Husband impatient with my epilepsy side effects.

[Bloomcounty]

I have temporal lobe epilepsy, controlled with medication, and one of the main side effects I have now (from both the epilepsy AND the medication) is a really poor memory and poor concentration.

Normally my husband is pretty supportive, although he does roll his eyes a lot when I've forgotten something "yet again". I use a diary, notepads, I leave myself notes on the stairs etc where I'll see them, and things should go on a calendar in the hall. Apparently last week he told me he was going to spend this evening in the pub with his mates. He mentioned it again to me this morning, and at that point I could not remember him telling me about it last week. I have no memory of being told, at all.

This afternoon he got home from work just after 5pm. He sat with me to have a cup of tea, and a chat about a few things, then went upstairs at about 6.30 to shower and change (he works a manual job) whilst I cooked dinner.

I was wondering why he seemed really anxious about dinner at 7.45.....it was almost ready, but not quite. Then, at 7.55 he suddenly said he had to go, he'd be late. I must have looked at him blankly because he just erupted, saying he'd told me this effing morning that he was going to the pub at 8, and he was pissed off with me.

I did ask why hadn't he said it again when he came in. Apparently I should have remembered it from this morning. He shouldn't have to remind me of everything all the time. I asked again why he hadn't even mentioned it when he got in, as I could have had tea on an hour before I did instead of chatting with him and making him a cuppa, and I just got "oh it's my effing fault now is it?" snarled at me. I feel shit. I feel absolutely shit. I genuinely can't help not remembering, and now I'm sitting here in tears whilst he's in the pub with his mates and probably blaming me for his being 5 minutes late.

I don't know what I should do. I take all the tablets. I try, as much as I can, to remember everything I have to. I probably didn't remember this trip to the pub tonight because I wasn't going to go. I suppose he could accuse me of not caring, but he was in the house for almost three hours before he reminded me about it.

I'm sorry, I just needed to let off a little rant. He's not a pub goer normally or a drinker, and they were meeting up to organise an overseas trip, so yes, it is important to him, but all he had to do is give me a wee reminder earlier. Is that too much to ask?

I don't think he told you at all and is using your epilepsy as an excuse to say you had forgotten. Otherwise as soon as he got in he would have reminded you wrt to tea etc. He's gaslighting you i feel.

His effing and blinding... that's just nasty behaviour. And turning it back on you is unacceptable. He doesn't sound very kind.
Even if he HAD told you and you HAD forgotten this would be unacceptable on his part because relationships have to be built on respect.

Let him cook his own damn tea op. I'm a lone mum and if someone made me so much as a cup of tea I would cry tears of gratitude.

I don't have an illness but i still forget stuff my kids have told me because I have a million little things to remember. I sometimes nod or say yes to my kids without really listening because 3 kids are talking to me at the same time whilst I'm doing something else. My eldest will get frustrated but they have to suck it up. I do generally have a good memory though but I still put it all down on my phone. In your case I'd have a small diary where I'd write everything in it as soon as you were told. Unless you are happy using your phone. Then tell your family to tell you and wait until you've noted it down or it didn't happen. And in my opinion, your husband forgot to ask you or didn't want to for some reason or it was a last minute thing and is using your condition to his advantage.

WOW what a dick. I am sorry for what you're dealing with at the moment. My lovely mum ended up with Epilepsy after a severe illness years ago, it honestly took years of different medication and levels to find the right one! I cannot believe how he is behaving. Does he realise that epilepsy is literally life-threatening?!

I think it's awful he is being like this when you are the one dealing with the condition, medication, and other limitations like not being able to drive, etc!

"I'm going to the pub tonight, can we have dinner early?"

"Put it on the calendar and remind me when you get in, otherwise I won't remember"

He has been completely unreasonable and downright nasty here. You are doing your best. A loving partner would help you, not make you feel worse.

Thank you everyone. I was feeling really sorry for myself last night. Thank you for whoever told me to stop crying, I really needed a bit of straight talking and you really helped!

He apologised when he got in last night, and we've had a long chat about it properly this morning. I did remember, when he mentioned it again in the evening, that he'd said about it in the morning, but of course it had left my head within minutes. He said I needed to look on the calendar, and I told him that it wasn't on the calendar, so even looking wouldn't have helped last night!

All in all, it was a bit of six of one, half a dozen of the other. All he had to to is say "mind I'm heading out at 8pm" when he came in at 5.30ish. It's not rocket science. I'd have done something quick, rather than a curry from scratch.....

