamas in a pile that I often have on a shelf that I take down with me before I do the laundry. I've gotten rid of all washing baskets bar 1 because I fill them with clean laundry and don't put it away... But I may get a little wicker one just for his bits and bobs.
Otherwise, we have achieved very little this week I must be honest. Spend a half an hour or so eating outside in our back garden the other day with the dog bring her usual crazy self. But other than that we have generally been quite lazy.
I wish we could both have some luck on the speech side honestly. It would make such a huge difference don't you think? Just for them to come out and say what they want to say!
But we both have things to add to out lists this week so guess we're winning!!!🥳🥳
i think the speech will come to just see how much we well there have achived in just 18months honestly they have achived alot from last year this time i was stuck was worried and scafed for the future but ut sort of makes sense now i think by december this year they speech will come back i hope🙏🙏🙏
the laundry thing i never tryed with jay u know what you just gave me an idea i think im sort of gonna do something like that with him to but honestly im so tired when i finsh work i just gets to much and all i need is my bed
im thinking of applying for some benefits for him to but i dont know what benefits he can get i know he can get pip but do you have any other idea of any other benefits brain injured people could get at the moment we have not applied for anything but i think now its getting to much for me i seriously paying for everything and its just far to much for me 😢
Hellooo,
Could he not apply for Employment support allowance as well? You would also get carers allowance (it's barely anything, but puts some fuel in the car or pay for a couple of takeaways on the days that you just can't face cooking)and you may get some universal credit as well.
I contacted Citizens advice when James was still in hospital because I was freaking the hell out. I knew I wouldn't be able to work and I just felt like we would drown (we're not). But they were excellent. Sent me all the figures after we had hashed things out and they were pretty much on point to within a few Pounds. Your husband should get full enhanced PIP if he has mobility issues(that includes.the extra 230 or something for Mobility which you may want to put towards motability, but why bother if you have a suitable car...and there are no flipping cars at the moment anyway, don't even get me started 😑)
But definitely worth getting in touch with Citizens advice. They will give you all the information and let you know whether or not you're flogging a dead horse , help on appeals and the like.
I hear where you're coming from with the flopping at the end of the night. I would say that I can flop more successfully now that James is doing more things independently. I watch him walk up the stairs and get safely onto the landing, then I do the last few things....may or may not be a child lurking about who I probably ignore so that I can get my things done and then watch for his light going off. Shout up "are you ok" and goodnight etc. He has his watch to call me if he's in bother. And I couldn't give 2 hoots at that time of the day if his undies or t-shirt are the wrong way around...and neither can he.
I just set the bed up with his things and he takes it from there.
OMG that is quite a lot for someone who came home barely able to put his own trousers on!!!and he's pretty quick now. So you're right....quite a lot has been achieved in a short period of time.
How is the continence situation going?
thank you oredi i will really look into the citizen advise and also on the esa thank you my hubby cant go upstairs neither can he come down stairs iv got a bed in the living room for him and thats my bed room to😢
well today all day i took his pad off and took him to the toilet every hour he only wet himself once i think what im going to do is when i have a day off il take his pad off all day long so he can get into the habit of using the toilet i hope that work its his cognition which is bad but i feel with the omegas his memory is improving and his making new memories he dosnt remember anything about his having a brain injury or his going in to cardio arrest or anything like that but he remembers when we got married that memory comes and goes
does james remember his brain injury ?
I wonder whether there are any grants to get a stairlift fitted. You can get them used as well. There has to be some sort of help! Or continued Physio to get the strength to navigate stairs. It's frankly blooming lazy of them to have discharged him to a home with stairs and not to have brought him to the pi of being able to use a staircase with rails on both sides (this is what we have).
James can't remember anything from the few weeks before he collapsed. Or a few weeks after my. That Month or so seems to have just disappeared. He remembers everything else except that he thought one of his great aunts was still alive, which she isn't. His memory is quite good. Sorry term maybe not as great but that fluctuates.
Your plan seems a really good starting point. Don't be offended but it's like when you have a baby. Everyone has all this advice on what you should do and when and how long it should take to potty train and for 1st words and all that jazz. I have an older friend in who has 7 kids and she has a few choice words for that sort of advice 😂😂😂.
Go with your gut and what you feel works for you both. Day off, bit more relaxed, not shattered and feeling overstretched? Sounds like a pla. To me for definite!
It's like a little challenge. I'm going to work on something as well I think. Either getting James to tidy his washing away (we bought a basket out of Tiger today that he quite liked and was keen on the idea of). Or getting him to tidy his downstairs space before he goes to bed.
