Headway
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Frustration him and me

Hello

I want to know if anyone else shares the same frustration as me in their relationship with someone with a TBI, I don’t want to sound pathetic but it’s really starting to get to me. My partner has slowly started to neglect how much he is showering. I have to remind him everyday if he’s showered or has he cleaned his teeth. He is so young and should want to do this as he starts to smell and I just find it to hard to cope with. When we go shopping he always buys deodorant and aftershave and loves it, but it’s the routine of showering he can’t be bothered with some days. We are differing in this department but I’m finding I can’t deal with it anymore. He says he can’t be bothered or he just needs to rest. I’m well aware of fatigue management but he goes to the gym and works out and still doesn’t want to shower. It is creating a big divide and is starting to make us argue a lot. It’s so hard for me to bite my tongue because I am struggling to cope with our relationship at the moment. Anyone else find things this difficult as it’s such a small issue I’m slightly embarrassed to be writing this!

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Is this when he goes out? Or during a duvet day? Got to be honest if I’m off and shattered I don’t do much, other drink tea and rest!

This said I’d make sure I had cleaned my teeth at least and if I am going out a bath at least!

If your exercising you need a shower, possibly could be depression? You said he’s down? Or simply lacking the oompah to finish a job?

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It’s getting to be everyday it can be up to 3 days sometimes until I step in, or something clicks and he realises he hasn’t done it, I know what you mean I do the same. I think it might be depression but I’m not to sure because he goes out and about all the time

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Yeah up to 3 days is going to make your eyes water!

I’m assuming he wants to be clean but feels he can’t finish or work out how maybe? If I’m very tired I can end up staring at cans attempting to work out how to cook just not bother which is bad but sometimes can’t quite form the sequence of thoughts in my head?

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It’s rare he leaves it that long but he does need reminding especially when he’s tired, I think he struggles with sequence like you 100% but I guess that just takes time!

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I can tell you that sometimes especially after the gym I'm so exhausted and just do a sponge bath...but that's because I also have a mobility issue which makes things even more strenuous, and, I'm not in a relationship...

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Hi jess,

I am sorry you are having such a tough time.

It sounds to me like it could be depression or kind of him giving up on himself sometimes. You said he forgets? Do you think it is just he needs reminding or rather he cannot he bothered to look after himself like he did?

How much is he getting into the gym is it regular or just occasional ( on his better days)

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It’s ok it’s not always tough but some days or awful and some arnt, he does give up on himself quite a bit but other times the old nick comes through and proves me and him wrong. He can’t be bothered to look after himself as much I don’t know why but in the gym he is focusing on getting more and more muscular which he was before, he goes to the gym twice a week

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I think you need to just persevere with routine, can he shower at the gym? I think he probably doesn’t like not looking after himself really.

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No I think it effects him but he never tells me how he’s feeling he just says I’m going on at him and he gets angry, I am a woman who knows what I want so I guess I’m such a strong character I can be quite forceful at times I guess! But I was also his nurse so I think that has left me with bad habits as our relationship has changed so much since then

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This is a common symptom and depression doesn't have to be present, forgetfulness could well be the issue.

However I go to the gym, 4 time per week and having a shower has just become part of the regime, can't imagine not doing it but If I don't go forgetting can be an issue.

I also wonder how he is feeling, could it be connected with frustration and not wanting to accept his disability?

You shouldn't confuse his fatigue with physical fatigue and in fact TBIs with cognitive fatigue are advised to take up exercise.

I always recommend a book called Time Out Of Mind by Jane Lapotaire, some people feel it's too whingey but that because most people have not had the experience, it may help you both.

Other helpful books have also been recommended on this site.

Has your boyfriend seen the OT at your local Neurological service, as they help in setting up a regime and ways to help a person follow it.

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Maxgar is a weight loss supplement and before taking it a GP's advice is essential and it may cause insomnia, similar to having an espresso at night.

My approach 2 double espresso (4) first thing in the morning, plus you get lots of antioxidants.

