T is for Therapy

I know I know. I promised you some happy thoughts and positive things in my last post, but things haven't really panned out that way. Anyway, who wants to read about positive things?! We're all suckers for the bad news. Besides, life gets in the way. And death too.

Shortly after that post last year, I found myself in a very unusual situation. Someone I had been seeing over Christmas passed away suddenly after taking a legal high, and the whole thing was kind of like an episode of Black Mirror - the Tinder special. (They should do one on legal highs. Don't take legal highs kids.)

We had been getting pretty close, and things were going well - at the end of January, I'd returned from a trip to climb Kilimanjaro (more on this later) and we'd spoken nearly every day. In the run up to us seeing each other again, he explained he wasn't doing great mentally, but was looking forward to seeing me. On the day we had arranged to meet, he messaged me at lunchtime to say he was getting in the shower and would see me after I finished work. That was the last I heard from him. He passed away two weeks later.

The whole thing was a cluster fuck of emotions. What was I supposed to feel? Am I allowed to be upset? Can I go to his funeral? Was there something I could have done to prevent this whole thing from happening? Am even allowed to think that!? I'm just a girl from Tinder. Can I talk to his friends? I'd not even known him a couple of months.

I've since come to terms with the fact that actually, there is no right way to feel about that scenario, or death, or sadness, or relationships, or life in general. Sometimes shit things happen. But it was this particular shit thing that made me realise enough was enough, and I needed help.

After his funeral, I started therapy. It was time to talk about me. And Dee. And try and get my head around the fact that you're grieving for a person whose presence is gone, but they're still present. I'd been dealing with a lack of closure in Dee's Alzheimer's for years, and it was the lack of closure from my personal episode of Black Mirror that pushed me to talk.

Every time you see your sick loved one, it's like having to say goodbye to a different part of them. First it's their homemade beef pie which they can't quite cook anymore, or their dress sense, then their logical conversation, then their memories of you, their memories of the house they live in, their smile... Oh how I miss that grin of hers.

This disease is savage. It's brutal, it's unrelenting and it's very tough to get your head around. I've cried a lot in therapy, I've cried in front of friends, cried on my own, cried at work, cried on train journeys... and I'm not the only one out there dealing with this who has probably done the same.

I've learnt a lot about myself over the last 12 months, and about dealing with my own sadness, other people's mental health, as well as Dee's Dementia... Mental health is so vitally important to us all. No matter what it is we're suffering with - depression, bipolar, addiction, Alzheimer's... we need to look after our minds. After all, what's the point of powering through a world where Trump's been elected President if you can't steal a little happiness here and there every now and again?

I've been lucky to have been surrounded by amazing, supportive people, living in a wonderful city, enjoying my life when I've been feeling great and lamenting my dying mother when I've not been able to do anything else. It's ok to not be ok all the time, it's ok to feel shit about it, it's ok to feel mad, and it's definitely ok to ask for help and to make sure you are supported too, no matter what your situation.

I'm still going to therapy. It turns out, I have lots to talk about. If there's one good thing to come from death, it's how it forces you to evaluate what you want from life, and how to make sure you're happy achieving it. I think Dee would be proud - I miss her every day... but that's ok too.

S is for the Story You Don't Want to Tell

The 25th January will mark a year since Dee went into a care home. And what a year it's been.

It's hard for me to sum up everything I want to tell you in one post, so I'll be splitting this sort-of year's review into two parts. The first one is 100% the scariest post I've ever written, and will ever write, probably because it's so personal to my experiences and feelings. So please, bear with it. It's not an easy read even for me. But the second part will be much more positive. I promise. So you can reward yourself with that when I've written it, which will be sometime over the next few days.

Anyway... Here's part one of my review of 2016.

We'd had a very difficult Christmas and New Year at the end of 2015. Everyone in the family knew that Dee, our Christmas Fairy, was deteriorating fast, and there was a lot of pressure to make this the best Christmas ever, as it was likely to be her last. By this point, Dee was in quite a state. Her confusion had made her intensely anxious and increasingly incapable of handling every day life, which manifested itself in a number of ways - manic movements about the house, belligerent repeating of questions, an inability to wash properly... 

