Hello Darling.

Hello darling. Who are you?

Would you like some tea? Coffee?

Wine?

I’m not sure who’s here. How many are coming?

What are we doing today? I can’t find my bag.

I love you. You’re my darling, do you know that?

Have you eaten?

Would you like some toast? I haven’t had any dinner.

I’m lonely. I used to have a man but now he’s gone. I don’t like being on my own.

Who is he? Is he my husband?

I’m married?! Oh how lovely, that’s wonderful!

I never had any children.

You’re my sister aren’t you?

I haven’t seen anyone in a long time. I don’t like being alone.

I’m becoming a child.

Will you look after me?

Are you staying here? I can’t find my bag.

Where do you live? Is it far?

I’m frightened.

I’m lonely. I don’t like being on my own.

Where are my Mum and Dad?

Where am I? Is this my house? Where’s my bedroom?

I haven’t got any pyjamas!

I want to go home.

When will I see you again? 

Take care darling.

N is for Normal

There’s a lot of jarring reminders in her medical appointments that make you aware that this journey will take a long time and become very hard to process. Questions like ‘Can she wash herself?’, ‘Does she need help dressing herself?’ and ‘Can she go to the toilet unaided?’ are reminders that however bad we think it’s getting, it’ll still get a lot worse.

Something I hadn’t really anticipated is the way in which she challenges ideas of what’s socially acceptable. She walks out the front door in her pyjamas, pinches things from the front gardens of neighbours (if any of you are reading this, I’m so sorry!), and will stop and talk to anyone who walks past the house, especially if they have kids.

To strangers, she comes across as odd and I find myself cringing sometimes at her behaviour, like a typical, embarrassed Brit. But those who know about her affliction are amazing with her, herding her back to her front door, sitting and talking to her when she decides to sit at their table at the pub, returning the odd possession that has appeared in their recycling box outside their house. To you understanding folks in St Margarets, I’m eternally grateful. Thank you. My faith in human nature has been restored.

But there is one aspect of her behaviour we all find more challenging than the rest - her complete love affair with alcohol. It’s perhaps the most jarring of things, more uncomfortable to witness than suggesting I’m a threat to her ‘new man’ (her husband of thirty years and my father), or that my brother is my partner, or that she’s had yet another man come to the front door proposing to her. It’s probably the absurdity of those confused ideas that make them far easier to ignore.

She obsesses over it, constantly on the hunt for wine in the fridge, pinching other people’s glasses when she’s finished her own, snatching bottles from tables and hiding them around the house. We have aptly nicknamed her ‘Vintage Trouble’ and trouble she can be. She has entered into the stubborn phase of this illness, refusing to go places, not giving up on an idea until she gets what she wants or loses her train of thought, not letting go of the idea of a glass of wine because she ‘hasn’t had a drink in months!’

(Some may see this post as being disloyal to Dee, but I feel that in the interest of keeping this blog an open and useful tool for anyone going through a similar situation, it's an important development to document. And I think Dee would understand.)

I'd like to point out that although she behaves like one, I still wholeheartedly believe Dee is not an alcoholic. I feel like one must be aware of what they’re doing and the Dee that we all knew and loved would never give in to this behaviour if she still had the mental capacity to. Unfortunately, as with everything else in this wonderful woman, the ability to recognise she’s been drinking or remember that she’s had a bottle of wine already have both faded away. Instead, we’re faced with an unending battle to try and curb her drinking in an attempt to keep her more mentally sound for just a little bit longer.

But we’re also taking away the one thing that makes her feel normal. Or at least as close to normal as possible. Everything else around her is becoming more frightening and strange and this must be one feeling that she recognises. She’s in a perpetual state of anxiousness and can’t stop wandering around, moving things, tidying up, asking if everyone’s alright, asking what the plan is for the day. I suppose, in a strange way, her deterioration is at a point where even her own warped thinking can’t hide it from her.

