Another visit to see my Son and more advise please. - Headway

Headway

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Another visit to see my Son and more advise please.

Cotton50 profile image
30 Replies

We have been told at the rehab unit, my son, can be very abusive verbally to the staff, and evidently yesterday to another patient, he refuses sometimes point blank to do any exercises and sometimes just will not cooperate which I understand is difficult for the staff. There is a question mark as to whether they now feel he is suitable for a rehabilitation ward. This is alarming as he still can’t walk and forgets information quickly, he can’t even remember where he is now or where he lived, although his memory is good in other areas. Our worry now as his family is where will they send him. We have accepted that he will not be moved to the North West now for rehab, and it looks as though next steps will be my Son allocated in the area where he is now. Has anybody had, with a relative, or themselves experienced anything like this where they were not suitable for rehabilitation?

I did speak to my Son and ask him to try not to be rude and use such language and he said he will try but he is so fed up and bored and that in turn makes him feel angry. I am frightened that he may push the staff to far and discharge himself - he has nowhere to go and couldn’t live on his own, but I have to admit he is a handful when he gets in these awkward moods. I am scared for the future, but he cannot see the whole picture and how his behaviour is making things worse for him.

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Cotton50 profile image
Cotton50
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30 Replies
bexx87 profile image
bexx87

Can you not give him something to relieve the Borden like a figet cube or a adult colouring book or music to try and calm him or memory games?

Cotton50 profile image
Cotton50 in reply to bexx87

Bexx87 thank you for your excellent idea yes I will be out tomorrow to buy both for him. I just never gave those idea a thought.

bexx87 profile image
bexx87 in reply to Cotton50

Your welcome :-) X

Pat-rick1 profile image
Pat-rick1

Be there as much as possible he needs you all now 👍

Cotton50 profile image
Cotton50 in reply to Pat-rick1

Yes he does and we will thank you 👍

cat3 profile image
cat3

My god, you must be exhausted from this continuous worry. I'm not suggesting a 'chemical cosh' arrangement, but would your son agree to take a tranquiliser or mood stabiliser (assuming his doctor agrees) to reduce his anxiety and ease his aggression.

Maybe it could help him focus on the efforts needed for his own rehab and wellbeing ? Bit of a long shot perhaps................... x

steve55 profile image
steve55 in reply to cat3

its the way youre approached as well cat.

i was on epilim a my mood stabiliser, but that piled on the weight so my neurologist is slowly introducing carbamazapine, ill be completely off epilim by the middle of may.

Cotton50 profile image
Cotton50 in reply to steve55

They are trying to reduce and change his seizure drugs, but as you will know it takes time getting meds right

cat3 profile image
cat3 in reply to steve55

Antidepressants can cause weight gain but not so much ant-anxiety meds (unless you count the extra pounds from shedding stress & eating better).

I've no experience of anti seizure meds Steve, but I know from others what a lottery it can be to find the one that's right for you.......

Good luck with the changeover ! x

steve55 profile image
steve55 in reply to cat3

bless you

Cotton50 profile image
Cotton50 in reply to cat3

Thanks cat 3.

steve55 profile image
steve55

hi, this is your typical problem of so called professionels not unstanding a person with a brain injury because they havent got one.

the anger comes from frustration and like me, it may not be a good idea to just thrust a stranger on him or hes likely to tell them where to go.

for some, it takes time to get to know and more importantly trust a stranger,this can cause confusion and anger and aggressive behaviour.

im on this journey, i also hate noise, i can act inappropriately both indoors and out and i swear.

the son you knew before isnt this one and if you can youre going to have try and learn to love him again, it maybe painful at times, there will be tears on both sides but try and stick with it.

now you have some to show so called experts, who know very little about the after care once a person needs physio and the like.

goodluck

steve x

in reply to steve55

Feel for you Steve I also have issues with noise although it has improved to what it was. X

Wiltshire profile image
Wiltshire in reply to steve55

Yep me too. I avoid conflicting situations. Was prosecuted for letting off at a headmaster. Public order offence. He got me into a situation that I couldn't get away from in time and he suffered some verbal abuse with anger. It happens.

I found Valium helps but I only use it from time to time as it is very addictive. I actually feel reasonably normal when I've taken 5mg of that.

Cotton50 profile image
Cotton50 in reply to Wiltshire

I think it must be very hard, if it’s a physical illness that people can see there is much empathy however people are not very tolerant even the professionals with what can’t be seen.

Cotton50 profile image
Cotton50

Hi cat3, this was actually discussed today with the doctor very briefly and they would only think of this as a last resort or if he attempted to discharge himself. for his own safety. thanks for the reply appreciate it. x

Cotton50 profile image
Cotton50

Thank you so much Steve for your advice, it helps me to understand a little better my Sons frustrations.

Calrich profile image
Calrich

Hi cotton 50, when my daughter was in we took colouring books, dot to dot books, word search books, jigsaws, magazines, connect four game, Jenga game all books bought from Amazon for adults lots of choice. If he is not safe to be on his own or a risk to others they will put a deprevation of liberty safe guarding order in place, I know that happened with a few people while my daughter was in for there own safety x

Cotton50 profile image
Cotton50 in reply to Calrich

Thank you Calrich all things I never thought of taking. I will be shopping tomorrow and will take them in for him next week.

Calrich profile image
Calrich

Pleased to help, just been reading your posts, the whole rehab situation is shocking, when they do get a place nhs it's a constant battle to get what they need, not enough staff etc, then when they come home it's even worse nhs physio twice in 9 weeks, the only way to go is to pay for private which we have been doing since July last year there is no choice, my daughter was supposed to be seen by a doctor 3 months after discharge and Botox given for her spacticity , she was seen 5 months later after a lot of nagging, keep fighting it's the only way to get what's needed x

Cotton50 profile image
Cotton50 in reply to Calrich

My goodness that is terrible and so unfair to have to pay for something we are all lead to believe is available. I wish your daughter well in her recovery.

