This April, we are focusing on the theme of wellbeing. To honour that, Geraldine has written a special instalment of her ‘Midsummer madness’ column in which she discusses the ways she takes care of herself whilst managing the care of her husband…
You can find the previous instalment of Geraldine’s column here.
I have seldom come so close to killing anyone as the carer support worker who phoned me up at 7am one sunny Sunday morning, after a disturbed night, to tell me “how important it is for carers to look after themselves…”
I forbore to point out the irony of this ill-timed reminder, which says a good deal for my innate sweetness of character, but to be fair she wasn’t absolutely wrong…
Just as passengers in a crashing plane are advised to put their own oxygen masks on first, so carers are advised to look after themselves, take time off for good behaviour and not to drink too much gin.
The only trouble is that I have yet to meet anyone who can explain how the conflicting demands of being the 24/7 carer to an adult with dementia, can be reconciled with the need to take care of oneself.
And as for taking time off – frankly, finding five minutes to pee in peace is a treat…
In the early days I asked a dear friend and long-term carer how she managed.
She laughed dryly, and said “Screaming into a pillow helps…”
And she wasn’t wrong either.
But “caring” isn’t a role any of us seek out – it is thrust upon us by illness or accident, necessity and family affection…and we all have to muddle our own way through it as best we can.
The start of my own caring responsibilities coincided with the end of lockdown and, in many ways, that was a blessing.
We had already had months of semi house-arrest and, if nothing else, lockdown had taught me the importance of staying in touch with friends and family – and introduced me to the wonders of Zoom, which has been a life-saver.
But I think the first thing which helped me cope was simply to accept that life was going to be a whole lot different from what I could ever have imagined.
We had owned a second home in France for many years, for example, and although – thank God!– we had sold it just before lock down we were still looking forward to resuming our favourite hobby of “going to France a lot”.
But Patrick’s decline was so rapid – a matter of weeks – that I quickly understood we were facing a very much home-based existence from then on. I realised I would simply have to come to terms with that.
Indeed, I had to make peace with the fact that last minute disappointments were to be a new way of life.
Even the most modest of plans were likely to be thrown into disarray, as – fingers crossed, hope for the best – I could never be sure if we would actually be able to carry them out, or if we would be spending another long day in Casualty.
So I have learned to live life one day at a time and not to get my hopes up about anything because there is always a 50/50 chance it won’t happen.
This may sound a bit defeatist but acceptance of our new reality was easier than constantly chafing at the bit and asking an unkind Fate, “why us?”.
We were, in that popular expression, where we were and raging against Fortune wasn’t going to help any.
And the very first thing I did was start a diary.
I didn’t realise at the time that journaling is something carers are recommended to do, but as a retired journalist it helped get my thoughts in order.
Getting stuff off my chest was cathartic, and recording the highs as well as the lows of our new lives as the months passed helped me to keep track of how things were going.
And I had been writing my diary for about three months when it occurred to me that other carers might be interested.
Initially I shared it somewhat tentatively, but I was overwhelmed and heartened by the kindness of the responses it received.
Even if I wasn’t able to get out very much, I valued the army of kind strangers who got in touch after each new episode of our story – and was glad too that so many of them said they felt less alone in their troubles after reading it.
I have always enjoyed my home – I am a good cook, and even if I was hosting friends a great deal less often I still put an effort into the meals we had at home.
My garden has also proved a place of solace – it is beautiful in the summer, and never more so than in the months following Patrick’s diagnosis, when it proved a tranquil haven in which I could lose myself.
And I love reading.
On ‘bad’ days this isn’t always easy. Patrick will interrupt endlessly as I read and reread the same paragraph, but at worst I try to squeeze in half an hour late at night while I listen over the baby alarm for him to settle down to sleep.
And first thing every morning I do the Telegraph Codewords puzzle, Quordle and Cladder, just to check that at least one of us is still firing on all cylinders…
I have always enjoyed craft work of various kinds, and renovating dolls houses for each of my granddaughters has proved a happy way to be creative while enjoying classic drama on Radio 4.
I recently discovered an unsuspected aptitude for needle felting… and on tough days repeatedly stabbing a wad of wool can be a good substitute for murder…
And I value more than ever the friends and neighbours who have arrived with a kind word, a bunch of flowers or a bottle of craft gin when things have started to get on top of me.
But I do remember the advice and try not to drink it with a straw from the bottle…
Geraldine Durrant is a retired journalist, feature writer and children’s author who – since her husband was diagnosed with dementia a year ago – has kept a diary about her experiences as his carer. We have the privilege of publishing Geraldine’s incredibly personal story on our blog every Saturday, so keep your eye out for more on this series next Saturday.
If Geraldine’s writing resonates with you in some way, please do leave a comment to let her know.