It's time I told my own caregiving story, beginning with an end.
Meet Jordan, a young carer from the UK who uses her blog, Just Connie, to document all about the life her sister is living with a rare neurological, degenerative disease—and the effects this has on the family. Jordan is passionate about ensuring Connie lives the life she deserves, and about connecting with fellow young carers to make sure everyone knows they aren't alone.
What's your caregiving story?
I have been caring since the age of 3 for my younger sister who has Rett Syndrome, Epilepsy, and Severe Learning Difficulties. She is now 21 and her needs have severely worsened over the past 12 months.
What is the hardest part of being a caregiver?
Growing up as a young carer, the hardest part was definitely understanding how and why my life was different to all of my friends. It was having the realisation that I was often needed at home, and that giving up other social opportunities was just part of how life was going to be for me.
What do you need the most as a caregiver?
The two things I need the most as a caregiver is understanding from people that know me about the realities of my life, and a break. I think a break is vital for mental health and ensuring I can give my sister the best care possible—even a couple of hours break can make a massive difference.
What do you worry about the most as a caregiver?
Without a doubt, I worry the most about the future and what it holds for both me as a caregiver and for Connie as a young girl who needs a lot of help and input. Almost every single night I go to bed thinking of what will be required of me in the future and how caring for Connie will change.
What do you want people to know about caregiving & your caregiving life?
As a family, we try and stay very positive about Connie and the life we have caring for her, but I would love for people to know about the actual true reality of it. No one, apart from my parents, my brother and myself, understands just how hard it is to live with Connie and I think a lot of people underestimate just how difficult it is.
If you got unexpected time off from caregiving, what would you do and where would you go?
If I got a few unexpected hours off, I would be straight on the phone to my friends to organise seeing them and doing something fun. If I got say, a week off, I would be straight on a plane to my dream destination—New York! Who knows, hopefully one day I will get there!
YOUR TURN: Do you wish others knew just how hard your caregiving life can be? What are some of the "behind the scenes" challenges you face? Share in the comments below.
Find out what Deb Hallisey thinks about caregiving in the latest edition of Voices, real stories from real caregivers.