In early January, I woke up in the middle of the night at my parents' house to the sound of running water, and found that Dee had managed to flood the three floors of the house by leaving a tap on upstairs. This turned out to be the catalyst to change for us. We were unable to cope with her care any longer. and desperately needed help. After discussions with our social worker and various meetings and chats with healthcare officials, myself and Father made the heart breaking trip to a local care home, unpacked her things, and tried to ease her in to her new surroundings. 

Since then, life for all of us has been a heady mix of extreme emotions, challenges and change. Shortly after Dee's transition to care, I made my own transition to Bristol to start a new chapter in my life that didn't involve commuting, extortionate rent and walking really fast. For the most part, I've found this to be such a positive move for me. I've met some amazing people, and fallen head over heels for this town. But I'd be lying if I said the year has been full of laughter and joy.

The story you tell through Facebook, or Instagram, or whatever, is probably heavily filtered (in more ways than one) to show the best parts of your day to day life - the holidays, the amazing dinner you've cooked, that day at work when you all dressed as Aussies and were drinking Fosters at 10am... (yes that happened).

So here's the unfiltered version of how my 2016 really went down. 

First. I got drunk. REALLY drunk. I took some time off after leaving London and slept, ate and then drank. Lots and often. And it was great fun! I was exploring a new city and making new friends and there was a new found freedom that came from not having to look after Dee at home. But of course, that kinda lifestyle isn't one you can maintain for long, particularly when you're crying daily from what one can only assume is a blend of heart-aching guilt and grief, whilst getting your head around the fact the person you're grieving for isn't even dead yet. 

Then I got a job. Routine was restored to my life, and I began to settle into the West Country pretty quickly. But it was three or four months into the move that things became tough. 

During the final year of Dee being at home, I had (and still have) the most amazing support network of friends and family helping me and Father and Brother get through it all. And it felt justified and necessary to be supported because it was all happening now, right now. But then, once that chapter was over, and a little time had passed, I felt like my trauma was 'old news', undeserving of attention, despite it being part of my psyche every day. I considered the topic unworthy of anyone's time and stopped talking about it. When you pair this with the fact I was surrounded by new people who had no idea about my situation, I'd mentally isolated myself so much that I felt really, totally alone.

Then I suppose I fell into a stint of depression. I became scared of sleep, even though I needed it so bad, tortured by dreams that revolved around the break up of my family and being the baddie who sent my mother off kicking and screaming with everyone else calling me a bitch. I would burst into tears without provocation, I couldn't concentrate at work, I would often have to leave social situations to be alone... And I was angry and scared. I couldn't understand how such a terrible disease could exist, nor why I was incapable of getting myself out of the mental mess I'd slipped into. I'd felt like I had no idea who I was anymore, with no idea how to get that back.

I stayed in this weird limbo for what felt like quite a long time, plodding along, relieved to have got through another day. Then, slowly, I started to cry less, and talk more, I began exercising, and doing yoga, and eating better, all driven by the ridiculous notion that I was climbing a sodding mountain at the end of the year. It was these little changes that made me feel more in control of my feelings and my life.

Summer and Autumn came and went in a blur and before I knew it, Christmas was upon us once more. But this time, it was different. The Christmas Fairy was absent this year, both physically and mentally. For the first time ever in my life, on Christmas Day, our family was incomplete.

I've visited Dee a few times this year and every time, for some reason, I forget how hard it is to say goodbye. Maybe that's a sub-conscious effort at self-preservation. But saying goodbye on Christmas morning... Oh my. Nothing can really prepare you for the wave of intense pain when you're walking away. By this point, Dee's communication had deteriorated into slurred mumbles, incapable of sentences, unable to understand when it was explained to her that these presents were wrapped, and she had to open them to get to the actual gift.

