Carer's questions - Does everyone feel that they can’t cope?

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."

For UK Carers Week 2014, I want to focus on questions carers often ask me, and indeed many questions I frequently asked myself during my father’s dementia. 

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.  

Further reading:

D4Dementia: 'Caring for carers'

D4Dementia: 'Be inspired, be very inspired'

D4Dementia: 'The carer's job description'

All D4Dementia blog posts for Carers, including many with tips and advice on coping with particular aspects of your loved one's dementia

External links: 

Carers Direct helpline: http://www.nhs.uk/carersdirect/carerslives/updates/pages/carersdirecthelpline.aspx

Admiral Nursing Direct: http://www.dementiauk.org/information-support/admiral-nursing-direct/

Dementia Action Alliance Carers' Call to Action: http://www.dementiaaction.org.uk/carers

Carers UK: http://www.carersuk.org/

Carers Trust: http://www.carers.org/

Carers Direct: http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx

Carers Week: http://www.carersweek.org/

Next post on 14 June 2014.
Until then...

You can follow me on Twitter: @bethyb1886

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Good to talk?

Having had 19 years of first-hand experience with dementia, I always find it very interesting listening to other people talking about it. By far the most powerful accounts are, for me, those that come from people who are living with dementia, those who are looking after them, and carers whose dementia journey with their loved one has come to an end.

Perhaps that is because of my background and close personal involvement in caring for my father, or maybe it is because there isn’t a theory, concept, project, service, product or sound bite that sums up dementia, explains it, makes it real and shows us a way forward like listening to people who actually know what living with dementia REALLY means. Tales of day-to-day struggles coupled with humour, honesty and warmth are, in my opinion, the greatest education tool for anyone working in dementia care who lacks their own personal family experience of this disease.

I will never look at dementia from a ‘professionals’ point of view. I am not medically qualified, I am not an academic, and incidentally I am not seeking to become either (probably a little too long in the tooth now anyway!). In that regard I suspect that I was in the minority at the 7th UK Dementia Congress, but then again I was also in the advantageous position of listening to people who are living with dementia talk and seeing so much of my dad in them from his earlier years with this disease.

Back then no one really spoke about dementia – now everyone is talking about it. The awareness is fantastic but I do not want dementia to just be another trendy bandwagon to jump on, or for real progress in care to be drowned in jargon, with business people trying to out-do each other for the latest, greatest idea. If there is one piece of advice I have for anyone in dementia care, it is that in my experiences with my father and many others the best aspects of good care are also the simplest.

That does not mean, however, that we cannot embrace new ideas. For me, two of the most enjoyable presentations I saw were from professionals who had come from overseas to explain how they are enhancing the lives of people with dementia. Randy Lee Griffin from the United States spoke about a program to bring the joy of birds, bird-watching and nature to people with dementia – a brilliant idea that reminded me of my father’s love of the great outdoors, how much he enjoyed watching and hearing birds whilst outside, the CD of birdsong that he had in his room, and a life-like soft toy cockerel that his hands spent many hours examining.

Yolanda Brand from South Africa detailed how her care home have enabled residents to keep in touch with their loved ones via social networking – a fantastic idea, not designed to in any way replace visiting or personal interaction, but to enhance communication when families are far away. To me it spoke volumes about the importance of families in dementia care, something that I feel needs to be emphasised far more than it is. It is vital to not only acknowledge and support those who are caring for a loved one with dementia and the many family members who are touched by this disease, but to tap into the unique knowledge base that they offer to professionals and policy makers (something that I wrote about in this post on good dementia policy).

For anyone reading this wondering if all the talking really changes anything, I would say that no matter how good talking is, action is what really matters. Many people are striving to do excellent work and my many colleagues within Dementia Challengers (#dementiachallengers) are testimony to that, but my thoughts during the Congress were predominantly focused on the people who were not there. Those whose dementia meant that they could not attend, those who were caring for someone with dementia whilst we were all talking and listening, those who were hearing a dementia diagnosis from their doctor, and those who were mourning the passing of a loved one as their dementia journey ended. They are and should always be the focus of everything anyone does in dementia care.

Should you need inspiration to keep that focus, I hope my last tale from the Congress will provide it. I was in the reception hall having just arrived when I met, via the person I had travelled with, one of the speakers that day. Introduced to me as Trevor, he greeted me warmly, shook my hand and kissed me on both cheeks. We exchanged a few words and then he left. When I met him I thought he was one of the many professional speakers at the event. I only discovered later, as he took to the main stage, that he was living with dementia.  A moment to reflect, perhaps, on who the real experts are.

Until next time...

You can follow me on Twitter: @bethyb1886

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