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I'm not sure what you mean as we just agreed?

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It may be but at a Chronic fatigue course I attended someone was taking them and the advice was you must ask your GP to ensure they're safe for you to take.

I'm not medically trained but you may find that advice on the packaging.

Perhaps I should have made clear insomnia is only a possible side effect.

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Hi Jess I’m sorry to hear bout your situation but have you tried to get back in touch with the inner man?

I mean how is he apart from this? You said he works out so he must care about his body. Do you still have relations? Xx

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Hi lisamarie, yes I have and he is normally pretty good but he does struggle accepting his injury half the time as he was extremely fit and did sport everyday before hand, so he does care about his body he just gets lazy some days as he isn’t working at the moment but going to headway and speech and language at the moment, of course we do quite a lot xx

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The brutal truth, if you think he's lazy you probably don't understand the symptom.

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No I don’t think he’s lazy

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Sorry if I offended you but lack of understanding is the most frustrating things for a TBI and my prejudice came out.

This must be one of the few places where prejudice against 'normal' people can be found, I apologise.

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And he ran himself a bath in the end this evening so it just takes him a while I think x

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jess25 im talking from youre partners side now, i have an abi as the result of a stroke, its good that youre aware of the fatigue element but we also become lethargic which is also another symptom of the bi.

i shower when i want to, yes there are times when i can smell myself, but i just cant be bothered to get into the shower.

as youre young, you could get your kit off and try and entice him into the shower, see if that works!!!!

im not being rude, but you could be waiting weeks other wise.

welcome to the club, let us know how you get on

steve

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I don’t live with him and trust me he showers and other things while I’m there but I won’t go into that! But when I come back to mine and he’s without me he seems to just let slip a bit, thankyou very much I will

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jess25 going to headway with him is a great idea, although there may not be many wives or girlfriends, the unfortunate darlings who put up with us.

your best bet might be to join your local headway group that meats once a month, youll sit there listening to idiots like me and bingo a light goes on in your brain when you realise some of the things being talked about relates to your boyfriend.

word of warning.............never say to a person with a bi you understand, because you can never understand until you have a bi.

you may not live together, but from what you said, it does appear as though he relies on you.

steve

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I don't know if you've been to a Headway meeting yet but many friends/carers do attend.

One of the main benefits of these meeting is to share experience and gain support. Some have specific groups just for carers, if not you should be able to attend other group meetings and probably alone if you wish .

A lot of Headway group meeting operate on a open door policy, you can usually find details of scheduled meetings and services they provide on their Website or Facebook page.

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He attends headway once a week for a whole day, but I am thinking about going and talking to someone myself as I am struggling to with everything

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Hello, jess25, and welcome.

I held off replying to this initially, because I'm coming from 'the other side', and I didn't think I had anything constructive to add. I've managed to re-frame my thoughts, and hope I can type them up without skewing off on my usual "I married a dingbat" slant. (I married a dingbat, nobody made me do it, 'accept that and move on.')

I'm with sealiphone on you contacting your local Headway, 'we', as the brain-injured parties, and 'you' as the significant others are all individuals, with different experiences, backgrounds, and historical/complicating factors. All of us are flung into this weird new world without much cohesive support, the 'suck it and see' approach, in my humble opinion, sucks. I've had no productive contact with my physically local Headway, but that's 'me', not 'them'. (Gods, I'm us/them-ing, I wonder if I need to put a Prevent referral in for myself?) I have had some really helpful email advice from the Headway helpline, though.

There are a few angles I'm looking at your concerns from, again, I'll stress that brain injury isn't a one-size-fits-all issue, and I can only give you my perceived experience. (I'm absolutely not one-size-fits-all.)