Then, before I knew it, Christmas Day was over in a haze of tears, fizz and food, and I was heading off with what I would soon learn were a group of wonderful, full-of-life individuals with their own compelling stories to tell, to climb Africa's highest mountain for Alzheimer's Society.

I still miss her every day. And I still cry. And I still long for just one more five minute conversation with my favourite woman of all time. But instead of these things being all consuming, they've become part of my mental routine, and I now accept them as a sign of how much she taught me in life. Each wave is different and I'm still learning how to cope... I'll probably never stop learning. 

L is for Loss

"At first, when we truly love someone, our greatest fear is that the loved one will stop loving us. What we should fear and dread, of course, is that we won't stop loving them, even after they're dead and gone.' Shantaram, P629.

Sunday was Dee's 66th birthday.

It's hard to put into words the mix of emotions that came my way in the run up to this date, but I'm going to try. (I mean, this is a blog, after all.) But first, some context is probably needed about where we're at with Dee and her disease.

A lot has changed in our lives since I last wrote on this blog, and I find it quite surreal reading the opening of my last post where I boldly charge straight in with the 'I find it SO easy to talk about all this' chat. Part of me probably still does, but there is an even bigger part of me that (ironically) is desperate to forget.

So, as we all know, 2016 has been the year of loss. Prince and Bowie were two of three idols I've lost this year, and I bet you can guess who the third is.

After what was the most stressful, heartbreaking, traumatic Christmas and New Year of my life, it became very clear that Dee was unable to stay at home any longer. We had reached a point where she was literally destroying the house (one early morning I was woken by the sound of water gushing through three floors of the house), Father had succumbed to the dark cloud that lingers over you when you're dealing with a tragic circumstance like this, and the situation was beyond chaos. We needed help, and fast.

By this point, we were already in contact with social services and had been assigned an amazing social worker called Lucy who was a flicker of light in the darkest period in our family lives. (Wherever you are Lucy, thank you thank you thank you.) She quickly arranged for two weeks respite care for Dee in a care home close by.

I think myself, Father and Brother all knew this was probably the end of her living at home. She moved into a room in a nice home in Hampton, which had two nurses supervising her ward. It was at this point the realisation of just how ill she was became much more real. Despite 25 years of Alzheimer's and Dementia care experience, the home could not cope with her manic and erratic behaviour, (In a strange way, I felt proud of Dee for that - she still had that Irish fight left in her!) but it was agreed that she could not return home either, and a more permanent solution was found at another home, with Dee receiving 18 hours a day of one-to-one care. She has been there ever since.

When you're going on this journey with a loved one, you don't really have the chance to stop and think about what happens after this point. This is the stage you're dreading, avoiding, and in all honesty, sometimes hoping for. It is the all-consuming end of the journey, the final hurdle in that long old race called life. And in some ways, it is the end of the line. She no longer recognises me and many others, she forgets almost immediately that she's just had a lovely birthday lunch surrounded by her nearest and dearest, and it very much feels like it's the shell of who she is, stubbornly refusing to put her shoes on to go outside.

But it's not the end of the grief, anger, sadness, guilt, heartbreak and devastation. Nor is it the end of the love so many people will always have for her.

It's been five months since we dropped Dee off at her first home. Shortly after, I moved away from London and have started to rebuild my life in the wonderful city of Bristol. For me, I feel now more than ever that I have lost my brilliant, charismatic Mum, despite her still wandering around a home in West London causing chaos. I'm torn between the guilt of no longer being close enough to see her or the family as often as I used to, and the belief that she would definitely have wanted me to get on with my life and be happy and successful.

To anyone who is on this road we've been on, I have one piece of advice for you (which came from Father, who in turn got it from one of Dee's many many uncles). Be kind to yourself. There is no right or wrong way to handle it. Be kind to yourself, it's tough enough as it is.

