With the dreaded A word, Alzheimer’s, now formally applied to my Ray, the solid contemplation of it hung between us, settling into the stunned silence that accompanied our drive home.
Yes, we had both heard the word but neither of us cared to stain the air with it. I could not bring myself to audibly repeat it. It conjured up images I couldn’t and wouldn’t associate with Ray, of doddery old dears and poor lost souls washed up in the shadowy wasteland of elderly-care-homes.
I could hardly bear to think about it, much less talk about it. I was familiar with the word, I knew what it meant and could even spell it, without looking it up; still I dodged it. If cornered into acknowledging the beast I refused to use its name,
‘Dementia,’ I almost whispered,
‘Ray has Dementia’.
Wrapping the awful ‘A’ word in euphemistic umbrella terms seemed to make discussion a little easier. I was acutely aware of the irony of being vague about a condition that epitomises vagueness.
In the high-on-the Richter-scale days and weeks following diagnosis I referred to Ray’s diagnosed condition, only if I had to and even then, I utilised softer synonyms. My hushed tone and reticence, evident enough, I hoped, to discourage insensitive exploration.
Looking back, I cannot fathom why. It wasn’t a stance I overtly planned. It just happened. Having a nursing background, I could hardly plead ignorance of our adversary. Only later, would I understand, it was that very knowledge that hindered me. I just couldn’t attach that decrepit label, to my robust, jovial, lovely husband. The awful entirety of Alzheimer’s, now flushed out from behind dismissals and denials simply defied acknowledgement.
There was no hiding-place beneath my muted volume though. The diagnosis was still there, intolerably visible in my mind’s eye. I couldn’t erase it; it dominated my every thought. But my aching-heart stubbornly refused to allow my lips to form the actual Alzheimer’s word.
Like cancer before it (AKA the Big C) Alzheimer’s generates much fear and trepidation. Both singular nouns, closely allied with multiple fearful adjectives. While the prognosis for many cancer patients has significantly improved, lessening the sting for some, this is unfortunately not the case for Alzheimer’s.
A diagnosis of Alzheimer’s still feels bleak. Like someone has taken a big permanent-marker and struck thick black crosses through whole-sections of your life.
Know your enemy so the adage goes but knowledge is not a shield, it does not render you infallible. And, anyway, I was already familiar with Alzheimer’s. Starting as a sixteen-year-old auxiliary nurse, I worked for several decades in care-environments, including nursing-homes, rest-homes and hospital wards.
On countless shifts, caring for the elderly, I frequently encountered the various shades of dementia. I wrote-up its manifestations in numerous daily-reports. I charted medications, assisted with bathing and toileting and dodged many a well-aimed walking stick.
But I was young, fit and healthy then and old-age was a destination so remote I could barely see it. At the end of my shift I could step out of the door, with vigorous confidence, leaving behind the endearing oddities of aging until I was next on-duty.
This blithely-acquired knowledge now handicapped me. The view-ahead was far too clear. This wasn’t a job now, it was up close and personal. The particularities of age had become too familiar and, close-up, I could see they had barbs.
I was only grateful Ray did not have the same dementia route-map scorched onto his mind’s-eye. I certainly wasn’t going to enlighten him.
In the days and weeks following Ray’s dementia diagnosis, I empathised so strongly with that rabbit frozen in the headlight’s beam. The consultant’s words would replay in my head immobilising me with a rush of ice-cold panic, fear and disbelief; a pattern that stubbornly persisted, disarming me at irregular intervals. The harder I tried not to think about unthinkable things, the more the thoughts and images taunted me.
Ray’s condition, whatever I chose to call it, or not call it, was now an irreducible truth. I couldn’t brush it to one side, as I had when it was mere suspicion. This was real. It was there, with us and had been for some time. While we were gaily making plans for the future, dementia, the dreaded affliction with the initial A, was comfortably established, well before we caught even the faintest of whiffs to alert us of its presence.
We had entered the consultant’s surgery with guarded aplomb and left with hardened recognition. And, in the tectonic months to follow I would find that being aware of something is not nearly the same as accepting it.
Sitting in the café, that day, waiting for our breakfasts, Ray and I clutched hands across the table, holding on tightly to each other, amidst a hurricane of realisation. We managed to talk benign, surface-stuff chatting about the news of the day, shopping-items we needed to pick up, the pictures on the wall; anything but the diagnosis we had just heard. Neither of us had any immediate desire to pick up that particular thread.
Joining in our deceptively perky small-talk, the waitress who took our order would have had no inkling of the devastation wedged silently between us. Detached conversation tumbled from my mouth, while the fearsome spin of thoughts in my head gathered momentum.
Our breakfasts arrived. The eggs lightly steaming with bright yellow-yolks, the bacon crisply mouth-watering, warm toast and fresh butter. It all looked wonderful. And I mechanically ate it but, if anyone had asked, I couldn’t have honestly said whether it tasted as good as it looked. Somewhere between my eyes and my mouth the food lost its taste and the various breakfast items all melded into one indistinct flavour, I elected to cheerfully swallow my way through, whether I wanted to or not.
On a subdued journey home, both Ray and I were lost in desolate thought. The dual-carriageway, buzzing with traffic, made the silence in the car even more distinctive.
As we passed a nursing home, Ray pointed it out,
‘I suppose I should book my place there.’ He said, in humourless jest.
Glancing from retirement home placard, then back to Ray, I was adamant in my response,
‘Let’s get one thing clear, that’s not happening,’
‘Whatever we face, we face together,’
‘So, get that idea out of your head.’
Approaching home, I realised family members, wondering how the consultation had gone, would be waiting for an update. I really didn’t want to talk about it, not yet. We hadn’t digested the indigestible ourselves yet; how could we possibly serve it up to others?
Wassap messaging may not be the best vehicle for conveying bad news but it has the advantage of being quick, easy and able to reach several people at once.
In the car on the way home, I had thought about what I should say, to who and when. Later that day, I began tapping out the message I would send, for now, only to immediate family and friends. Backspacing several times, I erased far more than I typed, eventually leaving it at:
‘Sorry, not up to talking,’
‘Ray diagnosed with dementia-Alzheimer’s.’
‘Will talk more when able to. xx’
A little abrupt and choppy maybe but it side-stepped awkward dialogue, when arms-length communication was all I could manage.
As walking-wounded we limped through the rest of the day. With a student house-guest at the time, we had to maintain a veneer of normality. I cooked dinner and set the table as usual, even managing light dinner conversation, when all I really wanted to do was crawl under the duvet and hide. I didn’t want to cook, talk or do anything but, with my body on remote-control in my mind’s absence, I did.
By the time we kissed each other goodnight, Ray and I were both dazed and drained. In the darkness I let the reins drop on thoughts I had harnessed to the secluded corners of my mind, during the day. The sleep I so longed for did not come easily.
Somewhere in the early morning hours though, I finally fell into fitful sleep; the kind that has you waking up more, rather than less exhausted.
Tomorrow, our first fully-conscious day, of dementia diagnosis loomed and I was in no hurry to greet it.