I also explained that I need details, not just a couple of words. For example, he's going to a gig later on in the week. He's put "Gig" on the calendar. I've asked him how the hell I'm supposed to know what time he's planning to leave, where it is, if he needs to eat before he goes or if he'll grab some food when he gets there, from the word "gig". I cook from scratch! I can't rustle up a meal in 10 minutes. I need more time than that, or we just keep a stack of pot noodles in the cupboard and he can fend for himself.

We're going to use some of the techniques you lovely lot have given me. We're pretty old school, and technology is way beyond his abilities, so we're going to have a diary in the kitchen with DETAILS in it of anything we're planning. Basic info can go on the calendar, prompting me to look in the diary for the details. If it's not written down so I can see it, I'll likely not remember it. He's just going to have to accept that, as annoying and frustrating as it is for us both.

I definitely need to speak to my epilepsy nurse though, as I'm really aware that my memory is getting worse. So that's on my list of things to do. It's so frustrating. I feel like I'm brain damaged sometimes. The info just isn't there, or is locked away so securely that I just can't find it. It's really weird to experience not being able to think of simple words, or form a coherent sentence sometimes (without the fun of at least being drunk).

I'm glad that you had a proper talk about it, sounds like you've got a good plan. I wonder if getting an Amazon Echo/Dot or Google Home would help if you aren't great with technology? You could just talk to Alexa/your Google Assistant and ask her to remind you at the right time.

There's definitely an air of the Parent/ Child dynamic in your relationship. You can't help your memory issues but hie can help being a lazy git.

There was a reason he didn't mention it when he got in and the PA huffing and puffing was a a deliberate act. I understand that you don't want to dwell on this but unless he understands his motivations for behaving the way he did, the chances are, it will be repeated.

Good luck but you should let go of the guilt because it contributes to your infantilising of a grown arse man.

He said I needed to look on the calendar, and I told him that it wasn't on the calendar, so even looking wouldn't have helped last night!

What did he reply to that?! Sound like he was being an arse!

We have a weekly planner-if it’s not written on it, it simply doesn’t exist!

I've just downloaded and printed weekly planners for the rest of year, and transferred all the info from the calendar onto it. I've also put in the things that I have in my own personal diary, so it's not just about him, but MY plans are also there.

I'm going to use your statement Holidayshopping - if it's not on the calendar, it doesn't exist. Thank you all again.

Glad you have had a proper chat about it.

To be honest, while him snapping and swearing at you wasn't great, if he feels like he's carrying the 'mental load' all the time, it does make you want to snap sometimes.

When women on here moan about them having to remember to do all the mental load, everyone's really sympathetic - but how is that any different to this really?

Good luck talking to your nurse too, must be really frustrating. They may be able to switch you to a different treatment with fewer side effects.

Mental load? Do you mean household stuff, like shopping and cleaning and taking responsibility etc? Cos I do all that. All of it, apart from the dishes after dinner, and taking the full bins out for emptying. All I've asked him to do is remind me in good time of HIS planned social activities so I can plan when and what to cook for HIS dinner. It's hardly a mental load.

I guess I'm the mental load. I keep being given leaflets by my neurologist about SUDEP (a lovely cheery thought - Sudden Death in Epilepsy) and how I'm not supposed to be alone in the house, or go out for a walk alone, or have a bath with the door shut, or cook without supervision, and how likely it is that I'll just die in my sleep one night (yes please, I think that would be a lovely way to go).

but not yet. I'm not quite ready to go yet lol!

The SUDEP stuff sounds horrible and must be a real worry and stress for you both.

How are you both coping with it? Maybe that's what's stressing him out. too.

Maybe it IS worrying him. I'm refusing to let it worry me. I take my medications properly (got one of those magic boxes divided into days etc, so I don't miss a dose) and I do follow the advice I'm given, despite my relatively cavalier attitude in the above post. I just don't focus on the negative aspects. What would be the point? Plus, and this is something that I've discussed with other friends who have potentially life-limiting conditions - death doesn't scare me. Not one bit. Obviously I don't want a painful death, but the actual stopping of life....what's so scary about that? I know it can happen at any time. My brother dropped dead at 44 years old from a cardiac arrest. There one moment, gone the next. Over and out. It's probably a bit callous, and it was absolutely horrific for us all at the time, but for him......how easy was that?

Maybe he dwells on that stupid sudep more than I think he does. I don't give it a moment's thought, not because of bravado but because I know it won't make a darn bit of difference, and why spoil a perfectly nice day by thinking of something that may, or may not, happen?

