Fair warning, I promised myself one really self-pitying blog post and I have been saving up the venom and vitriol so if you would rather chew off your own arm that hear the unreasonable wallowing in grief that I am about to put down on screen then walk away now. First off can I just say
IT IS SO BLOODY UNFAIR
and can then I just say
WHY DID THIS HAVE TO HAPPEN TO MY MUM AND TO MY FAMILY?
WHY COULDN’T SHE HAVE GOT SOME OTHER DISEASE?
WHY DID SHE NEED TO GET ANY DISEASE AT ALL BECAUSE LETS FACE IT SHE’S ONLY IN HER SIXTIES AND MOST OTHER PEOPLE HER AGE HAVE A TOUCH OF MILD ARTHRITIS TO COMPLAIN ABOUT?
WHY DID SHE HAVE TO GET IT SO YOUNG – COULDN’T IT HAVE WAITED UNTIL AT LEAST HER EIGHTIES WHEN ALL HER FRIENDS WERE DROPPING LIKE FLIES OR WANDERING ROUND WITH SAUCEPANS ON THEIR HEADS? (she’s never done that)
WHY IS IT THAT OTHER PEOPLE WITH DEMENTIA WHO FEATURE PROMINENTLY ON SOCIAL MEDIA SEEM ABLE TO COORDINATE PUBLICITY CAMPAIGNS, WRITE BOOKS, COMPLETE PHDs AND MY MUM CAN’T EVEN FINISH A SENTENCE? HOW CAN THEY TALK ABOUT REDUCING STIGMA WHEN MY MUM CAN”T EVEN SAY STIGMA ANY MORE? WHY HAS SHE GOT THE REALLY EXTREME SHIT VERSION OF THE DISEASE?
WHY WON’T MY KIDS EVER GET TO KNOW HOW LOVELY THEIR GRANDMOTHER WAS?
HOW UNSPEAKABLY CRUEL IS IT THAT THE ONE THING SHE WANTED IN LIFE WAS TO HAVE GRANDCHILDREN AND NOW SHE BARELY REGISTERS IF THEY ARE IN THE ROOM WITH HER?
OK- deep breaths and no more violently coloured text and capitals (I got a bit carried away with the wordpress toolbar) .
The odd thing about watching someone you love progress down the Alzheimer’s road is that it takes such a long time. Most other people faced with a terminal illness in the family have to adjust to their loss relatively quickly. They may cherish the months they have whilst also finding them unbearably poignant as their loved one fades away. Alzheimer’s takes bloody years – years of slow depressing decline. As a result it is rare that one experiences a sudden pang of loss or high emotion. I am seldom tearful because it feels as though this illness has been part of our lives for so long that it would seem odd to suddenly become upset. The dementia barely registers as unusual now – it is simply part of our life. Various coping mechanisms have imperceptibly kicked in and we muddle along with a low-grade undercurrent of sadness instead of the overwhelming grief of sudden bereavement. But still, occasionally it hits you. My sister went to the cinema with a group of friends to go and see ‘Bad Moms’ and at the end of the film there is a sections where the actresses are seen with their real-life ‘Moms’ talking about their relationships, how they were as children etc. My sister looked around and realised that every one of her friends was observing these interactions with an idea of their own mother-daughter relationship in their head, imagining the responses their mums would give, the smiling reminiscences they would share.
My mum has lost the ability to reminisce. I think she may have lost all memory of raising us. She still loves babies so there is clearly a maternal instinct lurking beneath the surface (I am reminded of the elderly women I see in nursing homes carrying dollies round – I think mum will be one of them, just not so elderly). Certainly even if she does have recollections of our youthful past we will never be able to access them – we will never be able to ask her advice about how to raise our children, how to navigate the overwhelming abundance of useless information about parenting and come up with the gems, how to chart your own course through the quagmire of school mum support / bullying that goes on – I was once roundly chastised by another mum who felt I was weaning my baby too early and would damage her health forever if I persisted in my wilful baby-rice and puree campaign. It was only because I am a doctor, married to a paediatrician and this was my third baby to have been weaned in exactly the same fashion that I was able to tell her politely to F*** OFF and MIND YOUR OWN F***ING BUSINESS. Had I not been a medical professional, or if it had been my first baby I would probably have consulted with the one person I knew who had successfully weaned children without bringing about some horrific immunological compromise – my own mother. I would have sought her advice about navigating many aspects of toddler behaviour; asked her opinions about time out, the naughty step, screen time and tantrums amongst the many angst–ridden subjects of early parenthood. I would have liked to ask her about how to discuss bras, periods, dieting, body image and boyfriends with my daughters. How to explain the oddities of female friendships and behaviour to them, why sometimes girls are bitches to each other for really confusing reasons.
And it’s not just the children I need maternal advice about. I want to know whether I’m too old to have long hair, whether I should hang on to my bootcut trousers for when they become fashionable again, whether I should aim to lose a stone or just accept that I will never get back to my wedding weight and if I did my face would probably cave in under the wrinkles. I would have liked to ask her why it still hurts at the grand old age of forty to not be invited to a friend’s party and whether one ever grows out of that (maybe the answer is simply to wait for the dementia to kick in and then you don’t even notice that there is a party, let alone that nobody wants you there). Whilst there was never a great intellectual connection between my mother and I there are areas of life where I would have massively valued her experience and wisdom. There are things that only a mother can tell you and I didn’t realise I needed to ask until it was too late.
So – my summary sentence to wrap up this mawkish wallowing is this – If you have a mother and she is alive and has some remaining cognitive function, ask her as many questions as you can possibly muster. ASK her about everything you might need her advice on now and in the future (curtains / herbaceous borders / puff-pastry / stretch marks / divorce). Her opinions may be ill-informed, poorly judged and not correlate with your own instincts but she knows you better than anyone else and one day it might just come in handy.