The problem has become all encompassing, and she can no longer live in denial. Dee said to me yesterday, ‘I’m becoming a child’ and it was the first moment in a long while where the glint of the normal Dee was in her eye. Just a very brief moment of normal Dee. Haven't seen that in a long time.

C is for Coincidence?

Dee always knew how to put on a party. Some of my fondest childhood memories are of the parties she hosted at Selwyn House with Father. There was always great music, a large number of people and copious amounts of wine and cheese (that's probably where my obsession came from).

Today, I was thinking about Dee's 60th birthday celebrations. Dee had picked some lovely little cottages in Oysterhaven, a beautiful spot in Ireland near Kinsale, Cork and a regular haunt for us when I was growing up. Perfect cottages with a perfect view over a perfect bay. Dee organised for all her friends and family to fly out and spend the week celebrating with her.

This nostalgic moment came after I'd come across some old emails from friends and family, all telling great stories about their adventures with Dee. I'd put together a book of memories to give to her for her 60th, collecting tales and digging out some incredible old photos of them all (with a lot of help from her sister). I had no idea how important this book would become in such a short space of time, only five years after it was put together.

I had no idea where this book was and hadn't thought about it really 'till today. Then, whilst trying to usher Dee away from the kitchen so Father could get on with dinner, I spotted it by the CD rack, as clear as day, as if it had been there all this time. (It hadn't. Anyone who has to deal with a Dementia sufferer will know how impossible it is to keep things in the same place. The amount of bizarre things I've found in the fridge and cupboards can make up an entire post, so let's not go over it now eh?)

The stories are just brilliant. Some are of those legendary parties, one mention in particular of a black and white party in 1989 where two of our family friends met. (They married just four months later and have been together since.) Another was of an adventure in 1977 that ended with a lock-in in a Greek restaurant where the police were called! Her unbelievable gardening skills, last minute hair dying that made her late to her sister's wedding, gatecrashing of a private view at an art exhibition, learning to drive and managing to rip the gear stick out of the car... the list goes on.

There are also so many mentions of the happenstance ways in which she met all these important people in her life. It's funny, this book has become somewhat of a time capsule. Possibly the closest thing to a memory Dee has. The capacity to realise the stories are about her will fade, but I'm thankful for finding that book on the very same day I thought about. Those stories will live on. It's funny how things work out.

L is for Limbo

I love Louis Theroux. His programmes cover fascinating corners of society not often spoken or thought about, including a moving episode where he visited people and families living with Dementia. His latest was just as compelling - Not Guilty by Reason of Insanity. A phrase that can certainly be applied to our own personal case of madness.

Dee's behaviour is becoming more choatic with each day, her behaviour a result of a much deeper confusion. She can behave in socially unacceptable ways, covering her strange actions by following them with a mischievous laugh. Dee has returned a couple of times after a trip to the local supermarket incredibly distressed after the shop workers have accused her of stealing, and those unaware of her condition think she should know better. (The truth is, she may well have meant to walk out of Tesco with that freebie, but the mental faculties to consider that an immoral act of stealing will have been absent at that moment.)

Dee's Alzheimer's has left us in a strange limbo in more ways than one. We're grieving for someone who is still very much a part of our lives physically, but mentally more and more distant from those who surround her with every passing day.  She remembers her cat when she was a child, but cannot remember eating dinner twenty minutes previously. She remembers her deep love for Father but not their 30 year history together. She remembers I'm her daughter but I'm not her daughter, who she brought up in Richmond all those years ago. Does this mean she's forgotten me? The jury's still out on that one.

This limbo creates a moral mountain to conquer. Dee is becoming more and more difficult to care for. She talks incessantly, repeating questions over and over again yet incapable of processing the responses she gets. She becomes discombobulated easily, thinking she's in a house she lived in 40 years ago, hallucinating that there are other people in the house, forgetting she's got a familiar bedroom upstairs that she's been sleeping in for years. Her concept of time has disappeared altogether, no longer able to read a clock properly, nor accurately judge how long she's been somewhere or with someone for. She spends her time pottering around, emptying the dishwasher of dirty plates, leaving the freezer door open, hiding things around the house, suspicious of us that we're trying to take her money from her.

