Tuesday, 13 January 2009


We all have certain personal standards.

The lives of folk with dementia change, significantly, as the dementia progresses. What's important shifts. As it takes its course, there's an increasing emphasis on the here and now (as memory of the past and awareness/planning of the future becomes increasingly impaired). As well as living more in the moment, there's also usually a shift in perspective of what's of value. Company with partners usually rate highly. Material possessions usually don't.

To most folk, their presentation matters a lot. Presentation in a broad sense. To some folk it's their smart, coordinated clothes and accessories. One lady was devoted to her hats and shoes and earrings and necklaces/pendants which all matched, it was part of how she was and thus (to her) part of who she was, so mattered. Lots of folk don't have interest in their clothes (and aren't at all concerned about being the height of this season's fashion) but want to be polite and dignified when out and about. Many folk want to look smart, to be shaved and kempt.

What differs is mostly the matter of degree. Most folk don't want to smell and have poor hygiene. But whether they want a bath every day or once a week, that varies from person to person. If you've a choice this afternoon, would you rather home care spent half an hour tidying up the things on the floor that you pulled out, when looking for your "lost" glasses, or half an hour dusting and hoovering your stairs? Importance of tidiness and cleanliness again varies from person to person.

Let's take a lady. She lives in a lovely bungalow in a lovely neighbourhood with a devoted husband of 52 years. She loved going to the local church every week, singing there, going to the local womens' group (when she sang, painted watercolours and was active in the gardening discussions/trips/activities) and going on holiday to a European country several times a year with her husband to learn the language, enjoy the food and paint the stunning scenery. She loved to look stylish, enjoying bright, bold clothes.

She has severe dementia.

Now, she can't really speak, but generates mumbled dysarthric words that seldom make sense to anyone but her. She still sings, though, and lights up when music's on. She's stopped smoking a couple months ago, despite being a 40 a day woman, and when her husband offered her a cigarette after a meal out she took it and held it, looking thoroughly bemused and unaware what to do with it. She's poor concentration, being unable to sit still for more than 10 minutes before she want to be up and active, doing something else. Whether it's watching TV, in a queue in the shops with her husband, in a local cafe, in the bath, whereever. 10 minutes, then time for something else.

Meal times are a problem, through this. 10 minutes at the table and she's up, leaving to potter in their kitchen. Her husband is distraught. "She's always sat down for dinner, this just isn't like her, what can we do about it?"
"Well," we say, "why not give her sandwiches or finger foods she can hold and walk around with, snacking, as she's wandering around her kitchen or garden?"
"What?!" He looks at us as if we suggested murder. "No! She'd never, never want that!"
"But she's hungry, she's losing weight, she needs sustenance, her feeling of appetite/satiety have changed, it's sensible to try to have a little food offered often."
Head. Brick wall.

They have a low sink. She has urinated (succesfully) in it, Lord knows how. She can't manage the toilet, since the seat's always down and she doesn't recognise it as a toilet. But urinating in the sink, that's something her husband "knows is wrong" so covers it with a towel. So she just had to void urine on the carpet. "You've got to stop her doing that!"

At night time she gets tired at different hours so will retire to bed at different times. Sometimes she's washed out and just wants to snuggle down and sleep, so does so. Doesn't occur to her to change from day clothes to night atire. Husband is mortified, so rouses her to change to night clothes. She resists, seeking slumber. He knows, "She can't go to sleep like that!"

There seems to be a time when person centred care has to be considered over what our own personal standards are (and even over what our partner's personal standards used to be). But that's not easy. Stormy times ahead, methinks.

1 comment:

Calavera said...

That's so sad. I can't even imagine what it must be like for both involved. This is kind of also the reason why I'm not liking neurology that much - it's just such a harsh reality there for you to see, which we all prefer to not think about. I just couldn't see that sort of thing day in, day out.