By Ami Hook-Ireland

Being an in-patient for 9 months, both in a hospital and a specialist neurological rehabilitation centre, I was accustomed to the different standards of care. Fortunately, the majority of care that I received was excellent. Therefore, when it was arranged for me to have carers every morning after I was discharged from the rehabilitation centre, I was hopeful that the same level of care would continue.

However, it didn’t. I was supposed to have carers for 6 weeks after discharge and they didn’t last that long. I gave up with them after four days. Where did it all go wrong?

The first carer instantly complained about the size of the downstairs toilet – which also had a sink (this is what I used for 10 months before the adaptations were built. So, yes, it is a tiny space but do-able) This was all within 5 minutes of the carer entering our home. Are carers not meant to adapt to the person’s needs?

Lesson #1 – Carers, or any person for that matter, shouldn’t complain about the lack of space to work in. Your job is to help, assist and support, not judge.

We had an appointment that same day, with the care manager. She had a booklet with her which included my details, my health conditions, and what I would need help with. I thought she was nice and had listened to me. But, I was wrong.

After she left, I was reading through the booklet and I stopped reading after the first page. Bear in mind, I have Sensory Ataxia, Transverse Myelitis, hearing loss (I don’t say that I’m deaf), central vision loss (I do have some useful vision), and a possibility of Mitochondrial Disease. Where she had written ‘Deaf’ and ‘Blind’, I was annoyed but let it slide. However, instead of Sensory Ataxia and Transverse Myelitis, she had written

‘Degenerative Disc Disease’

Please correct me if I’m wrong, but is that not a completely different condition? I checked it several times before throwing the booklet out of my sight. Maybe I overreacted, but neither I nor any of the medical professionals involved, have ever mentioned Degenerative Disc Disease.

Lesson #2 – Please listen. Listen to the person you are caring for, and respect their preferences. Never assume.

The second carer was actually OK, she listened to me, and treated me with respect. The only downfall was that she didn’t clean me thoroughly. BUT, after the previous day I’d had with the first carer and the manager, this carer had restored some hope; things would improve.

You know the red buzzers on game shows, the ones that make it clear that they got the wrong answer? Imagine me pressing that red button and making the appropriate sound effects. Wrong. How wrong I was to think there would be an improvement.

The third carer seemed nice upon first impressions, but it became apparent that she was not listening to anything I had said. I used a commode, therefore it made it easier for others to clean me. I told her that I had opened my bowels (well, along them lines) and asked politely if she could clean me. She barely cleaned me and I apologised before saying that I didn’t feel clean, and yet she was adamant that I was.

There’s a saying that the proof is in the pudding, well in my case, it was the proof was on my pad that it was obvious she hadn’t cleaned me. My mum had to clean me after the carer had left.

Lesson #3 – Please clean the person thoroughly, and if they tell you that they don’t feel clean, please look again. Please know that it is degrading and unacceptable for the person you are caring for, to be left unclean.

The fourth carer had an infantilised manner within minutes of entering our home. She walked over to me, got very close to me and frantically waved in my face. At this point, I’m just wondering if I appeared child-like throughout the past few days. I use a ross return (standing aid) to transfer, and I had been using it daily for the past 5 months, therefore I was more than used to it and knew what I was capable of.

The carer held the ross return in place, and as I stood up, she let go and cheered… because I stood up. I was starting to shake because she had distracted me, and stared at her in disbelief. Before she left me on the commode, to use the toilet, she started rubbing my thigh which left me feeling very awkward.

When I was fully unclothed, she was very touchy and kept placing her hands on parts of my body which she didn’t need to touch, as I am able to clean the top-half of my body. I really struggle with people touching me, for no reason at all. When she had taken me back into the living room and began dressing me, she asked my mum what happened to me.

Mum briefly explained, and along came the pity party. “Oh, you’ve been through so much!” whilst patting my thighs. I’d had enough, I mouthed to Mum, “No more”, and she nodded in agreement. When I was fully clothed, the carer didn’t touch me once.

Lesson #4 – Respect people’s boundaries, and please don’t assume that it is OK to touch unnecessarily. Please don’t patronise us, nor infantilise. We are equal.

Every disabled person deserves to be treated equally. Nothing more, and nothing less. Please.