C is for Christmas

Every year, Christmas is always a special and happy time for my family. We are by no means the perfect clan (despite the still-married parents, one boy, one girl, suburban stereotype), and the festive period has always been a time where we have regrouped, both physically and mentally, and gone above and beyond to make each other happy. Like most families, patience, compromise and a lot of hard work in the kitchen allows us to thoroughly enjoy our company for at least one day a year.

We have the art of Christmas down to a tee. Or should I say tree? (Which, by the way, goes up in the first weekend of December without fail.)

Dee is the Christmas fairy. She cannot get enough. It's her heroin, her nicotine, her catnip. Every year the house is transformed into a Christmas grotto - garlands, Santa figures, snow globes, candles, fairy lights, poinsettia... It was a magical transformation whilst I was a child and now I'm in my mid twenties, it's still pretty special.

In some respects, things haven't changed for this time of year. The house looks the same, the food is always delicious and the family rituals are still going strong. We still have pillow cases filled with goodies to open on Christmas day, we still have smoked salmon and scrambled egg for breakfast, we still watch The Snowman and The Muppet Christmas Carol. A more recent and hilarious addition has been an outing to the Boxing Day races.

Nevertheless, there is a change. It was Brother who decorated the grotto. The pillowcases were filled with things Dee had found around the house. The Muppet Christmas Carol is punctuated by the 'What's happening now's and the 'I've never seen this before's.

There has been a shift in focus - it is no longer about us, it is all about Dee - both a heartwarming and saddening realisation. We are no longer the children. Dee is now the child. The child that needs soothing, spoiling, cuddling, reassuring, reminding, telling off for being greedy. It was a beautiful moment when she went to bed content and happy with the day. Despite the confusion and memory loss, the Christmas fairy lives on.

Q is for Questions

Would you like a cup of tea?
A piece of toast?
What would you like for dinner tonight?
You're out tonight? That's great! Enjoy yourself.
Do you need any money?
Are you working tomorrow?
Would you like a drink?
Can I get you anything? A cup of tea? Glass of wine?
What do you want to eat tonight?
Where are you going?
Do you need some money?
What are we watching?
Can I get you a drink or something to eat?
Where are you going tonight?
I know you said but I can't remember.
Oh wonderful! You enjoy yourself.
Would you like a cup of tea?
Are you going to work?
Oh that's right! Who are you meeting?
Can I give you some money?
What is this programme?
What would you like for dinner tonight?
Would you like a drink?
Where are you going?
Have fun my darling girl.

F is for Fishing

Father used to take me fishing when I was younger. I never really appreciated it. Standing on the edge of a lake with nothing to do but pulling a line in and then throwing it back out again did not make for a good time for a young girl.

Now, the tables have turned and I find myself the fishing instigator on most occasions. Fresh air, a simple objective and, best of all, peace and quiet.

Dee's dementia has progressed into the noisy phase. The Irish blood in her always made her a chatty soul. She made friends easily, left an impression wherever she went and had a wonderful way of telling stories. Such a fascinating and interesting individual, and she still is, but in a different way.

Now, her capacity to talk is dumbfounding. Non-stop, incessant chatter with no pauses for thought or breath and no logical progression from one part to the next. I'm still deciding if this is a sign of happiness and comfort in the company she keeps or if it's merely a way of Dee keeping her train of thought going without interruptions that she can't understand.

She can remember the smallest details of her early life in the london. The colour of the door to her best friend's flat in Kensington. The necklace she wore on the first date she went on with her tall policeman boyfriend. The time she nearly ended up in Brighton with another friend when they got lost driving to college. And yet, what she had for lunch a few hours ago and the current topic of conversation is an every day struggle.

The mind works in mysterious ways. 

So the silence that comes from standing on the edge of a lake, doing nothing else but fish comes as the perfect past time. An opportunity to contemplate what to do next, and what will come next. A chance to deafen the outside and take stock. Maybe even catch some dinner.

G is for Gaps

There's been a big gap in this project since I first started it. I'd like to say it was a metaphorical device to represent the gaps in Dee's memory, but it's more an accidental metaphor in which life has got in the way and I'm not able to fulfill my quest to make this whole experience wonderful and witty and marvellous.

