Real stories

Remembering the day my husband was diagnosed with dementia

Before taking early retirement, in 2019, I worked for 20+ years in health and social care, so have experienced Alzheimer's from both sides of the fence. Being this side of it is far bleaker but there is still love and laughter too.

As a writer, I started to write a journal about mine and my husband Ray's dementia journey.

With Ray now in the later stages of dementia, day-to-day life is harder. My heart breaks a little more each day, as the man I love slips away from me. In the midst of all this, I found writing it all down helped. It occurred to me my journal/blog may help others in the same boat.

'Being forgotten' by Julie Blunden

Consulting room one is soothingly decorated, its pale surfaces undented by the blast-zone between doctor and patient.

The walls are calm green and the muted art, carefully laid upon them, conveys bland serenity. Even the breeze billowing the window-blinds dare not ruffle the taut silence.

In sore-thumb contrast, I am anything but calm.

Grimly seated in the consultant’s observation-line, my gaze bolts toward the window. Sunlight drains through the blinds, seeping intrusively into the room. I can hear cars driving past and people talking.

Life goes on as normal for those outside of these walls. Those who have not just had a tyre-shredder thrown down in front of their life-path.

For us, a lovely autumn day has suddenly become a jarringly incongruous backdrop to our own personal tragedy.

The 'A' word: Alzheimer's

The consultant has just said the word I so desperately didn’t want to hear. The A word. Alzheimer’s.

I draw in quick, sharp breaths. A swell of pressure has me patting my chest as my heart and lungs jostle for space amidst a breathless expanse of panic.

The consultant looks at us and we back at him. Then deep, juddering sobs breach the dam and shudder out of my tightly-pressed lips. I am unable to control the surge of agony, even to catch a breath.

In an effort to slow the tide and stop the sobbing descending into feral wailing, I concentrate on forcing deep breaths into and out of my lungs. Reaching for my husband’s hand, I squeeze it.

'I’m so sorry', I manage, in-between breathy sobs. 'I’m supposed to be the one being strong for you'.

He squeezes back, a benign expression twitching his lips. 'It’s ok,' he says. But it isn’t.

I try to latch on to strands of hope but, in that moment, I can see everything slipping away.

Not just memories, but the narrative we share, our intimate knowledge, the future we had planned. The man I love will eventually be stolen from me.

Swirling uppermost in the vortex of fear, bewilderment and sorrow that engulfs me is my serrated grasp of the direct hit Ray has just received.

Because, as bad as this is for me it must be so much worse for him - faced with the diversion of self-disintegration, now plainly signposted for him.

Aftermath of the diagnosis

I move my chair closer to his. We hug and breathe together. 'We’ll be ok,’ I say, with shakily resolute feeling.

‘Well,’ ventured the consultant, attempting to throw us a lifebelt, 'the positive thing to take away from this, is that at least you now know.’

Sitting there, tears coursing down my face, I was trying and failing to galvanise some composure. It didn’t feel positive to me. Positive is the very last word I would have applied to that moment.

This, our first formal introduction to ‘it,’ the hitherto nameless something that was causing Ray’s memory decline, had me wanting to cover my ears and run. If this was a 'positive', I didn’t want to hang around for more.

Even the blistering announcement of ‘its’ name, provided no light we wanted to follow.

Aware of the possibility of Alzheimer’s, I had so wanted our ‘it’ to be something else. Something much less substantial and not nearly as sure-footed.

In the months between testing and conclusion, I had tried not to think about the outcome. Simultaneously wanting and not wanting to know.

When I did catch my thoughts stumbling down the path of dreadful possibilities, I tried to allay my fears with alternative explanations for Ray’s difficulties. Mild cognitive impairment, age-related degeneration or something to do with his diabetes maybe.

I fought to adjust my incline toward conditions with hazier outcomes. Things that we could perhaps mitigate the effect of.

This journey, destination unknown, had started some time ago - allowing plenty of time to think about arrival.

We both knew something was wrong, and had rationalised our way into finding out what it was. So I couldn’t understand why it hit me so hard. I guess hearing the roar of a juggernaut hurtling towards you doesn’t make it any less shocking, or painful, when it finally hits.

Questions about the diagnosis

With Ray pragmatically accepting of the news, I felt terrible about falling apart. It was supposed to be me holding it together for him, not the other way round.

Mentally flailing around, in the piercing silence, I tried to think of something to say.

A quick shuffle through the rapidly populated ‘post Alzheimer’s diagnosis’ Q&A index threw-up two distinct sections: Things you ask about and things you don’t.

There were questions I wanted to ask but didn’t because I feared the answers.

Questions I suspected I knew the answers to but didn’t seek confirmation of in case our worst fears were realised; mine and Ray’s. And those I wouldn’t even allow myself to think about.

I sensed the room holding its breath. In the leaden space between dreadful revelation and response, the expectation that someone should say something pressed itself between us.

Grasping the baton, I rapidly condensed and sanitised appropriate questions. With Ray and I both being predominately ‘glass half full’ people, I reached for the straws of optimism the consultant had laced the diagnosis with, ‘you mentioned medication. How will that help?’, I asked.

Several ‘safe’ questions later, I had reached the point of having digested enough for one day and suspected Ray had too.

Leaving the clinic

The brunch I had thankfully pencilled in, as a post consultation celebration or commiseration - whichever proved apt, drew us beacon-like to concluding this cruelly pivotal moment.

With our hands still fastened together, I turned to Ray and asked him if he had any questions he would like to ask. ‘No,’ he said, ‘I don’t think so.’

As we headed out of the building, becalmed consultant and his shell-shocked patient and spouse indulged in safe, sunny-uplands, conversation, ‘the sun’s really warm for this time of year.'

‘Yes, it is.’

‘We should make the most of it.’

The relief at escaping the gloomy valley of consulting-room-one was tangible between the three of us.

Ray and I walked towards the nearby café we noticed when turning into the car-park earlier. Mirroring valiant grins, we linked arms.

‘A full English I think, don’t you?’