Entering a World I Didn’t Know Existed

Entering a World I Didn’t Know Existed

My partner had a stroke In April 2022 – just before my 70th birthday – and in the following two and a half years I became his (very unhappy) Carer. One thing that only really occurs to me now – is how I was totally in shock and grief for all that time – and how invisible I was – how unacknowledged – how ignored – but how could it have been otherwise?

Taking on the role of a carer
So being thrust into the role of a Carer – against my will – with nowhere near the much needed skillset – it was truly a nightmare. Whilst feeling sympathetic to the pressure everyone is under – when you really need the front-line services and they exclude you – the Carer – it’s too hard to bear. I see that things have greatly improved since that time – there is much more awareness of the role of the Carer and much more appreciation for all that we do. And this is a wonderful, vital thing.

But for me – from the start – everything was wrong – the totally inappropriate accommodation for someone who could no longer safely walk unaided. I remember vague murmurings about talking to the Council – as if there was some magic supply of perfect accommodation just waiting to be accessed – and neither of us wanted to move anyway. And the realisation that there was a process going on I totally didn’t understand.

Dealing with outside carers and managing the system
The Carers. The shock on their faces when they realized I didn’t have a microwave and their panicked phone calls to their managers asking what they should do. I stood there. I explained that I cooked his meals. What was the problem? And I actually heard myself ask if I should go and buy a microwave – such was the state of my ignorance and confusion. Many are the stories of that time.

Concluding what was best for us
From meetings I learned that most Carers are women over 60 with their own chronic health problems that get ignored as there is not time for oneself. Eventually I made the incredibly hard decision to put him into an excellent local Care Home. I experienced some resistance from other Carers re this – there seemed to be a fierce pride and ownership of being a Carer that I had never felt and that was, in fact, actually killing me. He has been settled there for over a year now and I am still processing the shock and the grief of what happened to us and our long-standing (almost 40 years!) relationship.

What really helped and could help
What did help was the peer group support of the Carers for Carers meetings and the person on the end of the phone at the Carer’s Hub or Age UK when I really needed it. Lifelines. Lifelines to help with the never-ending loneliness. And I am eternally grateful. Islington has an exceptional Carer’s Hub and the selflessness of the volunteer Carers who run the monthly coffee mornings and provide a huge range of resources – that really makes a difference. Their welcoming smiles and positivity and real heartfelt love is a such a tonic for us all.