Tuesday 21 August 2018

A Daughter's Diary - Alzheimer's Through my Eyes

Written by my sister Jacquie Williams

TWO WORLDS......ONE DAY
Mum's day.
The rain is streaming down the window pane and it's so cold and dark in here. I'm frightened now. I wish Mum would hurry up and come back. I don't want to be here holding little Peter any longer, he looks a strange colour and is so still and quiet. I'm worried that he won't wake up.
I look at the clock and can't quite make out the time but I know I've been waiting for ages. Mum should surely have managed to find Mrs Barber, our neighbour, by now.
I decide to go and look for her, she must be just around the corner, she can't be far. I wrap my little brother Peter in his shawl and open the door into the dark night....
The warm air hits me as I make my way down the lane and I can feel myself beginning to sweat and panic as the planes roar overhead in the summer sky.....that's funny I thought it was night time. Are they our planes up there, or the Gerries?
As I reach the end of the lane I come to a crossroads. I don't remember this junction. Maybe I've come the wrong way. I turn back and retrace my steps but things are starting to look different now as the sun begins to go down and the shadows grow long and strangely menacing.
I look down at Peter. He is quiet, not moving. I hold him closer hoping to make him feel safe and warm.
I walk further along the lane and find the turning I've been looking for, hurrying along amongst a noisy crowd who are making their way to the nearest shelter. A loud explosion makes me jump and I catch my breath as the air raid sirens scream through the town. Overhead the searchlights scan the night sky and planes rumble past dropping their spiteful loads on the buildings below. The sky turns fiery red and ash floats down and lands in my hair. I find it hard to breathe and start to cough as I frantically search the faces for my mother's familiar smile.
People are rushing past me, laughing and jeering....why are they laughing? My mother is lost and we need a doctor for Peter.
" Have you seen my mum?" I ask. They shake their heads and hurry on their way. I can feel the panic rising in my throat and tears begin to prick my eyes. " Please, have you seen my mum?"
Nobody seems to notice how serious this is. Mum is missing and Peter is getting colder.
"Please, somebody help me, I need to find my mum"
I carry on asking but everyone is in such a rush trying to escape the bombing. What am I to do?
Time stands still and I feel like a statue stuck in the middle of a mad merry-go-round of lights and sounds.
I hold Peter closer and sing to him softly as the noise and confusion surrounds us, sending my head into a whirl.
"Are you alright, love?"
I open my eyes to see a kindly face, not my mum's, but a kindly face all the same.
"Have you seen my mum?" I ask. The lady looks puzzled.
"I've lost my mum, have you seen her?" I ask again, feeling relieved that at last someone is going to help me. Another lady turns up and they tell me that they know where I live and my mum is probably back home by now.
As we make our way through the lanes I start to feel a bit better although the night feels cold and scary. The raid has stopped and most people have gone home leaving the streets quiet and empty as I walk along with these ladies. I hope they know where we're going and I really hope my mum is home. I don't know what I'm going to do if she's not, and what about poor Peter? I look down at him. He looks asleep.
Eventually we come to a little house but I don't think it's ours. I try to tell the ladies that this isn't the right place but they say that my mum is on her way and will soon be here. Another lady turns up and opens the door, I think I know her.
As we go in I can see that this isn't my house. Everything is different and in the wrong place but I sit down with Peter and just hope that mum turns up soon and we can go home. One of the ladies makes some tea and I can hear them whispering together in the kitchen. What is going on? I wish mum would hurry up.
Then the door opens and someone comes in. I know her, but is it mum? She comes over after briefly talking to the ladies and holds my hand. "What were you doing, going out so late, mum?" she says.
Why is she calling me Mum? I think she's got mixed up. I look into her face and I realise that she is my sister Margaret. I'm so relieved that she's here.
"I was looking for mum, Margaret, have you seen her?"
"Let's get settled. She'll be back soon. It'll be alright now, Mum. Come on, let's get you back into bed." Why does she keep calling me Mum?
The other ladies all go and mum makes me another cup of tea. When did mum turn up?
It's all very strange but I feel better now that she's here. The house feels warm and cosy and baby Peter looks so much better. He's moving gently and his little face is soft and pink. I still hold on to him though, just incase.