There's so much more I'd like to talk about, but I haven't quite found the words yet... Something for the next post perhaps. Meanwhile, I'm still climbing Kilimanjaro to raise money for Alzheimer's Society, so please please head over to my page and donate! I have a bloody big target to meet (£5k) and a bloody huge mountain to climb, so please give what you can. 

C is for Choice

'If I ever go that way, I'm going to kill myself. I'd rather die than end up like my parents.'

I've always found it relatively easy to talk about Dee's battle with Alzheimer's. Some have been more difficult to cover than others. But now, as we're dealing with much more challenging stages of this disease (because everything up till this point has been a walk in the bloody park), my focus has been shifting from the entertaining and heart-felt to the hard-hitting and serious.

So what better hard-hitting topic to discuss than assisted suicide? Oh yes. Is it harder to watch someone mentally slip away or physically disintegrate?

This has been something I've considered for quite some time, and you have the BBC to thank for this post. It was their brilliant documentary 'How to Die: Simon's Choice' that has led me to writing about it. Simon Binner was 57 years old when he was diagnosed with Motor Neurone Disease. The documentary follows his and his family's journey from diagnosis in January to his final moments before his suicide in Switzerland in October.

There were so many parallels between Simon's and Dee's attitude to life, but their illnesses are worlds apart from each other. Simon faced a completely physical deterioration, slowly losing the ability to walk, stand, and even communicate in any way. Dee, on the other hand, has nothing wrong with her physically (apart from the odd ridiculous outfit) and is instead becoming more and more mentally incapable of processing even the simplest of sentences.

And yet, they both end up needing a similar level of care. Someone to wash them, dress them, cook for them, help them communicate and navigate their way through every day life. The difference between the two is Simon is fundamentally the same person throughout his suffering, able to make decisions and be sound of mind enough to know what he wants until the very end, when he dies surrounded by his wife and close friends.

Unfortunately, for Alzheimer's and Dementia sufferers, the ability to choose is lost pretty early on. And then you're left with an existential dilemma. The Dee we all knew and loved before Alzheimer's consumed her would have certainly wanted to die before getting to the stage we are at now. In fact, she made a point of telling us on numerous occasions, normally after visiting her own parents in their care homes. But the woman whose hand you're holding to help her get to sleep at night really doesn't want to die. And who are we to argue that the Dee of today is less important than the Dee she used to be? At what point do you say she's no longer Dee, and is all Alzheimer's and fog?

I'm under no illusions that if Dee was still sound of mind, she would most definitely want to get on that plane to Switzerland. I'm finding it much easier to understand where she's coming from, having developed the same attitude myself.

Simon is able to say goodbye properly, enjoy the final few parties, gatherings and reunions and say all the things he wanted to say. This makes it even more important to me that the terminally ill individual in question is able to choose how and when they go. One of the hardest parts of watching a loved one with Dementia slowly slip away from you is the inability to say goodbye, have those precious final moments where you can acknowledge what's happening, help each other come to terms with the loss that is happening, and create some fond memories to keep hold of once they're gone.

The reality is, we lost Dee a while ago now and are unfortunately way beyond assisted suicide being an option for us. Instead, we're left with a shell of the woman she was, a tormented soul who paces around in a constant state of anxiety, who cannot grasp how to make a cup of tea, who can't wash herself, who hallucinates on a daily basis and hates being in her own company. Who, in their right mind, would want to live like that?

I'm climbing Mount Kilimanjaro at the end of this year to raise money for the Alzheimer's Society. Head on over to my donations page and help me reach my £5k target! Ah go on.

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.

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. 

W is for World Mental Health Day

This Friday is World Mental Health Day.

Did you know that? I didn't. I never remember these anniversary type days. National French Fries Day, International Polar Bear Day, Pet Obesity Awareness Day, National Hug a Ukrainian Day (I do actually remember this one because one of my close friends is part Ukrainian... you know who you are).