The fact of the matter is, most of the time, it feels pretty shit. I have felt pretty shit for the last few days and it's come after a bout of feeling 'normal' and ok for a while. 

I have come to a crossroads in my life where I don't know if this change in Dee should affect what I decide to do next (and this is a crucial decision at twenty-four years old). Do I stick around and create a gap in my own life where I've not taken the routes I want to? (which would mean spending long bouts of time away from her and Father) Or do I create a gap in Dee's life where I am primarily not accessible at a time when I should really be making the most of our relationship before she passes the 'window of opportunity'? (as Aunty likes to put it.) Am I supposed to stick around and be supportive or am I allowed to be selfish and take off and live my life? 

A complicated question never has a simple answer- that was one thing I learnt from Maths A Level, and most of the time I would go down the wrong tangent and end up with the wrong answer so for now, I must I must return to my original subject.

I've concluded that Dee's gaps in her memory are what makes it difficult for her to process every day things. This may sound obvious to most but to myself this is a bit of a revelation. I always believed that her deteriorating thought processes and loss of memory were different symptoms of the disease and not directly linked, but now my feelings have changed. In fact, in every conversation had with Father, we have always been quick to subconsciously distinguish between the two.  But what I've realised is that every thought process can be taught - even if you don't understand how something works, you can still understand how to work it. And it's this that Dee struggles with. 

Turning on the television has become an (ironically) unforgettable experience for me. Phones, ipods, any piece of electrical equipment nearby that may resemble a remote in any abstract way has fallen victim to Dee's attempts at turning on the TV. I have often come down in the morning before work and found the telly still on because she hasn't been able to turn it off. I know the hippy in her would be screaming out for her to do it, but she's either forgotten how to turn it off or forgotten the hippyish consequences she used to instil in myself and Brother when we were growing up. 

Oh well. Turning off televisions aren't such a big deal. I'm hoping I have a lot of time before things become more serious, and I'm definitely hoping there's a gap in which I can escape and return unnoticed.

D is for Dishwasher

'That bloody dishwasher is broken again.'

'What's wrong with it?'

'We need to get an engineer because it hasn't worked properly for weeks.'

'Dee, just reset it.'

'I have reset it.'

Enter - Dad the engineer. Five seconds later-

'It's working Dee.'

'How did you do that?'

'I reset it, like I told you to do.'

'You didn't tell me to do that.' A moment's reflection.

'Would you like a cup of tea?'

'...Ok.'

Repeat.

B is for The Beginning.. And Bill Murray

I have always said that there is lots of humour in a tragic situation.

I moved home from university just over a year ago. I was and am lucky - I retreated to a house in a lovely area of South West London - a home full of love, a kitchen full of great wine, a fridge full of great food and CD racks full of great music. We have always been a close family, and I've been aware of this since I was a little girl. We always talk, and listen, and make suggestions, as a family, and it's instilled this feeling that I can achieve great things, purely because I have such unflinching support behind me.

Now I am faced with a challenge that I'm entering blind. This safety net has a hole.

My wonderful Mum - the breadwinner, storyteller, carer, advisor - has been a victim of fate. Over the last couple of years, it has become increasingly undeniable - she is descending into the blur of Dementia. Although it's still early days, the change is obvious to me, and I know I will have to watch her slowly slip away from us all.

That great English Actor

But with this bleak situation comes some very funny and poignant moments. Tonight, Brother came home with the new Wes Anderson film, Moonrise Kingdom, to watch after dinner. I love Wes Anderson films, and his latest is no exception (if you haven't already, watch it, it is surprisingly moving). Dee struggles to follow even the simplest of plots nowadays, but there was one thing she was sure about in this film - Bill Murray is English. Undeniably English. No amount of arguing with myself or Father could shift her view - she knew he was English and that was that. Everytime he popped up on screen, she would say 'what a marvellous English actor'. The first couple of times could have been her wicked sense of humour messing with us, but by the twentieth lap of the same conversation, it became clear that this was another 'senior moment' as Father likes to call them. 

It will be things like these that I will document on here, along with anything else that I think will help open up the discussion of mental health to those who may be going through similar circumstances. I was brought up believing that discussion and communication is the best way forward in life, an important lesson from Dee, and this is what I will attempt to do - discuss and communicate my experiences to help myself, and hopefully others along the way.