Even my profoundly disabled daughter looked very concerned yesterday when she saw my puffy eyes and red nose as I struggled to get her up and dressed. I’m not feeling well, and looking worse. But of course it’s only a bad head cold, it can’t be flu because I’m out of bed 🤔
But then I have to get out of bed, because even if I hadn’t cancelled B’s morning’s carer, I would still have been on duty for the hoisting. Health and safety rules mean that two people are required to operate a hoist – apart from family carers who are expected to manage on their own. There are no guidelines about our working conditions.
I didn’t do a great job yesterday morning: B had to skip her shower, and went to her day programme with no AFOS (her leg splints) and her hair in a (very) messy bun.
The day passed in a blur – thanks to streaming eyes and nose, and I tried to rest in between the hot drinks and smoothies, which was all I could manage: I didn’t even fancy chocolate!
I haven’t been sick for a while, and the sitting down time got me thinking about the perverse situation of family carers who get ill. The State currently seems to treat the support of disabled people as a private matter, and that extends to their carers too, who are expected to have support network who can step in to help out at a moment’s notice. Really? When most families are struggling with high mortgages, long commutes, expensive and hard to find childcare, supporting elderly parents, increasing amounts of household administration and maintenance, and more?
I do have people who I can call on in an emergency, but a head cold doesn’t really qualify. My biggest worry is how I’m going to entertain my darling disabled daughter for the next two days. She loves to get out, and tonight B and I should be going to another very special birthday party that we’ve been looking forward to all year. But will I frighten the public and the party goers?
So what should family carers do if they get sick?
If I wasn’t a lone parent, or had local family support, perhaps I could’ve stayed in bed so my young adults won’t get my germs. (In my case that would be the spare room as I sleep in my disabled daughter’s room now.)
If there was emergency home respite and two care workers could visit when a family carer falls ill, then perhaps I could have taken a proper break.
When I was still in paid employment, the policy was to encourage all employees to stay at home when they were sick to avoid infecting others. For family carers, we have to tell the healthy care workers to stay at home so we don’t infect them. So when sick, we have to do more.
What happens to family carers who become completely incapacitated through illness, injury or surgery? I’m not sure, though I still have a letter from the health service promising this family round the clock support. Would it actually happen? I don’t know.
What happens to the disabled people in the care of family carers who have a health crisis at home? Especially people like my daughter who cannot call for help, leave the house or do anything to meet her basic daily needs? As I said before, if I am to care for my daughter for the rest of my life, safeguards need to be put in place. Something like a twice daily check in system to make sure that she is okay.
On a more positive note, I have been feeling grateful once again that I can escape from the house most days to do some exercise because the pent up energy is especially useful when I am sick, but have to keep going. I even considered doing #parkwalk this morning, but didn’t *quite* manage it, and as I write this mid morning I’m hopeful that I’m already on the mend: I may have been too sick for chocolate yesterday, but this morning I managed to force down a mince pie. After all, it is nearly Christmas ⛄🎄🎅