I was contacted last week by a very lovely girl from the British Heart Foundation. Molly. She found me on Twitter and asked if she could speak to me about my mother and our experience with vascular dementia.
The British Heart Foundation? I was intrigued.
We arranged a time and day to speak. Then life threw chicken pox in the mix and Mabel was off nursery all week. She’d already had it, but a few spots on her back had made me take her to see the practice nurse (I couldn’t get to see a doctor. Those appointments are now possibly only for royalty or the dying.) The nurse wasn’t sure, but said to treat it as The Pox just in case.
By day five, I was dubious as to whether it actually was The Pox, as she was perfectly fine and the spots had not spread any further. In fact, instead of going all scabby, they just started to fade. I wondered whether they were in fact, insect bites. Cue a call to my dad and another one to my sister. The retired GP said yep, definitely not looking like chicken pox (he has now caught up with modern technology and has a smart phone we have trained him to open picture messages on!) The Intensive Care Sister told me to get her back to nursery; even if it was the dreaded pox, it was not infectious anymore.
I took her to the park. It was an valiant attempt to bribe my bored 4-year old daughter.
“If you just let me do a bit of work, my sweet darling and go and play quietly, I will buy you a lovely ice lolly at the park!”
“Yeah!” she ran off whooping for joy.
This was repeated every ten minutes until I gave in, several unproductive hours later.
My phone rang just as we got to the park and sat down at a sticky picnic table. Mabel had just started to ask for the ice lolly I’d been promising her all morning.
It was Molly.
“Ohhhhhh, Hi!” I bumbled, trying hard to sound like I was expecting her call. “Yes, I’m at a park, but no, it’s no problem. My daughter is playing nicely,” I glared at my daughter and shooed her away to play. “I am free to talk.”
Mabel gave me a look that would have killed lesser mortals.
Molly asked me to tell her as much as I could about my mum and how it had all started. I was slightly sceptical. Why do the British Heart Foundation want to know about my mother’s vascular dementia?
The answer surprised me.
Having spent years and years researching heart disease, she told me, there is now a huge understanding of the causes of heart disease and indeed, there are treatments that are hugely effective. The British Heart Foundation now want to start to help the fight against, not only vascular dementia, but also diabetes.
I was almost moved to tears. In that moment I could have stood up and shouted “Hallelujah!” at the top of my voice. It felt like we were no longer alone. It felt like we were possibly on the cusp of a change towards understanding this awful disease and therefore, a step closer to finding a treatment, or even a cure. I didn’t. I swallowed down the rising emotion and – as my 4-year old daughter, who would have sworn at me, had she known how, but instead whined and intermittently stamped her gorgeous little feet – I told my mother’s story.
I told Molly how mum was diagnosed just three years ago and just over two years’ later was put into full time care. That she now needs help with eating, washing, dressing, walking… in fact she needs help with all her personal needs. I told her how there were some worrying signs prior to diagnosis, but we casually diagnosed her symptoms as depression.
I told her about the first time my mother looked me straight in the eye and asked me where my dad was. I told her how, despite initially finding it funny and thinking my mum was joking, I quickly felt like a piece of heavy lead or intense darkness had wedged itself in my heart, as I slowly realised there was absolutely no reasoning with her. I told her how that piece of lead, or darkness is still there, but that I have now learnt how to live with it. It no longer weighs me down and impacts on my every waking moment, but instead surprises me with sudden and embarrassing explosions of grief.
I told her how terrified I was in that first moment when normal, logical reasoning just wouldn’t work and how lost I felt. How lost we all felt at that time. How scary it was. How disruptive it was. How devastating it was.
I told her about how my parents came to visit and I took my mum to watch 6 year-old Martha horse ride. I told her how my mother spent the entire lesson on her mobile. I found out later she had been texting and calling my brother, asking for his help, as she had been made to go with a strange lady. Yet, to my face, she smiled and pretended all was well. She made the right noises and said the right words to my face, yet behind the facade, she was scared and felt threatened.
This was vascular dementia, I told Molly. Delusions and paranoia. Hallucinations and irrational behaviour. Yes, it was memory loss and confusion, but it was also so much more. It was more than any of us ever thought it could possibly be.
I told the lovely Molly that one of the worst things to come to terms with is looking back at her deceit and how my mother must have felt like she couldn’t trust any of us. And, that even in her lucid moments in those early months (and there were many,) she couldn’t speak to us about her fears or her worries for the future. I am sorry that I never asked her how she felt about her diagnosis. I am sorry that we skirted the issue and instead of speaking to her about it directly, put on fake smiles and gave her promises of a future that would never come.
Instead of asking her how she felt, we tried to reassure her that we were going to do everything we could to make her well.
What a load of old bollocks.
We had nothing. Nothing. No treatments, no cure. No hope.
But, we tried to keep a little bit of hope alive in her. Perhaps that was the only thing we could do in that moment. Perhaps the truth was too bleak.
Would I do anything differently if I could go back in time?
I do know now, that if I could go back, I would tell her how amazing she was a lot more. I would be completely and embarrassingly honest about how indispensable she is. About how despite being all grown up, I still need her. I would tell her that I now know, without any doubt whatsoever, that it is her approval I seek in everything I do. It is her voice in my head whenever I succeed or fail. Her voice that I hear telling me ‘well done’, or ‘keep going, you can do it!’ Her smile at my awful jokes or her tears at my pain.
I think most girls are the same.
The only person we ever really need approval from is our mother.
I didn’t tell Molly all this. I told her most of it, the facts. I kept some of my thoughts to myself. The bits I did tell, seemed to be loud. I have a nasty habit of almost shouting down the phone. Hubby tells me off about it all the time….. Because I am in a noisy area or the voice at the other end is quiet, I overcompensate by raising my voice to a bit of a shout. It is not nice.
So, I spoke too loudly, and too openly, I am sure. My emotions almost got the better of me a few times and I distracted my rising grief by watching my daughter charge about the park confidently, not letting anyone get in her way and not being intimidated by any older kids. She is like her granny in so many ways.
Molly said she had enough. We’d been talking for about 50 minutes, it was time for me to stop. I caught myself checking the many families sitting around me with young children who couldn’t have not heard my side of the conversation. I wondered who they must have thought I was talking to and what about. I re-ran a few of the things they would have heard in my head…..
“…She rang me once asking me what to do as there were loads of men waiting for her in the living room. They all wanted to take her upstairs and rape her!”
Jesus! Did I just say that in a kids’ park?
“….She tried to walk home, but got herself stuck in a fence. The police heat-seeking helicopters were out, as were all the neighbours. A farmer eventually found her in his fence. She hadn’t known how to untie her shoe that was tangled in the fence, so had been stuck in a ditch for several hours. A shoe! That had almost been her undoing.”
Oh bloody hell!
I looked around the park. The little picnic tables closest to mine were all empty. The rest of the park was packed full with families with small children. All eating picnics and enjoying the sunshine. It was like I was surrounded by an invisible force field.
Mabel ran over. She managed to get through the force field. She could see I was now off the phone and as she approached at lightening speed, she threw her arms out in exasperation.
“Can I have my ice lolly NOW?” she huffed and puffed. There was almost a foot stamp, but I could see she thought better of it at the last minute.
“Yes, baby girl. Let’s get you that ice lolly now.”
You’d have been so proud of her, Mum. Of all of them.
I miss you x