Category: Other Stuff

When Ron Husband started to forget things – dates, names, where he’d put things – it took a while for his family to realise that this was a different kind of forgetting. In fact, it was just the first sign of the dementia that gradually took him away from them. Now his illustrator son, Tony, has turned their story into a heartbreaking picture book unlike any other. The result is a profoundly poignant account that will strike a chord with so many familes touched by this cruellest of illnesses. Here we proudly publish it in full. -Huffington Post

Hi Dad … can we have a chat about your dementia … Can you remember how it started?
Dementia? Dementia, is that what I had … Ha ha … I had dementia and you ask if I remember how it started … Ha, that’s funny

Let me think… I mean, it’s not like it just starts like a cough or a toothache, it’s something that creeps up on you.Because when your mum died… I threw myself into things … I was very active in mind and body. I wasn’t going to sink under…

I loved painting … watercolours … I did my own Christmas card every year. People looked forward to them, you know. Course, I had my pets in every one. Tee hee.

I loved golf … I wasn’t that good, mind. I did enjoy the company, though, and the exercise … and I was the Seniors President, too.

I liked being involved in the community. I was a bit of a committee man: the golf club; Probis; the War Memorial Trust. I liked a debate, a bit of a fight if I’m honest

How about your great achievement? You know, your First World War project.
Aye? Oh yes, that was an achievement, wasn’t it … You mean researching all the lads from the town who died in the Great War. Great task, more like … phew!

But Dad, the mental strength it took to do all that research … You were relentless. Yes I know! It was hard, but someone had to do it. Someone had to chronicle all those lads who perished. Every single name is now in remembrance books, and I got the council to create a memorial garden. Proud of that.

I loved playing my piano … Boogie Woogie and blues … I played in bands in the Army, I was that good

I enjoyed a pint … especially with my lads talking about football, politics, music … you can’t beat a pint and a chat

And, of course, my dog, Lossie … my lovely best pal. Always there for me. Kept loneliness at the door. Oh Lossie.

But things began to change didn’t they. We noticed you weren’t the same but we couldn’t pin it down. It was just a … feeling we had.
Yes … things did change slowly … I mean we all
forget, and that’s the problem – when do you
realise it’s a different form of forgetting?
So how did it start for you Dad?
Just that, forgetting things, I suppose. Dates, names, appointments … daft things, important things. ‘What I’m on the tee in ten minutes? … bloody hell, no, of course I’d not forget. I’m on my way.’

I’d go out and leave the door open or I’d lock myself out. ‘Ron, your door!’

I left the tap running a number of times … flooded myself out, apparently.

And going out in my pyjama bottoms wasn’t the wisest move

The strange thing was, though … my distant memory cleared up. I could remember stories I’d long forgotten about my childhood

And my wartime experiences…Yes, you told us some, er … interesting stories

Do you remember the anxiety?
Yes. I didn’t like the post. It scared me, letters from people I didn’t know, all wanting money, the doctors, tax man. One said I owed £25,000!
It was from Reader’s Digest to say you were in the £25,000 draw. You didn’t win by the way

And I didn’t trust anyone, not even my family …
Er … especially your family.
‘Hi … it’s us.’ ‘Come to get my money, I bet. Well you’re not having it.’

Do you remember the ghost?There was one, I’m sure … I felt its presence
often. I’d put things down on the window ledge,
and then it would vanish. I’d find it days later in
the fridge or somewhere. It was very strange.

That’s when we decided to take you to the doctor … we were getting worried.
I didn’t want to go … got annoyed about it. All those questions, how was I supposed to remember all that? Ridiculous!

The results came back. Vascular dementia, apparently. The arteries in my brain were clogging up with calcium … and there was nothing they could do

And if hearing that wasn’t bad enough, I had my car taken off me. That was hard to take. My independence was being eroded bit by bit. I felt isolated, lost…

We had no choice, Dad. You were a liability on the roads.
‘Quick give me a hand … that old guy’s left his handbrake off!’