As others have pointed out, there's the energy/expectations issue. This is in no way a criticism of you, or your standards, as I said, I'm coming at this from 'the other side', brief back-story, I married a dingbat, who spent precisely 0.04 seconds cleaning his teeth, and thought it was acceptable just to wash his hands and face in the bathroom sink, rather than showering daily. He worked in engineering. It took me MONTHS to get the oil-stink out of the house. It was like sharing a house with something that had gone off. We had different expectations in terms of personal hygiene, and it took me FAR too long to muster the courage to tell him that the smell of him had permeated every room in the house, and it was making me feel physically sick. I left it too long, and the resentment blew up in an outburst of me telling my husband he revolted me, instead of the more reasonable "I need you to wash more thoroughly, because my sense of smell is more acute since the haemorrhage." (And you're a disgusting dirt-pig, only washing the bits you can see is what six year old boys do, not grown men.)

My physical energy levels are a pain in the bits that are difficult to reach to wash, BUT I'm a clean-freak, I can't stand the sensation of unwashed hair, or 'grubby' skin, it makes me feel nauseous. I have to wash daily, and thoroughly, or I find myself deeply uncomfortable if I think I smell, the ex and I had very different expectations, and there wasn't a reasonable discussion until it was way too late. I'm not sure if "I need you to 'x' because 'y'." is still the suggested framework for 'difficult' topics, I might have dreamed it. As others have mentioned, if he can find the energy to go to the gym, he ought to be able to manage a hose-down afterwards, and I did smirk slightly at the thought of 'withholding privileges' if he's not up-to-standard. I 'lag' on a lot of basic functions now, I'll get out of the bath with the conditioner still in my hair, or try to put both of my socks on the same foot, a lot of my 'subconsciously competent' functioning has buggered off since the haemorrhage, I need to 'think about' functions that were autonomous 'before'- there's the potential that he might be blocking/avoiding hygiene-tasks because he now finds them difficult or distressing, 'just' becomes quite a big word when you're carrying brain injuries.

Another angle to look at is perception, physical, sensory perception. My ex had a very poor sense of smell, to the extent that he frequently shoved cartons of lumpy-milk under my nose, because he couldn't tell if it was off. (If you're going to need a knife and fork to get it out of the carton, it's off.) Many people with brain injuries have altered sensory perception, my ex was just a scruff-bag who didn't realise he smelled of oil, and that he needed to clean more than just the four teeth at the front of his mouth. Your partner might not be able to tell that he smells, the loss, or alteration of sense of smell is quite common after brain injury, I'm at the other end of the spectrum, if I could have asked for a super-power, it certainly wouldn't have been the ability to smell a damp towel from 3 rooms away, or tell what the girl on the till at Tesco had for dinner the previous evening.

If he can't tell when he smells, he probably doesn't realise he's frustrating you.

Routine. Now, I HATE myself for typing that, because I remember getting really stroppy with the rehab-woman who suggested I 'make lists' or 'draw up rotas' when she reviewed me about a month after the haemorrhage. I was still in the Very Angry Stage, and felt mortally offended that someone who didn't know that I was a high-functioning, professional type was suggesting jolly colour-coded charts, for whose turn it was to take the bins out and such. (Spoiler alert, I bet you can guess whose turn it always ended up being...) I hated lists, and enforced-routines 'before', but acquiring brain injuries has led to some re-training. (Toddler-taming in my case, I've just about cracked the washing/housework, the eating, and bed-time still need work, 3 years in.) Without 'mothering' or 'nagging' him (side-slant, I had so much guilt about the trauma I'd put everyone else through by nearly shaking a seven that I didn't feel entitled to ask anyone for help with anything. That was very bad management, but I didn't see it at the time.), he needs to get into a routine, before bits of him start going mouldy, or falling off. I imagine that Headway are familiar with similar issues, and might be able to give you some strategies, or potentially to have the discussion with him. Personal hygiene isn't nuclear-launch-codes level of priority for some people, but it's clearly impacting on your relationship. I feel a bit snobbish typing this, but if he's going to group sessions, and they're letting him sit there smelling like a bin, because they feel it's more important that he got out of the house with his trousers on the right way around, there's still work to be done.

