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.

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.