Struggling a bit at the moment.

Tell us a bit about yourself here.
Hi I'm new here. A bit about what's going on. I've been with my partner for 6 years now and help to care for him. He is legally blind , has end stage kidney failure and had a traumatic brain injury in 2001. In some ways I feel a bit strange about posting on here because he's very independent and manages to do a lot for himself but he does need help with a range of things such as cooking , collecting medicines and odd jobs when he is very fatigued or ill.

There have been some incidences of challenging behaviour , when he is overloaded he gets angry very quickly and can be verbally difficult and has broken things in the past. Since his kidney disease has got worse , these incidences have got more frequent. I have sought help from head injury charities who have given me very good advice. He sadly can't see that his behaviour is difficult and doesn't see any problems relating to the TBI. I 've been advised to get him to go to the Dr to have a brain scan because it's so long since he's had one, but he refuses to go.

One difficulty is that I have M.E. and so can be quite poorly myself . I work part time and am fortunate to have good friends and a close family who are very supportive. I am feeling a bit down at the moment because I feel like I am battling a lot of the time and am worried because I think he's depressed on top of everything else. :( :(
Hi Jayne,
Welcome to the forum, I hope you find it supportive.

Don't feel strange posting on the forum, you are definitely a carer.

You sound very proactive re finding information and strategies to help you handle the situation. It's a tricky one trying to persuade carees to get checked out. Hopefully others will be along with some suggestions/ advice.

Melly1
Hi Melly,

thanks a lot for your reply. I've found being pro active helps and hopefully by finding out as much as I can life will be a bit easier for both of us. Yes it's very difficult my partner refusing help at times but I'm learning that it isn't that unusual in our circumstances and so it helps to know I'm not alone :) .
Can you not issue him with an ultimatum? Have a brain scan or I stop (whatever - eg, making his dinner!).

The bottom line is we dont' do things we don't want to do, unless we are 'forced' to do them. If we can live our lives without doing the things we don't want to do, as your partner can, then why should we do them?

That said, his brain injury may prevent his brain being able to process that logic, so my suggestion may not work.

The main issue though is whether you spend your time 'dancing around him on eggshells' doing everything you can for him, while he remains uncooperative and even verbally aggressivie. Is this any way to live?

I appreciate he has substantial difficulties in life, but they are not your responsibility - you don't have to be his whipping girl, or his 'slave'.

I'm sorry to say this, but surely he should just be really, really, REALLY appreciative that you are doing for him what you are? Your relationship is not of that long standing, and isn't he 'lucky to have you'?????

Sorry if that sounds a bit unfeeling, but really, the 'balance of appreciation' has to be on his side, not yours!! That should mean he does what he can, as he can, to ameliorate your life. Though, yes, if his brain injury stops him understanding that, my argument may be useless.

On the other hand, if his brain injury is really problematic in the way it makes him behave, and believe, does it - should it??? - raise issues of what, exactly, is in it for you in this relationship?? YOUR life is important too, you know....

Final point, and less controversial (!), what are the doctors saying that a brain scan might reveal, and, more importantly, is it likely to reveal anything that is TREATABLE. If the answer to the latter is 'no' (as in, it's not treatable) is there any point in him having one? He may be very scared of the answer, is that the reason for his reluctance do you think?
Hi Jenny,

thanks for the reply and no need to apologise. I appreciate what you're saying. The TBI itself won't be treatable because once there is damage it's permanent but you can work on new pathways with certain treatments. What's happening to us isn't at all unusual from what I can gather from speaking to other people in the same boat, especially difficulties in personal relationships whether it's a partner relationship or parent/ child or other family relationships. The anger / blow ups are quite common and often the best course of action given by the nurse I spoke to, is to take yourself out of the situation ( as long as the other person is safe). This can be hard because as you say , it can be like walking on eggshells .

It also often gets tricky over time as damage doesn't necessarily show itself straightaway which is why I think the brain injury nurse I spoke to thought he should have one just to assess the level of damage. We weren't together when he had his injury so I'm having to do a lot of solo detective work . I do look at options such as maybe getting my own flat and that may be something I'll have to do but am trying to exhaust other options first. Thanks again Jenny :) .
My son is now 38, brain damaged at birth. I found it really frustrating that he seemed to be able to do some things sometimes, but wasn't consistent. I thought he was just being difficult.
Then I spoke to a very brilliant engineer friend of ours, who had slight brain damage as the result of a car accident. We were camped side by side at a steam rally, he knew what was the matter with M, and was asking me about his abilities/capabilities. He told me his own damage wasn't consistent, or rather the effects weren't.
Apparently one day he was approaching a roundabout, when driving, and just for a split second didn't know what to do, but worked it out, logically. A scary moment indeed, but after this conversation, I was much more tolerant of M, knowing that he wasn't just being difficult for the hell of it.
It sounds to be like your relationship is rocky. Please ask your GP to recommend a good counsellor so you can "offload" a bit, find strategies that might help you, and most important of all, whether it will survive long term or not.
Thanks Bowlingbun, :)

The consistency thing is very difficult. My partner is very intelligent, he's bilingual, loves astronomy but struggles with things like organization and obsesses about certain things and these things change . I think you're right about counselling . I have had some in the past but I feel like I have some extra information now that I didn't have then. I feel totally unsure about what to do and so some outside help in making sense of things would be very welcome. :-???
When I started counselling, I thought it was all a complete and utter waste of time, to be honest, but after five or six sessions I realised that I wasn't quite as heavy hearted as I had been. It will take time to get to know your counsellor and feel free to "open up". A good counsellor will help you decide for yourself what you want to do, but offering ideas to think about, a step by step approach is best, so you never feel unsupported.
Hi Jayne
Reading your descriptions of your partners behaviour I do wonder if he is also on the autism spectrum, high functioning end, which may never have been diagnosed.? It wouldn't make any difference if he were diagnosed so now, but it might help you to try communicating with him as if he were. It might also help to know how to cope with him when things and routines change. If I am wrong, just altering communication may help, and if it doesn't nothing and no-ones been harmed
Here's a link to autism UK page about communication
http://www.autism.org.uk/about/communic ... ating.aspx

Kr
MrsA
Hi Mrs A,
Thanks for replying. I must admit I have wondered about this too. I used to work in a learning support department with a couple of boys with Asperger's . I think it would be very unlikely that he would be willing to be tested but any communication information is useful as are any thoughts on new strategies to try . I will take a look. Many thanks :D