I still get moments of frustration with my friends TBI after 2yrs 8 months.

[guitarlady]

Well Xmas for me and my friend nearly got cancelled due to a moment where I completely felt like he'd kicked me in the teeth - not physically though.

We were walking my dogs in the park when he told me he wanted to go home as his nephew, who has done nothing for him after his TBI was going to call round to him.

I felt really let down, worse than the other times I'd felt like that before and rang him up in the evening to tell him. He didn't realise how he'd made me feel, just said he wanted to see if his nephew was any different. After telling him how the way he is upsets me sometimes his nephew didn't really say anything.

He just keeps saying he knows it's his fault when I get upset and he'll try to do better - but it's not long before we're off again. He says he's fed up with never having a good day and just feels tired all the time which I can see.

We were friends before his TBI and I've done everything for him regarding help since April 2019. I've learnt such a lot from people on this site about the injury and the effects it can have on a person but am now a bit worried about the effect it's having on me.

We have just swapped our old motorhome for a smaller one and have been getting it clean to go away a bit more hopefully which he does enjoy and the dogs too.

It seems like he has no idea of when I get upset with him until I actually tell him which is sometimes very hurtful for me.

I've had 2 bouts of depression a few years back and don't want to go back there.

I guess I'm going to try and have some days to myself which I know I used to like but I don't want to feel so bad that I have to abandon him altogether as I'm on my own and I know what a struggle it can be.

We did manage to have a nice Xmas dinner yesterday and walk with the dogs at least. Going to watch the Panto tonight.

I wish you all a Happy Christmas and New Year. Take care of yourselves and thanks for listening. xx

[Pairofboots]

I'm sorry that you are still experiencing this. From reading your story, I think that you may have mentioned a few things that you can do.

You say your friend only recognises he has upset you when you tell him. You could try sitting down with him when all is calm, set out some ground rules, they don't need to be rock solid, just pointers. Decide on a trigger word when he starts to upset you, this could stop the situation from progressing. Have dedicated you time, and you and your friend time.

From what you say there seems to be communication problems, where you feel that you have to step back to avoid confrontation. This leaves you holding the emotions, when in some cases they are not yours to hold. It could be that your friend has developed maladjusted coping strategies following his injury that reflect some of the challenges he/she feels.

By setting a few boundaries, it will give prompts to highlight distressing situations, possibly discuss why, and what is happening, and allow your friend to recognise when they're being insensitive.

This might feel a little formal, but it is about opening up clear communication. Every relationship has boundaries, this is why they work. Following your friend's injury, the boundaries may have slipped a little. 🍀

[guitarlady in reply to Pairofboots]

Hi,

Thanks for your reply and Happy New Year. Funny you should say about saying a word when I get upset as sometimes if he's really grumpy and we're in the park I tell him he'd better walk home so he does. It's only about a 10 minute walk.

He's been o.k. over Xmas as I think it really hit home how sometimes I feel it's too much. Trouble is sometimes he stays nice for a few weeks then it creeps back in.

I'm going to try and spend more time on the things that I like. I love to watch the birds that visit my garden and since the Covid lockdown last year I decided to buy a wildlife camera and have put it on a tree in my garden to watch a family of foxes who come and 3 hedgehogs which is great. I still get excited seeing what videos are on the card each day.

Hopefully we'll be able to get some days away too in the smaller motorhome we've just swapped for our old one. I love the beach and the sea and the dogs do so we love to go to Widemouth beach near Bude in Cornwall. Along with my parakeets, cockatiels and pond fish that's enough for me.

He's done some cleaning on the motorhome for a couple of days and has said he enjoys doing something but I just tell him not to do too much in one go.

He's got a Doctors appt on Weds next week to check some things which are possibly making him so tired too.

Take care.

[Pairofboots in reply to guitarlady]

Happy New Year.

[Painting-girl]

Hello guitar lady, he's very fortunate indeed that you are there to look after him, and sort out all the things you have.. You're a very good friend, albeit feeling sad and cross.

You know, it's only a couple of years since his accident, and I can see why he would want to try reconnecting with his nephew again, particularly at this time of year when we tend to reflect on our family connections (was he fond of his nephew's parents, for instance?) but it sounds like he did it in an upsetting way?

I still find it hard to express myself verbally sometimes, and start repeating myself, not saying what I actually want to say, and feeling a total twerp. It seems harder to manage the social niceties because I just seem to blurt out things very bluntly - but I'm still me inside. But on the other hand, I know where you are coming from, because I'm having to do more for my mother lately, and when she's being grumpy I have no idea how to handle it, and end up feeling terribly hurt (match that up with a TBI-provoked short fuse and it's also a recipe for disaster!) The only way I can handle it, is to try to understand that she is as she is, and I can't change how she reacts to me, but I can change how I react to her ( ok easier said than done sometimes!)

