by Simone 03rd July 2012
My daughter is 24 years old now. I have been caring for her through her life. Today I was thinking about the amount of help I have had in those years and I can honestly say I can count those times on one hand. As an older carer where has that left me? I had to give up work in 2006 and leaving a career that I could have advanced in Horticulture. I was at that time offered a manager's job but of course I could not even consider it as my older children wanted to leave home and they used to look after my daughter whilst I was working. I have been home since then.All my dreams disappeared, all my hopes and aspirations and most of all my wages which would have made a big difference to our lives.
The support system is a failure and current government are making cuts but in fact more money should be put in. It broke up my little family. Once very much in love with my husband but soon the relationship became strained and there was only tiredness and no romance. Maybe you have been luckier then me but in a sense I see myself as having had a sad life. Not only my life but my husband's and it also had an effect on my older children. There was no money to take them on holidays with only one wage coming in and a mortgage to pay. Had I been able to stay at work I could have saved my older daughter getting a student loan out which she still hasn't paid. So it effects the whole family.
I had to spend so many hours trying to help my daughter with little support. My conversation just disappeared and eventually was only about our day. No real help came and I never could have respite. Little time for marriage and relationship.
The real me became buried and the once happy me had gone. My daughter is beautiful and there are no regrets as she appreciates everything I do for her. However as a mother your life completly changes. My marriage sadly broke up about 16 years ago but we could not afford to split. We have been through the arguing, the being friends, the not talking and now we are friends again. However he too has missed on starting again and so have I. Better support may have meant time for ourselves and the marriage may have survived. There wasn't enough money and we had to think of how best to support the family. My daughter who has turner syndrome only discovered when she was 21 years of age as she had a different diagnosis since birth...........
So apart from my marriage I now have barely any contact with my family. It did get to once a year but I didn't even see them last year. It was awkward for them to visit and they stopped...In time I also lost many friends to the point I now have the odd person that rings me but not even once a month.I have not been out on my own since March 2008 as I have no care package and Social Services have now discharged my daughter as "Not under their criteria"
My daughter who doesn't travel on her own has no friends. She can not sit in a pub alone and she doesn't want to go to disabled groups. Having a milder disability makes a big difference in one sense but not an other as not many people speak to her either and she gets lonely.
I spend most of my time with her and sadly now everything has effected the relationship between her and her father. She thinks her father blames her for breaking up the marriage. He did his best but now keeps a distance as everything has gone beyond fixing.As a carer I couldn't get help to move and therefore my life is now around caring and as I am 59. I have lost hope of starting a new life. I don't have any money of my own. I still can't work as my daughter still needs help. I am not unhappy as one learns to survive but neither am I happy. My life forgotten and there is little to look forward to.
The whole system of help for disabled and carers needs to change. It is unfair that not only do we give up our lives which many of us do because of the love we hold for the person we care for.........but we do deserve a little more support a little more fun in our lives and a little more thought...................and a better carers allowance..