What do you think?
hello oredi
how u doing hows hubby getting along well i just thought i update you today my hubby cooked a lentil curry without my help the only help i was giving him was holding on to him when he was standing to be honest it was made nice
we had a speech session to today it didnt go well its like jay doesnt engage with them but when his with me he does all sorts of things but just not with them i feel that they just gonna giv up on him now its the way the women was saying he dosnt engage and because of bis involuntry movements its very hard for him to talk it quite pissed me off (well thats there job to make him talk thats what your getting payed for)
yesterday when i gave him his food he said thank you darling my heart just melted i do feel that he dosent get up to do things himself eg getting a glass of water or getting up to throw his rubbish away or get up to do a normal basic thing i feel thats whats holding him behind he needs to really improve on that xx
I wonder if you should have him checked for global apathy. This is what James has. He cant speak when he's commanded to speak and yes the speech therapy people have sort of given up on him. It's worth having a look to see what it is and whether any of the things he's experiencing have to do with it. Most of the therapists had no idea what it was until they looked it up.
That is so good that he cooked so independently. So important these little things that just are not little things at all!
Not a lot has been happening at this end. Our daughter has COVID I'm sure and I don't feel too hot myself. I'm also typing this from a parking lot because our car has decided to die AGAIN. And over an hour from home as well. 😑😑😑😑😑. STUPID CARS. When I finally get home I am going to have a very very giant drink!
😂😂😂
oh im so sorry to hear that oredi i hope your daughter gets better it could just be a normal weather change its happend to my niece to shes only 5 and shes vomting and sore throat and fever makesure ur daughter drinks alot
i will speak to the gp again about the global apaty i did speak to hi. about it a couple of months ago but he did say his on anti deppressants so global apathy would not affect him
you put your feet up once your in after all we deserve it❤️
(Sigh) unfortunately global apathy has very little to do with depression.
scholar.google.co.uk/schola...
There is a part of it which has to do with mood but a lot that many a GP just know nothig about.
A referral to a neurologist is the only option really.
This is frustrating. Few GP's are willing to admit that they don't know enough about this area because it's a bit niche I think.
We'll daughter was FINE the next day. Like it hadn't even happened, it was so weird 😂.
I unfortunately tested positive yesterday and knew there was something up on Saturday when I could hardly keep my eyes open. Many many napcidents occurred. I'm just glad the kids are at school so I can sort of recover and take the house back. Our youngest had set up about 4 dens in our living room unchecked yesterday. I'm wading thing things bit by bit. She took them down but it was a FIGHT. lots of tears, a fair bit of shouting (guilty parent).
Anyways. James fell and hit his head yesterday. He hasn't fallen in ages. But old habits of hanging onto and leaning in the wall have crept back in. So he fell HARD. He's quite tall so falls are slow but it's a long way to go if we can't rescue it.
Daughter went MENTAL. She's really affected by him falling but him hitting his head sent her on a bit of a behaviour spiral for a bit.
However she did load the dishes into the dishwasher for me. Poor blighter.
Anyways. What's news?
oh dear oredi i hope his ok this is the last thing we want for them falling off and hitting there heads it happend to my hubby a few weeks ago and i was si scared i just dont wana go through what i went through 18months ago im just about trying to move on feom the past
you know when your hubby was discharged from rehab did he have a package of care put in for him for home because i did and tomorrow iv got a review and im a bit stressed about that
hubby has been sleeping all day today not doing much his been like that over the weekend to
I hear you. I was annoyed because it was self inflicted (leaning against the walls = falling in this house.
We didn't really have anything in place. There was meant to be 6 weeks of something and then it didn't happen. And then they pitched up after the "Dark Week" as I call it. There was just no help.
A week and a half or so later there was a knock at the door.
We rejected it as they were only offering to help get him out of bed and give him a bed wash and then put him t ok bed at night. I said it would be bloody weird for us now that we've fumbled our way through for over a week and were pretty much having a daily shower. So no thanks.
That doesn't mean that we didn't actually need some sort of support.... Sigh.
Anyway. What does your review involve? What is your current package?
the current package is a full funding for chc involves showers toilet emotional support appointments but nither has this happend the stuiped carers that come in 4times a day only take him to the toilet n shower him but jay can wash him self the care package is not really what i want they give no emotional support as in come in and sit with im for 30mints have a little chat you know what i mean what i really need for him is someone to be with him a couple of hours a day which gives me a break and i can do my stuff but i know the stuiped chc they would never fund him something like that
i really need him to come off the stuiped sleeping pills his having at night he dont need them cause thdy just are making him sedated during the day but my gp is saying he still needs them and the stuiped carers give him them on the last call which is at 830 and i usually be at work that time
everything is just pear angle and i feel very stressed out for no reason and o yeah iv got a few greys to which is also making me very depressed cause i dont look after myself im getting all spotty and aging which isnt nice but i cant help it my first priorty is my husband i just want him to get better
and recently iv noticed his attention span is getting worse eg doesnt notice things or if someones talking to him or if the door rings or if the phone rings he just ignores it 😢😢😢😢
Helloooo!!!
