2 March 2017

Mum the Magician

Over the last few years, I've done a lot of research on dementia, both to help me understand Mum's behaviour better and to find ways to address the challenges that the condition presents. I'm by no means an expert, but have picked up some key points.

The first is that many different diseases cause dementia, of which Alzheimer's is just one, and it's also possible to have 'mixed dementia' - about 10% of cases fall into this category. In fact, although I wrote last time that Mum has Alzheimer's, she also has vascular dementia, and this is the most common combination.

The second is that dementia is about much more than just memory loss: a whole host of other issues can arise, even in the early stages, when, for example, there may be difficulties in reasoning, planning and organising. As the condition progresses, problems include changes to mood, personality and sleep patterns, incontinence, and the risk of wandering and getting lost. In the final stages, there is complete loss of awareness and a significant decrease in physical abilities - being unable to walk, sit or even swallow. 

It can be hard to determine whether an individual is at the mild, moderate or severe stage, as there is often overlap between them. If the diagnosis is mixed dementia, that complicates things still further - for instance, memory loss is not usually one of the early symptoms of vascular dementia. My non-expert view is that Mum is just bordering the moderate stage.

The third is that each person's experience of dementia is quite different, both in terms of how quickly it progresses and the ways in which it manifests. Over the last 12-18 months, Dad has also been getting more confused and has had short-term memory problems. It is already apparent, however, that his experience is different to Mum's, in that he is aware of, and sometimes becomes upset about, these issues. Mum mostly tootles along in blissful ignorance, with only the occasional comment that she feels she's having a 'confused' day.

The most obvious signs of Mum's dementia are that she often tells us the same things over and over again in a short space of time, or repeatedly asks the same question. While this repetitiveness can be trying, what is even more frustrating to deal with is her apparent ability to make things vanish. Moving and hiding things, or completely losing them, is common in dementia, but Mum seems to have got this down to a fine art.

On one recent visit, I arrived just after the shopping had been delivered by one of their carers, so I helped put it away. I stashed one loaf of bread in the dedicated wooden bin and, due to lack of space, put the second next to it. An hour or so later, when I came to make lunch, this second one had vanished.

'Where's that loaf that I left by the bread bin gone?' I asked Mum, somewhat pointlessly.

'Oh, I don't know, love,' she said, all wide-eyed innocence. 

I hunted for it through every cupboard and drawer in the room, but, to this day, I don't know where it went, as I opted not to search the rest of the house. It will probably turn up at the back of the airing cupboard - it was a large family-sized loaf, so not that easy to conceal.

The next occasion I visited was when my sister, Alison, took Dad to hospital as a day patient for a cataract operation. I stayed at home with Mum and drafted her in to help me with some domestic chores, in a bid to distract her from Dad's absence.

I decided that we should first work our way around the house, room by room, identifying items for the wash and putting away anything clean that was in the wrong place - such as vests on the vegetable rack (it has happened).

Unfortunately, I made the mistake of taking my eyes off a clean pillow case that I'd found, while I tried to determine the degree of dirtiness of one of Mum's tee shirts. I turned around to pick up the pillow case, only to find it had disappeared.

'Mum, where's that pillow case gone?' I asked, already knowing the answer.

'Oh, I don't know, love,' she replied, though more bemused than innocent this time. 'I had it in my hand a minute ago.' 

Image courtesy of Pixababy
She may have admitted to being the culprit on this occasion, but, again, I have yet to find the missing case. With this new superpower, Mum could give David Blaine a run for his money. Never mind making the Statue of Liberty vanish, if he stood still long enough, she'd make him disappear.

Meanwhile, Alison has been engaged in The Battle of the Brown Bin for weeks now.

Understandably, Mum has great difficulty knowing which rubbish to put in which bin - a challenge even for those of us without dementia these days. The council had already taken away the recycling bin, at our request, but that still left the ordinary black one and the brown one for garden waste, which their gardener uses.

Mum kept putting household rubbish in the brown bin, so Alison turned it around, to make it harder to open, and put a 'Do not use' sign on it - after first disposing of the pile of peas at the bottom of it. A week or so later, she found the sign in an empty plant pot and the bin being used for general rubbish again.

She moved it further away, around the corner next to the shed...only to return a few days later to find that, although it was empty, it was once more beside the black bin. As of two days ago, she had put it back by the shed and we wait with bated breath to see where it turns up next.

Incidents such as this are an example of the kind of strategising you have to do to help somebody with dementia, whose behaviour can often be illogical and erratic. For the last six months, we've wracked our brains time and again to come up with solutions to far greater problems, such as Mum overdosing on her medication.

The dementia websites I've researched have loads of great ideas, but these don't work with every individual, so you have to be immensely creative and always take into account your loved one's personality. Mum was never particularly organised and has always been quite stubborn. We are, in the end, still dealing with Mum the person as much as her dementia!

* * *

The Alzheimer's Society is a great resource for all kinds of dementia and Alzheimer's Research UK is also a very helpful organisation.