We contacted social services who, it must be said, were very good.
‘I’ve not seen my family in months, you know.’
‘They’re in the back room … they’ve been with you all day, love.’

Yes, and the carers got involved … They were fantastic, I loved their visits, so friendly and chatty. ‘I’ll just tidy up, then sit and have a chinwag. Here’s lunch for now.’

But when they went … I felt lost, lonely.
Oh I remember the phone calls, 40 or 50 a day, the same questions. ‘Hello … have I got to go to the doctors today?’ ‘We went this morning… I’m trying to work here, Dad …’ Then we’d feel guilty for being annoyed with you.

Do you remember the aliens, ha ha … I thought there were aliens flashing messages to me, so I sent them messages with my blinds in Morse code, Turned out they were car headlights on the road across the valley … dearie me.

There were people coming to my house all the time. I didn’t know half of them. Were they carers? Were they forgotten friends? They all seemed nice, and it was company. ‘Lovely paintings, mate. Worth a few quid, aye.

Yes Dad, that worried us. We knew people were calling in … and they weren’t all carers. And you couldn’t remember who they were.
‘OK mate … I’ll take this painting and get it valued for you.’

I remember a fire, I think … was there a fire?
Yes … you left a chip pan on … a lot of smoke, but not much damage and no one hurt. But it was a big warning.

We knew then we needed more help. We went to see the doctor. ‘I think the time has come for your dad to have 24/7 care … you need to start looking for a suitable placement for him … I¿m sorry.Leaving my home was heartbreaking. But I couldn’t remember at the time why it was … I just knew that something had gone for ever

And then I couldn’t have my dog … They took Lossie off me. The dog was fine, Dad. He was with us and he came to visit, you remember …

The care home was nice, very warm. I had my own room and TV, though I didn’t know how to turn it on. There was a picture of me outside my door, so I’d know it was my room.

I had a garden to go into, but the door was always locked. I had lots of photos of everyone … but with all that, I still missed something. And I didn’t know what it was

But for us – your family – it was a relief to know you were safe and being looked after. You had full-time carers
… we could visit when we wanted.
‘Tea up, everyone.’

Course, I had my music still … Do you know, it never left me. Never left any of us, really. We’d have dances and sing-songs and play piano, and we had lovely times.

We realised the one thing that stayed was your music. Word for word, note for note … it never left you.
Yes, music gave me freedom.

I remember you came for Christmas dinner that last time. We were playing a Christmas album with a wonderful version of Silent Night. You hadn’t said a word all day, but as the song started you put your knife and fork down and sang along with them.

I liked it when one of you took me out. It was a change. Sometimes I thought deep down I was going home. Sometimes, though, I wanted to get back as soon as possible. I felt anxious outside that home … everything was overwhelming, frightening. ‘Come on back, Ron, we’ll make you a cuppa.’

My memories were confused, jumbled… nothing made sense, the world I knew was disappearing, it didn’t make sense and I presume I didn’t either.
Yes things were deteriorating now…
‘Come on Ron … have some dinner …’

You rarely left your bed, you didn’t recognise any of us, you even stopped playing your music. Our only comfort was that you were protected, warm …
‘Hello, not getting up again … let’s have a look at you then.’

I just wanted to stay in my room. My world was shrinking, my mind was shutting down . . . ¿Ron, try one more drink .

Yes, you slept all the time. We would all visit, but you wouldn’t know we were there. You didn’t respond at all.

I remember one time, though. I’d spent a few hours with you in your room. You slept, I worked. Then, when I left and said goodbye, you replied, clear as a bell: ‘Take care son.’ It took me aback. They were the last words I heard you say.It was like a candle flickering back to life for a moment … then it went out for ever.
It was all very scary. Imagine a day when nothing will mean anything to you.

Every memory of everything and everyone you loved and cherished would be wiped away …When you love life as I did and you loved your life as I did … can anything be so cruel?
No, Dad, I don’t think it can.