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Hi - Carers UK Forum

Hi

Tell us a bit about yourself here.

Hi

I have just registered and wanted to say hi to everyone here and tell you a bit about myself.
I have been a carer for about 5 years, when ny mum was diagnosed with terminal cancer. I was also raising my family and working part-time. I gave up working when the demands of juggling all 3 got too much and i was diagnosed with fibromyalgia. I cared for my mum when her health deteriorated and she wanted to die at home. With support from amazing macmillan and nhs nurses and mums friends we were able to fulfil her wishes, although palliative care was extremely hard for everybody involved.
3 days before mum died, my husband had a seizure and was subsequently diagnosed with epilepsy. He cannot work due to these seizures and also has mental health issues so i am now caring for him. I have joined this forum as it can be so lonely caring for a family member and it can feel like no-body else understands. Hoping being on here will help me chat to people who have been through similer feel less a bit less isolated.
:)
That seems particularly wretched - to have seen your mum out, and then to have your husband become ill immediately afterwards seems SO unfair.

Do you think the mental health problesm were there 'anyway' or are they caused by the epilepsy, or exacerbated by them (as a neurological consequences) or that having epilepsy is depressing him (ie, a psychological cause)(it wouldn't be surprising, alas).

I hope the docs can find an effective treatment regime for him - I know it can be a bit 'hit and miss' until they get the dosages correct of the anti-epileptic drugs.

It must be very frustrating to him that he can't work any longer - but can he put his skills to some degree of 'usefulness' that he would find fulfilling?

I do know that for men losing the allowance to drive can be very 'heavy' - far worse for them than it is for us.

If so, I'm wondering whether he might be able to do 'track days' at private race courses - or simply drive 'off road' on private property??
Hi Emily, welcome to the forum.
Can I ask how old your husband is? A real cruel blow for the family.
Is he claiming all the benefits he is entitled to?
THank you for your replies, just looking through the nessage boards i feel a bit better already.
He is 36, had his first seizure in 2014 when he was 32. It was written off as a one-off until oct 2016 and hes been having them regularly since then (tonic clonics and partials) He is on PIP and ESA and I claim carers allowance.
He doesnt have a licence so that is one thing we do not have to worry about (he was having lessons and had actually had to cancel a driving lesson on the day he had his first seizure) but he feels that in other ways. He lost his job and with that his confidence, and he feels guilty for not bring able to provide for his family. So many things he liked to do before (climbing, swimming etc) he has not been able to do. That in turn has also destroyed his confidence.
The mental health side of things is a real chicken and egg situation. The problems were there before but he buried them for years and now the epilepsy has brought then out. I personally believe that his seizures are a physical manifestation of his mental health issues as the two seem to go hand in hand. EEGs have detected an abnormality in his temporal lobe that may have been there since childhood.
Yes it was horrible timing, especially as i was my mums sole carer, had no funding for overnight nurses for mum and only one nurse visit a day. Luckily she had really good friends who rallied round, i dont know how i would have coped.
Emily, hi again.

I'll say from the start that I have very little experience of epilepsy, except, sadly, in the 'worst way posible', in that my husband developed it from his secondary tumours in his brain while he was dying of terminal cancer some years ago.

He only had mild seizures, but they were quite scary enough. That said, we did seem to get 'warning' of them, and could usually tell when one was about to happen, which was helpful.

How much warning does your husband with 'real' epilepsy get, and how severe are they, and how debilitating? Are they being well controlled by AEDs or are the docs still 'tinkering' with the dosages etc etc? Is he eligible or suitable for any kind of surgical intervention etc etc.

Are you 'up to date' with latest research, treatments etc? I found it invaluable to seriously 'mug up' on my husband's type of cancer, and to that end I joined every carer/patient forum I could. I found the US-based ones particularly good for the sad reason that the USA usually gets the latest treatments (for those that can afford them of course!!!!) long before the NHS forks out for them, so that enabled patients to get very 'clued up' about what was POSSIBLE medically, and not just what the NHS considered 'affordable'.

I know it can be daunting, and it can also be depressing, to 'mug up', and sometimes scary too - I would see folk 'fall off' the forums as death caught up with them, and so on, so I do appreciate it may not be an 'easy' thing to do.

But do, please always be aware that the NHS will not necessarily tell patients what is 'out there' if it is not availbe on the NHS! (That' where 'patient power' comes in - we only have to read the newspapers to see what clamour for a new treatment CAN achieve if the demand is vociferous enough)(and NEVER be fobbed off with the old excuse the NHS trots out that if they spend to much on one condition they have to pinch on another - RUBBISH! For a start, the drain on the NHS from alcohol/drug/sugar abuse is vast!!)

One of the things that, alas, I know from my husband, is that when chronic illness strikes, as it has your husband, we do all have to accept (because we have no choice....) that we have moved into a 'new normal'. It's hard to 'let go' of the old normal, where life was as it was. But by accepting a 'new normal' we can, at least, try and manage it to the best that is possible, to minimise the adverse impact, and still get as much 'good out of life' as we can.

It really does boil down to 'go on or go under'......
PS - I can understand why climbing could be dangerous (the last place you want a seizure!)(And I remember from my husband that stress/adrenaline etc could bring one on!) , but surely he could resume swimming under 'managed circumstances'??

Obviously there is a danger of drowning if a seizure takes him, but if he were swimming with others (say in a club), with lifeguards on duty, and in the lane by the pool's edge, with someone watching him, could he not then swim with sufficient safety? (Unless, as above, the exertion itself could trigger a seizure)

If both of these formerly popular sports are now prohibited, what else could he take up? For example, I don't know, archery maybe? Something that avoids or at least reduces any triggers, and is, of itself, not 'dangerous'.

