General Chat

Have emailed Sylvia privately. Can't begin to understand the strain of being a full time carer, but feel for you all and hope that, even if the folks on this board can't offer physical support, it helps to know that we are thinking of you. If it helps to chat to a complete stranger - then please chat. I (and I'm sure many others) will listen. As Bob has observed on another thread - some of us are around quite a bit!! Maggie XX

Both myself and wife are carers for our two children. Christopher has global physical and mental handicap and cannot speak walk, feed or dress himself, he is now 14. We thought we had our hands full but we had twins and one David was diagnosed with Muscular Dystrophy, we were devastated, even the doctor was crying. Christopher although severely handicapped is a happy little soul and a joy. David is mentally Ok so watching him deteriorate is heartbreaking, there is no treatment at present. I work as an escort for the children on the school bus and it is surprising how many ailments there are. We were told the bus times had changed a few weeks back. “the little boy on the front has died” . “life must go on” so they say , and isn’t it so easy to say? Bob

I have been a part time carer for my elderly parents and my Aunty for a few years, then 2 years ago my husband had a stroke, at a very young age. This left him with memory impairment, he couldn't return to his job and I have had to fight for every small piece of help we have had, simply because he wasn't left with any permanant physical problems (thank God). He is much better now and determined to go back to work. Part time at first, to see how it goes. I have found that the stress has caused my health to go down hill too, I already had a few health problems and these have started to play up again. I would like to think that the care I have given my husband has helped a little in getting him to where he is now, and on really bad days he cares for me now or should I say we take it in turns to care for each other.

Hi Sylvia Like Linda Potter, I am a parent/carer too. I have an 18 year old son with cp. Life has had its ups and downs with him, but at the end of the day, I wouldn't swap him for the world. He brings our family and those he's in contact with, a lot of joy. I do empathise with those of you caring for an elderly relative/partner. At least, at the moment, my days are free during term-time, apart from when I'm working. Oh, you know what I mean! Keep up the good work everyone! Just think of all the money we save the government!!

Wendy in Hampshire. Thank you for your Email. I wish I could speak to your mother, but tell her from me to get a computer. It might take a little while to get used to it, but it would certainly be worth it in the long run. Until you have one, you don't know just how much you can do on it and it certainly keeps you in touch with people. I have never had so many friends as I now have since joining Genes Connected. Please give your mother my regards and best wishes. I know exactly how she feels. Best wishes to you and your family from Sylvia. PS By the way, we used to live in Farnborough, Hampshire before coming to Australia. Where do you live?

Linda, Thank you for your message and for telling me about your son. I admire you very much. It must be so tiring to look after a young person full time.as well as studying etc. I don't know how you do it but I'm sure you are doing a wonderful job. Take care of yourself though, Best wishes to you and your son from Sylvia X

Hi I am a full time carer for my mentally handicapped son aged 21, I am also doing a degree part-time and trying to trace my tree, Jonathan my son is a very lively young man who really loves life, and is a special needs gymnast and Liverpool football clubs number one fan. I would't be with out him he is such a Joy but he needs constant supervision and cannot go out by himself so I am a permanant taxi service. some times I go to bed at night totallly exhausted!!!!

Hi Sylvia I know exactly how difficult it is for you. I was carer for my daughter for 23 years who had a rare brain disorder sadly she died last year, the gap it has left is enormous. I think it must be very sad caring for your husband you deserve to be able to moan sometimes I wish you well for the future. My other wish is my daughter now has the peace she so greatly deserves. Kind regards Stella

Sylvia - You message is very touching - Fantastic you have computer..it really can bring some of the world to you! Have a chat on the members board..I went on it last night for the first time... got some unexpected cooking tips :o) balsonic viinegar in salad or something like that!! oh, and added some "rogue" comments in the Guest Book..was great fun! Very Best wishes to you...

sylvia my heart goes out to you.although im not in the same position as you are,i am a home carer.every day i go and get little old men and ladies uot of bed,wash them,dress them and more often than not i feed them. there are many of them that suffer with dementia and alzheimers.it is a very nasty,wicked illness. i leave their homes with the feeling that i want to do more to help them.i often go to the shops or chemist for them and visit them out of work hours i think you are doing a fantastic job sylvia.when i go home i am always thinking of them and try to turn off,which is very hard,but you dont have that option. please come on to the members board and chat to us all,we will be so pleased to see you. take care sylvia,ive got nothing but admiration for you susie:)

Hi there Sylvia My father-in-lew is in the early stages of dementia and I know this wares my mother-in-law down so I go round every Thursday to be with him then she can go out and have her hair done and do a few of the normal things without the worry of him being left alone. Today is his birthday so I will make a fuss of him but come later today he would have forgotten I had ever been there.He, like your husband refuses to go anywhere so just to be a listening ear for mum and to help where I can I know helps keep her sane as she herself is in her 80s Look after yourself and take care regards Lynn

Christine. Thanks for your message. My husband is taken out on a bus trip every Thursday, so I have just been out for a couple of hours and enjoyed it very much. He is supposed to go into Respite every few months but he refuses to go and I don't like to make him, so I just make the most of the time I do get. I know there must be lots of people in this situation. It's just nice to know that someone understands. 'Bye for now, Sylvia

Sylvia, I'm not in the same position as you, I just have to care for myself. but as far as chatting with friends, why dont you come on to the members board, you will have plenty of company on there. I for one will welcome you. Bill Downunder.

I wonder if any of you are Carers. I mean a full time carer of a family member who is sick or unable to take care of her/himself. My husband has Dementia and I am his carer and, as I don't go out much, my Computer is my Lifeline. I use it to keep in touch with as many people as I can and don't know what I would do without it. I am not complaining about my lot, just wondering if any of you are in the same position. I enjoy reading all your messages so keep it up, Best wishes to all, from Sylvia