Press ESC or click the X to close this window

The eyes have it

When I’m trying to assess – or get my head round – the helter-skelter speed of My Loved One’s decline, few things are more telling than the look in other people’s eyes. The people who see him frequently – me, the immediate family, carers and other regular callers – are well aware of the way the man we once knew is disappearing, almost literally (weight well south of nine stone) as we watch. But it’s only when MLO and I see someone we haven’t seen for a while that I notice that look of shocked, sympathetic horror and I’m reminded just how far things have really gone. When the friend who stays with us twice yearly for a couple of weeks, arrives next month for her summer residence, seven months since she was last here, I think she’ll be appalled.

Last weekend I played in the Hayes Symphony Orchestra summer concert in a church in West Wickham, Bromley – one of a number of musical events I’m involved in each year. Elder son Lucas, came for the weekend with his wonderfully practical, kind and helpful wife, Mrs W-E. Between them they have 40 years of library employment so they went into professional mode and put everything back in my office after its redecoration so I’m now better organised and  more orderly than I’ve ever been. Even more importantly they looked after MLO while I went to the Saturday afternoon rehearsal and then brought him over to the concert.

I’d arranged a wheelchair reservation and Lucas wheeled him in. As usual these days MLO was looking a bit irritable and slightly bemused. That habitual blank, middle distance stare into eternity is both sad and chilling. It seems right for him to have been there. After all he’s been attending musical performances I’ve been part of all the years we’ve been together, often in the past as a front of house volunteer. And Saturday’s was a pleasant concert by any standard. These days I’m pretty sure he neither knows or cares what’s going on although, as Lucas pointed out,  conventional concert behaviour is deeply programmed in. He sits quietly during the music and claps at the end. None of what MLO heard would have been new to him anyway. He’s known the very mainstream repertoire we played all his life. Besides I’ve dragged him along and seated him at the back where I can see him, for almost every rehearsal this term because that’s still just about OK and it saves me paying a carer. I suspect, however, that by the time the orchestra reconvenes in September taking him with me will no longer be an option.

Also at the concert were six members – three generations – of my extended family who live nearby. Two old friends, one of whom goes right back to our schooldays, came too. It’s a few months since we saw any of them in the flesh although a lot of Facebook-ing goes on. And most of them read these blogs.

I was very aware of the reactions – in eight different people –  when they looked at MLO, physically weak and frail in his wheelchair as well as being unable to string even one sensible sentence together. Each and every one of them, of course, made a point of going over to him and trying to engage with him because folks everywhere are generally extraordinarily kind and decent – and it’s taken me seven decades and a nasty disease to appreciate that fully.

MLO has known most of these eight people for many years. One was a bridesmaid at our wedding back in 1969. Yet I don’t think he had a clue who anyone was at all. When I went back to find my violin for the second half, Lucas was saying with a patient, slightly rueful grin: “You have two sons. I’m Lucas the elder one and this lovely lady next to me who cooked your lunch is my wife.” MLO just said “Really?” as if he were at a drinks party making polite conversation and getting bored with it.

The looks of pity say it all. Back at the car at the end of the concert Lucas was busy bodily lifting his father into the car (which I can’t do, of course, and have to make do with tortuous guided shuffling when I’m in charge) while I was chatting to the old schoolfriend and his wife a few feet away. Suddenly I could see what they were seeing: a very sick, emaciated, confused old man barely recognisable as the feisty, opinionated, active chap they used to know. Lucas actually thought there was a noticeable deterioration even in the 48 hours he and Daughter-in-Law were with us over the weekend.

On the day MLO was diagnosed – 29 April 2017 –  I came home from the appointment and sat at my PC thinking “Well, shall I? Or is ignorance bliss?”  Well, I’ve been fuelled by compulsive information gathering all my life – in the end it’s why I became a journalist – so, of course, for me, not knowing is not an option.  I Googled it.

The average life expectancy for an Alzheimer’s patient is four to eight years after diagnosis. Four years? Dream on. That would take us to 2021. Can you hear me laughing hollowly?. I suspect most of “my” concert groupies went home seriously wondering if they’d ever see him again.

Author information
Susan Elkin
Susan Elkin Susan Elkin is an education journalist, author and former secondary teacher of English. She was Education and Training Editor at The Stage from 2005 - 2016
More posts by Susan Elkin