Say Hello to Dementia

https://www.flickr.com/photos/vinothchandar/15009140647/in/photolist-oSiLB2-5C7pyn-o14JYF-GYhC7P-9KdurX-8X8jNa-jnwVt7-aZapNk-6tB9M4-8uxVAh-4uxd52-dNHHtJ-cH1vfG-YjJCuP-rf1Vtf-5xfkJ-4FqKWn-3eQtzD-8jti2q-coR6LL-6e6XYS-a8vEBr-2cdcJau-8GGgSH-z8TQe-6GbzH-8kE3mA-U3F4Gu-95ZRet-bKJNR2-bXGm2Q-Mke9X-WsEgJ-e3nyzS-9oF3zY-2tbYcT-5ZnW9Q-2TuBh-6cUbjW-mEUQ6H-LG5dv-3jo3CE-6JWdsk-6ptnEz-yhSWK-nWpa-5Vbv7o-gZsLyS-aW6d4Z-6QpNqF
pic: Vinoth Chandar

Looking over an old blog, I found some posts I made during a visit to London. This was after my father had died, while Mum was still living at home, alone. October 2004.

Doctors, relatives, carers all use words like “memory loss”, “confusion”, as if an anodyne label on what is happening to her makes it somehow less horrid than it is. It wasn’t until I opened her Care Plan that I suddenly met the word DEMENTIA spelled out in capital letters. 

This “confusion” over what exactly is wrong with her allows people to pigeonhole her actions and behaviour according to their own needs rather than hers. For example, the care plan shows that her carer, who is supposed to drop in before ten each morning to make sure she has eaten breakfast and taken her meds, has been arriving later and later, until now she doesn’t show up till after 11.30.

It clearly states, in the comment column some weeks back, “visits must commence before ten.” Yet when I challenge the carer on this, she tells me she can’t come earlier as she has another client at that time, and she OK’d the change with Mum. Whose care plan clearly states DEMENTIA. 

Mum, of course, has no memory of this event, if indeed it ever happened. She resents having strangers in her house and doesn’t listen to anything the carer says – she just makes the appropriate responses while she waits for her to leave. 

There can be nothing new in Mum’s world. Her television broke down after 20 years, yet each time she uses her new one, which she’s now had for over a month, she cannot remember how it works. Ditto the washing machine – each day she stares at it as if willing it to work, but cannot remember how it works, and when she finally presses the right button, is convinced the machine is broken, because it takes longer than the old one, and sounds different. 

Yet when I suggest she write down the instructions and tape them to the TV and the washer to remind her, she goes silent. My sister says she did exactly that for her, but they vanished within a day.

In one of the lucid intervals, I press Mum again: Write things down. Remember what the doctor said, write things down. Keep a diary with you and write down who comes and when, when your appointments are – and keep simple instructions on the washer and the telly. 

“But folk’ll think I’m going daft!!” 

I can’t bring myself to say: Sorry Mum, but you are – and they all know it anyway. 

Some days, some hours, are better than others, and it’s possible to have something resembling a normal conversation. These are times to watch for, because you can press her to accept a greater level of care. And these conversations she remembers, for the most part. 

The house shows evidence of neglect. It isn’t particularly clean. A drain in the back yard was blocked and flooding the patio over which mother must walk to fill the dustbin. And a freezing winter is forecast. I clean the drain, but it seems to have been that way for a long time. Mother hasn’t noticed, and my sister, who usually comes only after dark, hasn’t either. 

All the kitchen appliances are grubby and fingermarked, and the floor is sticky. There are cobwebs in all the corners of the rooms. The belt driving the brushes on the vacuum cleaner is broken, making it nearly useless: no-one has noticed that, either.

But mother doesn’t want ‘just anybody’ messing with her things. She’s ‘managed all right up to now’, she ‘doesn’t like some of the things you’re trying to make me do’, she ‘wishes I’d go home and leave her alone.’ She says she’ll be alright when she gets over her cold, stop fussing, 

At other times she says, “It was alright when you were looking after me,” even though I haven’t been here for four years. And I have never looked after her. When the psychiatrist at the local hospital, assessing the progress of her memory loss, asked her if she lived with my sister, she said yes. 

Much of the time our conversation goes round small loops. You have to imagine short pause – no more than a minute or so – between each exchange. It’s like a Pinter play, minus the meaning. 

“My carer didn’t come this morning.” 

Yes she did Mum – I was here – and look, it’s in the book. 

“When’s that woman coming?”

She’s been. 

“No she hasn’t. I haven’t had my pills yet – she’s supposed to make me take my pills.” 

You had your pills – look at your dose box. 

“What day is it today?”

You’ve got a newspaper in your hand – look it up. 

“She’s late this morning.” 

She just left. 

“I didn’t get my visit today.”

Yes you did. 

“I haven’t had anything to eat yet.”

You had breakfast an hour ago. 

“Are you making breakfast?”

You had it.

 “Did I?”

And on and on, the same, twenty, thirty times.

Tomorrow morning she’ll say she didn’t eat anything all day. 

Yesterday I popped out for some shopping, returning at four in the afternoon. She woke with a start, having fallen asleep in front of the TV. She was convinced it was four am and she’d slept there all night. 

But she is capable of focussing, albeit briefly, if the issue is important to her. After several attempts to get her to accept cleaning help, I finally said, well Mum, you could always go and live somewhere where all these things, like cleaning, taking pills and so on, are done for you. 

“I am not going into a home! They all sit round staring at the walls and smelling of wee!” 

So let us get you all the help you need to stay here – it’s obvious you can’t manage on your own. 

“It’s not nice to be told you’ve got a dirty house. Is it really? It’s only while I’ve had this cold, it’s got on top of me a bit.”

Mother, from what I’ve been cleaning up, it’s obvious this has been happening for months. We’re trying to get you the help you need to stay here. 

“Yes, and I don’t like some of the things you’re trying to make me do!” 

This is one conversation that sticks, is remembered, and returned to. Eventually she agrees, after three days of coming back to it, trying to think up objections, to let me arrange something. 

“But if I don’t like ‘em, they’re getting their marching orders!”

Naturally, she dismissed them all. Not long after, my sister, with immense difficulty, secured Mum a place in a great care home, where she lived for several years.

About the author

Veteran gay writer and speaker, Doug was one of the founders of the UKs pioneering GLBTI newspaper Gay News (1972) , and of the second, Gay Week, and is a former Features Editor of Him International. He presented news and current affairs on JOY 94.9 FM Melbourne for more than ten years. "Doug is revered, feared and reviled in equal quantities, at times dividing people with his journalistic wrath. Yet there is no doubt this grandpa-esque bear keeps everyone abreast of anything and everything LGBT across the globe." (Daniel Witthaus, "Beyond Priscilla", Clouds of Magellan, Melbourne, 2014)