Being A Disabled Caregiver

Posted by Katrina Dorrian on 5th August 2020 Additional Needs, Advice & Support, Disabilities

I was diagnosed with Multiple Sclerosis (MS) in 2010 after losing sight in my left eye.

I am a qualified Learning Disability Nurse, although my career was cut very short when I was forced to medically retire. I had become a senior nurse in a local care home for people with neurological disabilities and was fortunate enough to share this role with my best friend at the time. I fell pregnant with triplets (following IVF) and went on maternity leave to have my beautiful children.

After returning to work for a “keeping in touch” day I wrote an incredibly gut-wrenching letter to my human resource manager explaining I just couldn’t physically cope with the work anymore. I’ve never been able to return to nursing, and odds are I never will. While work was hard a lot of the time (in many ways), I really miss it. I worked hard to qualify and had lost it after four short years. Most of my friends were also nurses so I felt like I had become an “outsider” in a group I once “belonged to”.

One of our very gorgeous babies was born with spina bifida, hydrocephalus and has since developed epilepsy. He has had a tough time from day one really, as he was born prematurely and weighed just 2lbs 10ozs. After six weeks and two surgeries, he came home and joined his identical twin brother and fraternal sister, who had been discharged after sixteen days.

All mothers (and fathers) are caregivers, although my husband and I joined a new exclusive “club” of special needs parents. I was doing things with Jacob that I used to do in work and while I was so glad I had the knowledge base to do this so it was all a little less overwhelming...it wasn’t easy. New parents often report feelings of exhaustion, and we had this times three!

MS impacts every aspect of my life.

My main symptoms are fatigue, weakness, pain, brain fog, emotional lability (intense episodes of emotion), tremors and mobility difficulties. This doesn’t really go very well with having a child with additional needs to care for. I am so conscious of how I word this, because I don’t want anyone to feel I resent Jacob. It’s not that, it’s very much that I feel like I fail him.

I resent my MS impacting how I care for him and the subsequent help our family has needed over the years. Jacob’s disability social worker set me up with Direct Payments when he was around 18months old, meaning I could employ someone to come in and be there with me to do the things I found physically harder, like lifting Jacob into the car etc. She was a vital addition to our family for four years, although has since moved on to new opportunities with our love and support behind her.

The challenges we face daily makes maintaining friendships harder, for so many reasons, partly because our ability to be included in “normal” activities is limited by mine and/or Jacob’s health. Having said that, I have been blown away with the support we have been shown.

My mum, in particular, helps us out so much on an almost daily basis. 2019 was an absolute hellish year for us (I’ve written about this in another blog about epilepsy) although we excitedly welcomed my brother’s little girl, Rowan, to the family. Him and his fiancé came to us for visits, even with a newborn, because they knew travelling triggered Jacob’s seizures. My husband’s side of the family have also been here to help whenever they can and have held us up during so many difficult times.

Life in our house is chaotic, and often very difficult, but also absolutely extraordinary.

We laugh together every single day and I am so fortunate to be Ben, Chloe and Jacob’s mummy. It is an incredible journey and I am so lucky to be on it! I’ve made a lot of mistakes along the way and know I will make plenty more, but I will keep striving to be the best version of myself that I can because my family deserve nothing less.