Category Archives: Alzheimers

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

CARE HOME DIARIES PART 4: Pictures on a Bedroom Wall

We can now see, read and hear about dementia more than ever before. But what does it really ‘look like’?

Edith stares up from the pillow as myself and another care assistant get her ready for bed. Her expression is blank and it’s difficult to know just how much she is actually aware of. The latter stages of Alzheimers have rendered Edith virtually immobile, and she has almost no ability to communicate beyond the facial expressions and eye movements only time and familiarity can translate.

Edith is not entirely silent, a fact I only found shortly after starting  at Hill View. One morning, apropos absolutely nothing, Edith lifted her head off the pillow, turned, and looked straight at my colleague Karen. “Get off me, you four-eyed bitch” she hissed. She then turned her gaze back at the ceiling, dropped her head back to the pillow and resumed her usual blank expression. This scared the crap out of me, but Karen simply laughed. “Okay my darling, that’s the last time I wear my specs to work.”

Edith’s room and ceiling are covered in photographs. There is Edith with her husband and family. Edith as the proud hat-wearing Mum at her daughter’s wedding. Edith as a fairly mature looking student in mortar board and gown receiving a degree. And on her chest of drawers sits a particularly striking black and white portrait of her as a young nurse. It looks like one of those old publicity shots for a Hollywood starlet. She was clearly a very striking young woman.

Hill View has given me some eye-burning images, but most vivid of all are those photos of residents long, or not so long, before they were struck by dementia. I try to equate those happy, animated faces with the staring eyes and haunted features of the person sat in front of me as I help them comb their hair or wash their face.

For this is a slow-burning, degenerative and ultimately terminal condition that will eventually kill the sufferer if other conditions don’t get there first. Early stage dementia allows sufferers some degree of independence and dignity. The latter stages, which can be many years down the line if the person is physically fit and well, require more and more supervision and support for people such as Edith, who needs help with just about every aspect of human existence. The expensively photographed young woman in the photo is now being fed puréed food and having her pads changed several times a day. Alzheimers has destroyed her..

Unlike Edith, Margaret doesn’t spend hours staring quietly into space. She can cover a hundred metres not very much slower than Ussain Bolt. Margaret still has the presence of the head teacher she once was, and talks ten to the dozen. She doesn’t always make sense but she makes use of a wide and educated vocabulary which sometimes stops me dead in my tracks wondering how words like ‘idiosyncrasy’ can still come from the mouth of someone with dementia as advanced as hers. Margaret will often come running up to me as if to tell me the most brilliant news I’ve ever heard, or to make some random statement which makes sense to nobody but her. But quicker than I can fashion an answer she’s staring through me as if I’m air. She then scurries off for another conversation with somebody else.

Margaret has pictures on her wall as well. Most of hers are more recent than Edith’s. She is retired and visiting far flung places with her late husband, a university lecturer. They are sipping cocktails on a hotel balcony overlooking the Med. In another photo, Margaret is proudly cradling a grandaughter. She looks eerily similar to how she looks now and is even wearing the same clothes. The Margaret in the snaps does not have a care assistant helping her put on her shoes.

Frank has a memory span of less than a minute. As a former chemical engineer he’s a clever man with a vast knowledge of local angling and science. He walks slowly with a frame but if you remind him to lift his feet “just like Neil Armstrong on the moon” he can speed up considerably. Frank has a quick wit. “By all means remove my jumper, young man, but please leave my head where it is” says Frank as we help him get undressed for a bath. His wife lives locally and phones him every evening. Frank is never really sure who she is but speaks to her as if he knows he ought to. 

His son lives far away but sends a word processed letter every week, often with an old photo or two scanned in. Frank will read the letter as if pretending to make sense of it’s contents, but enjoys staff reading his letters aloud to him. Every so often we’ll read out the name of a grandaughter or daughter-in-law and explain to Frank who this is. But the photos his son includes need no explanation. Frank can put names to faces of seemingly anyone from his past. A next door neighbour. A work colleague. The vice-secretary of the local angling association circa 1953.

Dementia is a convenient term but lacks descriptive power. As we can see from just a few brief stories, diagnoses such as Alzheimers have certain key features that exist on a long continuum stretching from slight memory loss and a little cognitive impairment to more or less wholesale destruction of the human being whose brain it invades. 

And every so often those of us paid to wash, dress and feed people no longer capable of doing it for themselves need to stop and look at the person in front of them. Because for every empty, burnt out shell of a human being left behind by dementia is a picture on a wall. A window through which we glimpse a moment in time of the real Michaels, Margarets and Ediths who lived, loved, brought up children, sipped cocktails, got degrees, posed with the vice-secretary of the angling society and wore posh hats at weddings.

Connor Kinsella
Lead Trainer, JCK Training

Next time: CARE HOME DIARIES PART 5: ‘Where have all the relatives gone?’