Letter to Mum

Back in early December I was lucky enough to spend 3 days at Melville Castle on a writing retreat, with fellow Bold Scribes. Bold is a remarkable organisation, which has helped me not only survive the last couple of years, but to begin to flourish in new ways.

Without Bold there might not be regular(ish) blog posts; and there certainly wouldn’t have been such a positive attitude to Mum’s ability to continue to live her best life, when by most measures her life was diminishing.

Our final assignment on this retreat was to write a letter to someone, about dementia. My initial thought was to write to my nephew, telling him that I want him to read my memoirs to me when I have dementia. But it just wasn’t working for me. The words just faltered and stuck in the pen, refusing to go down on to the page.

So instead I wrote to Mum.

I wrote to her as she was when she was my age. You can read the letter below.

Dear Mum

This is me, your daughter Loïs, but I am now 57 years old… and I have travelled back in time to talk to 57 year old you.

Don’t ask how, or why, just bear with me.

I know at this stage this seems almost impossible to believe, but shortly after your 90^th birthday you will be diagnosed with mixed dementia (Alzheimers and vascular, if you’re interested). And I am writing to tell you that it is going to be ok. You will be alright.

As James and I have said to you so many times this last year – you don’t need to worry, we are here to do your worrying for you these days. I know, I know, 57 year old you doesn’t do much worrying.. but 90 year old you found lots to worry about. I think it was that you could no longer always make sense of what was going on in the world.

I don’t know how much you know about dementia, perhaps not much more than I did last year before your diagnosis.

So what are the key things to tell you? There is so much to say, but actually I wonder how much of it really matters? What I have learned through your dementia is that all that really matters in the end is love. And you know, Mum, that although we haven’t always voiced it, that you are so very loved by all of us.

I’m going to assume that my two big fears about you having ‘a touch of Alzheimers’ as you put it the day after your diagnosis are the same as your two fears. Because I know how much we think alike.

My greatest fear was that you would no longer recognise me. Me! Your favourite daughter! And yes, I know that I am your only daughter, but it’s become one of our wee jokes – I call you my favourite Mum, and you call me your favourite daughter. Yup, I know, it’s not really that funny, but when you’re 90 it will become more amusing, trust me on this. And let’s put that fear to one side – you continue to know me, and if you don’t know who I am, I now know that you will always at least understand that I am someone who loves you and keeps you safe.

And my other fear is that you will change temperament, that you will no longer maintain your composure, that you will lose that ability you have to be firm but kind, so very kind, and always always fair. What if your dementia alters your personality, such that you are constantly angry, that you shout and swear and hit out at people, either physically or verbally? I don’t know how I would cope with that.

Perhaps you are worrying about what you will lose… what bits of you will be lost to all of us (your easy conversation, your stories, your memories, your ability to draw with such ease, how you can make a feast for a table full of family from what appears to be frugal scraps in the fridge). And yes, all of that will go. But none of that is really you. It’s just stuff you do. You are still there.

And I can confirm that 91 year old you with relatively advanced dementia is the concentrated essence of who you are.

Never have you been more loved.

But one thing – look after your teeth.

All my love

Loïs, your favourite daughter

***

You can read more about my relationship with Mum and her dementia starting here, with Taking Smock of the Situation, an embroidery project I started after I realised Mum might have dementia. There I was, embroidering her old fisherman’s smock with symbols relating to her life; while her memories were slipping away, like me at a party I don’t want to be at.

Tags: dementia, Mum Has Dementia