Dementia – a note for my children

Over heard telephone conversation between two of my sons.

” Mum has lost the tea she has just made.”

“Again – she’s becoming Nana.”

No I am not , I shout – or am I?

It get’s me thinking maybe I should compose a briefing for my children.

What to do if I get dementia?

Many years ago, when your Nana started getting confused you asked. “What do you want us to do if you get like this mummy?”

It’s a tough one. They watched me care for my mother with patience, love and humour and I would like to think it showed them the way. But they are not me.

 When I began what, I call ‘the journey’ with my mother when she was first diagnosed with dementia I made an important decision – do it with good grace and celebrate the good bits.  And there are quite a lot of good bits. For one thing, she forgot a lot of things that you used to make her angry particularly who she bore grudges with. And my mother was a big grudge bearer.

It was a journey not to the far-flung corners of the world, or something that I particularly looked forward to. It was an altogether different kind of trip, where I knew the road would be rocky, unpredictable, sometimes very painful, and    sadly not with a  happy ending. But while she was here and I was in charge, we were going to have a lot of laughs.  And that is the thing with dementia it is how you approach it that makes all the difference, especially in the early and middle stages. Admittedly towards the end it can get a bit grim. And in that case boys just give me the pills!!

My mother was 82 when she got dementia –  Vascular Dementia, which means the poor brain is isn’t getting enough oxygen – it is being attacked on all fronts and doesn’t stand a chance.  Dementia  is one of those few words, like ‘cancer’ or ‘coma’ that seems to carry a primeval power.  It doesn’t matter what advances have been made, what treatments there are nowadays; it conveys a finality, a definitiveness that instantly redefines life. It is horrible, irrevocable, and merciless.  I didn’t know how rapidly she would  deteriorate but I did know that we would travel the road together.  

We had become part of a growing statistic –  a new socio-demo-psycho-medico-political segment. Somewhere out there, a computer was whirring away and saying ‘Don’t send them holiday brochures anymore’.  And just when my children were almost grown up and becoming independent and I had thought that I was getting back my freedom – puff, just like that, I had to start parenting all over again, only this time for my mother.  I would be lying if I didn’t admit to you boys that there were some days when I had some very uncharitable thoughts as will you and that is ok.

My mum’s diagnosis was not a complete surprise. I had watched her memory begin to fade.  There were small things, almost funny at first; occasionally she would forget what day it was, or get lost while driving in familiar neighbourhoods, or forget names or words; all were things I noticed, but didn’t label. I invented excuses and put it down to ‘old age’.

But the diagnosis helped. I stopped  getting  frustrated and angry by what I thought was simply irrational and scatty behaviour. I now knew what was happening.  I called her; not once or twice a day like before but seven or eight times to remind her what is happening that day, to check that she is eating, to see if there have been any important letters and generally chat.  While before these calls made me feel stressed and anxious, I  began to  find them reassuring; she may be ‘slipping’, but for the most part she’s still there.

And we had a lot of laughter, and a new contentedness.  We joked about her forgetfulness and blamed Ginny, the family ghost, for losing things. And we giggled about the fact that she had forgotten many of the things that used to annoy her.  Mum used to have a memory like an elephant, and could hold a grudge; she would never forget nor fully forgive anything that we or anybody else had done wrong. Well now, the grudges are gone; she doesn’t remember them or the events, which created them. Last week she said, ‘I don’t think I like so and so’ and I when asked why, she laughed and said ‘I can’t remember.’

You boys were less fazed by the situation. You had spent a lot of time with your nana and although you were tough and abrasive with each other you were always   warm and sensitive with her. And while you noticed the changes it didn’t cause you any alarm. Of course, it will be different if it is me – your mother.  I remember after one visit to Granny’s house you asked, “Why does granny write messages and stick them on the door?” and when I told you that she couldn’t remember things and these were to remind her you just took it at face value.  

So, boys this too was part of my journey.  Not only was I engaged in the ultimate role reversal, not only did I have to watch my Mum’s decay and cry for her and my loss of her, but, if I am honest, there was an additional concern. Beyond my pain for my mother, I was also worried for myself.  Is this my future?

My memory has always been my downfall. I have put it down to being slightly dyslexic. My friends say having a conversation with me is like playing the panel game Don’t Say a Word. “You know who I mean, …. the man with the red hair and the big nose …. he has the squeaky voice….’. On a good day, I would laugh at myself.  On a bad day, I get frustrated and angry. Now I am terrified. Is my memory getting worse? Am I on this path too?

“Don’t worry” said one my boys  “by the time you get old they will have found a cure.”  That should be reassuring, but its not; I fear his flippant statement is neither true nor confidently said, and that deep down, they do have fears.

 And on bad days when I was alone I would feel a deep sense of loss.  The essence of my mother was still there, and much of the time she was not only quite lucid but she retained her wicked sense of humour.  But my best friend, who my mum had always been – the personality that was my Mum – was  starting to fade.

So, my dear children  my quest is to share the journey I made with my mother and there is no pressure for you to follow suit.  But if  there is any money left in the coffers rather than one of these soulless old age homes, use the money to keep me at home with a live in carer and a good supply of marijuana.  And when it gets bad  just dispose of me however you wish. Preferably  quick and mercifully.

“Let’s be careful out there”