The Lonely Reality of Avoiding Being Alone

As someone who requires skilled support 24 hours a day I’m never really on my own – but if I am it’s because I’ve failed. Failed, that is, to meet my most basic need, the continuous presence of someone who can keep me safe, someone who can administer emergency medication if necessary, who can prevent friction burns from my repetitive movements, or who can turn me over so I can breathe.

The implications of being alone are big, and well understood by my friends, family, and support team. Ultimately, though, the responsibility for maintaining my support rests with me. If I fail in this ongoing task, not only am I at risk I also put pressure on some of the most important relationships in my life.

It’s relentless: every day of every week I think about who’s with me when, and who’s supporting me next. Support gaps loom in my calendar like craters in a landscape, ready to disrupt the flow of my day, causing friction and anxiety, swallowing up my time and getting ever more threatening the closer they get.

Managing all this can feel very lonely!

I’m lucky to have a support package that meets most of my needs, and an employer who understands these pressures, as well as friends and family who step in in emergencies. Without this I’d be at risk much more of the time. But the emotional energy of constantly ensuring I’m supported is substantial, and creates invisible pressure.

Today for example, alongside my regular work, I was trying to cover a series of gaps I have over the weekend – texting between meetings, wracking my brain for who else I could ask, and rejigging my plans to make it easier to cover. I hadn’t realised how intensely I was feeling this pressure until I got a text from someone saying they wouldn’t be able to help, that made me burst into tears in the middle of the street. Claire, who was with me today immediately asked what was wrong and comforted me, and as always her empathy, understanding and acknowledgement helped me feel a little less alone.

In April, I began recording data on the time I spend organising and managing my care. I wanted to understand how this extra labour was made up and potentially explore creative ways to make it visible to others. This process has revealed that the time splits into six categories. The first three are actions I or others do, and the last three are consequences of something going wrong:

1) Care Communication – Time spent communicating about my care
2) Care Admin – Time spent on care-related admin, like payroll or local authority monitoring
3) Care Cover – The times people provided me with cover at short notice
4) Support Gaps – Times I’ve been without support
5) Relationship Strain – Arguments, upset or tension that relate to my care
6) Disruption – This includes having to change my plans by, for example, having to stay at my sister’s overnight, or times I’ve had to restrict my activities by, for example, having to stay in bed, or by disrupting important tasks, for example when I take my medication

I’ve been recording this information for almost six months and so far I’ve discovered that I spent an average of 4.5 hrs a week on care-related communication and admin.

I spend about 1.5 hrs alone because people are late or there’s a last-minute issue with care. My support team, friends, family, and colleagues have provided cover 136 times since April. I’ve cried because of care related arguments or relationship strain 30 times – including today.

I’ve been exploring ways to turn this information into images and here are a couple of early experiments:

A digital image by Jess Thom, black title text reads – Visualising Care, six months of care related labour. The image below is made of colourful dots each with a black outline. These are arranged in a spiral. The dots at the centre are in April and those at the edge of the spiral are from September. This image shows the different types of labour in the order they occurred. Grey dots signify the end of a month. There are three empty dots with no colour at the end of the spiral which represent all the work left to come. A key in the bottom left of the image describes what the colours mean: Bright blue is communication with PA’s, green is emergency cover, yellow is care related admin, orange is critical task impacted and red is plans impacted, dark blue is a care cancelation, black is a support gap and purple is relationship strain. Blue is the most common colour and purple the least.

A digital image by Jess Thom, black title text reads – Visualising Care, six months of care related labour. The image below is made of colourful dots each with a black outline, these are grouped by six type of labour. The biggest quantities are at the top of the image, on the left are 276 blue dots showing care communication and on the right 136 green dots show cover. Below these are four smaller groupings of dots, yellow for care admin, red for disruption, black for support gaps and the smallest number of 30 dots is purple representing relationship strain. A digital image by Jess Thom, black title text reads – Visualising Care, six months of care related labour. The image below is made of colourful dots each with a black outline. These are arranged in rings. 30 purple dots are at the centre representing relationship strain, they are surrounded by a ring of 34 black dots representing support gaps, the next ring of 55 red dots is disruption to tasks or plans. A ring of 87 yellow dots shows care related admin each dot has a number inside to show the number of minutes used on each occasion. 136 green dots show times people have covered Jess’s support. The outer ring of blue dots is the largest, numbering 276 this is care related communication and these also have the minutes used recorded. A photograph showing a pile of confetti like paper shapes each shape represents work Jess Thom has undertaken organising her care. The pile is six months’ worth of work. There are six different shapes representing different types of labour. Some are cut out of old care admin paper work. There are black circles that represent support gaps and colourful stars that represent times people have covered Jess’s support at short notice. A black and white digitally created image showing six months worth of care related labour. The image is made out of six stamps each repeatedly used in rings to represent different types of work. The larger the quantity of work the closer to the edge of the image it is. The detail of the stamps is less visible in this version. At the centre are 30 stamps made using a stretched heart shape to show relationship strain, 34 swirling black hole stamps show support gaps, the next ring out is of an exclamation mark inspired stamp to show 55 critical tasks have been impacted, 87 laptop images represent care related admin and 137 mesh patterned stamps show support gaps that have been covered. The largest amount of stamps – 276 at the edge of the image is made from arrows going back and forth which illustrates care related admin. This image is a work in progress.

While this extra labour can feel overwhelming, it’s part of what I need to do to live independently. As well as highlighting the extra pressure I’m under, measuring time in this way also provides evidence that I’m in control of my care. This is something I never take for granted, especially at a time when some local authorities are trying to push through rules that could force disabled people into residential care homes because it’s cheaper than supporting them to live independently. This is one of my biggest fears.

I’m recording this data and making these images because this work is a fact of life for many disabled people, and something that’s rarely considered by those who don’t experience it.

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