My sister and I were up visiting the Crazy this week, laden down with bags, one travel cot, several pairs of walking boots (ever hopeful of a blustery Scottish walk), a very fancy highchair and a team of 5 lively children. Our journey was uneventful, thank goodness, so we arrived at lunchtime on Wednesday with several days’ worth of anxiety bubbling away inside our tummies, concerned about what would greet us as we walked through the front door, but equally pleased and relieved to be able to offer Dad some much needed company and help for a few days.
Mum was very aloof when we first walked in, almost like she didn’t want to look at us or acknowledge our arrival, or perhaps it is that she cannot, or does not have the want nor the desire to….who knows? Not I, that’s for bloody sure. It took both Emma and I to stride up to her and turn her gently towards us for us to witness a small glimmer of recognition and a brief, reluctant smile. Mabel, predictably, ran into the kitchen with a bold and completely unphased, “Hello, Granny!” which I am pleased to say made my mum smile broadly, despite her look of obvious confusion over who this little person was.
My sister and I were always planning to visit in the Easter holidays, we’d had it booked in our busy schedules for some time. Lovely then to be able to coincide our visit with the arrival of Mum’s eldest sister and brother in law: Auntie Lily and Uncle Ronnie, who live in Canada and have done for the best part of 50 years. Mum and her big sister have been emotionally close, despite being thousands of miles apart for many years and it is rare that a year has gone by without either my parents making the trip across the pond for a holiday or my aunt and uncle coming over to Scotland for a visit. They have enjoyed numerous golfing holidays, the four of them together over the years and we spent a substantial time over the past few days looking through old photos with Mum, trying to get her to remember, recognise, acknowledge and enjoy the anecdotes that were recounted as we all tried so hard to be merry and positive in what was so blatantly a bloody horrendous mess of a situation for us all.
My aunt has been reading my blog and we have been in touch over the past few months and of course she has been speaking to Mum and Dad regularly, so she has known that Mum’s condition has deteriorated rapidly since my parents’ visit to Canada to see them last summer; when Mum was confused and bit muddled but apparently managed to mask the delusional and paranoid aspects of her disease for the majority of their trip. My poor auntie Lily, how she must have been shocked and so very sad when she was presented with the reality of who mum now is, I think she has found her first few days with her little sister very upsetting. In fact, I don’t think….I know. She helped put Mum to bed last night after a lovely dinner, which Mum seemed to enjoy, though her blank and staring expression revealed nothing throughout the whole dinner, despite our very best efforts to engage her in conversation and memories. After half an hour upstairs with Mum, Lily reappeared downstairs, visibly upset by her new role as carer. No longer the sister that would make my mum laugh. No longer the sister who would be flung around the dance floor, both of them laughing throughout their jive, feet nimble and quick, arms graceful and accurate. No longer the sister to share secrets or stories about grandchildren. No longer the sister to play golf with, or to share a bottle of wine with. Now, a helper, a carer….someone to assist mum in getting round the kitchen; stopping her from washing the telephone (we all missed this one yesterday and the phone is still drying out on the radiator) or from putting the carrot peelings in the dinner rather than in the bin. But, I have left my parents’ house today, comforted at least that Lily is there because in moments throughout my visit I have seen recognition on my mum’s face and yesterday, as I was making dinner in the kitchen, I heard her laugh. Really laugh. Her old ‘stop the traffic’ raucous belly laugh that was always so infectious (and sometimes embarrassing when out for dinner in a posh restaurant and she’d get her uncontrollable giggles!) and it stopped me dead in my washing-up tracks for a moment. I haven’t heard that laugh for a long time, possibly a year, possibly more. I can’t even remember the last time she was happy enough or content enough to let more than a natural small smile pass her lips and here I was, standing two rooms away and I was blown away by the sound of her. The sound that I used to take for granted. The sound that used to annoy me as a teenager, because once she started she couldn’t stop. A sound, that until I heard it again yesterday, I didn’t know how much I missed.
So, I am glad for Lily visiting, not only because for one brief moment it brought Mum back again, but because it might happen again. I can hope can’t I? It is very likely going to be the last time she sees Mum at home too, as despite all my dad’s very best efforts he cannot halt the rapid progression of this shitty disease and despite me thinking he looked like Clark Kent when I was a child, he is not Superman and cannot keep going like this.
I am sad for her though and I was so sad to see her visible shaken last night. Of course, her tears sent Emma and I into a complete meltdown and my poor uncle Ronnie was left sitting at the dining table with three emotional women, heads in their hands, sobbing uncontrollably. Poor bloke was probably looking forward to a nice wee holiday and he gets this!
I have watched my mum and her big sister over the past few days; the way Lily coaxed Mum, listened to her, was patient with her and never appeared ruffled or confused. The way she coped calmly and fluidly with the constant and dramatic changes in conversation and the random comments or questions that are at odds with any other topic of conversation that has been or is being had. My mum’s big sister has adapted to her new role admirably and is eager to help – treating Mum with kindness, understanding, patience and love. I watched Mum as she chose to sit next to her big sister at lunch today (she had the choice of all of us) and go upstairs willingly with her last night, no fight, no agitation, no reluctance and I can see that despite the constant presence of this bloody awful disease, Mum knows Lily, on some level and is calmed by her and her presence.
There is not much enjoyment left for Mum. The laughter is rare now and even the presence of all of her 8 grandchildren today – when my brother and his family visited for the day – has not subdued the demons that live within her brain. The sound of the children screeching and hollering, laughing and playing in and around the house and garden this afternoon has only made her wander the house a bit more than she did yesterday, handbag over her shoulder, scarf round her neck (she is cold again today) and checking things in her bedroom. Up and down the stairs, gingerly nowadays, slowly and unsteadily, my dad in a constant state of worry about where she has gone and what she is going. I touched her arm gently, trying to get her to move slightly out the way of the oven, “Don’t hit me!” she snapped at me. Oh Mum. It breaks my heart to think she believes me capable of that, but then I have to remind myself it is not my mum who is talking to me. That mum is rarely seen anymore.
As I was getting ready to go, car packed and doing my last check of the house for odd socks and books (we actually ended up leaving toothbrushes and all our toiletries! What a bloody fool I am) I walked into the hallway and my mum was with her big sister, being helped very carefully and gently into her jacket by her, being reassured that all was well by her, being coaxed into going out the front door so that she could wave me off as I left, taking 3 of the 8 grand-kids with me. It was only as I drove away, Dad waving us off, Mum hovering near the door in her old golfing jacket that I realised I hadn’t said goodbye to my little sister, who had been upstairs putting baby Annie to bed. I hope she forgives me. No doubt she will laugh and tell me it is because I am becoming forgetful (abandoned toothbrushes yet more evidence of that) and she will be the one having to look after me in years to come and we will both laugh – laughing off the fear that it might well be one of us. I hope it is neither of us. I hope they find a treatment that works or even better, a cure, as I wouldn’t wish this bastard thing on anyone, least of all my little sister.