Food for though GreenFingers Thank you

I like your attitude, I think I would be similar. Best of luck with it all.

"When women on here moan about them having to remember to do all the mental load, everyone's really sympathetic - but how is that any different to this really?"

Green you really can't see how this situation is completely fucking different?!

My sympathy is reserved for you here Bloom, not your DH, who seems to have acted like a bit of an arse, IMO. You have memory issues which are not your fault, your DH fucked up on the measures you have put in place to assist you both, fair enough as mistakes happen, but then to blame and guilt you is very unreasonable.

I have (unfortunately uncontrolled at the moment) epilepsy which has affected my memory, especially short term, quite severely. I know full well I get wearing to live with, especially as I ask a question, promptly forget asking and the answer, and ask again five minutes later. And rinse and repeat.

I know full well for DH it is probably like living with someone much older and developing dementia, which is the only thing I can compare it too. It must be very hard and frustrating and cause impatience and I appreciate that. I frequently tell him so (and then repeat it five minutes later ) and he knows I am trying my best. Equally I know he is trying his best and would never deliberately make me feel bad. The mask may slip occasionally (and his impatience is betrayed) I am sure, but he would never swear and snarl at me, and I don't think your DH should either.

There is a difference between expressing your genuine feelings of weariness and frustration but leaving you in tears is not the way to do it. I think the way my DH deals with it is it by feeling annoyed and frustrated at the epilepsy, not at me personally. He also appreciates it is also very hard for me, and also a little bit terrifying sometimes to have such little awareness of things that have happened, but I just don't remember.

It is hard for both of you but you still deserve to be treated with kindness and supported by your DH, in all things, and this is just one of the things in your life. You are making the effort, I can tell and he should respect this and be kind.

PS I have stuff written all over my hands and arms usually And I have an appointment booked with the epilepsy nurse as the consultant said there are techniques they can advise me on to help with memory retention.

Another thing that helps, is to have stuff texted to me, not just said out loud, as I seem to retain it better from reading and can refer back to it easily. Eg shift rotas for the next few days, what time we said we would be somewhere.

It is really hard, I know.

Ironically, my consultant told me there was an actual name for that "on the tip of my tongue, I can almost remember" feeling - and I have forgotten it

Exile (((hugs))) to another one with a speshul brain. My neurologist says I have "word salad" which sometimes comes with interesting and unintentionally funny consequences. I forget basic words. I once asked OH where the round thing that tells the time was. I could not, for the life of me, remember the word "clock". My medication is well balanced for now, although it took three different drugs to get one that I'm okay on. I get so tired with it though, although I don't sleep well. When I'm tired, I lose my ability to speak properly - I say one word but mean another.

Do you get word order disturbances as well? I can be writing a sentence (handwriting) and the words come out on the wrong order. Right words, wrong order. I watch myself do it and I can't stop.

You made me laugh with the notes on hands too.....I now carry a notepad at all times, so I can do a quick scribble and not look like a tattoo artist had a vodka bender before practicing on me.

Don't be mad at GreenFingers, it's okay what she said. I did actually understand what she meant and wasn't offended or upset. She helped me a lot, to see it from a different perspective. It is difficult, sometimes, to appreciate that others may not be dealing with the situation as well as you are. Yes, it's me that has epilepsy, but I do drive the poor man mad sometimes....most times, if I'm honest.

Thank you xx

ps yes yes yes to having things written down. If it's not written down, it didn't happen or isn't planned. I'm awful.

My husband has epilepsy and struggles with his memory as well. We cope with a shared online calendar and everything goes in there, with correct start and end times and booking details if relevant.

However his memory has been getting progressively worse. I've been coping with it, but he's becoming frustrated. This came to a head when he couldn't remember anything about a play we'd been to see a few years ago. I did my normal minimise and calmly talk through what happened with enough details to spark his memory, but nothing resonated with him at all. The day's just gone. He's now worried about forget things about the baby and their childhood, so it's prompted to go back to the neurologist and get referred for some more tests. They're doing some full day memory tests with him, an EGG (or and EKG I can never remember which one) and then maybe an MRI as well. It's frustrating because his meds are controlling his seizures right now, they're just exacerbating his memory issues.

Definitely go back to the nurse and push for investigation. You shouldn't have to put up with this and there are other meds that might suit you better.

