A number of carers have contacted Carers Support with their stories and wish to remain anonymous.
When our daughter was born, she was small, 4lb 14oz, she was taken straight away to an incubator in the special care unit, we did not see her again until the next day. It was very difficult travelling daily to the hospital just to see her. Gradually after a few weeks she gained weight and we were then allowed to take her home. As time passed we took her to all the usual clinics to be weighed & checked, it soon became apparent that there was “slowness” in her development, it was also noted that her feet were not in the lined up format that feet normally look.
From that moment in time our lives were drastically changed forever.
We had regular visits to different hospitals, even Great Ormond Street, seeing physiotherapists & consultants, also a very expensive time with the travelling costs involved. The first few years were really hard. We felt totally alone getting on with it.
Zoey was five months old when my wife became pregnant again, so watching Zoey’s slow development and apparent disabilities develop as time progressed, made life just plain hard to bear for both of us. When our son Ian was born, we lived in constant fear for a good few years, praying that he was not going to have the same development problems that Zoey had.
When Zoey was about three years old and still not walking, we were introduced to the Joseph Roundtree Foundation for assistance, they helped us a great deal with practical equipment, a washing machine & tumble dryer because of the nappies, (no disposable ones in those days!). They also advised us about benefits to assist us, as in mobility allowance and disability benefits. We applied when we knew about them and was then advised we could have claimed earlier!
Eventually Zoey was diagnosed with ‘cerebral palsy’ and ‘spastic’ on the hips. Zoey did not crawl, shuffle, or move around at all. She did not walk until she was about four years old and then was unsteady on her feet, she still is in some ways. Zoey was also incontinent until she was almost 15 years old.
Over those early years we did not have support for us as parents, there were no groups we could attend, no one to advise us, or understand how we were coping – or not.
“We struggled along for years, eventually that took a toll on our marriage and we did split for a short time. Thank goodness we managed to recover from that period.”
We were experiencing problems with finances as my wife could not return to paid work as she was originally going to do, she did have a very good job before the children came along. The life she now had was very hard emotionally, as she was home all day when I was working, only close friends & family to help when they could, but everyone has a life to live for themselves and not always there when you need them, also turning to them was not easy, you do not want to admit there is a problem, you felt you would have been seen as a failure. We struggled along for years, eventually that took a toll on our marriage and we did split for a short time. Thank goodness we managed to recover from that period.
“Since moving to West Sussex almost five years ago, the support we have now is something so refreshing”
Since those early years, support for families has turned totally around, now there is so much more available not just for those with the disability but their families as well. Since moving to West Sussex almost five years ago, the support we have now is something so refreshing, we no longer feel isolated or alone, we are one of many and share issues from the organised meetings we attend, learning from others who have had issues and sorted them out with the assistance of carer’s support.
We have access to services to enhance Zoey’s daily living, bath grab rails, a tracker used with a computer to ensure we know where she is, she is a vulnerable person and we need to keep her safe when she is attending her day care centre.
As Zoey got older, life became a little easier for us, Zoey was attending a day centre which enabled my wife to eventually return to work and this also eased the financial hardship we had experienced over the years. We were both carers for Zoey depending on the need at the time & who were there to deal with the need.
I retired almost five years ago to become the main carer for our daughter as my wife was still working and her journey was 100 mile round trip every day.
It is now unfortunate that I have cancer, I had an operation to remove my kidney 18 months ago and my wife has since been doing everything for both of us as well as working full time. She is now giving up work to care full time for both me and Zoey, as it has now become just all too much. She will not receive any financial benefits other than maybe carer’s support, if she is entitled to claim.
The good thing is she will now be able to attend the social gatherings with other carers on a more regular basis for top tips and handy hints, not forgetting a good relaxed few hours with others in the same situation.