As I look around the room I can see my daughter and son-in-law talking in low voices. They look so worried. I wonder what's going on.
"What are you doing here?" I ask. They both look at me with such surprise that I have to laugh out loud. Then I remember that I was going to show her my new shoes, so I go to the bedroom to get them After a rummage around in the cupboards I find the shoes and show them to my daughter.
"I'm glad you're here, do you like my new shoes?"
She says she does then helps me get undressed and into bed. I don't know why she thinks she has to help me, I'm not a child, you know! And I tell her so. She's treating me like I don't know what I'm doing!
When I'm all tucked up in bed, with Peter sleeping peacefully beside me, mum sits on the bed and we chat for a while. How come mum is here again? It's all so confusing, with these people coming and going!
I'm starting to feel drowsy now, safe and cosy in my bed. And mum's back home again, so everything is alright now. I snuggle down and drift off to sleep.
My day.
We had a nice day today. Mum and I went into town as usual and looked around the local shops which she likes to do every day. We bought Mum a new pair of shoes, as her favourite pair are so worn down now and it's been a struggle to get her to change them. So today was a little victory.
I make mum something to eat and a cup of tea and we chat happily for a while before I leave her watching TV for the evening, as usual.
I'm awoken by the sound of the phone ringing. It's my sister telling me that there's been a problem. Mum's been found walking around the town in a confused state. It's 1.30am.
We hurriedly get dressed and jump into the car, making the familiar 10 minute drive along to Mum's, where we find her sitting on the sofa with my sister and a couple of her neighbours. Mum looks bewildered and anxious, and is holding her baby doll tightly.
It seems that she was wandering along the high street as the pubs and clubs were kicking out and fortunately one of the passers-by recognised her as their mum's neighbour. My sister and I had left our phone numbers with the neighbour so they were able to get hold of my sister straight away as she lived close by.
I go over to Mum and hold her hand, talking gently to her as she stares into my face. She frowns and seems to be trying to work out who I am. Poor Mum, she looks so frail and almost childlike.
She holds her doll more tightly in her arms then says "I was looking for Mum, Margaret, have you seen her?" She thinks I'm her sister Margaret, which happens more and more these days.
I try to distract her as she seems to be getting agitated and has a worried look on her face. I make us some more tea as the others all leave, and try to calm things down a bit, bring things back to some form of normality.
Bri and I try to work out what we're going to do now. Things can't keep going on like this. Mum's not safe any more. And we are all living on a knife edge wondering what's going to happen next. So far, we've been coping, well I say coping.....we've been trying our best, but now this really has stepped things up a level. We are all stressed out with worry, especially Mum, who seems to be living in a parallel world more and more now, and is continually anxious and agitated.
"What are you doing here?" Mum pipes up out of the blue. Bri and I look at each other in surprise, then at Mum who seems almost back to 'normal' again. She bursts out laughing at our faces then scuttles off into her bedroom and starts rummaging about in her wardrobe, coming back with the pair of old shoes which we tried to replace earlier in the day.
"I'm glad you're here, do you like my new shoes?"
I say I do, as I help her get undressed and back into bed. She's not happy about it at all, telling me to mind my own business and stop treating her like a baby. I try to stay calm and repeat over and over again that it's late at night and she really should be trying to get to sleep now.
After a while of chatting and soothing, with me sitting next to her on the bed and Mum's doll tucked in beside her, she eventually drifts off to sleep.
We stay until the day begins to dawn, then go home for a few hours before coming back again to start another day. It's the day that we begin to look for a calm and caring new home for Mum......a home where she can happily and safely live out the next chapters in her changing life.
The first story depicts what may have been going through Mum's mind on that night. I don't know for sure but I think it gives a fair idea of the terrible confusion and anxiety that she must have been feeling. From the odd bits of information that I could glean from her I pieced together a parallel world where everything would have felt very real to her but seemed worryingly odd to us.