Guest Blog by Alison Bolus – Living with dementia

Alison recently contacted me through my blog as she too has been diagnosed with Alzheimer’s. She is 56 years young and lives with her husband in Surrey. She said she wanted to write down her thoughts but didn’t know how to go about writing a blog so I suggested she email me. So today I’ve copied Alison’s thoughts into a guest blog – they’re fabulous words which everyone should read.

All at sea in my head….

I have chosen a maritime theme for my ramblings, because it seems an appropriate theme for someone who feels as if she is drowning and has lost her bearings, literally and metaphorically.
On the day that Alzheimer’s came calling (subtly, innocuously, choosing a victim at random), I had no knowledge of him…. So in my innocence, what seemed to be a harbour of tranquility was in fact a maelstrom of danger that hid sharp rocks lying just below the surface and unleashed dangerous currents from within its maws.
I couldn’t have known that this would be such an important day. The end of my life so far; the start of a new life. A line would be crossed, without me even knowing it was there. And there is currently no return ticket.
Had I already stepped over the mark that divided safety from danger, so that I did not notice what was happening?
I must have missed the signs that were there to protect me and warn me. Should I have felt differently on this portentous day? Nothing seemed amiss, but everything was amiss. Things would never be the same again…
Suddenly, a dark tunnel from nowhere stretched ahead of me. So strange. So unexpected. A smoky smell cum taste filled my head. In that moment, my life changed. There was no Biblical crash of thunder, no blinding light, no hint of what lay ahead. Not even a sense of loss. Confusion, yes, but nothing more. So mundane, and yet so full of portent. A harbinger of doom.
Seizing his moment under the cover of confusion, Alzhiemer’s tiptoed into my life when my back was turned … changing everything….
…So now Alzheimer’s nibbles at my brain, confusing my mental compass, so that many certainties become just will o’ the wisps tricking me into submission.
The words I seek to use hide themselves in the margins of my brain. They are there for a fleeting, tantalizing moment or two, before silently slipping away to where my brain, which previously reigned triumphant, now lies in shattered, tattered shreds of short-held memories.
Flashbacks of my first visitation haunt me. The smell, the sensations are still with me, teasing me, provoking me. Many certainties have been swept away in the brave new world I must now inhabit. But I am not brave. Not brave at all. Give me a lifejacket to keep my head above water and I’ll be on my way. Splish, splash. No looking back. Bye!
I had I hopes and dreams for the future, and although I cling on to what I still have, with the fierce determination of a sailor adrift at sea with only a ragged flag to mark my precarious position in these bewildering chartless seas, I fear being lost in a fog of fear mixed with only a little hope.
I lose, find, lose and find again (all in the blink if an eye) so many things, from keys and phones to memories of my childhood, ideas, even identities. I open my door to walk to a friend’s house, and realize that the road I had expected to see was one from my junior school years. How did that happen?! I thought I was in charge of my mind: turns out it’s the other way round… Did someone change the rules without telling me?
But all is not lost and all is not bleak. Family and friends comfort me, tease me, spoil me, take me out for lunch or shopping, distract me, humour me. Other friends offer support in many other any ways, from lifts and walks to being a shoulder to cry on.
Steve and I share gallows humour (“you have to laugh”). We also share a fear of what is around the corner. I can look ahead to the beckoning horizon with only one eye open, just in case )…
And there lies the nub …
Looking ahead, I know that my horizon is not one I had thought of, even considered, but it is my horizon now, and it is up to me to make it as good a one as possible for all of us.

So now I feel all at sea (in my head)
Alzheimer’s nibbles at my brain, confusing my mental compass, so that many certainties become just will o’ the wisps tricking me into submission.
The words I seek to use hide themselves in the margins of my brain. They are there for a fleeting, tantalizing moment or two, before silently slipping away to where my brain, which previously reigned triumphant, now lies in shattered, tattered shreds of short-held memories.

Steve and I share gallows humour (“you have to laugh”). We also share a fear of what is around the corner. I can look ahead to the beckoning horizon with only one eye open, just in case )…
And there lies the nub …
Looking ahead, I know that my horizon is not one I had thought of, even considered, but it is my horizon now, and it is up to me to make it as good a one for all of us as possible.
I understand that my life will be different to the dreams I had nurtured, and poor Steve will have to bear my decline, but the sea keeps flowing and I keep dreaming and hoping. For a cure? Maybe. I don’t look too far ahead. One day at a time is just fine with me…which is just as well with my memory…!