My Story as An Unpaid Carer - The Impact of Caring

For me personally, it’s my choice to care for my son full time. Despite this, it has had a big impact on our lives.

At the centre of the circle on this slide is Mr Nobody from the Mr Men. The reason I picked him to illustrate this topic will hopefully become clear soon. In addition to being Harrison’s carer, I’m still trying to maintain a sense of who I am too. 

In no particular order here are the main impacts of caring on me:

Loss of income – Not contributing financially to our family is hard for me. We did try out adult social care for Harrison so that I could go back to work but the stress that it caused all of us trying to implement it appropriately to meet his needs, outweighed the financial benefits. Instead, we adapted our expectations from life and consequently appreciate different things now.

For being Harrison’s main carer I’m paid an allowance of £69.70 per week by the Department for Work and Pensions. This equates to roughly £3,600 per year. I did a little research into the salaries for each of the jobs in my caring profile (see previous post). The average salary for those 9 jobs would be approximately £33,000 per year. So, you can see that there’s quite a substantial difference between what I’m paid for caring and what the roles would pay if I was seeking employment in just one of those positions. 

This is before you consider what my salary would likely have been if I’d have been able to continue working. The average Training Manager salary is £46,000. I like to think that I might have achieved a management role after 24 years! Apart from some temporary work which never lasted very long, due to the unpredictability of 22q Deletion Syndrome, I’ve not worked properly since Harrison was born. As a very rough comparison of my actual and potential income looks like this: £86,400 in carer’s allowance versus £1,104,000 for full time employment or £552,000 for a part-time role for roughly 17.5 hours per week over 24 years.

Loss of social life / isolation – Having to be responsive to Harrison’s medical condition has caused my relationships with some friends to deteriorate over the years. Being unreliable and cancelling meet ups at short notice meant that some friends fell by the wayside. It wasn't their fault; I can only imagine how frustrating our situation was for them. At the time it was upsetting to lose their friendship when I desperately needed their emotional support. However, over the years I've developed new friendships who are all understanding of our family situation.

The Covid-19 pandemic has re-highlighted my sense of invisibility. I felt on an equal par with the rest of society when the whole country was in lockdown. It was brilliant! Suddenly everyone had a glimpse into our lives. A highlight for me was the dance classes that I attended for my own mental health benefits, moved online. However, as soon as they were able, the dance school reopened for in person classes. Although I was able to join in virtually, it highlighted my isolation which upset me. I could see all of my friends together in class and I couldn't physically be there with them. I won’t even mention my appalling spatial awareness and inability to work out which way I was supposed to be facing or which arm or leg I should have been using! All exacerbated by having a screen between us. Unfortunately, instead of reducing my stress levels, it started to increase them, so I no longer attend. I’m coping much better by just knowing that all my friends are there but not actually seeing them in class without me.

Overwhelming sense of responsibility – I feel as though I'm muddling my way through trying to coordinate Harrison's care in adult services both medical and social care. It seems that if I don't do it nobody else will. There have been examples of this where he's been under several consultants for various parts of his condition but for whatever reasons he's not been followed up as stated in clinic letters. In paediatrics Harrison's paediatrician would have picked this up and now, because Harrison can't do it himself, it falls to me. I spend a fair amount of time calling medical secretaries trying to organise tests, therapies and appointments. I also seem to be the middleman between our local and London hospitals because they don’t always communicate very well with each other.

Emotional drain - Having to constantly think outside the box to solve problems or find a solution that works for several parties; all the chasing and coordination required; and being alert to any changes in Harrison's condition are extremely draining.

Loss of identity – Along with the loss of income, there’s also the loss of career which for me was part of my identity. I was proud of the job I had, which had improved my self-confidence and self-esteem. No longer having that to talk about with friends and family was really difficult. Perhaps I have the wrong mindset about ‘just’ being a carer but medical and other professionals involved in Harrison’s care unintentionally reinforce that when they refer to me as ‘mum’ which makes me feel inferior in the relationship with them. 

When I’m trying to establish a partnership in the best interests of my son’s care, there’s never time to find out who I really am and what skills, knowledge and experience I have.

Burnout – In the first few years of Harrison’s life, his medical condition was far more unstable and required constant supervision and interventions (therapies, feeding, medications, 24 hour oxygen support). This led me to burnout and collapse from exhaustion a couple of times. Whenever he was admitted to our children’s ward, I’d be asked who our social worker was. We’ve never been assigned one and we didn’t qualify for respite. Apparently, we appeared to be ‘coping’ and didn’t qualify for extra support schemes because we weren’t socially disadvantaged. 

Close Relationship – Although this post sounds quite negative, caring for Harrison has given us an incredible bond because we spend so much time together. I’m extremely grateful for that and can't imagine what it would be like to not be with him all day, every day. He really is a joy to be around.