I’ve discussed the difficulties of broaching the subject of dementia with my kids in previous posts and the lack of appropriate resources for the task but it seems this is improving. Many of the books aimed at children are American and have just too much ‘Geee Mom! Why did Grandpop just steal my candy?’ in them to hit the spot for your average UK kid but there are a few British ones filling the void and a lovely project underway with AllyBallyBee to design personalised books for children with dementia in the family.
My kids now understand a lot more about dementia, partly because they are older and partly because the problems are much clearer. We have moved on from explaining the subtle differences between the two grandmothers (demented granny and fully cognisant granny – I clearly don’t use those terms out loud) because it is so roaringly obvious that there is something seriously wrong with demented granny now. One of the benefits of the Alzheimer’s progressing is that bizarrely some of the social embarrassment eases (my social embarrassment you understand – I know it shouldn’t matter – but it does). Nowadays she looks like there is something wrong with her. She has the kind of glazed expression that universally indicates not much is going on upstairs. As a doctor I have no way of describing that particular clinical sign but there is something about the way she looks and the way she moves now that makes everything clearer to the wider public. In the past there have been times where I wanted to whip out a sign behind mum’s head that said PLEASE DON’T THINK SHE’S BEING RUDE. I KNOW SHE LOOKS FINE BUT SHE HAS ALZHEIMER’S DISEASE AND THAT IS THE REASON SHE JUST IGNORED YOU / TRIED TO SIT ON YOUR LAP / BURPED IN YOUR FACE*. In the same way that when your child does something mortifying you may want a sign that says DON’T JUDGE ME OR MY PARENTING JUST BECAUSE MY SMALL DAUGHTER HAS YELLED OUT THE PHRASE “PENIS, PENIS, I LOVE PENIS” AT THE TOP OF HER VOICE IN THE SWIMMING POOL CHANGING ROOMS.
*Just to clarify – mum has never actually burped in someone’s face. My five year old daughter however has made the penis comment – following a discussion about biologically appropriate nomenclature but I’m sure we’ve all been there. Maybe not….
There have also been many occasions where I have had to explain to the children that because granny has dementia she is able to take certain liberties. For example, at mealtimes it is hard to understand that you cannot simply reach over to your sibling’s plate, spear one of their sausages with your fork and transfer it directly to your mouth. But granny can. She can pick whatever she likes off someone else’s plate with impunity and only yesterday finished off the last three remaining slices of lemon tart, literally digging it out of the bowl with her fingers and scooping it into her mouth, without so much as a glance in the direction of the children who were requesting extras. According to dad, at a recent wake after the funeral of a close friend, she reached over to a complete stranger’s plate and stole one of their canapes – comedy and tragedy in perfect harmony.
If outright food theft is now the norm then other dining formalities become even tougher to explain to children, let alone enforce. It is hard to understand that conventionally we might wait for everyone at the table to have been served before we start eating but granny can start whenever she likes – in fact, given the very real possibility of one’s meal disappearing into granny’s mouth it is probably best to crack on as soon as your food hits your plate. Equally, granny can interrupt conversations, wander off when she’s bored and, on the occasions where she does string a few coherent words together, can be as rude as she likes. The best example of this occurred last month when my sister overheard mum expressing her concerns about American foreign policy by saying ‘Trump!‘ loudly followed by a muttered ‘Cock!‘ a few seconds later. A more fitting presidential tribute I could not conceive but I have to say that there are times that I am relieved her language is now so limited – god only knows what she’d come out with if she could only articulate it properly.
So, it’s clear that some of mum’s behaviour now is about as socially acceptable as a fart in a lift but the children are tolerant and sometimes even amused by it (even if they are a little hungrier than previously). The bigger challenge is making the children understand that they fall down the pecking order in terms of priority when mum is around. If we take granny to the cinema we can’t necessarily sit where we want to or eat what we’d like. We have to allow extra time for toilet stops and the slow gathering of belongings, the eternity it takes to put on a pair of shoes and a coat or to walk across a car park. If granny is staying overnight they need to understand that mummy will not be available to help them get dressed in the morning because she is occupied dressing granny. It is not acceptable for one of my children to bellow ‘WHERE ARE MY BOXERS‘ repeatedly and stomp round the house whilst I play ‘put mum’s foot in the right knicker-hole’ or wrestle an unruly bra-strap across my mother’s ample bosom. A lesson my son learnt to his cost only last weekend when I totally lost the plot, screamed that he was selfish and didn’t care about granny, said I couldn’t bear to be around him when he was such a horrid little boy and generally ranted on and on until I made myself hoarse. I reflected, way too late, that my outburst had stemmed entirely from my own frustrations and felt hideously guilty for days after. Because I don’t want my children to see granny as a negative in their lives. I don’t want them to associate her arrival in the house with trouble and distress, to dread granny’s visits because they inevitably lead to mummy shouting and becoming generally deranged. My mum is so placid and easy-going now that my snorting impatience and teeth-clenching hysteria seem misplaced and inappropriate. It feels like a moral failing to show the children that I am struggling to divvy up my reserves of love and affection but it isn’t fair that they get less of my attention and I have nowhere to vent that sense of injustice. Maybe I’ll just take a leaf out of her book and start shouting “Cock!” at the top of my voice whilst helping myself to extra pudding.