Real stories

A dream of a life before dementia

Our dementia journey

My lovely husband Ray was diagnosed with mixed dementia, Alzheimer's and vascular dementia, in 2019. Six years on from then, we are now, tragically, in the very advanced stages of Alzheimer's and, yes, life is challenging but we are hanging on to each other, as best we can. 

Shortly after diagnosis, I began to journal what was happening to us. Over the intervening years, I detailed events and inherent emotions. I found getting it all down on paper, really helped me get my head around what was happening to us. My hope, in sharing it, is that it may perhaps help others, on the Alzheimer’s frontline too.

As Alzheimer's has progressed, so too has my inner turmoil. There is a persistent ache that flaws my waking and dreaming hours. A deep and stubborn longing for things that slipped from buttered fingers, before I realised their precious fragility.

As Alzheimer's strikes through Ray's memories, the part of them that resides in me holds onto them tighter. They glow all the brighter in my head, as they leave Ray’s, because I’m holding onto them for both of us.

Cast as we are upon the progressively choppy waters of advanced-Alzheimer’s, frequently rocked by rampant uncertainty, a clouded sense of loss and foreboding has forced me to re-evaluate our relationship. 

The usual marital ebb and flow of affection and annoyance has settled into a, let’s-just-appreciate-what-we have, or did have, mindset.

This then, was the feverish state of mind, from which the dream sequence surfaced. It seemed to me, to capture the lonely dichotomy of grieving for someone who is mentally absent but physically present, as with Alzheimer's and dementia.

The Dream - missing the Ray I knew

I couldn’t sleep again last night, despite extreme exhaustion. The previous few nights it was pain and an inability to get comfortable, due to an osteoarthritis flare up in my spine and hip, keeping me awake. 

Tonight though, with the pain - at least for now - marginally better, I still couldn’t keep my eyes shut. I counted down the passing hours on my watch: 2am, 3am, 4am, alternately reading and re-tucking my e-reader back under the pillow in barren hope of sleep that didn’t come. 

Somewhere, in the quasi-sleeping hours of early morning, a dreamlike sequence distressed me: 

Ray is fast asleep next to me, both in the dream-sequence and reality. I am suddenly aware of another presence standing next to me. Looking up, I see it’s the other version of Ray - him before Alzheimer’s. He pats my hand and smiles his old, gleeful smile. Leaping up, I embrace him:

Oh my god, I’ve missed you so much.

His arms are warm and welcoming. 

“I miss you,” I keep repeating. He nods. 

“'I miss you too,” he whispers next to my ear, soothingly patting my back, apace with my ragged breathing. 

I've fantasised so often about retrograde reunions like this. There’s so much, I’ve longed to say to him, if ever I were afforded the chance to do so again but, in that fuzzy moment, I can’t think of a single one of them. 

Ray steps back and looks into my eyes. Neither of us say anything but we both feel the weight of things unshared. Too soon, he turns, as if to leave.

“Wait,” I say, moving to follow him. I pause for a moment and look down at ‘today’s Ray’ still sleeping, then back at the Ray that used to be. I’m torn. 

“I can’t leave him,” I say.

“I know,” he says softly. 

He flashes me a last mischievous grin, winks and is gone. 

Suddenly, I’m wide awake, my face and pillow are wet from fluent tears. I'm unsure if it was a dream or a concoction of my sleep deprived mind but it felt so excruciatingly real. 

And, every time I recall that surreal moment, the tears flow all over again. I just can't get it out of my mind and, painful as it is, I don't want to. For there marks the spot: I last glimpsed my Ray.