Dear Bug… What Happens When Your Carer Gets Sick?

Last week I was writing about how essential carers have been in my life since becoming unwell. I spoke about how my family had had to become carers for me and how they supported me in different capacities. It seems somewhat ironic that as carers week came to an end, our household became unwell and the role of being a Carer was even more necessary.

Being my Carer is having to be able to administer emergency medication when I am struggling to breathe because of my asthma. Being called on at all hours of the night to help me when I’m in pain and have collapsed. A Carer has to be sensitive when I feel mortified at losing my dignity because I can’t get off the toilet on my own. Being a Carer means putting someone else before yourself all the time and having to sacrifice what you want to do for the person you are caring for. It means holding hands with someone who is weeping with agony, being there when the frustrations of chronic illness bubble over into a messy situation.

“A carer has to be sensitive when I feel mortified at losing my dignity because I can’t get off the toilet on my own”

There isn’t a break.

But what happens when the Carer gets sick?

Samuel has always thrived through helping me and being my Carer. It is a special quality to always put needs of someone else before you. But Samuel does it without a question. We have chosen to embrace every essence of our little world and we have made it a safe and loving environment for Felicity to grow up in.

Before we moved to Essex, we had a lot of support from a PA, but we moved just before the pandemic took hold of the world. There was not enough time to sort out employing another one because of not being able to do interviews and the whole process is too exhausting.

Our social worker desperately tried to put a package together with the right equipment to support me, as well as the care. He was then having to focus on the COVID-19 crisis that swept over us all.

My mother-in-law stepped into help – it was a godsend. But physical help is only one part of what I require, I need emotional support, which Samuel gives.

Don’t get me wrong, I am used to a secluded life due to my M.E.. I am used to the days rolling into one and when they could only be separated by days where the pain was extensive and then others when it was bearable.

I am a naturally driven person and always feel like I have to do something. Parts of me are scared of going back to the life I lived for such a long time, and so I feel like I have to mark each day by doing something. Samuel reigns me in, he knows when my energy levels are so low that I just need to lay down before I completely crash. He can sense when my blood pressure is dropping and on multiple occasions he has assisted me falling, which has definitely saved me from breaking bones.

But as of the weekend, he has been really poorly. He went down quickly and couldn’t get out of bed. His throat was causing him agony and it caused him intense pain to have anything touch his skin. He slept through the day and was tossing and turning with a cold sweat. He couldn’t eat or drink much and was just curled up in a ball on our bed.

“Nobody had thought about what the implications of this situation would cause: that goes for me too.”

But what happens when the main Carer gets sick?

Nobody had thought about what the implications of this situation would cause: that goes for me too. Samuel doesn’t get ill often, so I have never really had to think of what would happen. I know that not having to think of that all the time is in itself a privilege that I am immensely grateful for.

But I have a baby who needs feeding and playing with, I have medication that I need to take and the general suffering that chronic illness brings. Now I had to help him because he really needed me.

I counted on spoons that I had saved up in the previous weeks, I spent more than I had because I had to keep going. My family needed me.

Despite this being a daunting task, I did manage. I managed to get Felicity some food and make sure she had enough drink. I played with her until my mother-in-law came to help me so I could rest. I made sure her food was healthy and that she was dressed and changed.

In a way I managed well, but today I am suffering. After a bad night, I am in severe pain. My body hurts in more places than I know to be possible, but Samuel is still feeling really unwell. He has needed my help too. It is not just Felicity.

Within social care, very little is put in place to protect the most vulnerable people and their carers. Particularly the carers. They have to be able to work all hours of the day, but are barely given enough to survive on. I have friends who have been struggling for care, paid carers who have had to work for no money because funding wasn’t sorted out quick enough. I know that Samuel’s health problem is short term issue. Give it a few days and he will be back on his feet. Other members of my family that were my carers, have become unwell on the long term and that is a challenge.

But I wonder how much of this shielding has been really thought out? What has been put in place for if a family member or Carer gets unwell? It seems we have been left in complete uncertainty.

So at the moment I’m trying to tread water. I’m trying to be there to support Samuel and then be able to look after my little munchkin. My needs have to wait, as much as they can. And only now do I realise the true magnitude of the sacrifice carers make for those they look after. I just wish I could thank them all.