I'll PM you 😁
hi oredi for some reason i cant see your pm everytime i click on it its just flashing but not actually taking me to the message 😒😒😒 i hope your ok
Message between ored13 and fity123r
Me
Hellooo,
Thought this may be a better option as the previous thread could keep going on forever 😆😆
Why does your GP think he needs sleeping tablets? I don't understand. Is he able to get on without them. Can he be weaned off of them maybe?
I won't lie I'm having a tough time at this end as well. And Oh the grey hairs!!!!!! It's awful. I've always expected by this age to have a few but I have LOADS. We seem to be going through this similar watershed moment. Where they are just not interested in life. Like they're in their own world and that nothing else matters but what is going to happen next in the thing that they're watching. Ah least that's how James is. It's so frustrating. I mean, are they interested in being part of things. It's just so hard you know. Just constantly trying to get him involved and into life. I think we are both just in a funk.
As your husband has capacity I think he should be able to say to the doctor that he wants to come off of the tablets. Or get a tablet box for the week and you put in how much of whatever he needs to take whenever. Just half the tablet and see how he gets on?
This is sounding awful I'm sure but we bloody know better than them. Doctors included. They are not there living in the situation. James was on an opioid that they put him on in the hospital for pain in his shoulder. I couldn't believe it. As soon as he got home I started weaning him off of them. The pain he had was not neurological pain...it was from inactivity! I was so mad. My sister in law and I were going to buy him placebos off Amazon because I think that addiction was setting in. Not to mention that the doctors had prescribed him 2 opioids that had adverse effects...which is what caused him to collapse in the 1st place. I don't trust the GP's as far as I can throw them. They have put us in this situation in James's case.
Anyways I don't want to drag you down my downer hole today 😆. The worry is that he is withdrawing. Maybe this has to do with him taking the sleeping pills. They are addictive after all.
Care package doesn't sound correct at all. One of 2 things will maybe happen. You will say that the package you have isn't appropriate for the stage that your husband is in....and they will withdraw it completely. Or they will adjust it. I think there is a thing where you can ask for the funding to be transferred do that you can source in care on your own? This is something that I've seen a friend do for her mother but it was a bit of a journey.
I would only be wary of saying that this had anything to do with you. I feel like in that regard they are only interested in what is going to benefit Jay and not you. You should ask your councils for a carers assessment. This is possibly a way you can get something that benefits you. Also where I live there is an organisation called PKAVS which is a carers charity/organisation run by the council I think. They are great. They have really good advice and activities etc. Is there something like that in the area that you live in? I'm also part of a carers Facebook group. I don't post in it but they have so much info if you have any questions.
Oh well. I'm going to get in with some of my random things. The house is clean. The kids at school and James is as usual still in bed. I'm unwashed and unbrushed 😆😆😆😆. Maybe I should take this lull and watch some daytime TV 🤔.
He may be in process himself now, what is happening. My husband can verbally talk but unable to talk about emotions and 2years 2wks in we have yet to go beyond 3weeks with episodes which only recently will be for 4 days at a time which is massive improvement from last year, it would be weeks on end. Its horrible but all I can suggest give space, make sure he's safe, letting him know he is loved and so lucky.
I am also full time worker (bills, kids) yet to have carers in and still waiting for husband to have visit at day centre for him to try out so he can attend, it's been in talks from November 2021 and previously and still now all rehabilitation at home.
Please look after yourself this experience and journey is rough and only 2nd year date March 2022 have I had time to really process and think I'm actually coming out of shock.
hi
thank you so much for your reply your right its so hard when you have to manage bills mortgage and also be a carer for someone you truly love and want them to improve but at the same time things are just going pear angle its extremely hard if it was not for my nephew i dont know what would have done
my hubby has improved alot from last year last year was so hard his improved in his capacity his improved on his walking and sometimes feeds himself he can do it but when he knows im there he will just stare at me and expects me to feed him
how is your hubby doing what happend to him how did have an brain injury ?
i have been giving omega 3 to my hubby which actually worked for him alot someone on this forum suggested it them
Not what you're looking for?
You may also like...
hypoxic brain injury and severe cogntion problems
hi everyone im new to this site in the hope someone can help me
my husband had a hypoxic brain...
Fiance in a coma..
I don't know if I'm writing for advice or suggestions but all I know is I'm scared and helpless. My...
How do I get through this
I feel like I am crying all the time. I hate it. I wish I can be stronger. My husband has been in...
mitazapine please help
hi everyone hopi g someone can help my hubby is on mitazapine 15mg to take at night his been on it...
Axonal Diffuse Injury
My son , aged 17 had an off road motor cycle accident one month ago. He was in an induced coma for...
Related Posts
At last!!! Well done James Cracknell and Beverley Turner!!
Hang on in there… life can get better… 
Post Traumatic Amnesia
hypoxia brain injuryModeration team
headwayukPartner
