Updated: Jan 9
Today I am attending the Carers NI summit as part of my job with HDANI.
I have been invited along to have a stand to talk to anyone attending about HD and the support we provide.
Sitting here listening to the speakers has made me think, I was 17 when I took on the role of caring for my father.
17 years old, im not old enough to vote, im not old enough to drink, im barely old enough to drive, but I have been landed with the responsibility of another life. I have to deal with the difficult side of HD and everything else that comes with it.
I have always said the support was not there, I have always said I was let down over the years by the government and those who should have not only been concerned about dad but also me!
Here are some facts and figures from this mornings talk, 2 in 5 people say there struggling to make ends meet. 6% of career use food banks 66% use their own income to pay for carers support 11% said they lost some help due to government cuts 26% of carers got a carers assessment last year, everyone should get obe and is entitled to one.
If a carer ends up in the hospital or unwell who is there to look after their loved one?
70% of carers didn’t think their mental health was good! 1% of career said they were prepared to look after themselves in later years.
These figures are shocking, but im not surprised. Growing up as a young career I can agree with a lot of this!
I wish i had known about more support out there, HDANI were smaller 13 years ago! They have grown from 1 staff member to 4! They were amazing and helped my brother and I over the years. Your local HD charity might not be as large as others. I wish I had known of more organisations out there who could have helped. Given me advice and pointed me in the right direction. It would have made my life a lot easier! If I had have known what was coming I could have been prepared. I urge everyone to check out the many other organisations in your area or country. It doesn’t have to just be an HD charity you get support from.
A simple google search – help for carers
There are so many other organisations you can reach out to, a few in NI are- Patient Client Council Make the Call Carers NI CAUSE Age UK
( I found these from a simple search)
There is so much help out there, make sure you’re getting the help you need!!
A lot of carers don’t identify as a carer, but we are. We are juggling our own lives, caring for someone else, work and everything else life throws your way.
Imagine what you do on a daily basis, now do that all again for someone else!!