CARE HOME DIARIES PART 5: “I saw Mum. She didn’t see me”

I’ve blogged elsewhere about my Archers fetish.  I belong to a rather peculiar sub-group of ‘tune-in and tweet’ Archers fans spending seventy-five minutes every Sunday morning listening to the omnibus edition while tweeting affectionate mockery about everything from Bartleby the horse to Helen Archer’s organic yoghurt.

But the onset of 2014 brought one of those memorable moments when fiction genuinely touched real life and even the most acerbic of ‘tweetalongers’ paused briefly to dab at moist eyes with a sheet of kitchen roll.  But it wasn’t really the death of Jack Whoolley that had us shedding a tear or two. In truth, it was the story of Alzheimers disease and how dementia can kill even the brightest and strongest-willed among us long before the heart stops beating.

In a scene as beautifully written and acted as it was poignant, his wife Peggy visits her husband at The Laurels for what turns out to be the last time. By this stage Jack is in the final stages of what is in effect a terminal illness. Most sufferers will die from other conditions before Alzheimers itself can be listed as a cause of death, but by the time he dies Jack has clearly not been ‘alive’ in any real sense for several years. He no longer recognises Peggy, has lost the power of speech and shows little or no recognition of what is happening around him.

Those of us who know the real-life ferocity of end-stage dementia would recognise all too well a scene which is no less moving for it’s fictionality.  They would recognise Peggy’s attempts to sustain what is an entirely one-sided conversation with a husband who hasn’t spoken for several years and is almost certainly unaware of what is being said to him. They would be familiar with how Peggy reminds Jack of a funny story from the past, and how she notices the slightest of smiles from the corner of his mouth. Perhaps there is the slightest glimmer of awareness there just this once. Perhaps she imagines it.  In any case, she was just about to go but decides to sit down and spend just a little longer with her husband before she leaves.

As touching a drama as this was, these scenes are played out for real every day of the year. And for those of us who work with dementia, seeing friends and relatives struggling to connect with care home residents is a familiar, and sometimes slightly awkward reality.

Some listeners were a little perplexed that Peggy didn’t react more dramatically to that phone call from The Laurels.  But as she says herself: “Seeing Jack decline like he did, disappear in front of my eyes, it was awful… but it’s meant I had a lot of time to get used to the idea of losing him. Because really I lost him a long time ago.”

Thanks to a much greater awareness about dementia, most of us are now well enough informed to cite symptoms such as short-term memory loss or confusion as being fundamental to dementia. But for families of sufferers and those of us who work in the field, it’s the gradual deterioration of the all-round ‘human-ness’ of the person that is most striking. Dementia means the gradual inability to comprehend, to interact, or to hold anything but the simplest of conversations. At Jack’s stage of dementia, there is no conversation at all.

My colleagues and I at Hill View House* try our best to see even the most impaired of residents as real people who can hear and understand us as well as anyone else. In ‘Pictures on a Bedroom Wall‘ I wrote about the power of old photos** to allow staff like me to see the most disabled of our residents not as mute, immobile or vegetative, but as vibrant livers of life posing for holiday snaps and wearing fancy hats at weddings. To involve people at the end stages of dementia in choosing their clothes or deciding what they’d like for lunch isn’t easy. In some cases it isn’t possible at all.  But we try.

In The Archers it was that faintest flicker of a smile that tells Peggy she’s connected Jack with something resonant from the past. In real life it’s more likely to be a facial expression that says “you’ve forgotten to put sugar in my tea” or “pureed broccoli. Again?” It might even be an occasional “f*** off” after months of complete silence. Yes, that has happened.

But no matter how much and how well care home staff do care, there’s one thing we can’t affect. Some of our residents have visitors every day, or several times a week. Some have the odd visit from friends or children. And some have none at all.

There seems to be a fairly linear relationship between a residents cognitive ability and the amount of time they get from visitors.  Wives and husbands seem the best able to tolerate the ravages of what dementia has done to their loved ones, but for the most part we could plot on a graph how those least aware of other people and events are also the least likely to have contact with family and friends.

We staff frown upon the neglectful, ungrateful children who disappear from view once parents are safely dumped with us, only to pop up once again as soon as the popping of clogs seems imminent and an inheritance looms on the horizon.

In some cases this might well be true. But I suspect that for others the reluctance to visit is about something a little deeper. Perhaps the thought of sitting with a Mum or Dad or Nan or Grandad staring blankly, silently and unknowing into space is simply too painful to stomach after a lifetime of knowing them as the people who were once every bit as vibrant and alive as we are now. There’s always something else to do at weekends.

 

* If you haven’t read this blog before, Hill View House is a real care home with a made-up name. For obvious reasons.

** This now seems to have been adopted as good practice in NHS general hospitals. Thanks to @LauraDron for the link

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