Amanda's story

My name is Amanda, and I am a carer for my husband who is severely sight impaired. Until May last year I was a Production Planner for a multi-million pound pharmaceutical supply chain, a job I loved (most of the time). Becoming a carer crept on up me, as my husband’s eyesight loss was gradual at first. The first time it became apparent there was an issue in 2012 just as we bought our motorhome to have some adventures. For the first few years it was a minor inconvenience to him and we did have some good holidays with the motorhome and then caravan, but then his eye condition accelerated resulting in him being registered as severely sight impaired 18 months ago.  

For me I would describe being a carer as rewarding, challenging and lonely. It is difficult at times to remember I am still an individual as life quickly becomes centred on the person you care for. Perhaps the biggest challenge is maintaining a balance as a “normal couple” when caring for my husband.  It breaks my heart sometimes to listen to young carers. I at least enjoyed a career before becoming a carer. I am aware that support is available but as some of my husband’s care needs are personal he doesn’t want anyone else to do it. There are other practical issues too, as I have learnt how I need to explain things to him, how to navigate him around hazards when we are out of the home.

For a long time I didn’t recognise that I was a carer. It was a gradual transformation from doing things you take for granted as a couple to being relied upon.

It is a life changing event that no one prepares you for. I first heard of the Carer’s Support Centre by chance when I found a leaflet at the Health Centre, and read their definition of a carer.

I wish I had known about this sooner! By this time juggling work and caring was wearing me out. My employer had a flexible attitude towards parents, but not to carers, making it hard to plan any holidays as annual leave needed to be reserved for caring duties. At this point I was in touch with the Carer’s Support Centre and they were able to help me with support and tools, such as the Carer’s Passport, to take to my employer. Knowing there are people at the end of the phone for help, support, advice or even just to listen is very important.

Considering the strain that unpaid carers take off the social care system I feel we have been completely overlooked during the pandemic. Caring is a 24/7 role and the fear of catching Covid-19 and leaving my husband without care was tremendous. It increases the isolation too. I love to swim when time allows, to put my iPod in and have time in my bubble in the pool.  It boosts my mental and physical health, and I miss my friends I normally meet at the pool. For my husband’s safety he has shielded, and as I write this I haven’t left the house or garden for 154 days. Luckily we get on quite well!

There needed to have been more support from the Government to unpaid carers, as a lot of people who need care are most likely to become ill enough to need hospital treatment, so the care provided helped ease the strain on the NHS, but no help (shopping, medical) was available.

It was great to be part of the Carer’s Week exhibition in Bristol last year, and to have three of my photographs on display. Photography was our shared hobby and that is probably the part I miss the most.

Mental health inevitably takes a hit. How do you cope with the transition of a responsible job to caring? How to keep the brain active? I heard Chris Evans say on the Breakfast Show last week “the seeds of depression are sewn in the past and the seeds of anxiety is sewn in the future”. To me this summed up how caring affects you. It is hard not to look back at the things we used to enjoy, the adventures we had on our first trip in the motorhome along the Moselle Valley, and the things we planned to do but now can’t do.  As I have asthma and allergies I feel I need to be hyper vigilant as I know my husband wouldn’t be able to administer my adrenaline, and has in the past struggled to find my inhaler, and that causes anxiety of leaving him vulnerable, but there is the anxiety associated with “failure”, when he falls is it my fault for not telling him about an uneven pavement?

For other carers I would encourage them to seek support, and it is true, if you don’t look after yourself you can’t look after someone else. It is hard and sometimes feels selfish to set aside “me time” but it matters so much. It is probably the hardest and most important part of being a carer.