It is late on a Sunday afternoon, we have eaten well, we have walked in the beautiful spring sunshine, we have watched Scotland beat France in the Six Nations Rugby (born Scottish, I am still in shock) and we have had a lovely family day. Archie has not been 100% for a few days, but he is starting to eat better today (always a good sign when they want chocolate, I think), Martha has been her usual, compliant, helpful self and Mabel – well, Mabel has been her typical Mabel-self….tantrums, tears, foot stamping, giggles and cuddles (just to reel you in again) and a touch of toddler violence. Love it!
I’ve had a shit week if I’m completely honest. Hubby went away on a road trip around Scotland with his brother and his dad. And, as always happens when he goes away, things start to fall apart. The kettle broke.The smoke alarm decided to go on the blink and emit shrill, very loud noises every couple of minutes through the night on Wednesday night (I nearly killed myself falling down the stairs trying to change the back-up battery on a wobbly stool!). The electricity tripped off on Thursday night making the alarm go off and I wasn’t able to make myself my nightly cup of chamomile tea. Mabel was up in the night – every bloody night, either with her “nasty cough Mummy!” or she couldn’t find her “blanlent” (blanket – also known as a muslin square) and /or she bloody pissed the bed. It was a long week!
Then he came home. Hallelujah! Then he declared to be unwell himself on Saturday, meaning I had to go into work on his behalf. Oh how I laughed – what fun! What fun it is to be a responsible adult! What fun life can be!!!
It was whilst at work, covering for my very poorly (please read the sarcasm in my tone here) husband on Saturday, that an old friend and customer came in with her cousin. Glenis is a dear old customer and friend of my hubby’s. She lost her husband a few years ago, very suddenly to cancer and she is the sweetest and loveliest of ladies. She and her cousin Carol came into our store and we had a long and lovely chat over a cup of tea. It was so nice to see her and she asked about my mum as she had heard about my blog and was concerned about how things were. It is a funny thing, to talk so openly about your family and on some level I am very conscious about how my mum would hate to be talked about in this way. But, then I remind myself that people care and when we are talking about it, and her, we are only ever talking about her in a good way – in a way that would prove to her how much she is missed and how much she is loved.
We talked for some time and it was so nice to see my old friend and her cousin – who very kindly told me the same thing many have told me over the last 12 months…that my mum is in her own world and that the best advice is – if she’s happy in her own world, then I have to try and join her there.
People have said this to me so many times recently and each time I smile and nod but deep down, behind the smile, I actually want to shout and scream at them. Don’t misunderstand me, I know they mean well and people are just trying to help – and my God, I would have probably said the same a few years ago, had I been presented with a similar situation and felt like I needed to try and help. It is the stock response isn’t it? It is what you take from snippets you read about dementia, as you go about your business. It is what I would have also used as a way to help, before I had known the terrible truth. Before I had started to live this bloody nightmare. Before I had witnessed the devastating destruction of this disease.
You see, my mum isn’t happy in her own world. She isn’t settled and content, only slightly muddled. She isn’t simply in a different reality where it is easy to reach her if I just squint a little, or imagine the world is square or flat. My mum is in a hell only she can see. She is frightened, a lot of the time. She is scared and confused. She is trapped in a house she believes is a prison, with a man she does not know. She is constantly wandering the house, looking for her Stephen, the man she loves, whom she can no longer see. Instead, she sees men guarding the doors and children running around freely, annoying her intensely with their gaiety, noise and frivolity. She is constantly trying to escape, by hiding keys, by packing her handbag with all sorts of strange items (nightdresses, knickers, hats, spoons, plasters, books, handkerchiefs, toothpaste – the odder the better it would seem) and by putting her coat (or sometimes several coats) on over her pyjamas and walking up the road to see Bob and Jean, her friendly neighbours, in her slippers. Sometimes I think it would be great if I could join her in her world, if that would help. But, her world seems like a dark and unforgiving place to be honest and one I am not sure I would find my way out of too easily.
I broached the subject of Granny today with my kids, the elder two anyway, as we set off on a lovely Sunday afternoon walk. I mentioned the fact that possibly, maybe, depending on how things go, don’t count on it, as it might change, but potentially, at some point, you never know – Granny may need to go into a special care home, where she can be looked after and we can visit her every day or so. That, if this does happen, Papa may come and live with us for a few months, while things get settled and he can sell his house. “With Maggie?” asked Martha. “Yes, with the dog too” I answered. “Yippeeeeeee!” was her response. A few moments later, on our lovely sunny Sunday walk, I skidded in a massive dog turd and got a huge pile of dog shit ingrained in the treads of my lovely Red or Dead boots. Wonderful. “F**king dogs!” I thought.
I have spoken to my mum twice tonight on the phone. Both times she has wandered off mid-conversation, leaving me hollering down the handset “HELLO? ANYONE THERE?” She has her coat on apparently, and is trying to get to my house to visit me. She seems to care not how she will make the journey – the bus I think is her preferred route just now. I have had to try and calm her and explain I will be up to visit in just a few weeks, as will Emma and my aunt Lily (her sister from Canada). “Oh yes, Lil and Ronnie will be here” she says, “I wouldn’t do it, imagine all the muck! Ugghhh eating things that have grown in the garden!”
“Have you been our today Mum?” I ask. “Have you been out with the dog? It’s been a nice day.”
“Stephen’s going to be looking after him” she says. “All I get is chips and peas – a bit fatty, but you eat what you can and then you leave it.”
And that it how our conversations go. That is now my relationship with my mother. So, believe me, I would love to go and visit her in her mad and crazy world if I could. Just so I could spend a few hours with her, giggling about the madness. Enjoying the surreal. Sharing and being. I would give a lot for that. For her to know me for a few hours. For her to be there for me and feel the love of her children and grandchildren. For her to know how much we all adore her. Instead, we deal with her seemingly constant agitation, we ask the same questions each day (How are you? Have you been out with the dog? How is the weather? Have you had your dinner?) and we muddle through, not really sure where our destination is or which diversions we will need to take to get there. I just need to make sure I miss the dog mess from now on. There is enough shit in my life just now, without doggy doo doo all over my favourite boots.