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Carers UK Forum • Ive done this wrong !
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Ive done this wrong !

Posted: Sun Sep 18, 2011 2:26 pm
by Ranicat
Hi Im Mandy
I was a Senior Registered Nurse whose wonderful husband developed Epilepsy in 2000 - 30 years after a big bike smash and brain surgery. I was diagnosed as Bipolar in 2004 and take Lithium. I am not well controlled but OK, i need to be so never really think of myself. I LOVE photography and im a member of flickr online. it keeps me in touch with others who show beauty instead of pain.
He was well controlled until end 2009 when he had a set of 5 seizures in as many hours in France. He recovered but V slowly, took 4 days to wake ! and since then his seizures have been diagnosed as uncontrolled. He is on 3 drugs and Diazepam for rectal use which he needs every 3 months or so.
This is emergency treatment agreed at home by our wonderful Neurologist and Epilepsy Nurse.
Andy is my 2nd husband and me his 3rd wife. We laugh in the face of adversity and he says what better as your getting older to have a nurse on tap Image
Our children have abandoned us (4) and will not visit because of the sizures and Andy has lost friends he had before me because of his increasing memory loss, seizures and personality change.
The people who are our friends are ALL nurses, my friends became his.
They know and are a great support even though they all live away from us. Our computers are our lifeline to them and we often have pre planned visits. Like this coming tuesday when one is home from Australia for 6 weeks.
Andy sounds and looks so normal but if he goes in the kitchen he has forgotten what i have in my tea even though its never changed. He is a danger to himself and we live day to day loving each other for no reason but we do. A few weeks ago he got a camping stove down and put it ON the cooker surface, lit it and put a pan of soup on to boil ! i found him doing this and he said he had forgotten we had a cooker Image
His brain is deteriorating slowly and we live every day with the knowledge that the next seizure could be his last.
I took early retirement at 50 this June before the government ruin the public sector pensions. it was so i could care for him 24 hours a day and not be on many benefits. The benefit system is the single worst company ive ever had to deal with in my life....im sure others will say the same. We go out together and carry all sorts with us but hey- thats our life.
I love gardening and just had our garden landscaped professionally so we just enjoy pottering. My life is his life and rarely do i feel alone. My head is full of noise from mania so im rarely on my own. I enjoy peace and quiet and rock music from the 70s...........big differences. i am just happy to be with him and give him the care he needs so we can function on the outskirts of society. People are very unaccepting of Epilepsy, we have found.
Kindness and Friendship - Mandy

Re: Ive done this wrong !

Posted: Sun Sep 18, 2011 7:59 pm
by Myrtle
Hi Mandy and welcome Image

Re: Ive done this wrong !

Posted: Mon Sep 19, 2011 4:11 am
by Ranicat
Hi Myrtle - thanks for the welcome
kind regards

Re: Ive done this wrong !

Posted: Mon Sep 19, 2011 2:46 pm
by Minnie
Hi Mandy,
Welcome , and good for you, be proud of yourself you have got your priorities right , although it
is very hard. I am a former carer, looked after mum for years, so I sort of know how you feel.
other people will know more than me . you are in a good crowd. Image
Minnie

Re: Ive done this wrong !

Posted: Mon Sep 19, 2011 3:40 pm
by BertieBear
Hi Amanda. I don't blame you for not wanting to get too involved with claiming benefits as it has it's difficulties, but you sound very positive in the way you handle the difficulties that come your way.
Welcome to the forum!

Re: Ive done this wrong !

Posted: Mon Sep 19, 2011 5:00 pm
by leanne mchugh
Hello and welcome, hope the support you will get here helps you log your journey.

I saw this on a picture while we were away and had to buy it

"Everybody wants happiness nobody wants pain but you can't have a rainbow without a little rain".


Hope it helps you its my new mantra.

Re: Ive done this wrong !

