There is a common assumption that Alzheimer’s disease – and the dementia which characterises it – is mostly about loss of memory.
In Luke Adamson’s fine play One Last Waltz, the central character Alice eventually admits: “I need to see someone about my memory.”
Our consultant is attached to the “Lewisham Memory Service” as if they could serve us up some extra memory like a phone shop. If only! The “Dementia Department” would be a more accurate, if rather less tactful, title.
Everyone you speak to has some experience of Alzheimer’s and it’s nearly always memory loss they want to tell you about.
Yes of course My Loved One has memory problems. I have to tell him simple things such as it’s Tuesday and the cleaner will be here at 10.00am over and over again. He often struggles for words too, starting a sentence only to find the key word has gone AWOL before he gets to it. If we’re seeing people we haven’t seen for a while I have to rehearse names with him carefully in advance.
But memory loss is only a tiny part of what life with Ms Alzheimer’s actually means. Here, in no particular order, are ten other symptoms we’re dealing with daily.
1.MLO is shaky on his feet and tends to shuffle because it feels safer. He walks at about half my speed. This, of course, has the effect of making him look quite elderly and someone almost always leaps to his or her feet to allow him to sit down on trains and buses – an indicator of physical frailty clearly visible to strangers.
2.Keys are a problem. If he tries to let himself in and out of the house he can’t put the key in the slot and turn it. He also has problems with the window locks. The other day he noticed that I’d accidentally left a car window open and wanted to close it. I said “It’s an electronic window you’ll have to turn the engine on” but he couldn’t do that either – and this, bear in mind, is a man who was regularly driving his own car less than a year ago.
3.MLO tires very quickly and is often sleepy. If we go, for example, to a museum or exhibition he flags and needs to sit down for a break in less than an hour. And he nods off over his book after dinner almost every night – now, I know there are plenty of people who do this all their lives but in this case it’s new.
4.He feels the cold in a way he used not too. Like his father, who died in 2014, MLO now wears thick pullovers almost all the time, sports a thick coat and woolly hat to go out and we argue about the window in the bedroom which I want open and he doesn’t.
5.He is very insecure when going down stairs. At home he clings tightly to the banister rail and we have a grab rail at the turn of the staircase. When out, he is very slow, ponderous and careful – especially in busy railway stations where there tends to be loads of steps unnoticed by the rest of us who are untroubled by them.
6.Sense of direction has gone. If, for example, standing outside Victoria station I tell MLO we’re heading north for Buckingham Place towards St James’s Park, a route we’ve walked hundreds of times, I see a blank look because he has no idea what I’m talking about. It’s the same if I come in from somewhere and tell him where I’ve been. He used, until recently, to be able to meet me in pre-arranged places – unthinkable now.
7.Spatial awareness is dwindling fast too. That’s partly why he can’t put things away accurately in the kitchen cupboards – he can’t visualise the space inside. It’s also why he says with a shudder “I wouldn’t want to do that now” when, for example, I back into a tight parking space.
8.Food tastes have changed – as I described recently. He now eats, with enjoyment, lots of foods he used to dislike with passion.
9.MLO’s personality is different now. Thank goodness there is no aggression. Instead we’ve all (sons and I) noticed a new compliance. Most of the time this formerly stubborn, pretty feisty man simply does what we tell him to without argument or protest. And that makes us a bit sad.
10.He can’t do paper work. A professional administrator, he was wont to have every file orderly and up to date. For years, MLO did all the administration for my business Susan Elkin Ltd for example. He was extremely efficient. Today he is beaten by the simplest clerical task and we’ve had to take it almost all away from him – although he did manage to renew the National Trust membership recently. I try to delegate simple discrete tasks to him on the grounds that it’s important that he does what he can.
Memory loss? Yes. And the rest.