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New to site - Carers UK Forum

New to site

Tell us a bit about yourself here.
I am so glad to have found this site, heard about it from the radio or TV.
I care for my wife of 41 years, who I love to bits.
Approximately 6 years ago she started having "funny turns", she would develop a strange taste in her mouth or detect a strong smell, her word co-ordination would suffer and she would be in a state of semi conciousness for a few minutes. Our GP, a really "nice" man put it down to her age, she was then 56!
We had 9 years before opened a gift shop and successfully built up the business together, we worked well together, well, women are very good at letting the man think he is in charge, aren't they?
The optician at our local Specsavers recalled my wife after she had been for a routine eye test, she said her equipment may have been playing up, but after the second examination she contacted our GP and suggested she be referred for further tests, she could see that something was amiss behind the eyes.
Without boring you all,
7th January 2002 she was diagnosed with a brain tumour at the QMC Nottingham,
9th january an exploratory operation and debaulking,
2 weeks later diagnosed with a grade 3 astro cytoma tumour in the left temporal, it is part of the brain and cannot be removed.
Approx 6 weeks later commencement of 30 treatments of radiotherapy at the City hospital, which could give my wife up to 2 years more!
6 months later her bowel burst, but she survived that although having to have a colostomy.
She was in hospital almost 3 months after losing the use of her legs, she was transferred to a rehabilitation ward and while in there had clot on the lung.
After leaving hospital she fell and broke her pubic rami?? and was taken to Grantham hospital.
We had to give up the business and take early retirement.
Her mobility has improved and she can walk slowly with my aid and a walking stick, she has since had her colostomy reversed, that really pleased us both.
We get full DLA and carers allowance and are happy with that, my wife now gets state pension and I am due mine next year, we have always been careful and have no financial worries.
Our 2 daughters live 100+ miles away and we have no real friends or relations near to us.
I can talk to our GP, but we rarely see him unless there is a problem, we had a visit from the Macmillan nurse once who was very helpful and arranged for a palliative consultant to visit who was very helpful with medication for my wifes pain control, she has developed osteoporosis after use of steriods etc, she has 3 wedged vertabrae. The nurse said we could ring her if we required her help again.
Our consultant neuro surgeon is amazed that my wife is waking up each morning after 6 years, the radiotherapy obviously did it's job and more and she had her annual MRI scan last month and the tumour has still not started to regrow, he has now presented us with maybe another 2 years.
The treatment we have received from both Nottingham hospitals has been superb and the oncology and radiotherapy staff have all been brilliant.
It would just be nice sometimes to have someone to talk to, don't get me wrong, we are very good together, but with her losing her short term memory and word co-ordination ability it can get a litttle frustrating at times.
We realise that there are many worse off than us, we see the poorly children when we visit the oncology clinic every year, at least we have had a life.
I will apologise now for boring you and I hope I haven't contravened any site protocol, it has been very nice to just "talk" to someone who will probably understand?
May I also ask, is there such a thing as a carers syndrome? I seem to have taken over everything in the house, cooking, cleaning etc and often find myself not letting my wife try something, I am afraid she may harm herself or damage something, afterwards I realise that she could have done it. I seem very possessive often and probably overdo the carers role, has anybody else experienced this?
Thank you for reading this and best wishes to you all.
Hi Postmark

Just a quick welcome to the forum - it's usually a bit quiet on a Sunday, blame F1 for that today (let's hope Lewis does it after the heartbreak of the rugby yesterday!).

Please shout up if you need any help using the board, we're all here to support each other in every way we can.

Look forward to hearing more from you and your lovely wife.

Take care

Paula xx
Hi Paula,
Thank you for your welcome note, as I write LH is in 9th with 11 laps to go!!!
Regards.
Hi Postmark,

Welcome to the forum. Please be assured you have not bored anyone, neither have you broken any rules. If you like to know the etiquette expected round here, there is a section (towards the bottom of the index page, I think) which spells them out - but you will see that they are all pretty obvious anyway.