Posted: Tue Sep 20, 2011 8:00 am
by Ranicat
Minnie - thank you , your comment is very welcome and very kind. My siblings and i cared for my Dad who needed heart lung transplant 16 years ago- we all thought that was hard but this 24 hour thing is much harder than i ever thought. I wish i could go back and fight the corner of each lady carer who cared for my men patients better than i did. i never realised how hard it was for them !
Kindness and Friendship - Mandy

Audrey
many thanks - i love the emoticons. Positive is a word ive tried in every guise and form, Yes i appear positive to the world but most of its an act. I dont really let go and thats possibly why i dont get help when i need it. its like running my High Dependency unit with just one nurse and one male patient, without catering, cleansers, drugs and doctor and most importantly Emergency Resus Team. its all up to me Image
Yes being a senior nurse i have much to offer and my friends say Andy is so lucky to have you , but felt i shouldnt use my knowledge as i no longer practice. I wrote on a ladies post on sunday and then removed it in case i gave information and support that conflicts. Its difficult out here in the big world , ive been sheltered for 30 years and id give anything to go back 5 years to where i was. I miss my work so much and my team, tho a lot of them write and email and visit like today Image
Thank you , i hope to make good friends on here and help others whilst helping myself.
One question as computer speak is not my best subject- what is OH ?

Kind Regards - Mandy

Bertie Bear
Thank you, We got the benefits we needed but i felt guilty for every little penny, never needing them before. The booklets or tomes i like to call them say at the front (this booklet may be long and hard to complete but dont miss out on benefits you may be entitled to) I didnt let them beat me as we needed them only now i am in a position not to apart from DLA and Carers Allowance we stopped the others when my pension came thru in June. i so wanted to rub their booklet in their noses but was so polite it hurt. In fact i did all their work for them , contacting other subsiduaries. Each lady or man i came across said things like " oh well this will affect this benefit that benefit" it felt good to say - ive already informed them ,paid excess back and here is my letter of cancellation. The ESA dept said i cannot cancel my own benefit !!!!! crazy government
Love the name -Mandy

Leanne - Hi , im sure it will help. Andy says i log everything, document all his seizures and different recovery because it was my job in the past as is now.
My mantra was given to me by an old french lady
"the doors we open and close each day decide the lives we lead" i try to live by that, with the occasional hiccup.
Kind Regard - Mandy

People are so very kind on here - its not something im used to, its usually my giving. Mx

Re: Ive done this wrong !

Posted: Tue Sep 20, 2011 9:34 am
by BertieBear
Sometimes being positive on the outside can help us be positive on the inside Image
But then again, sometimes it's just another thing to worry about Image Luckily there are people here who do the same, so if you don't feel like being positive you won't be criticised for it.

Yes it's easy to feel guilty about being on benefits, but I think that's what they do to keep people from claiming when they're not entitled (or that might be how they see it), but if you're entitled to the benefits you're claiming than there's not reason for you to feel guilty. After all, carers same the government billions every year by providing care for people which they couldn't afford to care for on the NHS, so I definitely think we're entitled to some kind of living costs at least Image

My name is from my dog Bertie------->
You can see why we call him Bertie Bear. You're welcome to give yourself a name too if you want to.
viewtopic.php?f=24&t=16772
Could always just call yourself Mandy Image

Re: Ive done this wrong !

Posted: Tue Sep 20, 2011 12:06 pm
by Ranicat
audrey - thanks, i thought it was O husband and couldnt get it. As for today, its calm after 3 seizures in the night. Those i cope with better as he is in bed and i do not have to lift him and get him to bed Image Image Image
We should get a couple of days without now and plan to go out for lunch tomorrow. I suppose i have the better of two worlds of Care. He is in need physically 3-4 days and only psychologically re safety for the other 3-4 days.
Emergencies - yes it is, i have emergency drugs and only agreed by higher authority because of my past role as a nurse. Each seizure that happens when he is awake causes after its over a "stridor" which is where the larynx flap closes over the airway , making a specific noise that only stridor does. Its unmistakeable once heard, and the only way to allow him to breathe till it stops is to hold his jaw firmly forward. Otherwise he would stop breathing. It takes a great deal of energy and hurts like hell. He has only 6-8 of these a month now. Its as if my work extended into my private life in a way that i still need to practice my expertise. ......my dad would say its because im special as he thought, but to me its Pergatory and punishment for past sins. I lost my faith in God a long time ago as i watched helpless sometimes as my patients died in pain. I still think hell is on earth not after life.
Kind regard Mandy

Re: Ive done this wrong !

Posted: Tue Sep 20, 2011 12:13 pm
by Ranicat
bertiebear

Thanks, im known as "Ranicat" everywhere i go on computer after the little love of my life Rani. She was a Queen Siamese and treated like the Queen that she was by all who saw her. She was haughty , dismissive and could offer up total disdain at a seconds notice.
I miss her so much ive never had another.
So perhaps ill change it, because i recognise it wherease my name i dont ! Ill follow your lead

Mandy