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.