“Keep in touch with yourselves!“ was a phrase used by my father when departing a get-together, usually followed by; “Love to the family!“ – the comedy element coming from the fact that we were the family, obviously. Like most fondly remembered sayings and mottos, you kind of had to be there, the side-splitting humour doesn’t translate terribly well and would be unlikely to win me a spin-off series, but more pertinently, I’ve realised we don’t say it to each other any more. Dad taking his leave of us is no longer an event packed full of light hearted japery – and without mum rolling her eyes at his idiosyncrasies the in-jokes lose their impact.
However, it seemed a good title for this post which is concerned with the importance of carers caring for themselves. A wealth of blog posts, newspaper columns and self-help books have been published on the topic and I suspect it’s unlikely that I am coming out with anything groundbreaking here – but as far as I’m concerned the profile of carers can never be too high, the unique and lonely plight of a carer can never be over-estimated.
It follows that if we are concerning ourselves with the needs of carers we must not only highlight the problems of burn-out / stress / depression / pure unadulterated rage – we must also look at answers to these problems. Increasingly I am aware that in this country, and throughout the developed world, we are constantly wringing our hands about our universally deteriorating mental health without addressing the possible solutions. This is usually because they involve money, whether it be funding acute and community psychiatric services or asking social media platforms (ever so nicely and politely) to stop promoting suicide sites to our vulnerable teenagers at the risk of a minor drop in their astronomical profits. Anxiety is rife, individual and collective self-confidence is at rock bottom – and most people are teetering on the edge of an existential crisis on a daily basis, worrying about climate change, antibiotic resistance, Brexit, Trump… (my current faves). Add into this febrile mix the constant, grinding hideousness of caring for someone who no longer recognises you, offers no emotional connection or payback for the care you provide and, in fact, has the potential to wound or insult you physically or verbally – and you have a recipe for a pretty miserable day.
Anyhoo! Crashing on! The reason for this post is to look at the opportunities for escapism out of this dire quagmire. The good news is that there are things you can do to lose yourself (or indeed rediscover yourself) for a while, whatever the circumstances.
1 – Twitter (other social media platforms are available but I don’t really understand them)
Recently someone contacted me on Twitter having received the devastating news of her mother’s dementia diagnosis. I recognised the panic in that single tweet and thus, hearing the claxon call of distress I responded as soon as I could. My tweeted reply alone would clearly not have been enough to single-handedly rescue this person (feel the hubris) but it did trigger a deluge of advice from all the corners of the globe. This is not because I am some sort of social influencer (‘Really?’ I hear you cry) but because it is incredibly easy to start the dominos off. Within moments there were people getting in touch offering support, advice, smiles, virtual hugs and kisses, thoughts, prayers and practical local resources (which I suspect may have been the more useful of the above).
I have talked about Twitter before and whilst I can see that there are problems with the ‘Wild West / Here there be dragons nature of the medium, I have never found it to be too antagonistic. There are some awful individuals out there but I knew that already from work and life in general. Trolls, shaming and rape threats aside, I consider Twitter to be mainly a force for good.
2 – Exercise / Physical activity / Fresh air / Walking the dog
I’ve put these all in the same category under a general heading of PE-teacher-isms and obviously all true but dull to write about.
3 – Sex and Drugs and Rock and Roll
Not dull to write about but beyond the scope of this blog and my limited coolness.
4 – Games
Not the outdoor variety as mentioned in point 2, nor the clothes off variety as mentioned in point 3, but the good old fashioned chess / bridge / cribbage / backgammon / tiddly-winks combo beloved of elderly French-men in provincial cafes and also my father, who is neither elderly nor french.
5 – Cooking and Baking
Good for many of the same reasons as point 6 below; therapeutic, practical and immersive. BUT potentially perilous for the waistline of carer, caree and attendant friends or relatives who will receive and consume the fruits of your labours with varying degrees of restraint, or lack of.
6 – Creativity / The Arts
My personal favourite; a sorely overlooked means of escapism and life enhancement in its many forms. Painting and drawing can be enormously beneficial as well as virtually free (other than materials). Pottery, sculpture, knitting and sewing are often sociable (as evidenced by the success of Stitch and Bitch groups) as well as productive of tangible items that may even be of some practical use, so long as someone like me isn’t the creator or designer.
Music too, whether listening, playing an instrument or singing – all activities can be as social or personally mindful as you wish and all have proven therapeutic benefits (it’s not a scientific journal so I’m not going to reference this comment with articles of evidence, but just ask Gareth Malone.)
And finally, the best of them all – reading and writing; free at the point of use, no spendy outlay, no materials needed – other than a book or a pencil – and the greatest ever means of escape without having to actually leave your own home, or the person you care for.
I started this blog as a means to off-load, a therapeutic intervention of sorts. I have always used writing to do this; the diaries I kept through medical school, whilst neither as side-splittingly hilarious or beautifully poignant as Adam Kaye’s This is Going to Hurt, are nonetheless fairly hair-raising and I have continued to scribble away when the mood takes me, writing articles, entering competitions and having the odd moment of recognition and success (including the offer of a book deal which admittedly looked a bit dodgy. Reader, I didn’t take it.) And writing this blog has been cathartic and satisfying for me, although you may beg to differ. But recently, as avid followers will confirm, the blog posts are dwindling. This is not because I am any busier than previously but because there is no longer very much to say. The funny anecdotes have dried up – mum simply doesn’t do anything remotely amusing any more, in fact she doesn’t do anything. Which is fine. She’s not a performing monkey after all and the blog is about me and helping others like me, not about pretending things are more entertaining than they are.
If I had wanted to write about practical and medical aspects of dementia, I would have done so. Equally, if I had wanted to give a sanitised, ‘everything is brilliant’ view, I might have considered it (unlikely – they really piss me off) but this blog was always about trying to keep things honest and lighthearted. There are plenty of sensible, seasoned bloggers out there who can tell you all you need to know about the serious aspects of dementia, and whilst I value their work enormously, I never wanted to be one of them. Equally I don’t want it to deteriorate into a bitter rant about perceived injustices – I don’t feel especially hard done by; life is shit for many people in many different and horrid ways and I consider myself lucky. I really do.
A post I wrote a few months ago basically outlined the limits of mum’s current existence and I had a profoundly upsetting comment on the back of it, telling me that I obviously didn’t love my mother and had no regard for her as a human being. It was the first time in the four-year history of mumhasdementia.com that I’ve had feedback of that sort and it wasn’t a high point, to be honest life is tough enough without additional, virtual aggro. But it was payback for being unflinchingly honest, and that is sometimes par for the course. I am not a purveyor of fake news. My product is sold as seen.
So, I will continue this blog in its slimmed down form and gain strength from the positive feedback I receive. I will continue to read all the fiction I can get my hands on and write stories until my mind is quiet – to wallow in an imaginary world when reality bites. But I urge you all – those of you caring for someone with dementia or those of you who have stumbled here accidentally – to find your thing. The thing that makes you happy – and as long as it’s not illegal and doesn’t make anyone else feel rubbish, then you crack on. Whatever gets you through the night.