So, in the interest of aiding this very worthy cause, I feel I should take this opportunity to go through my journey with Dee's Dementia thus far. Nobody likes talking about this shit, but sometimes you just have to. For the greater good. Like they say in Hot Fuzz. 'Pack it in Frank you silly bastard!' They say that too... Perhaps not as relevant for this post.

Anyway. Deep breath everyone. Better get yourself that glass of red.

When this all began a couple of years ago, it was the minor things that made me question what was going on in Dee's head. She'd retired from a high-pressured, fast paced job as a headteacher and lecturer, had been travelling with Father, and was volunteering at a local stately home taking people on tours of the home and grounds.

She had started to sleep for longer periods of time, was dressing inappropriately for the weather (I have striking memories of her wearing knitted dresses to social engagements at the height of summer and complaining she was too hot), and her ability to debate and make interesting and thought-provoking contributions to conversations became a rarity. She was still able to follow a conversation to a certain extent, but would then use filler to hide the fact she didn't know the answer or what was being talked about. 'Oh Lucy will be able to tell you more about that.' 'You have such a lovely face.' To visitors, these were not issues to be concerned with. To me, I knew something was changing.

At the time, I blamed this on her recent retirement - she was finally relaxing, letting herself go, not worrying about life. I also wondered if she was actually a bit deaf. She seemed to be aware of what was going on but unable to register what was being said. At this point, I didn't really understand that it wasn't her lack of listening skills that were the problem - she no longer had the same ability to process the things said to her.

Then, perhaps the most noticeable stage of this disease began to creep its way into our lives - the repetitive questions. Dee became increasingly confused, wondering where people were, asking the same questions and telling the same stories. She starts to miss appointments, get confused about arrangements she's made with friends, turning up in the wrong place or at the wrong time.

She also started to take an irrational dislike to people. Not just people, but old friends, family, people who had been part of my childhood and a massive part of her life. She began to confuse them for others, calling them different names, forgetting when she'd last seen them, which made her feel like she was being abandoned by her nearest and dearest.

This leads me neatly onto the next stage - anxiety. Dee became increasingly agitated and constantly worried about small things. She fixated on them, needing constant reminders that everything was OK, that she was OK, that nobody was going anywhere. Now, with hindsight, I can only theoretically conclude that this was her way of understanding that something wasn't quite right. Another vivid memory I have is of her finally admitting to me that she felt lost and alone, finally addressing what was happening to her in her own way.

These lucid moments of realisation pepper her condition right up to the present day, and it's these moments that are one of the hardest parts to swallow. Most of the time, I think this disease is much worse for the families and friends of Dee, but then she has these astonishing and (thankfully) fleeting flashes where she fully recognises the extent of her condition. It's the panicked, desperate look on an old mother's face that's the one you never forget.

Deep, eh? Don't say I didn't warn you. Where's that bottle gone?

So, we've reached the anxious, repeating stage. She's slowly losing her grasp of reality. Her spotless kitchen has become less so with the addition of dirty utensils and pots put back in the drawers and cupboards before they're even washed. Her once beautiful, colourful garden is slowly becoming overgrown and more out of control... Almost like a...wait for it... METAPHOR of what's happening in her mind. (Hello English degree. Thank God you weren't a waste of time!)

The concept of time then becomes a problem - she complains she's been left alone all day when she's only been alone for an hour. She hates being left alone. So much so, she begins to imagine an extra person in the house. Father has mentioned to me on many occasions that she often thinks there's another person in the house but in a different room. It wasn't until recently that I witnessed this for myself. It took me a good ten minutes to convince her it was just us. It was actually pretty eerie.

And here we are. The present day. It's important to note that all of these symptoms are on-going, alongside each other, complicating the condition further.

But well done! You've made it to the end! Thanks for sticking with me. Sadly, it's not quite the end of the journey for the Rider family. We still have quite a way to go. But I'll let you finish that glass of wine in peace.

Oh, it also happens to be my Birthday on Friday. It'd be really quite a lovely present if you could donate money to my ludicrous half marathon efforts.

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.

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.