I met up with a good friend this morning and we exercised the kids (I lost two of mine temporarily – found them just before the point when full blown panic sets in) around Harlow Carr Gardens. We spent a small mortgage treating ourselves to a take-away cuppa and a bun at the Betty’s cafe. Not the indoor, queue for half an hour then sit quietly and enjoy 19th century service cafe. No, we sat at a wooden table in the freezing cold and convinced ourselves we were thoroughly enjoying the fresh air. Our expensive beverages bought from the Betty’s “shed”, which is basically just a hut where they can still take payment by credit or debit card and charge you full price for tea in a cardboard cup.
My friend’s dad suffers from Alzheimer’s and has done for around 10 years. We laughed and joked about some of his antics and I asked questions about what he can and cannot do anymore. I found myself quite envious that he can still make himself a cup of tea and can be left for short amounts of time on his own, as long as there is a note informing him of where his wife is and the telephone number to reach her. He knows everyone still, but is confused about where he is a lot and needs constant reassurance from those he loves.
Reassurance doesn’t help my mum anymore. She can no longer make a cup of tea and needs help getting herself dressed each day. When I was up visiting a few weeks ago, Dad asked me if I would help her dry her hair and she sat beautifully – very still, almost statue-like – whilst I tried my best to curl her hair round the small brush and get some body into it, the way she has done herself for years. I used to sit in her room as a child, watching her get ready for dancing or a night out with Dad, so I knew what the technique looked like and it wasn’t a bad first attempt, if I do say so myself. I was quite impressed with the lift and body I had managed to create. It wasn’t until later that evening that it hit me. That was the first time I had ever done my mum’s hair. Ever. So, when was the last time she could do it herself? Had I missed it? What other last times have I missed? When was the last time she could make a cup of tea? When did she last play golf? When was the last time she had her sewing machine out and fixed a hem or made a cushion cover? Did anyone notice these last times? Did anyone realise the significance of them at the time? No, is the answer and that makes me so sad.
If only I’d have known it would be the last time she was going to be able to read Mabel a bedtime story, I’d have treasured it and made sure I didn’t rush away to get dinner started, or fuss over the pile of dirty clothes strewn on the floor in my youngest daughter’s excitement about “P-J time”.
If only I’d known it would be the last time Mum and Dad were able to come and stay with us. I’d have done something special. I’d have made dinner more exciting or memorable. I’d have invited my brother and his family around. I’d have marked the occasion somehow.
If only I’d known it would be the last time we went to the theatre. I’d have made sure I sat next to her. I’d have held her hand through the production (it was a panto) and glanced sideways at her as she laughed joyously at the silly jokes and childish humour. I’d have made sure her laughing face was fixed in my memory and would have focused on her and not the man in front (whose head was just enormous, meaning I had to lean to the right to see round him).
If I’d known, I’d have been more aware. I’d have watched and listened and been in the moment more. Now these things, and so many others are just memories. I can no longer take my mum on a girly shopping trip around Edinburgh, having lunch at a lovely Italian restaurant – treating ourselves to a glass of wine and a pudding . My mum trying her hardest to buy me something – “Try it on Sarah, go on, it’ll be my treat”. I can no longer ask her to come and spend a weekend with me and help me choose fabrics for my living room, which desperately needs redecorating. This room, along with rest of the house would be well under its refurbishment had Mum still been Mum. I’d have had her down to visit several times over the past 12 months and we’d have had great days out looking at fabrics and choosing colour schemes. Her sewing machine would have come with her and new blinds or curtains would have been whipped up in just a few days. I am now, quite ashamed to admit that I now don’t know where to start. I am scared of going to the fabric shops on my own. I don’t know how much fabric I will need. I have no idea how to work it out. I don’t know what lining I’ll need or what fixtures or fittings will work best. I didn’t know that I would need to know any of this so soon. I didn’t know I would lose her so bloody soon. Can’t anyone hear me? She is still needed for all of this. She is still needed! I still need her! I am not ready to let her go yet! I want my mum back Goddammit – you bloody evil, nasty, cruel disease!!!!
And then I remember my walk this morning with my friend. My friend, whose dad is also suffering from the same debilitating disease and whose 40 year old sister is bravely fighting Motor Neurone Disease and I remember her smiling face and her amazing positivity. Time to wipe your tears, stop feeling sorry for yourself and crack on with it Sarah.
I can but try.