How I work with my carers to fend off COVID-19

27 March, 2020

How do you practise social distancing while receiving necessary personal care from your disability support workers? Peter Van Benthem, who lives with a complete C4 spinal cord injury, shares his approach.

I have asked my carers to make a few changes when they come inside my home.

I have a small table near the door where my carers come in. I ask my carers to leave their phones on that table, and then to wash their hands very carefully.

A carer can use her phone whenever she likes, but after using it she washes her hands again.

I suggest that my carers take a planned break every now and again outside, to clear their nose or throat. I am really happy to allow time for that.

These are interesting times for anyone with a spinal cord injury, or another condition that affects their breathing.

They’re especially interesting if your way of life relies on people coming into your home to support you.

And they get really interesting if that support includes personal care, like mine does. 

We’ve got even more reason than most people to take precautions against catching coronavirus disease – or COVID-19 as it’s named officially. 

But just to get through the day, we have to set aside one of the most strongly recommended precautions, which is about social distancing: don’t let other people into your personal space.

Extra precautions

While the coronavirus may seem like a scenario from a science fiction novel, the situation for people who need personal care is not all that novel, as many readers will understand well.

You don’t want to get the flu either, because it too can make you very sick. And that’s every year.

And you trust your carers to make sure they don’t bring it to you.

That said, I’m concerned enough about coronavirus to put some extra precautions in place. I’m not saying these are for everybody – I’m just sharing with you what I do at the moment.

My carers care about me 

Is my own home free from infection? That’s where I start. This is a good time to apply better cleaning practices, and I use good hygiene and social distancing to avoid bringing a respiratory infection into my house. So do the people I live with – no one wants me to get sick.

Now I'm confident my home is a healthy place, I need to keep it that way.

My first and key extra precaution with each of my support workers was to have an honest talk about their risk of coronavirus infection. 

Have they been near people who were recently overseas, or who have been diagnosed with the virus? Have they been following all the recommendations about avoiding infection?

I know my carers are there to support me. They do not want to put me in jeopardy, and so they will be honest with me. 

My carers take new precautions

Things have changed, and I have asked my carers to make a few changes when they come inside my home.

When a support worker comes in, I ask that she takes off her coat and leaves it outside. My house is always kept warm.

I have a small table near the door where my carers come in, and a place nearby for personal belongings such as bags.

Carers put their bag in that place, and they put their phone on the table.

Then they wash their hands, very carefully.

A carer can use her phone whenever she likes. But after using it, she always washes her hands again.

These things preserve my sense that my house is free from infection.

In my original draft of this blog, I shared that I also asked my carers to swap their shoes for slippers at my front door. People have pointed out kindly, and they are right, that if I want my carers to leave their shoes outside, I need to supply them with shoes to wear inside that protect their feet. The shoes also need to comply with other relevant occupational health and safety standards, because my home is a workplace for my support workers.

When you need to get close

My carers and I are comfortable with one another when we need to be physically close for personal care.

I know they believe they are not carrying an infection. I also know they are as concerned as I am about our not infecting one another.

We turn our faces away from one another if we have to be close together – but we would do that anyway. It’s just etiquette.

We need to practise social distancing where possible, but with personal care this is not always possible. 

Yes, being physically close to someone introduces a risk. So you do that only when necessary, and you minimise the risk. That is all you can do.

We plan for some cough-ee breaks

I ask carers to avoid coughing or sneezing inside my house. So that they can do this, I suggest that they take time out every now and again to clear their throat or their nose. 

I ask my carer to go outside when she does this. I ask her to plan ahead so that she can leave the house in an orderly way, and I let her know that she can take as long as she needs to feel comfortable.

I have to allow the time for that, but I am really happy to do so because it makes me feel more secure.

Of course, she will wash her hands carefully as soon as she comes back inside.

My kitchen bench no longer multi-tasks

I will still go out into the community when that is necessary – such as when I need to pick up essential items from a shop. I am not touching anything: it is my carers who are gathering my supplies. When we come home, they wash their hands.

However, in other times, after my wife, Shireen, or I came back from shopping for groceries, we would dump stuff on the kitchen bench. That has stopped.

I reserve my kitchen bench for food preparation, and nothing that comes in from outside gets placed or stored there.

The bench also gets wiped down more regularly through the day, with soap and water. If you are not living with someone who can do that for you, you can ask your carers to do it before they leave.

The table near the door where people put phones, and the place where they leave bags, also gets disinfected every day.

Tell us all about what you are doing

So those are the main things I am doing differently to keep myself healthy in these unusual times. 

Do you think I am doing enough? Do you think I am doing too much? 

Are you doing anything differently, that you would like to share with the AQA community? 

If you are a carer, do you have concerns or suggestions that you would like to share with us all?

You can leave a comment under this article, or tell us on the AQA Spire Facebook page. 

This blog has been updated.

Peter Van Benthem is Peer Support Coordinator with AQA Spire. He has been living with a complete C4 spinal cord injury since 1999.

Tags: Blog, Health & Wellbeing