January can be a wretched month. Cold, dark and full of funerals.
This week’s very sad news is that my great friend Carolyn’s mum has died.
Carolyn had given up work early and left Newcastle to look after her mum, also with Alzheimer’s. It was the promise of having Carolyn here as my buddy that finally persuaded me to come back to Scotland to look after Dad. We have been friends since the age of nine and our parents all knew each other, so our lives have been entwined, sometimes more closely than others, for almost half a century.
Carolyn’s mum died, unexpectedly, just before Christmas and in a foreign country – England! – which created all manner of ludicrous and distressing complications to do with the Scottish Procurator Fiscal, the English Coroner and repatriation.
The funeral last week perfectly combined a genuinely warm eulogy with really sing-able hymns and poignant readings from each of her four grandchildren. The church was full of people, many of whom would have taken time off work, or travelled quite long distances to be there.
My own mum – who died 6 years ago this week – had a phrase for when people talked about funerals being well attended and the deceased being given a great send-off. ‘Never mind flowers for the dead’, she would say, ‘how about flowers for the living!’
Some people will always find the time for a funeral, in a way that they often don’t quite manage while the person is still alive.
Carolyn’s mum was an indefatigable hostess (‘Dear God!’ Carolyn would say, ‘she’s still raring to go at 1 o’clock in the morning and I just want to go to my bed!’). Their family bonfire parties when we were growing up were legendary and there was always the immediate offer of a drink and the sense of a house busy with the comings and goings of family and friends whenever I visited recently.
But this is far from typical – either for old people in general or for dementia sufferers in particular, because there is so much about old age and dementia which frightens people, and drives them away. Maybe they think it’s catching. Or perhaps they feel they wouldn’t know what to say to someone with this ‘awful disease’. Or they may simply be too saddened by the sight of an old friend or relative diminished by illness. Carers understand that – they’re sad too!
I would say to those reluctant visitors - be brave, turn up anyway, just for 20 minutes, if only to give the carer some support. And if the person with dementia doesn’t know you, or almost immediately forgets you’ve been there, so what? For the time you were there - as long as you can find something to talk about other than illness and death, and as long as you don’t spend all your time shaking your head and muttering ‘oh dear, oh dear’ - you will have been welcome and your company enjoyed.
We are always being told to ‘live in the moment’ and that’s exactly what many people with dementia are doing.
My aunt had the memory of a goldfish at the end of her life. When I visited her care home she always greeted me with the broadest, sunniest smile as if she knew exactly who I was and, for that moment perhaps she did, and then after a while she would ask ‘Have you worked here long?’ I reckoned in the time it took me to comfort-eat a packet of crisps in the car on my journey home, she would have forgotten my visit altogether. But that’s not a reason not to go.
Keeping in touch is an expression of kindness, of loyalty, a way of repaying an earlier act of generosity or friendship; it sends a signal, however fleetingly or subliminally, that you care – both to the person with the illness and to those around them. It can be a mighty powerful source of strength.
The last time I saw Carolyn’s mum, five days before she died, she was sitting in the hairdresser’s window waiting for Carolyn to pick her up, ready to go to Newcastle for a family Christmas. I told her that Dad hadn't shaved for a few days and had a look of Captain Birdseye about him. ‘Ooh’ she said ‘I love a man with a beard! Tell him I’ll be round when I get back,’ and we giggled like teenagers.
I will miss Carolyn terribly when she moves back to be with her own family in Northumberland, but she has done her bit, bringing flowers, both real and metaphorical, for her mum every single day she was here, and her Mum just loved having her around. Carers are doing this the world over and it’s often very lonely or boring and can feel relentless. But the funeral this week is a reminder that it’s not endless, the person being cared for will die.
Of course there were flowers at the funeral, but Carolyn’s mum wouldn’t have known anything about them. Like my mum and now Dad, and all those who are isolated by dementia or other illnesses, along with all those who care for them - what we’d all really like are some flowers now.