He is likely still grieving for his ' lost self' (and possibly you are too?) and while I wouldn't excuse him just being horrible to you, try and remember that anger is one of the (possibly most) unfortunate ways we express grief. Also take a breath, and remember that one of our constant things in here, is that our nearest and dearest don't understand how we feel and what we cope with day to day. I seem to have had quite a lot of improvement in the latter part of this year ( though I did manage to faceplant the pavement last winter, which I suspect didn't exactly help matters along) but I'm still shocked at how I'm aware of, and impacted by, my fatigue every single day.

Has he had any specific help for dealing with his brain injury? Would it be worth talking to the Headway helpline (0808 800 2244) when they are back after the holidays about what sort of further help he could ask for? Neuropsychologists are often very good - for example, mine was great at helping me find ways of coping with fatigue, and understanding why some activities are more of a trigger than others.

Glad you've done some lovely things this Christmas x

[cat3]

Sorry life is still such a struggle Brenda. I'm wondering how badly your friend's short term memory is affected since his brain injury ?

I'm close to stamping my feet on occasions in denial of stuff which I genuinely have no recollection of (I even accuse folk of being delusional ...............until they're proved right !) But, aside from the neurological memory issue, not paying attention to people or events owing to feeling mithered & exhausted will likely be part of my problem.

So maybe your friend's aggression (and acknowledgement of it) means he's in a constant loop of being unpleasant and being reminded of it, without grasping it as an ongoing problem.

But (and this might sound patronizing or insulting to your friend) it's repetitive training which seems to work best. If each time he does or says upsetting things - you consistently walk away or ask him calmly to leave (reminding him why) he may become conditioned to thinking before speaking and acting. I know it has tinges of training an animal but kinder than the continual friction for him and for you....

It's horrid for you both having to get to grips with his new personality (like a bereavement for him and soul destroying for you) but I really hope there are better days ahead in time.

All best wishes, Cat x

[guitarlady in reply to cat3]

Hi Cat,

Thanks for your reply. Well his short term memory is non existant now. I am usually organising each day and what we do like getting the motorhome cleaned which we've just swapped for our larger one, this one is smaller.

I really was trying to not react when he does something to upset me for weeks and I've told him that when he gets tired I can see it in him and everything just goes out the window as he can't do anything when he gets tired.

He is tired now most days even by mid morning which worries me even more. He is 71 but since the TBI is a lot worse. I think I will contact Headway as suggested as the doctor when we went just sent him for a brain scan and the results showed nothing different than the brain injury he had from his collapse into the road. No signs of dementia so the tireness and moods must be from the TBI I guess.

The doctor has never suggested a neuropsychologist but I would have thought this would have been so useful from day one. He just came out from hospital with nothing in place like how he was going to get his meals, medication I got all that sorted for him.

I am feeling very sad for losing how he used to be and I know he is too. I don't think he's ever accepted he can't do things he used to do until quite recently. But now he gets so down which is when he upsets me as I don't think it does either of us any good.

I just can't seem to fell happy for long now even trying to look forward to going away in the motorhome makes me feel anxious as I don't know how I'm going to cope if he upsets me and I've told him this. Just sometimes seems like the only way to manage is to have time to myself which I was doing earlier.

I never thought it would ever be this hard but I'm not a quitter. The replies I've had are really helpful. Thank you all.

Brenda xxx

[Painting-girl in reply to guitarlady]

Hi Brenda, hope you can find ways to look after both of you.

When fatigue kicks in - sometimes an hour or two after getting up, organisation and memory go out the window for me. Basically fatigue makes everything harder. Other people spot it before I do.

The trick is to plan to take a rest break before everything goes to pot. So basically every 45-50 minutes he needs to zone out for 10 minutes. Laying down with my eyes shut works for me - no music, tv, books or talking. I can't cope with background music anymore, as it shoves me into overload pretty quickly (I'm trying to experiment a bit with that now though, and my tolerance is a bit better).

Consider adding a thirty minute break mid morning and afternoon as well.

I was coached, and told that things don't start improving until you can balance your fatigue, and not continually boom and bust. Once he's got a routine going, he can gradually introduce more activity, perhaps by a couple of half hours a week. It does work. This is the first Christmas that I've managed to pace myself in the run up to Christmas, and I don't feel anything like as bad as usual ( so far!) It was a bit quieter as well though to be fair... Hopefully January won't be as bad as usual, this time round.

The problem is, that early on after a brain injury, we often lack self awareness, which can stop us getting the right sort of support and help and doing things that will help. Then as self awareness creeps back in, it can be the source of a great deal of depression - which has very similar effects - like fatigue - to the aftermath of brain injury. So to unpick all this, professional help is very useful - and being offered neuro help doesn't mean it's all in the mind - far from it.