It's not easy re-acclimatising to 'normal' life after brain injuries, but 'we' genuinely don't mean to make it difficult for those around us. By communicating your wishes and feelings clearly, possibly repeatedly, rather than allowing the issue to fester any longer, you'll have more chance of resolving them. Headway can probably provide mediation, they can certainly provide advice.

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Hello and good morning I read a little of your post and I relate to it I had a tbi when I was four yrs old, I get frustrated a lot and that tune into aggression, through out the years I have always found it difficult to remember to wash change my underwear, brushing my teeth, it is some what difficult to remember all of the stuff I can relate in many ways my partner also had to remind me to have a little more personal care but note this is where the frustration comes in it’s like she’s nagging me to do something and that’s where the frustration comes in then can turn to aggression, the main thing is when we go off like we do it’s not that we don’t care or love this person we can’t help going off like we do.

Many thanks Ian

Please note I don’t normally share posts like this but slowly been changed with the power of talking thanks to my partner please note that this is a slow and sluggish process

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Hi Jess, I know how hard it is to share, but this is the right place, we all are either the ones with tbi or family members.

I wonder could he be a bit depressed? Its a stage we seem to go through, Ive just had my stage but got in some tablets and therapy. I wonder if he could be feeling a little bit like this?

How long ago was his tbi? And does he have any professionals he sees?

I hope you dont mind the personal questions.

Lisa-Marie xx

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Hi Jess.

I have been wondering Wetherby to reply as it may not help. Then again it may.

I have the bi and can only comment on that side. It is easy to get out of a routine and let things slip. He sees showering as just part of life so fails to concentrate on building it into a routine.

This does not excuse this but can explain it.

He is not doing it because he can't be bothered but simply forgets.

You say when you stay with him he showers. This may be because you are a trigger for him to do so. When you are not there it simply goes from his mind.

This may be a long battle and may have its slip backs but keep giving the hints. It is worth it and help him build it into his routine.

I am saying this because I went through the same.....It took quite awhile to sort out and if I am honest I have to have a word with myself now and again when things slip.

Pax

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I'd just like to clarify some things we've talked about lethargy, depression and lazy along with forgetfulness.

However it's well recognised that an inability to instigate action can come from a problem with dopamine pathways, so in acute cases you have to imagine something like being frozen when you intention is to do certain things. After that you probably have to throw in things like fatigue, poor memory, depression and concentration, a perfect storm.

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Hi Jess, Your correct there are real added challenges when your in a relationship with someone who has had a brain injury. Some aspect of the relationship feel so normal , some bits better than normal, but there are some real oddities that just done make sense. On top of that no two people with or without brain injury are the same. So it always a matter of working things

I did chicken and egg questions daily and got no answer regarding . Is it him?is it Brain injuries.

I think it really takes commitment plus to work out how to make a BI relationship work.

Talking about feelings is hard but even more so when you may have low self esteem, loss of identity, and memory problems. It taken time but we're learning to talk about feeling and fears. My advice is start talking. What does he fear. What do you fear. We have a set time just to really talk when he is not fatigued and tired. I found that other things started to improve and fall into place.

I decided from the start that I would not be a carer. My partner as to be as independent as possible from me. I'm his support and he mine. Relationship are two ways maybe it just a cup of tea or cooking , hoovering,paying for coffee or having a shower everyday it about doing their bit where poss. BI makes somethings impossible not everything.

I'm quite firm when needed. It's not nagging when you support someone.

Not showering could suggestion depression but it could also be low self esteem. He may really be struggling emotionally not only with his own loss self but with fear of losing you.

Can you help boost his self esteem, my partner self esteem was so low. It's taken time but he feels confident and i hope he now feels secure in our relationship. It as taken a lot of hard work but he is worth it and I you do get pay back.

I just realised how important it is to get support this site is mine,headway and counselling when need maybe. Being in a BI relationship where you have complexity plus and where you have to give some much to make it work can not be done without support in my case

My feelings are if his self esteem and acceptance of self improve you be telling us you can't get him out of the bathroom.

Kind thoughts

Daylight

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