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.
Lead Trainer, JCK Training
Next time: CARE HOME DIARIES PART 5: ‘Where have all the relatives gone?’