Calrich profile image
Calrich in reply to Cotton50

Yes it is terrible, I remember her rehab doctor saying to me we need to get her as well as we can while she's in here cos once she's home the services are just not there. I hope your son gets the rehab he should and continues to recover, it is a long long road x

Wiltshire profile image
Wiltshire

Get him a guitar. Buy an acoustic for under 100 pounds it can be very therapeutic and will engross him in the learning of it.

If he has access to UTube and he just types in guitar lessons for new learners he will be playing tunes in no time and this hobby totally distracts people from just about everything else going on around them.

I have found it absolutely brilliant for improving memory. I have a used cheap one here he can have for free if you pay for the shipping if you want to do that and cannot afford to buy one.

An electronic tuner will probably be necessary as well, I don't have a spare but for under 10 pounds you can get them.

If you want the guitar please email me on bill.webber@ntlworld.com

Bill

Cotton50 profile image
Cotton50 in reply to Wiltshire

Bill, that is so very kind of you. At the moment he can’t use his right arm and hand very well however I will keep your idea in mind for the future 👍

cat3 profile image
cat3

Cotton, forgive me if his is a silly question, but is your son able to use a compouter/tablet/laptop ? x

Cotton50 profile image
Cotton50

Hi Cat, I’ve just read you are stuck indoors with a slipped disc, feel for you and I hope your recovery goes well. No unfortunately my Son is not computer friendly. But hopefully will be in the future. x

cat3 profile image
cat3 in reply to Cotton50

Thanks so much for your good wishes m'dear ; really appreciated ! 😖

xx

Hola Cotton50,

I very literally - have ignored 'HealthUnlocked' for about 2 years :/, but I saw your question via preview in my Outlook and having a very similar experience & likeliness to your sons personality, I wanted to see if my input could help in any way and I really hope it does.

In the beginning of 2014, I had a traumatic brain injury, brachial plexus injury (my left arm was for lack of a better word - dead) and 4 months in a coma. I was transferred to a rehabilitation centre where I made the treacherous journey back to myself. Over that time and with daily therapy & support, I re-learned to speak, walk, eat and the list goes on.

This response is not about me though and I'm only sharing the bigger personal picture to hopefully find common ground with your situation so my words offer support/help.

I don't know what physical circumstances resulted in your son having these 'issues', but if it has anything to do with the brain, I feel I get it.

Like with me, as time passes, he will progressively become himself again (the man he was before the injury) and that does mean that certain aspects of his 'being' will present considerably more strongly and because of his injury he may for the time being, be unable to break down each new situation in his head like a 'normal' person would so his mind takes him to anger/negative/physical responses...

It has been nearly 5 years since my accident and I still face a multitude of emotional and physical issues.

Sometimes, my brain finds solace (passage to peace) by responding to 'fear' or 'discomfort' by lashing out and it's my wife that faces the consequences which deeply hurts me. I am not going to suggest 'forgiveness' by excusing his behaviour because treating him the way you have always treated him is what he needs to hopefully regain as much of ol' him as he can. Maybe the best way to support small changes in him would be to make him aware of what he's done (same day, but a time after his latest incident) by calmly and descriptively explaining what happened and how he responded. You could then ask him calmly 'now that it's been some time - do you think you would have reacted differently if the same thing happened again?'

Your son is still and will always be an individual and human being so injury text books aside, try to remember that 'self awareness' has been my biggest hurdle and it could very well be his. Maybe spend less time attempting to fix your son based on your basic expectations and as hard as it is, look at yourself and accept that you do not have his issues and because of that, because you're his loving mother, you are best equipped to get him through this stage of his life and by remaining positive you will best support him.

[Time] is the greatest healer and recovery for your son takes time. I was 25 when my accident happened so my understanding of the world around me was still in it's infancy & like most 25 year olds, I had loads of energy and never enough satisfaction. With time I have developed into more of a man, but I still have a long way to go and if you were my mother, I would ask you to find it within yourself to understand and accept that I love you and in the deepest part of me I see what you do for me and appreciate everything. One day, he will be more himself and when that one day comes, he will I'm certain, say thank you Mom.

I've rambled on a bit I'll admit it, but before I shut up, I just wanted to touch on the 'He might discharge himself etc' fear you shared by suggesting that perhaps you could start talking to him about the next step by saying things like "You need to get out of here soon, but obviously you need to get a little better/stronger first".

Acknowledging his view is probably going to give him a humungous sigh of relief and relating to his desires should open him up to soaking in the 'get better first' and hopefully propel him forward to recovery.

Good luck with everything and the world needs Mom's like you :)

Caio,

Markus

Cotton50 profile image
Cotton50 in reply to

Thank you for your words and I will take heed of what you have said, and put into practice your next steps advice. I wish you and your wife well, take care.

Elkay_1954 profile image
Elkay_1954

Hi Cotton - just seen this post... My son was in a similar situation at one time after his brain injury. He sometimes verbally abused the kind nurses in the rehab unit and often absconded altogether! In the end, for his own safety he was tagged and so set off an alarm every time he went through the main doors to the rest of the hospital. Its a horrible and distressing time and very difficult to judge how you can best support someone in this condition. Hang on in there - it will get better. How long ago has he been in rehab? x PS My son and I have a laugh about this now and we still have the tag he cut from his ankle when he finally 'escaped' back home!

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