Engaging a carer - and - being forced to wash my hair in hospital

The new negative results of both nerve conduction studies and a negative for TOS MRI scan hit me hard. By the late summer of 2018 I was really struggling to wash and dry my hair. I used to dread doing it as it triggered such severe pain down my arms, my left arm especially. I now had regular pins and needles in the ulnal nerve root and down my ring and little finger of the left arm.

In early September I engaged my own private carer for three hours per week to help with hair washing and drying as state paid carers wouldn't help with the task of drying hair or shopping - which was something else my carer helped with and occasionally shopping. I also bought a microwave and was taught how to use this by an Occupational Health Therapist who also provided me with further aids for my bathroom, and advised me of things to help with food preparation.

Despite the cost of having a carer, it was a huge relief to no longer have to wash my hair  - this was until I ended up in hospital in the late autumn of 2018 for pain management. I had a very uncaring Healthcare Assistant and this is what happened:

'One Sunday morning, whilst I was an inpatient in hospital for severe arm pain, a Jamaican HCA came into our bay and sighed, ‘God, you are all so boring in here, and there are too many independent patients. I like working with people who really need me.’ The fact that there was a totally bed-bound 96 year old patient next to me, who was largely uncommunicative (except to scream when being washed and changed) seemed to have escaped her notice. She announced she was Jamaican, and ‘got things done’. We all looked at her, bemused and in my case feeling guilty. She had a point in my case, I was independent, except for that very morning, I had decided that my hair needed washing, as it hadn’t been washed for five days by now and looked somewhat greasy. I had thought that I would ask whoever today’s HCA was to help me with a task that I haven’t been able to complete for myself now for several month. I bought this issue up with this HCA who I will name Gloria [not her real name]. Gloria said, ‘you are more than capable of doing that – you just need to push yourself more.’ I pondered on this statement and thought she possibly had a point, and how could just one episode of hair-washing really make me much worse, especially as I was only washing my hair and not drying it [with a hair-dryer] as well. Gloria added when making my bed that I could also ‘change all my pillowcases’. I didn’t argue with this battle-axe, and besides which, when my body has been more functional, I have always been happy to help the staff when I could. Gloria continued to moan about her obvious boredom with our bay, and I went to wash my hair.

Actually I did manage to wash my hair – OK it did cause my left arm pain, but I only did a quick job with it, and felt guilty about my need for a carer for this task. I came back to my bed, changed my pillow cases, as requested and then got back into bed. For a while things were fine. I had lunch, and then by mid-afternoon I started to have a severe headache. By the time supper had passed, this became a migraine and I began to feel queasy. I asked the nurses for anti-emetic medication and more painkillers in general as I was really suffering by now and was significantly worse than I had been 12 hours ago. At about 9pm I was given my usual night-medication and asked for more or a different type of antiemetic medication as I knew I was prescribed more than one, and still felt sick. An hour later than that and I requested a grey vomit bowl. I started to salivate and it was only matter of minutes before I dashed to the toilet and lost the contents of supper and beyond. Nurses rushed over to see if I was OK, which it was obvious I wasn’t. I was sick another two more times. One nurse said, ‘if you are sick again, I really want to see it. I need to see what colour it is.’ I thought she was a bit graphic, but I duly described the vomit as ‘largely green with food particles in it, and no blood.’ I asked for yet more antiemetic medication and more painkillers. I felt totally rotten as you do when you’ve been sick. I ached everywhere, but at least the feeling of wanting to be sick had finally passed, as I had presumably got rid of everything. I know the hospital food wasn’t marvellous, but I didn’t blame this episode on hospital food. No. I totally blamed this episode on Gloria and her request I washed my hair which I was clearly incapable of doing without causing such severe pain and migraine symptoms. I was feeling angry and upset. Not someone who causes too much fuss, had I been given help with this simple task and request, my miserable vomiting episode could have been avoided.' [extract from my new book, as yet incomplete and unpublished].

Me in hospital