All of this and much, much more, make it harder to remember the incredible woman she once was, and act as reminders of what's yet to come on this journey. And yet, we're faced with the hard-to-swallow dilemma that she's still nowhere near as bad as she will be, which makes you think: do you do everything you can (as we are) to slow down the progression of this disease, or do you admit defeat and let it take its course? At which point do you decide enough is enough, that the Dee we all know and love is gone, and it's time to let her go? It's a tough question. One that probably has a different answer for every person you ask.

For now, all we know is, we're not ready for that. We are lucky that Dee was an addictively positive person - something that's held her in good stead for this. She's happy. Oblivious, but happy. And as long as happiness is a concept she can still understand, there's no plans to let her go just yet.

E is for Episode One

In the months since my last post, Dee has entered a deeper phase of her illness. 

She is going to bed earlier, a result of finding it more exhausting to try and keep up with every day conversation. She forgets who she's talking to, who she lives with, and has started a routine of calling me daily at round about the same time to find out when she will next see me, even if I'm seeing her later that day. (I found out recently this is called 'sundowning', a period of uncertainty or confusion that many Alzheimers and Dementia sufferers experience at dawn or dusk.) I quite like these conversations though. She's always so charming and sweet. It seems to be an attempt by Dee to try and take control in some way.

More recently, she's been having these episodes of complete and total confusion and paranoia. 

This episode I'm about to expand on was very difficult for all involved. It was the first of its kind for us and for Dee, and although books and various medical studies can help you feel prepared for these moments in a loved one's journey through Alzheimers, when they become a reality, it's quite difficult to handle.

It was a Saturday night. Dee had gone to the Cotswolds with Father, her sister and brother-in-law for a weekend in the country. She has been to the cottage before many times with various family members. The place is homely, comforting, familiar, set on a lake in the middle of beautiful countryside. Up until this point, there had been no real issues with taking Dee away from the family home for periods of time.

She'd had a pleasant day wandering around the local town before heading to the pub to watch a game of rugby with Father. They returned to the house and Dee went for a lie down. 

It was at this point, she began to find things a bit strange. She had a photo frame and clock by her bed that comes with her whenever she's away to keep her settled and allow her to readjust, but this seemed to be what made the confusion start. 

It began with questions. She was asking where all her stuff was, where she was, who Father was. When she was told the answers to each question, she didn't believe them. She thought she was in her own home, something in hindsight I think came from Dee's sense of familiarity with a place she'd been before, coupled with the understanding from others that she was getting confused.

The situation then escalated rapidly. She began to question everything that was being said to her, demanding to speak to her best friend and me for help and confirmation of her thoughts. I received a phonecall from Father, who explained that Dee was confused and wanted to speak to a familiar voice. 

Dee was really upset. Her words were muddled, she was scared, confused, and unable to rationalise anything that was being said to her. She believed everyone was trying to kidnap her and take her into a home. Father decided the best thing to do would be to get her in the car and take her home, but even this proved a struggle. 

She thought they were getting her in the car to take her away, so much so she shouted 'if you don't see me again call the police!' down the phone. At the time this was quite a harrowing thing to hear your Mum shout, but now thinking back on it that line makes me laugh. Clearly she'd been watching too many police dramas on ITV3. She always had the ability to be dramatic, something I hate to admit I've inherited!

Anyway, being in the car immediately placated her. She quickly calmed down, returning to a more manageable state. By the time she'd got home, on first impressions she seemed 'normal' again. But she was talking in a manic and distorted manner, pacing the room and doing the same familiar things in a particular order.

In her mind, she'd already forgotten the whole thing. (This was probably the first time I've been grateful for the bloody disease.) If only the same could be said for the rest of us.

This was the start of her deeper descent and although the more regular episodes of confusion are less extreme, they are becoming exactly that - more regular. But with each episode, we are getting better at coping and calming Dee down. But one day, these periods of complete confusion will become the norm, and her moments of clarity and understanding will become the episodes.