Misperceptions

Sometime in May this year our local newspaper published a series of articles about dementia and its impact on people. While I appreciate the effort to tell the story of dementia, I think the headline and subtitle are ghastly.

The snapshot below gives the titles of the various stories in the special report, which are interesting and not sensationalised. Unfortunately these reports are marked “premium” which means they remain behind a paywall for newspaper subscribers only.

So the problem is this – our premier newspaper does an admirable write-up of real life families and how they cope with dementia. However the news editor then hides the series from the larger public who could benefit from it, by marking the series Premium. And to top it off, the editor decides to sensationalise the topic by using words and phrases such as “monster in his head”, “stolen his mind”. Believe me, these words are not used in the articles.

Dementia is an awful disease, however, the person with dementia is still present, there is no “monster” taking over. We have to recognise, acknowledge and respect the person with dementia and speak to him or her directly, with love.

Shrinking Brain

Some years before my mother was diagnosed with dementia, there was a brain scan. I thought there was a little too much space in there, the brain pulled further away from the skull, the brain folds too deep and the gaps too wide.

I sought a friend who was supposed to know about these things and asked my questions. My mother is slowing down, she seems less sharp. Does this scan indicate early dementia changes, perhaps?

No, no, he said. You cannot tell dementia from a brain scan. People can have less brain matter and still function normally. On the other hand, there can be dementia with a normal brain scan.

Surely this scan of a shrinking brain is consistent with my experience that she is slowing down? I asked.

No, he said. This scan looks normal to me. I cannot agree that there is any brain shrinkage.

Neither of us was wrong. I already knew she was changing and sensed the onset of dementia. I wanted the brain scan to support what I felt was happening. However, the scan might have passed as normal then, and it is true many older persons will have more space in their skills without having any symptoms of dementia.

Q and A

Every now and then we ask Mom a question just to see what she would say…

How many boyfriends do you have?

She held up three fingers. Unfortunately for us voyeurs she didn’t elaborate.

Another day she was a little more talkative. I asked her “How are you?”

She was in a combative mood, “Do you want me to tell you what you have to do?” She laughed, and then became stern. When asked to continue, she became wordless and couldn’t elaborate.

Often she is lost for words. “How are you today?” may elicit a shake of the head. But she always smiles.

What do you mean by shaking your head? Are you good or not good?

I’m good, she will say.

What have you been doing?

I’ve been reading. I read the average, she said, waving at where the newspaper is…