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Hi - Page 2 - Carers UK Forum

Hi

Tell us a bit about yourself here.
Thanks for your reply David, sorry to hear that, it’s not fair is it. I guess in times of extreme stress illnesses come out. After 3 years of looking after mum when the end was near I started to think that at least life would get back to normal, and it never did.
I am glad to hear your partner is now in remission.
You are so right, you have to get the positives out of these situations. Spending time with your partner supporting each other through illness makes you so close. Not everyone has that in their relationships with others so I guess we are the lucky ones in a strange way.
Oh dear, yes, I sort of suspected that if he'd had to give up work, it must have been because it would be dangerous, as, indeed you describe.

I'm wondering, though, whether - at least for a hobby, if nothing else - he could take up something, like, say, ceramics, or painting. Something that requires his manual skills and dexterity and spatial expertise, but which doesn't involve dangerous tools that, were he to have a seizure, would obviously be dangerous for him to be handling at the time (does he get any warning at all, for him to 'down tools'??)

I would argue strongly that even if he can't find something that will 'earn a living' in any way, or contribute to it (ie, money making), that he still try and do 'useful things'. Can he garden, for example (no, not shinning up trees with a chain saw!!!!). Could he do any volunteer work that is 'useful but safe' for him.

I'm saying this because we ALL need a 'sense of usefulness and purpose'. Idleness is soul destroying, and so is feeling 'useless'.

Even if he hasn't been a 'book person' in his life, could he take up 'book learning' - ie, anything that isn't manual. Is he good with figures? Can he do any maths? If so, can he train up in, say, accountancy. Can he do any volunteer accounting for charities or whatever, or anything 'pro-bono'.

Even if he is 'only' helping the house, or with the household budget, as I say, he has to find something that makes him feel not a 'spare wheel'

In terms of the exercise, would I be right in thinking that it is better for him to do something 'routine and regular' rather than something that he is not used to doing any more (eg, the sudden swimming at the beach?). I appreciate cycling might be out, but can he take up jogging, say (eg, with you or another adult to be on hand, just in case). Something that is 'low stress' (I believe seizures can be triggered by stress or over-stimulation?) (I can remember being told not to try and soothe him while he was fitting and not to talk and not to touch - his brain was being 'over-stimulated' electrically, and he did not need any more 'input' from me, even well meaning - does that sound true do you think for your husband?) (B y the way, just noticed I said ' fitting' - I gold told off on an American forum for saying it, as it's a real 'no-go' word, like 'spastic' has become over here!)I(I think it's still OK to use it here??) (maybe not?) (convenient as it can be used as a verb, which I don't thing 'seizing' can!!!)
Hi Emily,
check your private message box have sent you some info. Lisa needs to be supervised most of the time unfortunately, there's is occasions where she's left for a couple of hours for example when I go and do the shopping or pick up meds. We have to be forward thinking and keep Lisa as safe as possible this usually means ensuring she's been to the toilet before I leave and she's on the sofa or lying on the bed, our daughter at 16 is also a big help.
It doesn't matter how often seizures occur if your uncontrolled it's a serious situation, never let your husband take a bath alone or shower, so many people with better controlled epilepsy than Lisa loose their lives by taking risks. The medication can sometimes be worse than the actual seizures themselves, this isn't your husbands fault like it's not Lisa's and we just have to support and try our best to understand what they're going through and how they feel deep inside (it's not easy).
As for coping in public, I can sense when Lisa isn't good in which case we wouldn't bother going out. We spend a lot of time in North Wales which is our retreat from home as we're unable to fly due Lisa's situation. In public having seizures doesn't really bother us, we do take a wheelchair with us to make life easier getting back to the car but Lisa will walk if ok. In our experience the general public still don't understand about epilepsy and tend to look in horror rather than offering to help, this is getting better though. I'm sure your husband is a lovely person and it sounds like you love him very much, fight for the best possible support, from help in the home to treatments. PM me anytime if you want more information.
Paul
how's things been Emily? has the forum helped?
Hi, apologies for not replying for a few days, I guess that here as we are all carers you understand more than most people do when you can’t always reply straight away 😊
Paul, thank you so much for your posts and the info that you sent, it is so good to talk to someone who understands the daily life for a person with epilepsy. I was told at first that I probably wouldn’t be eligible for carers allowance as people with epilepsy “don’t need” a carer which is so obviously not true. I feel judged that I care for my husband by others who just don’t get it because they don’t live with the effects of epilepsy and how it effects every day of your life. They don't realise how vulnerable that person is without another person around who can catch them when they fall and keep them safe until they regain consciousness. People say things like “ oh well, it was only a partial” and “once they find the right medication they’ll be fine”. His family are so uninvolved they have never even seen him have a seizure so they have no idea how serious the condition is and how it makes him feel. It’s so frustrating. I guess people only really understand the impact of any illness when it directly effects them.
Knowing that other people can lead a full life despite epilepsy means so much. I guess we are still in the adjustment phase and I feel that we are hopefully looking forward now and thinking of the future. Epilepsy is not going to go away and is part of our lives now so we have to find a way to live with it. I feel exactly the same Paul, even though we do not have it ourselves, because our partner has it it is a massive part of our lives. It’s like we share the condition with them. I worried that we were becoming codependent but I guess it’s inevitable in our situations isn’t it? But like you say, it makes you get on better in a way. Gone are the days of falling out over silly things. At least when you know your partner has a neurological condition and is on medication that can effect moods you’re not going to take it personally if they are having an off day. I have found my inbox now and read your blogs which have been so helpful. Thank you so much. And yes, talking on here has been really good too I feel a lot more positive about everything now.

