Looking for advice

[Laylablue]

My husband acquired a brain injury in 2001 from a RTA. I met him after his accident and we've been together for 10 years. We've managed his behaviour on our own and although we've had our ups and downs we've muddled through. This last year though his behaviour has deteriorated (memory, confusion, obsessive/inappropriate behaviour) and I don't know what to do or how to help him. I'd be grateful for any advice.

[Danger19]

Hello my lovely,

I'm so sorry that you are experiencing such a difficult time. My only advice is something you have probably already considered. If I were in your position I would get some medical advice. Even if it is just from your GP, remember they can refer you to other medically qualified professionals who will be able to help. I know you may find it difficult to put this idea to your husband but despite his brain injury he must have some understanding of the difficult situation you are in. You can reassure him that you are only suggesting further help to improve his quality of life and to ensure your relationship can survive what is an awful situation. I'm not for one minute suggesting he is aware of how his behaviour is affecting you and relationship. But he may consciously consider his reactions to certain things if you both discuss the effects of his responses to certain situations.

I know it's a long shot but it may be worth knowing, I don't know if it will apply to your husband but it may help. A Neurologist friend of mine told me that damage to right frontal lobe can play havoc with an individual's emotional wellbeing. Not just considering anger, aggression, depression etc but also confusion, obsessiveness, etc. Also any injury to the pituitary gland can cause diabetes and sometimes an unawareness of inappropriate behaviour. Could any of this relate to your husbands Tbi? One more thing, when a person is recovering from a Tbi, we are constantly told to give them plenty of time to fully improve. But we must also consider how hard our brain works every minute of everyday and following a brain injury we have to consider the initial damage and how it will be affected over time by having to work hard every second of every 24 hrs.

I sincerely hope you find some answers that help. Please remember this is not your husbands choice to behave the way he does and the husband you know and love is still in there somewhere and loves you unconditionally my friend.

I wish peace, happiness, good health and plenty of luck,

Vikki

[Laylablue in reply to Danger19]

Thank you for taking the time to reply to me and for your advice.

I had considered making an appointment with the local GP but was unsure if this was the route to go but after reading what you have said, I will do that. I confess that I'm ignorant of how to access help and what support there is out there.

He suffers with all of the above (except diabetes) and he doesn't always recognise that his behaviour may be upsetting or cause offensive.

It's difficult because his accident was so long ago and he has made such amazing progress since then- like many others that I have read about on this forum he too was in a coma and then a rehab centre for 6 months. He had to learn to walk, talk and be self sufficient again. I feel though that friends and family think that he should be ok now and that (maybe I'm being paranoid) but that I'm using his injury as an excuse or to accept his behaviour.

I also don't want to sound like I'm knocking the progress he's made, it's amazing and most of the time no one would ever know he'd had an accident but if we could both learn how to better deal with situations and look out for signs of stress that lead to his obsessions, I think that would help.

Thank you again.

[cat3]

Hi Layla and welcome. BY managing your husband's issues by yourselves it's possible your man has missed out on some valuable therapy which might have addressed some of his behavioural problems. Many folk here have benefitted greatly from CBT or other forms of counselling for certain aspects of their behaviour such as anger issues, inappropriate actions/remarks and emotional lability.

The memory deficits and confusion are issues which most brain injury survivors struggle with long term, but ones which can be managed more efficiently through brain training and repetitive practices, alongside various reminder techniques..

I was determined from day 1after discharge to progress without 'interference'. But I realised after 12 months that intelligence and common sense can't always compensate for intervention from specialists who've seen the issues countless times and, as outsiders, can approach matters more objectively than loved ones who're often emotionally drained and out of ideas.

Try for a referral from your GP to a cognitive therapist. And, perhaps 'til the appointment comes through, your doctor will consider some medication to calm your husband's disruptive symptoms. I hope you find your way towards getting the help needed for you and your man. Best wishes, Cat x

[Laylablue in reply to cat3]

Thank you for your advice. I will make an appointment at the GP and hopefully this will be the first step for us.

I think that he would relate to what you have said about 'interference', he spent so long learning to be independent that he thinks he can't ask for help/ doesn't need to ask for help.

What you have said about memory training and confusion is really encouraging and something I know that he'll be receptive to, as he gets down about not being able to remember things and irrated when he can't formulate his thoughts, as he says.