There are Carers Support centres all around the country - I am a little surprised that neither your GP or Macmillan have given you a contact in your area. Someone with this kind of information at their fingertips is sure to be around soon, but meantime, have a look around this site and http://www.direct.gov.uk/en/CaringForSomeone/index.htm for a range of useful information including support services for carers.

Also, have a look at the reviews on www.Amazon.co.uk of a book titled 'The Selfish Pig's Guide to Caring' by Hugh Marriott. Hugh Marriott's approach does not suit everyone - he has been a carer for some years and knows what it is like, and he pulls no punches.

I'll stop wiffling now as I have to get Pa his supper, hear from you again soon, I hope.
Hallo Postmark, Welcome to the Forum. I'm new here also but gradually finding my way around. You have had a really awful time with your wife's problems - let's hope things can improve a little more. In such circumstances it's only natural to want to do everything for her, that's part of the loving and caring, but try to let her do small things that she thinks she is able to do, it will make her feel that she has a measure of independence but stay close in case your help is needed.
When mum-in-law (she's 92) came to us after 2 years in a care home, she couldn't walk more than a couple of yards with a zimmer or dress herself. After 8 weeks she is now toddling about 20 yards and dresses herself each morning and undresses and gets her nightie on at night (with a little bit of help admittedly). She's now asked me to give her a proper manicure and paint her nails tomorrow, she is getting particular what she wears each day and is actually brushing her hair. And, yes, it all takes a lot of time and I could do it much quicker, but by helping her to do things herself she is now beginning to smile and feel she still has some independence
Hi Gem,
Thank you for your reply, I know you are right and I do try, but I could never forgive myself if she hurt herself.
Sometimes it feels like we are in a cocoon, like being in your own little world, does that make any sense? My wife used to be very active, she loved her garden and working in the shop.
She now likes daytime television and doing jigsaws, which helps her concentration, but she likes me to sit down with her when I really have a lot of housework etc to do and I do like to go to the gym a couple of times a week if possible.
I have recently found myself getting irritable on occasions and I'm sure it upsets her, but she never complains, in fact she never complains about anything, never has, no "why me", I feel so humble sometimes. If our roles were reversed, I very much doubt if I would be as strong.
Best wishes.
Hi Postmark,
I know what you mean about carers syndrome Image But it does help their self confidence and feeling of self worth if our carees do things for themselves.
Hovering in the background, ready to dash in at a second's notice with nerves in tatters? Guilty here too Image
My oh has ms and the more he does, the longer he will be able, though the amount he can do gets less, if that makes sense. And some days, the urge to do it for him can be overwhelming, especially if you need to be somewhere at a certain time or he is having a bad day!

And Lewis Hamilton lost the championship by one point Image
Hello Mark

Welcome to the forum!

I very much enjoyed reading your first post as it really gives a brief insight and I also sometimes think that its a release for yourself getting it all out! You certainly come across as a loving caring husband and your wife sounds really remarkable and that says alot about your relationship and hence previous partnership (not many couples could acheive together)!!

Yes I also can relate to 'Carers Syndrome', so your not alone on that one, you'll find we all have many things in common being Carers! I do hope that you find the forum and site helpful and supportive.

Take care
Maryann x
Thank's to you all,
It has been very nice to have communication with people who obviously understand your situation, I have also looked forward in anticipation when revisiting the board.
Best wishes.
I have recently found myself getting irritable on occasions and I'm sure it upsets her, but she never complains, in fact she never complains about anything, never has, no "why me", I feel so humble sometimes. If our roles were reversed, I very much doubt if I would be as strong.
Best wishes.
Hi Postmark

Your posts are moving, inspiring & touching, Both you and your loved one have a lot of love and devotion, and the strength and lack of complaint about anything is something that inspires and gives us all strength, I am convinced that our Carees are special - and I always maintain that Caring works both ways, and at times we too are cared for by our loved ones in their own special way.

I think that our loved ones are the most inspirational people, I am still moved by the report on a 19 year old Duchenne Muscular Dystrophy sufferer called Stuart Wickinson that I saw a few weeks ago - it just puts everything into perspective.

As for Carers Syndrome I don't think there anything that we could ever do enough!

Welcome to the forum, I hope that you will be inspired and gain strength from it, and chill out too! Image

Lola