Jenny, it’s funny you mentioned about gardening as this is the one thing that has saved him. He finds it hugely beneficial being outdoors. Being unable to work has had a huge effect on his confidence but he is still an amazing gardener. Probably a combination of fresh air, sunshine and nature but also having a purpose too. Very therapeutic for him. 😊
Emily,
you're doing brilliantly, as carers we have busy lives so don't feel you have to reply back, as long as the information is helping you both that's all that matters. As for gardening Lisa also enjoys that but she can't do too much & has to supervised, at our holiday home she loves doing the flower tubs and feeding the birds , Lisa's other interests are cross stitching and baking, again not always possible but she loves it, people with epilepsy can be very creative Lisa was really good at art at school many years ago now ! before her epilepsy progressed but she has the same touch when it comes to arranging flowers and the different colours.
Paul
Emily, hi - I'm glad you're feeling more positive. It's the old 'a problem shared is a problem halved' (well, at any rate, a BIT halved!!!), and just knowing that other people 'get it' and that there are so many of us out here in Careland with a variety of 'carees' but all united by the fact that we cannot 'live our lives entirely for ourselves' and we HAVE to take into account, to varying degrees, 'responsibility' for another human being. We are not 'free' to do what we want...

(Yes, for folk like me, my 'carer-ship' is very, very light now - I basically just write checques for the care home my MIL is in, and visit her every few weeks - she is in the westcountry, and I see here when I'm down there, usually once a month - she has no sense of time any more, barely recognises me, and to be honest, I spend five minutes with her, talk to the nurses about her, then another five minutes 'chatting away' to her while she stares at me without recognition or understanding - or doesn't stare at me! - and then I kiss her and leave....that's it really.....)

It's interesting what you say about people not realising just how dangerous epilepsy still can be. I think we assume that it's like diabrtes, and providing you take the meds, etc, you're 'fine'. I used to work with someone I had NO idea he had epilepsy until another colleage mentioned it in passing and I was amazed!

Yet, quite close to me is a care home for people with SEVERE epilepsy, and I sometimes see the residents being taken out for outings, in wheelchairs, and they are clearly in an incredibly 'bad way'....(possibly with other health complications as well of course).

Then 'somewhere in the middle' is the wife of someone I know slightly, who has epilepsy but is 'not too bad' - as in, yes, she can't drive, but she cycles around, and again, you wouldn't really know she had it. She has attacks, falls, and the hubby has to be 'careful' but you wouldn't think it a 'life-threatening' condition.

And then again, a neighbour of my MIL lost her husband to epilepsy as he seems to have had a fatal seizure while showering - all quite nightmarish.

It's clearly a very 'varuiable' condition. In a way, it is like cancer, as in, folk can have 'mild' cancer, so to speak - a quick lumpectomy, a spot of radio, a course of chemo maybe, and then bobs your uncle for at least five years, with routine scans every now and then etc tec. Or, of course, you can collapse, be taken into hospital, and realise you have only weeks to live...

'It all depends'.....

Asthm is another of these highly variable conditions - my son had very mild asthma as a kiddie, carried an inhaler, used it occasionally on cold days playing footie at school. Yet there are those who die of asthma, even in this day and age....

Anyway, I'm glad your hubby likes gardening- it IS 'life affirming'. But I do think it's important for him to develop new skills, and maybe retrain for something else that is 'desk-bound'. What subjects was he good at at school for example? Was it more 'woodwork' than 'maths'? More 'creative writing' than 'French'? What is he 'naturally' good at do you think? Can you build on that?