Dementia: On The Radio

Last week, while minding my own business and trying to get some work done, I overheard my regular lunchtime companion, Jeremy Vine talk about how his next radio guest was a lady called Wendy. She had been diagnosed with early on-set Alzheimer’s in her late 50’s, a few years earlier and had just written a book. I texted the show:

My mother was diagnosed with early on-set dementia at 64. I am truly shocked at the lack of support and how you have to fight for every tiny bit of help. As a society, we need to do better.

I then opened the biscuit tin and carried on with my work, Jeremy’s dulcet tones in the background. I had one ear open listening to the very brave and articulate Wendy, who is living extremely well with Alzheimer’s. She explained that when she was initially diagnosed, her friends seemed to stay away. It was as if all they could focus on was the inevitable end to her journey and she needed them to understand that there was a middle. A middle, in which she planned to live as well and as independently as possible.

My phone rang. A withheld number.

“Is that Sarah?”

“Ummm, Yes,” I replied. Expecting to be asked if I’d recently had an accident or wanted a website.

“I’m calling from the Jeremy Vine show, could we put you on air to talk to Jeremy about your mum?”

I couldn’t really say no, could I?

A few minutes of listening to Jeremy continue to talk to the very lovely Wendy and then he went to another caller. The man explained he had early on-set dementia due to a brain injury from years earlier.  I was jolted from his very interesting and heart-breaking story, by the show’s producer.

“Sarah, we’re coming to you next. Is that okay?”

“Ummmmm!” I replied. But, he’d already gone.

I have no memory of what I said. I do remember talking fast in case celebrated journalist Jeremy Vine had the nerve to interrupt me on a topic I am extremely passionate about. I remember telling him that my mother used to see men around the house; men she thought were wanting to ………. and then I realised I was on the radio with millions of people listening and I was about to say the word “rape.” I suddenly had a panic. Were  you allowed to say “rape” on lunchtime radio? Were children listening? Was I about to make a massive faux pas in front of the nation? I had no choice but to keep going and at the last second I switched “rape her” to “do nasty things to her.”

Of course, now I am not in a brain fog and slightly overwhelmed by my chat with Mr V, I know that I could have said “rape” and it wouldn’t have been a problem. It’s not like I was going to drop the F bomb!

I called my father an hour or so later and told him I’d been on the radio. He missed me apparently, had taken the dog out for an hour just as the segment on dementia had started. I was quite relieved.

Half an hour passed. He called me back:

“I just realised that I heard a chap talking about a brain injury and how that led to his early on-set dementia,” Dad told me. He sounded a bit over-excited and was laughing.

“Yes, it was a sad story,” I emphasised ‘sad’, alarmed slightly that Dad was finding this so funny. “I was on just after him, Dad. You must have just missed me.”

“Well, I had to go back in to get my keys and I heard a lady talking about how her mum used to see lots of men in the house,” he could hardly get his words out, he was laughing so much. “And, I thought that’s just like Jane!”

No shit!

“THAT WAS ME, DAD!” I laughed. “Did you not recognise my voice, or even the fact it was Sarah, from Harrogate?”

He didn’t.

So, my moment of fame, wasn’t actually so famous.

I found myself reflecting on my experience throughout the afternoon. Something Wendy, (Jeremy’s guest) had said seemed to stick in my brain.

The middle.

I’d jotted it down as I was nervously waiting to go on air. I’d doodled around it; zig zags and spiky patterns as I contemplated our “middle”. Or rather, our lack of any middle.

Mum seemed to go from being forgetful and lacking in confidence to having regular and violent hallucinations and then to needing full time care with very little in between. We didn’t seem to ever have the opportunity to just catch our breath.

It was a fast and furious ride. Exhausting and shocking for us all.

And it must have been terrifying for my poor mum.

As I picked up the kids from school, I told them they’d missed me on Radio 2, talking to Jeremy Vine. Archie was disgusted that I’d not told him earlier as, apparently his whole class would have been allowed to listen. “Thank f**k!” was the first thought that came to mind. The second was, “I didn’t have time, Arch! They called me and I was on air within a few minutes.”

This sparked a conversation about Granny, as they asked what I had talked about. I was honest and told them I couldn’t remember a lot of it, but I do remember telling the nation that Granny used to see men around the house.

“It’s probably easier now isn’t is?” Archie asked.

“Yes,” I told him. “I suppose it is easier.”

And, it is. The fact their granny no longer has lucid moments is a blessing, because she is unaware of how poorly she is. She is also not constantly terrified, seeing deceit and evil in everything and everyone who loves her.

“It’s probably sadder now though,” my 11-year old boy said.

And there it is. Our middle was so traumatic we didn’t know it was the middle. I remember thinking on a particularly difficult day, that it would be easier if she simply succumbed to the disease and was lost to us, rather than the constant upset of having her terrified and paranoid.

And, it is easier. It is less stressful. The ride is calmer and less bumpy. But it is still dark.

And it is certainly sadder.

Miss you, Mum x