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 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.