I have some sympathy for your husband's frustration as well, it's really hard living with someone who can't remember day to day things. But he needs to help you manage your symptoms better (calendar, reminders etc). My frustration with my husband come from me suggesting two years ago that he should raise the memory issues with the nuro and it taking him so long to come to the same conclusion.

I'll definitely phone the nurse tomorrow to see if I can see her. The memory thing is getting worse, for sure. I can't tell you how many times OH will say "we've seen this already" when we're watching a tv show and I have absolutely no memory of it. Not shows we've seen recently - maybe something from a few years ago. Nothing. Not one thing is familiar.

I have no memory for faces at all any more, either. Or when something happened. It all goes fuzzy after a while.

Does your husband have really vivid dreams, Si1ver? Sometimes my dreams are more real than reality.

Oh YY to the word salad and word order, DH calls me Yoda

One of the most annoying things is that I seem to have lost my ability to spell and use grammar correctly (and I used to be a bit of a grammar pedant too ). It's little things like having to stop and think "is it their or they're" which is totally alien to me. And nowadays when I see threads like "AIBU to want to punch people for using it's incorrectly" it makes me consider going to Netmums (maybe that's an exaggeration )

S1lver yes completely forgotten lots of things. It makes me sad to think about the bits with DC's I can't remember but the consultant did say memories can start to come back although it takes time, so I'm hoping. On the plus side, I have overflowing bookcases and a Kindle and lots of them are new to me now, so that's a treat!

Also the same with films etc, weirdly I have been drawn to the ones I do remember, and watching them again. Maybe it's a comfort blanket thing? I also think we are lucky that we have so many photos accessible to us these days, I have loads from the last few years to jog my memory, sadly my DC were little before camera phones so I have to rely on old school photo albums!

One thing I also found comforting/helpful (this will sound sad!) is reading old MN threads I was on...bear with me! This is a recent NC but I have been here over 10 years and post on a couple of long running special interest threads and reading them back has given me references mostly of things I have bought on MN recommendations of things I have forgotten but the prompt of re-reading does bring it back a bit.

I've found writing all this down very helpful too, actually, and it's made me realise I do offload a lot to DH and should rely on other avenues too. Perhaps that might help? (We don't really talk about SUDEP either, like you it's something I can perhaps minimise but not change so I don't want to spend my time worrying as it could be a slippery slope. There seems to be enough to worry about really!)

Oh, thank goodness there's someone else who understands the wish (in fact, I'd say it was a need) to rewatch old films again. I find so much comfort in that. OH thinks I'm weird for being drawn to something familiar, but perhaps that's the reason why - I understand it, and don't need to keep stopping and rewinding, just to try to get a grip on what's going on.

I'm a big lover of detective shows on TV - Morse, Lewis, Endeavour etc. I have to watch each episode several times before I really and truly get a grip on the story, all the little side stories and the background to the various events. It's just too much to take in, in one watch. I do the same with books. The first read is often a "get the basic storyline" journey, then the second time I read I get a bit more flesh on each of the characters and the plot, and then with each subsequent re-read, I see more and more of the details.

I guess your old threads could be viewed as a diary Exile. What a useful thing to have. I'm fairly new here, so don't have that legacy to look at. I love being able to read old threads though, even if I'm not on them, as there's so much amazing information shared freely on here. I love the generosity on here if you ask a question. Everyone's so kind about sharing their knowledge.

Bloom we sound scarily similar! I know exactly what you mean about the film familiarity and not having to "work" so hard! I love Columbo and watch them over and over again. We also watch a lot of cooking competition shows (I am on lots of threads about these ) like GBBO but find it hard to remember/distinguish between the contestants until there is three of them left

Your post made me think - I used to keep a diary/journal but stopped a few years ago, so I am going to get back into the habit. It will be a useful record for me, and hopefully encourage my spelling etc to come back. And I can buy a new fountain pen which is always good

How are things with your DH now?

I might join you on the diary thing. I use one to list what I need to do each day in terms of work, but not one to record what I HAVE done, outside of my work. Maybe that would be a good thing to do, to help me retain the memories. Or, at least, read over and see what I did each week lol. Thanks, that's a great idea, and I'm going to steal it.

Things are fine now with OH, thanks. He didn't know how difficult I was finding things, because I don't whinge in general, I just get on with life. We've sorted out a weekly diary, and he knows that it's entirely his responsibility to fill it in with his activities. All in all, whilst I was really upset on Monday night, it's been a positive thing as we understand each other now.

Plus I have (I hope) some new friends on here who understand me and how my strange mind works. Having someone understand is amazing.