Welcome to the fifth of my seven ‘mini’ blogs for UK Carers Week 2014.
As regular readers of this blog know, I cared for my father for 19 years during his vascular dementia. For the majority of that time, however, I never considered myself a carer – just a daughter looking after her dad. As I said in my G8 Dementia Summit film, “You become a carer, but you don’t realise you’ve become a carer.”
Day 5 – Does everyone feel that they can’t cope?
Possibly not everyone, but certainly most carers feel like this during their caring role and often feel like it frequently. I personally don’t ever recall meeting a carer who at some point didn’t feel that they weren’t coping, and that includes carers from many different backgrounds.
In my father’s 19 years with vascular dementia I struggled when big decisions had to be made, mostly health-related, or when we were waiting on the decisions of others, usually healthcare professionals. The absolute worst times, however, were when dad was seriously ill in hospital – as a carer you feel helpless and often very excluded from what is happening to your loved one. In those times I honestly wondered how we would get through it – the fear of losing dad was huge and so very real.
It’s easy to believe that you are the only person feeling like this. When my dad was alive I wasn’t involved in the online ‘carer community’ at all, but having become connected to it through my work I can see how valuable it is. A huge number of carers contact me through social media seeking advice, and I’m always very happy to help where I can. I also regularly look at the #dementiachallengers hashtag on twitter – it’s a place where anyone and everyone can come together to talk about dementia.
One of the most powerful testimonies of the power of social media for carers comes from the wonderful Sally who tweets as @nursemaiden. She engaged with twitter in the last hours of her father’s life, looking for reassurance with the palliative care that she and her mum were providing. Why you might ask? Simply because twitter offered her instant and informed advice thanks to the huge number of experienced professionals on the site.
A small plea from me though – for all that is great online, and there is a huge amount, we must never forget people who aren’t online. Having a computer and broadband (plus someone to teach you) isn’t an option for everyone due to cost, preference or other associated reasons. It is those people who are possibly feeling like they can’t cope most of all – another great reason why we should all look out for our neighbours and friends more, and signpost to helplines and printed materials.
Admiral Nurse Dementia Helpline: https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/
Next post on 14 June 2014.