L is for the Little Things

There are a lot of little things that have come from having Dee in my life. I love broccoli. I genuinely think broccoli is probably the tastiest and funniest looking vegetable and I'm pretty sure this obsession was born of being the daughter of Dee. I'm also partial to a good bouquet of flowers, something that I've definitely inherited from Dee. (I'm sat in her front room and as I type this, I can see four vases with flowers in them... in ONE room.)

Even Dee herself is becoming one of these little things. She always told me she would shrink as she got older - and she wasn't wrong.

But there's other little things that have come from this illness that are littered about the house. Dee has got into the habit of buying trinkets and bric-a-brac every time she leaves the house. My parents have gone from living in a fairly minimalistic, nicely decorated home to a Museum of Charity Shop Junk. Ballet dancers, china boxes with cherubs on top, candleabra, elephants, ships, decanters, ship decanters, cats, teapots, cat teapots... I need a lie down.

Then there's the other little thing - the small talk. Dee is now well rehearsed in this. The Queen of Deflection. The Mistress of Chatter. Any time she doesn't know the answer (which is becoming increasingly regular) she passes the buck to Father, or change the topic via the medium of compliments.

But I've realised the biggest little thing of all this is to remember the little picture. This is key to making this whole scenario a bit more bearable. When looking at the bigger picture, we're faced with decades of care that will cost an obscene amount of money, not to mention the pain and grief that comes with deciding when she's actually finally left us for good (death is normally the go-to stage in all this, but sadly Dee will mentally give way before any physical change, so when's the final moment of passing with that?) and then there's the guilt that comes with deciding enough is enough and we should move on with our lives.

So the little picture is incredibly important. One doctor's appointment, meal, day, week at a time. This makes the mountain more manageable.

Oh. And one more little thing... I may have signed up for the Bath Half Marathon... no biggie. Donations can be made on my Virgin Money Giving page. Big donations.

T is for Tall Tales

'You're getting so tall! I can't believe it!'

'How tall are you now?'

'You must be 5"10'

'You're getting taller! You're nearly as tall as your father!'

'I'm shrinking. I'm 5"2 now. My mother was even shorter.'

'You're so tall! Everytime I see you you're taller.'

'I'm shrinking now. I'm really small. I'm nearly as small as my mother.'

'You've grown since I last saw you.'

'You're taller than your father now! I'm getting smaller.'








'How tall are you?'

A is for Answers

This is probably the most difficult post I've had to write so far on this journey into the foggy world of Dementia and Alzheimers.

 After months of discussing, predicting, arguing, counselling, convincing, testing and asking questions, the day had come to get some answers. At 3.15pm, we will be sat in the Doctor's office, given a diagnosis and talk about the different treatments we can try moving on from that appointment.

Of course, this wasn't quite the way it turned out.

We arrived at the hospital with plenty of time and it turns out not much information. We hadn't received the final letter confirming the appointment and only had some referral letters from our first session with the registrar. When the Neurophysiology department had no idea who we were, and the Medical Day Unit's reception was unmanned and apparently 'closed', the panic began to set in. Cue the clichéd run around different floors and departments, increasing anxiety that we'll miss the appointment and raised tension between the family which manifested itself into shouts like 'read the bloody sign! It says outpatients this way!'

We eventually made it to the right department, ten minutes late, flustered and agitated. We spent at least 15 minutes waiting for lifts because the stairs were only accessible to staff - no idea why. (Is this some new hospital rule?! I really don't understand.) We then had to wait a further 40 minutes because the said delay had meant the other patients, who had made it on time without getting lost and harassing unsuspecting hospital porters, were ahead of us in the queue.

Finally, Dee's name was called, we were summoned into a little room with a big number thirteen on the door (this was not the day to be superstitious) and we were moments away from understanding her fate.

It turns out, two years on from the start of this battle, there still isn't much we could understand. After months of family discussion, convincing Dee to go to the doctors, the blood tests, memory tests, consultations and MRI scans, we were told she 'may have alzheimers' but further testing was needed to get a definite diagnosis. We were also told that she can be prescribed medication, but this medication was by no means a miracle cure. We were told we could make changes to her diet, but we'd be better off seeing what effects the medication may have first.

We were told many things, but none of them were definite answers. Every professional Dee has seen has been amazingly helpful, understanding and pleasant, and this lack of information is certainly not down to incompetence. It turns out, there just isn't much you can be sure about with matters of the brain.

This entry was originally called 'D is for Diagnosis', but we're still waiting for an official one. Meanwhile, a realisation has descended on the family that Dee will not be getting better, that there is no miracle cure, and that this will get a lot harder. I am not in the habit of ending these in a negative fashion, but Dee's future does not look good, and I would be cheating you of an accurate depiction of how this Dementia thing goes if I did sign this off with a positive outlook on life. There is an inescapable sadness that has fallen on the house tonight.

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.