New member having a bad day

Replies

By Sparhawk73

Re: New member having a bad day
Wed 11 Jun 2008 20:19

Hello Laura , I Jason im 35 and for just over a year been my wifes full time care. i used to work full time but this became harder after we moved in to our flat in Nov 2005 after staying with my folks for 6 months after rescuing my now wife Lou from Bad situation. She is 24 on the 25th june and has cebral palsy. It is hard for people who do not have to deal with a disabilty or a medical condition of a loved one to understand what we go through all the time . Hope we can help and support you with our love and understanding maybe see you in chat room some times.

Jaosn (sparhawk73).

By ann31bel

Re: New member having a bad day
Wed 11 Jun 2008 21:03

Hi Laura welcome to the carers site. I hope you come into the chat room sometime it is very good and you can moan and meet lots of nice carers.
My 15 year old has Epilepsy and has had seizures since he was 4 months old. They are nasty things to get use too and the person needs lots of care and love which I can tell you supply to your partner. Some times I find other people do not realise the extent of Epilepsy and time and support which is needed.
you are doing a wonderful job if you are passing all your uni courses as well and I say to you keep going dont give up and be proud of yourself because im sure your partner is very proud of you..

By loopy

Re: New member having a bad day
Wed 11 Jun 2008 22:12

hello laura, welcome to this site. You are doing a wonderful job and please say proudly to people that you are doing a great job as a carer.I work part time and also care full time for my daughter who is 17 and severely autistic/ learning difficulties. I think your lecturer meant well but could of used better words!! You are his carer and he is lucky to have a lovely person like you and i am sure that he knows it!! Please feel free to drop in to the chat room on a friday night. They are really friendly in there and you will be made most welcome. Sometimes i am in there, you can chat to me if you like.
take care
Lisa X

By loopy

Re: New member having a bad day
Wed 11 Jun 2008 22:15

p.s..you may be able to give me some advice !! My daughter has to stop and think about each word and how she can put them togeather to make sentances. She sometimes gets confused.

By phil_kent

Re: New member having a bad day
Thu 12 Jun 2008 10:20

hi ya lov,hey your doing a good job,im phil and i work as my fathers carer,if u ever want a chat just pop on,everyones friendly here,tc all the best phil..

By kerry.

Re: New member having a bad day
Thu 12 Jun 2008 12:03

Hi Laura,
welcome
Firstly, are you under special circumstances at your uni? If not then you should sort that immediately.
It basically means that you will receive special consideration- you can tell them as much or as little as you feel comfortable with but obviously the more info u give, the better for you.
This also means you could get an automatic extention on any work. Usually about 2 weeks, so if you're having a particularly bad time with your partner, and work needs to be done, you have a bit longer to complete it.

I too am at uni (health and social care degree) and have just finished 2nd year.
I have an AE due to my circumstances but have never used it as I'm rather tenacious and it's a matter of pride. But I know it's there if I need it.

My two youngest are severely disabled and are incredibly demanding, sleep little and on the go all day so I know how hard it is trying to combine academic study with your caring role. Also my marriage has just broken up (right before exams lol) which was an extra strain but my uni will also take that into account.
Your lecturer was wrong to say what he/she said. Go to your student services and talk to them.

I too have no family around but try and make time for friends. you need a break too from both your roles.
Enjoy the odd night out with friends- it makes all the difference.

Good luck with your studies- don't give up!

By Maggsy

Re: New member having a bad day
Thu 12 Jun 2008 23:34

Hi Laura
You are doing great. I know how difficult it is to care for someone with epilepsy. Does your partner have a epilepsy specialist and are they looking at things again for him to try and get the seizures more controlled? The National Society for Epilepsy runs a Helpline for people with/involved with with the condition which can be really useful for info and giving you an opportunity to talk about whats happening.

Good luck

By LauraLee

Re: New member having a bad day
Fri 13 Jun 2008 10:41

Hiya,

Thanks for the replies. Adam went back to work yesterday and the clobazam seems to have stopped his cluster!
Annabel your right, I've often thought that even the closest people to us do not realise how much time and energy epilepsy requires. Although, I am happy that we can have good patches and we also have hope that he will be controlled soon.
I think your right loopy, she definately meant well, it was the 'dependent' bit that got on my nerves! How old is your daughter? Theres quite alot of things that could cause those issues. It could just be that needs extra thinking time while she's still getting used to the rules of language. It may just resolve itself in time.
Thanks jason and phil.
Hi Kerry, I do have mitigating circumstances but this is actually because I had time off with pneumonia recently. Not all uni's have the same rules either and i'm pretty sure if there is anything else i should apply for they will tell me. Thanks for the suggestion. Well done for keeping going, not long now! Are you going into your final year?
Thanks maggsy. Yes we have an excellent epilepsy nurse and neurologist is great too. Adam was put up by 500mg to 2500mg epilim when he was in hospital 3 and a bit weeks ago. The neuro 2 weeks ago also put adam on keppra, now on 500mg going up weekly by 250mg until he reaches 1500mg. I rang the epilepsy nurse on monday because adam was having lots of seizure activity and she organised a presciption of clobazam 10mg for 3 nights to be faxed to our gp. They really are doing their best for us and I feel positive. He's also having another MRI as they believe adams epilepsy comes from deep in the brain which would be why they haven't been able to see it on the other one. I have rang epilepsy actions helpline before and they helped on a practical note.
Thanks everyone, hope you are all well. x

By kerry.

Re: New member having a bad day
Fri 13 Jun 2008 16:45

Hi Laura
Im glad you gave you some cosideration but seriously you should ask- sont wait for them to come to you mate, cos they probably wont if theyre like my uni- if you are a informal carer you should receive special circs- at any university.
Its just there for emergencies so if your guy has a bad time and you have an exam- you might not do as well as usual, and they will take that into account, or if work needs ot be given in, you get more time etc.

ASK!
Good luck with it.
Yes, october I begin my final year (whoooopie!!!!)
got my diss to do over this summer.