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Carers UK Forum • New 2015
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New 2015

Posted: Wed May 06, 2015 2:11 pm
by Matthew_1505
Hi all,
I'm Matt. I have been a carer for my wife and son for 12 years now since complications at birth left our son disabled and enhanced disabilities my wife already had and sent her health snow balling.
I am proud of my son, despite muscular problems, high functioning Autism and hearing loss in both ears, he has managed to get himself into one of the top mainstream schools in the country and is doing well.
My wife tries to stay active and I try and encourage her, though if I'm honest the stress of 24/7 care and having no respite care for over 4 years now is causing us some sever relationship issues. I am giving my all and am totally exhausted and depressed, it feels that I am getting nothing back and getting very little love and respect.

So that's why I am here, I need to talk to anyone that understands and I'm not finding that from any professionals.

Oh incidentally, 6 and half years ago my wife and I founded a charity for people in our position within our county, focussing on families with disabled children, over 6 years we grew the charity to have a place of high standing and respect within our county and we worked closely with the counties departments of Health, Education and Social Care, helping to formulate and action policies and fighting for recognition of carers and the disabled. 6 months ago the charity suffered a hostile take over and is now little more than a clickly little friends group for the people who took it from us, most of the charities original members have been either booted out or made to feel isolated and there is no working at all with former partner organisations or professionals. My wife and I both feel hurt and upset by this and it has certainly added to our problems and my feelings of depression.

Re: New 2015

Posted: Wed May 06, 2015 6:05 pm
by bowlingbun
I'm not surprised you feel exhausted, mentally and physically. My term for this is "Clapped Out Carer Syndrome"! When did your wife last have a needs assessment from SSD? When did you last have a Carers Assessment? Why haven't you had any respite? When did you last have a holiday? (Apologies for briefness of questions, mega busy.)

Re: New 2015

Posted: Wed May 06, 2015 6:41 pm
by Alex_1504
Hi Matt,

I came here too with the hope of talking to people who would understand. I did an intro post a few weeks back and the support I got was massive. It meant a lot to me. I should have tried to reach out to other carers much earlier, but at least I am here now!

You've every right to be very proud of your son, that's fantastic news. I'm sure, if he's too young right now to know it, he will be very proud of you one day with everything you've been through and support you've given others to get to this point. Take care.

Re: New 2015

Posted: Wed May 06, 2015 8:13 pm
by Matthew_1505
bowlingbun wrote:I'm not surprised you feel exhausted, mentally and physically. My term for this is "Clapped Out Carer Syndrome"! When did your wife last have a needs assessment from SSD? When did you last have a Carers Assessment? Why haven't you had any respite? When did you last have a holiday? (Apologies for briefness of questions, mega busy.)
My wife had a needs assessment from OT last year, that lead to us having to move a bungalow in the summer, but that is better for us all and its in a village so nice and quiet. Its been a long time since anyone else from adult care has assessed her needs thought the last assessment said she was in the severe to critical category, meaning our council have to offer respite care, but they will only do so if we can stump up £20 a week towards the cost. They did not take into account that our son is disabled and that we simply don't have £20 a week spare. We found out there is a waver policy team that may allow you to get respite without paying but on contacting them they only lowered the amount to £18 a week unless I can send them every receipt, invoice and a complete list of outgoings. I did what I could but don't have the time or energy for a big paper chase, and besides, they do not take fuel costs into account, which makes up a large chunk of our outgoings.

I have yearly carers reviews, the guys at the carers team in Lincolnshire are very good and very understanding, but can not do everything for you.

our last proper holiday was two years ago but it was only a 4 night stay at Butlins and it wasn't really a holiday for me as I'm sure most of you will understand.

desperately need respite care, but can not afford it, well not if we want to have any sort of life as well.

Re: New 2015

Posted: Wed May 06, 2015 8:14 pm
by Matthew_1505
Alex_1504 wrote:Hi Matt,

I came here too with the hope of talking to people who would understand. I did an intro post a few weeks back and the support I got was massive. It meant a lot to me. I should have tried to reach out to other carers much earlier, but at least I am here now!

You've every right to be very proud of your son, that's fantastic news. I'm sure, if he's too young right now to know it, he will be very proud of you one day with everything you've been through and support you've given others to get to this point. Take care.
That's encouraging to hear, thank you.

Re: New 2015

Posted: Wed May 06, 2015 9:01 pm
by bowlingbun
Carers UK has a brilliant helpline - they made me £50 a week better off so I'm happy to sing their praises. Give them a ring or email them. Then you can have a confidential discussion about your family finances, they will give you a thorough benefits check, and maybe help you to gain the respite you need.

Re: New 2015

Posted: Fri May 08, 2015 11:37 am
by Bernard
Hi All,
I've been a carer now in july coming 35 year all long years. Some have been very happy years. Some years have been harrowed by problems from persons living next door etc. I hoped things would brighten up. By the way my wife has had M.S. 41 years in a wheelchair the full term. So you can see I at times would like help even with a talk or some sort of support. Over the years the only support we have had is with each other. Anybody else just seem too want to wash their hands. One young person said there is no thing as disabled just lazy people that don't wish to look after them selves or want to live of the state. But what a lot of people don't know is that my wife worked hard before she was ill and I as carer for a while worked full time until she started to have problems with her health. You might not say that this is not new 2015. It is to me it was said by a young person canvasing for a political party last week. These persons don't relies that their remarks hurt and sometimes insult the disabled person and the carer.
Bye,
Bernard.

Re: New 2015

Posted: Thu Jul 23, 2015 7:17 pm
by Andrea_15071234
Hi Matt wow certainly sounds like you have been through it! Seriously reading your story no wonder you are exhausted and hurt..I care for my partner who has cystic fibrosis and not been in work or able to do the things he could in past for about 7yrs now... at times it's all overwhelming I too find I give soo much and for very little..we plough on cos we love the person/people but don't ever feel your alone in struggling with all this, I have abit of an issue with the whole 'well spouse' thing cos it's often projected that as the well one's we should always be able to cope well reading some of the stories on this site proves that we are all human! Just glad there is a out let here!
Thanks for listening