Jen - CASBA Staff

Life as a carer with a learning disability

My name is Jennifer. I work for CASBA, but I want to write this blog about my life and being a carer with a learning disability.

Jennifer running a group at CASBA

I have cerebral palsy, lipedema, a hearing impairment, and a learning disability.

All throughout my life I have had countless appointments at doctors’ surgeries and hospitals. No matter what, my mom was always with me. Even in my adult life, I needed to have mom with me, she understands me, calms me down.

Appointments are very scary for someone with a disability. There is lots of noise, you get anxious if the doctors are late, or if you see different people you don’t know. I take my teddy with me; it always calms me down.

My life changed when covid hit. The realization hit me that mom isn’t always going to be here.

Covid spreading CASBA

Mom and dad were a great support network to me during covid, I stayed at their house at the weekends so that they could continue to support me as part of the family bubble rule. I still stay at their house some weekends.

In February 2021, mom had to be rushed into hospital. We found that she had caught covid from her hospital appointment. She then got covid a further 2 times from going to hospital!

This resulted in mom having long covid and for the first time in my life I registered mom as being poorly. She was struggling to breathe and couldn’t do things that she used to do.

Over the last 2 years I have been supporting mom with her hospital appointments. At one in March, I started worrying, we went into the room and the doctor explained to me that mom had to stay in hospital. That was a shock, but the doctor was brilliant at explaining to me what was happening, and that mom wasn’t going to be in a coma, she just needed oxygen.

Oxygen tanks CASBA

All through that stay I was mom’s advocate. I got the doctors and nurses to explain what is happening to mom and asked them when she could go home.

It was like Christmas when mom could come home, I was so excited. I couldn’t wait to pack mom’s stuff up and get her out. The nurses were brilliant and helped us with the taxi.

Mom is now on oxygen, and I am looking after her a lot more. Mom isn’t well enough to take me to my appointments anymore, but I’m scared that no one will understand me like mom. Will they think I am being a baby for having a teddy? Will they understand my hearing, as it is my brain that’s deaf, not my ears? Will they understand my needle and blood phobia?

support CASBA

I know I need to let mom go, but I can’t and I think having a support group for carers with a learning disability is a great idea. I would like to have other people there, so we can help each other understand the changes in our lives. It will be great to have a support network of people to talk to about what we are going through.

Read about CASBA’s new project to support carers with learning disabilities here:

Read more about the local carers hub here:

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