First of all, as this is my first post of 2014, a very happy new year to everyone whose lives are touched by dementia, whether as someone living with the disease or as someone who cares.
Someone who cares. What does that really mean? On one hand, it refers to carers, to the people who sometimes put their own lives on hold to care for a loved one. And it should also include the staff of care homes whose job it is to look after people who can no longer look after themselves. But this is only the tip of a very large and menacing iceberg because there are more and more of us who are taking on, or will take some sort of caring role.
The concept of care has been a tossed around in political circles a lot of late and only yesterday, a national newspaper headline roared:
“Soaring cost of long-term care threatens to ‘overwhelm’ NHS.”
In an interview with The Guardian, Dr Martin McShane – NHS England’s Director for Patients with Long Term Conditions – likened the issue of patients with chronic medical conditions, such as dementia, as the “healthcare equivalent to climate change.” If we can forget for one moment the fact that, in care terms, dementia isn’t regarded as a medical condition, it’s encouraging that a national newspaper should give someone with Dr McShane’s profile the platform to speak out. That said, given the degree to which some deny the existence of climate change, I’m not sure the comparison is overly helpful.
However welcome national attention on the issue is, though, until you have experience as a carer, it’s hard to appreciate the sheer scale of what we’re talking about. And please don’t think this is case of “woe is the life of a carer”. Caring can bring with it rich rewards but it can be hard, very hard, too.
As you know, Mum is in a care home and when I visited her yesterday, I had another, brief glimpse into the lives of people who care full-time. I arrived in a somewhat grumpy mood. My football team had repaid my loyalty in turning out on a filthy afternoon, by giving a supine display to bow out of the FA Cup. How trivial that seemed an hour or so later. Mum was in good spirits but any conversation was beyond us. As happens on most visits now, I turned to music and we sang along to a playlist I’ve created on my ‘phone. Our intimate little concert was interrupted several times by another resident who was very distressed. It wouldn’t be right or appropriate to go into details but it was very upsetting for the resident and, probably, for the staff although they hide it well. And it’s exhausting, trying to reason with someone who’s “living in a different place”.
I’ve got to know some of the residents who live with Mum. By “know”, I mean a shared greeting, a smile and perhaps a short chat. As I think about these people, I find myself wondering about their lives up to this point and even wishing I’d known them in earlier days. Days, in which they’d led independent, hopefully rewarding lives. Care has to mean honouring those different lives. One of Mum’s housemates joined us for a chorus of “Oh What a Beautiful Morning” yesterday. The perfect tune for a damp and dreary January evening. We all held the final note as long as possible – I lost. She left us, reprising the song as she walked back down the corridor. It brought a huge smile to my face.
I started this post with an idea of trying to give a sense of what care means. Reading it back, I’m not sure I’ve managed to do that. It’s such a challenging issue. As we head into 2014, one thing is certain. The issue of care – who pays for it, who ensures the quality of it, and how we plan for it in the future – will only become more of a challenge.
So, who cares? The answer is simple – we all have to.