Thanks again, it means a lot to know that there are other people who understand, sometimes it feels like you're on your own.

[SillyPhil]

Hiya. I know that it can be tough having a partner with brain damage. I had my accident in 1998. My marriage didn't survive the changes in me that it caused. I remarried in 2016. My Wife is lovely but she does struggle with me sometimes. I appear Ok but find things hard. Fatigue, memory problems, organising, planning, sorting.. I'd suggest using your GP to get you both sat infront of a Neurologist. And, if you don't already, find a local Headway Group so you can chat to people who understand. I didn't get any benefit from CBT. They just seemed to want me to keep trying to be the person that I was pre-accident, and the advice from Headway is DON'T keep pushing yourself as you could be setting yourself up for repeated disappointment. Good luck x

[Laylablue in reply to SillyPhil]

Thank you. I've contacted my local headway today and they have been really helpful and given me lots of advice and information.

I met my husband after his accident as it sounds like you have your wife. It can be hard but I wouldn't change my husband and I'm sure your wife feels the same about you.

It's been really encouraging to hear from people on here that have had similar experiences, so thank you again.

[SillyPhil in reply to Laylablue]

Any time Laylablue. I still find life tough as I really miss the pre-accident Me. Even after 20 years I keep trying to do stuff that I used to. But I can't. So I probably seem discontented a lot of the time. But if I hadn't had my accident I wouldn't have met my lovely Wife. Swings and Roundabouts. I wish you well x

[Broken_Doll]

Hi Layla,

I am sorry to hear that yourself and partner are experiencing difficulties.

As Cat stated, it seems as though your partner may have been initially overlooked. The first step going forwards (as others have said) would be to see your GP who can refer to the most appropriate service. I am not sure where you are located as not all services are as regularly available trust-wide (postcode lottery) but I think Neuropsychology seems appropriate, they would assess him and either work with him or if needed refer to other services such as Neuropsychiatry.

I had a lot of input, two years in fact from both Neuropsychology and for my more complex issues such as sleep (or lack of) and PTSD I saw a Neuropsychiatrist. Don’t be afraid of the name, they were amazing and I learnt how to manage my behavioural problems and come to terms with what happened to me.

I wish you all the best!

Emma x

[steve55]

how does your husband react to strangers? before my abi id talk to anyone, wasnt bothered about going out on my own, now, i hate strangers, wont go out on my own, if we go to a pub or a restaurant, my wife has to make sure its not noisy.

as far as inappropriate behaviour, language is concerned, my wife is always on the look out for possible flash points....in the shops against fat people, against muslims, etc. i was also left with a speech impediment....i swear continuously.

for my temperament, i was given the choice of epilim or carbamazapine, both of which are used in the treatment of epilepsy, which i also have as a result of my abi, along with adhd and organic personality disorder,( meaning i can be sweet as a nut one minute and want to rip someones head off the next. alls well when my wifes here, she talks to me and rubs my arm) , if you are offered these, take carbamazapine, because epilim piles the weight on.

[Laylablue in reply to steve55]

His family have told me that he's a different person now to what he was before the accident. Almost the opposite to yourself-before his accident he was quiet and more of an introvert but now he will talk to anyone and is very outgoing. He says it feels to him like he's been born again.

This is a problem only because he is too trusting and people have taken advantage in the past, especially with money... the amount of bank cards we've had to cancel. Also he can be over friendly and he has a habit of saying out loud what I or others might be thinking, which is amusing in some circumstances but it has caused offence more than once!

I hope you don't mind me asking but what kind of things does your wife look out for and how do you manage difficult situations like the ones you have mentioned above? I'm just wondering what more I could be doing to diffuse situations when they arise.

Recently my husband says he doesn't feel himself and he keeps waking up feeling like he has a hangover and he's exhausted all the time. His routine has changed recently and I'm wondering if the changes in his behaviour could be linked to that...

[steve55]

its the early hours of the morning when i go to bed, so i have my own room so i dont disturb my wife, i usually get up between 10 and 11am and have a 2hour nap between 4 and 6pm.

if we re in town and she sees something, shell distract me by showing me something in a shop window, shes more successful in town than in somewhere like tesco, she will tell me off for my comments.......... the problem is, we cant help it, we dont weve said something wrong until we re told, if we say something and you laugh then we think weve said something funny.