How well does he himself manage seizures? I believe patients have no memory of them, is that right? How well do YOU, or those who know him, cope?

What did he do for work, by the way? Could he retrain for something else that is, like potential sports suitable for epileptics, not in itself 'dangerous' (eg, not something like long distance lorry driving!).

I hope I'm not sounding to Pollyannaish, but society at large can't just 'write off' those with epilepsy and condemn them to a life of perpetual 'invalidism' and exclude them from the working economy! Your husband has skills and abilities - we all do - and the task is to find how they can mesh with a safe usage in respect of his illness.

No one wants to feel useless or dependent - it leads to depression all on its own, let alone anything else!

Is he in comjunication with others afflicted by the same condition, and can that help him move forward into a better 'new normal' for the years hea??
Hi Emily,
welcome to the board. I was really sorry to hear of your Mum, my Mother-In-Law also wanted to die at home and the nurses were brilliant, she died back in 2005 with Brain Cancer. It was especially hard for us as she was the main carer to her daughter (my wife) as she's had severe epilepsy for many years with regular seizures which do cluster at times, to make the situation even more difficult our only daughter had just turned 3 at the time.When my mother-In-Law first went down hill and could no longer help us i had to ask for a care needs assessment for my wife's epilepsy to try and get support in so that i could continue working. We have had a care package which has worked really well for many years and i've manage to keep working, i say that but when i get home i begin my caring role as you say it's hard work. Epilepsy is especially difficult and not many understand how a person can go from one minute being fine to being unconcious within seconds where they are at risk of injury or SUDEP. My wife has had epilepsy since the age of 7 (now 46), I'm guessing there's options still to work through with your husband/partner with only being diagnosed 4 years ago?, don't give up there's many different drugs to try, possible surgery or maybe VNS or DBS even Diet or meditation where stress levels are reduced.
I'm pleased you've got ESA and PIP sorted, but if i can help with anything just ask as there might be one or two other things available to you both. I really hope your husband/partner gets his seizures under control, it can be a very stressful time you just have to keep supporting each other the best you can make the most of good days and on bad days don't take harsh words/bad moods too seriously......well that's what we do anyways :lol: :lol:
Wishing you all the best
Paul
from Derby
hi emily i also cared for my mum for around 15 years up to her sad death in 2012.3 weeks or so after i lost mum my partner of 20 years was diagnosed with stage 3 bowel cancer the cancer is now in remission but the treatment has left him disabled and now find my self in a caring role things are so hard right now i am struggling with the loneliness also the financial issues are a worry , however i wouldent change a thing as my wonderful partner is home . so keep your head up lady and be proud of what you are achieving all the best dave
Sorry for late response I have not been online much over the weekend. Thanks for your replies I will reply to them separately or I will confuse myself. 😊
Jenny, I am sorry to hear about your husband. It’s inexplainable watching someone you love die. Yes the seizures are scary, the partial complex seizures are terrifying for him as he becomes completely detached from reality while conscious, and he says it feels like he’s fighting his own brain to stay alive. These happen when the seizure stays in his temporal lobe but sometimes it spreads to all for loves and causes a tonic-clonic seizure where he is unconscious and having convulsions, which puts him at risk of injury or SUDEP. They are frightening to watch but I have almost got used to it now, it’s becoming a normal part of our lives now so yes I guess we are adapting. And yes I have done so much research since his diagnosis just to try and gain some kind of understanding of it all. Knowledge is power especially in these kind of situations. It’s made me really interested in neurology, the brain is fascinating!
We try doing activities such as swimming etc I think it’s a case of getting his confidence back, we had a massive setback last year when we went to the seaside with the children. We went swimming but he had a partial seizure in the pool, then went on to have several more then three tonic-clonics in the night ending up in hospital having a brain scan..It is these sort of things that set us back and stop us going out and leading a normal life. 😔 We’ve spoke on my other thread about the lack of support from others and this doesn’t help his confidence as we haven’t got many people we can trust helping to empower him.
The work issue is a very sensitive one, he has worked every day since he left school in very manual jobs. He used to do industrial cleaning in confined spaces and roof work on high buildings.. He obviously gave this up after his first seizure (So glad he did, think deep down he knew it wouldn’t be the last one!) he did find other work but it didn’t end well and the less said about that the better. He’s always loved building, using power tools and climbing ladders have always been part of his everyday life. I think being told that you cannot do the things that you know you are good at has had a huge effect on his confidence, which is why being diagnosed with epilepsy has had such a devastating effect on his life. 😭
Hi Paul, thanks for your reply. That must have been a very difficult time for you and your wife. Reading your post gives me hope, your wife has lived with this condition for so long and it sounds like it is more severe than my husbands. I would love to return to work part time at some point and so to know other people find a way to do this is encouraging. What plans do you have in place for if she has a seizure on her own? What is your experience if/when it happens in public. We are very frightened of this and this fear is stopping us from doing the things we want to do.
He is on two different AEDs and has the option of increasing the dose of one if needed. He suffered terrible side effects at first which had made him very anxious about changing meds or dosages. He only has one functioning kidney too which doesn’t help matters, as he has to stay on a low dose and doesn’t want to overload himself with a cocktail of drugs. There was definitely an improvement in symptoms when he was started on Lamotrigine in both his seizures and his moods.
Yes we try and keep a sense of humour, it’s an amazing coping mechanism! You’ve got to laugh instead you’d cry. 😊