A great book, if you can get it out of your library, with a very useful commentary by a neuropsychologist on what things go awry, and what family and friends can do to help, is called 'Mindfulness and stroke - living with brain injury' by Jodie Mardula and Caroline Vaughan. (My local library didn't have it, but actually purchased it for ne to borrow). That and The Ghost in my Brain by Clark Elliott - who I think also does some stuff on YouTube, (but I haven't watched any of it through myself). Kind people on here recommended both of these to me, and each was quite a revelation in it's own way.

I think it's probably important that he's treated as having had a brain injury, rather than if he is needing geriatric help, so hope you can hang on in there for him and get some more support.

Jen x

[guitarlady in reply to Painting-girl]

Hi Jen,

Thank you very much for your reply. I'll try to have a look in our library for the books. Trouble is when he came out from hospital I did contact Headway and due to their workload they couldn't get anyone out to visit him and we would have had to do a 20 mile trip just to get him to the office in Bristol and I was working and he couldn't manage transport on his own.

I think like people have said on here fatigue is a big part of the brain injury and being in his 70's too with some previous health problems amounts up too.

We do take my dogs out twice a day then he goes home for his meal on wheels dinner so does try to have a rest then. It's difficult to see if he does as we don't live together. He has a carer for 2hrs once a week to help with cleaning his flat too.

We've just swapped a large motorhome we'd bought a few years ago for a smaller one and are hoping to get some days and trips away as we all enjoyed those.

When we even get through to his doctors surgery we'll see if he can get a appt with a neuro proffessional.

Thanks again, take care.

Brenda

[Painting-girl in reply to guitarlady]

Hi Brenda, sorry you couldn't get to see your 'local' Headway. The national helpline will be open in the New Year though ( they work office hours) and you can get help, advice and support from them over the phone on 0808 800 2244. Perhaps have a chat with them before seeing the GP and see what they suggest.

How is he after twice a day walks? I'm usually shattered in the afternoon, after I've met my friend for a bit of dog walking. When I was struggling, the deal I agreed with the physio was to walk halfway, have a break with a drink and a snack for 15-20 minutes, and then walk back, and then alternate the walk days with 20 minutes in the crosstrainer.

Glad he's got help with the cleaning, I'm still a bit haphazard with mine.😊

Take care 🌺

[guitarlady in reply to Painting-girl]

Hi,

Thanks a lot for your reply. I'll try to speak to Headway when they're back. My friend has a appt to see his doctor next Wednesday as he's getting up to go to the toilet up to 8 times per night recently which isn't helping with him feeling so tired. She wants to do a blood test as his sugar levels were slightly raised on the last one and also check his prostate which was enlarged and he has medication for that.

He's just started to get a lot more tired over the last few months. I can see it in him when he is. He does come out with me and the dogs but sits on the park bench for a rest too while I play with my dogs.

I think I'll mention him seeing a neuropsycologist when we go. Though as with most things I expect the waiting list will be a long one for their services.

I just think it must be very sad for other people on their own who have a tbi and don't have any help. I certainly would be very scared if it was me. You seem to have to fight to get any help which not all people are capable of.

Take care and Happy New Year.

[Painting-girl in reply to guitarlady]

You're right, it's enormously hard for us to advocate for ourselves and get help, I found it so difficult, I had to take either sister or my (grown) son in with me originally to appointments. Talking to the lovely people on the Headway helpline does help though.

My physio was very keen on me having a snack, like a cereal / fruit bar, and some water to drink when I was fatigued - he said it reduced the recovery time, and I found that it did seem to.

Your friend is so lucky to have you. You take care and wishing you a happy new year too.

[cat3]

The fatigue is a hard & fast long-term symptom for most of us Brenda, so if your friend is badly affected (as we often are in advancing years) he could benefit from definite rest periods throughout the day.

A timetable can replace the periods of irritability (& tension for you) with scheduled naps, say every 2 hours (or whatever's appropriate). It can take a few years to let go of old practices and accept the new lifestyle. But SO worth it when it becomes familiar routine.

If we think of how a young person struggles to make significant changes after brain injury, it's worth considering the massive shift for someone after a lifetime of 70 years. 😕

Friends like you Brenda are very, very special. I hope you find frequent spaces to protect your own wellbeing... 😏 Take care m'love. xx

[guitarlady in reply to cat3]

Thank you Cat. Happy New Year. xx

[cat3 in reply to guitarlady]

You too Brenda ; take care.. x

[New_beginning]

I know I have mentioned before guitarlady wish I had a friend like you. Your rare, stay strong x

[guitarlady in reply to New_beginning]

Thank you. Happy New Year.