Devastation?

I must be one of the lucky ones.

I got my diagnosis. Pretty much as expected. Age 64.

I went home.

I took new pills – donepezil.

And my brain restarted itself.

Rather magically really, it just recovered from lethargy, slowness, and its jam.

In 48 hours I found I was finding words more quickly, and feeling energised again.

(Yes, I did have very low blood pressure which sunk me, but I changed to evening dosage and all was good. Except for the dreams.)

Was I devastated by being diagnosed?

No. I was reassured that there was a reason for the changes that had gradually crept up over years.

Did I think my life was over, there and then?

No. But I knew it was changing. Not overnight, but subtly, slowly, and that pills would perhaps delay the progression for a while.

Really, I didn’t know what to expect. I had just stopped working, no doubt partly due to symptoms, but also because I was got rid of for whistle blowing. And I hadn’t the energy or efficiency of brain and body to try again.

So in my non-devastation I thought I should get things sorted out a bit. Power of Attorney and Will update. And go off to France for two months in a van.

That was such a beautiful holiday. We drove, we rested, we walked, we cycled. We visited old village and vibrant markets. Historic towns and lush riversides.

When we got back I was so non-devastated that I got involved with DEEP, Alzheimer’s Society, local dementia friendly things…and just found myself advocating for better lives for others living with dementia.

I ignored the devastating advice that I should avoid risks and getting tired, and just do less.

(That would indeed have been somewhat devastating.)

I was still me. With my physically decaying body parts, now joined by a decaying brain. But every day was just another day in life’s journey.

Everyone’s life journey is different. As a student of literature and of people, I find it fascinating to imagine myself into someone’s else’s life. Atticus Finch was right. Walk in other people’s shoes before you judge.

Better still, don’t judge others. Judge them only by their actions.

And you will find that there are reasons for what people do, how they feel, and how they react to dementia.

There’s a lifetime of baggage that each of us carries that decides who we are.

One person’s delight is another’s horror.

You might be devastated by dementia if you have before that been super fit, successful in everything you did, and had no reason to think negatively.

That’s not me. Nor a lot of others.

So for me it’s just another stage. I’ve turned off the main road onto the little country lanes that meander between hedgerows and fields. I can still navigate trains and buses and streets, but I choose not to because they frighten me now.

Well, not buses. I rarely see a bus, and then only in the distance. I actually have a recurring dream in which I cannot find which bus to catch to get home. What do you read into that? (don’t try)

What is devastation?

“Devastation is severe and widespread destruction or damage. A huge bomb blast brought chaos and devastation to the city yesterday. Synonyms: destruction, ruin, havoc, ravages.” (Collins)

Well I guess that the disease that wraps fatty stuff around your neurons and stops your brain working could be described as devastation.

Ruin ✔️ Destruction ✔️ Ravages ✔️ Havoc ✔️

Yes, but it doesn’t happen overnight (unless it is by trauma).

It is slower than a snail, slippering through your brain, wrapping itself around the wires and pools, slowly slowly squeezing away the life that passes through your neurons.

So ask another question: when does this excruciatingly slow process become devastation?

When does devastation start? And what is non-devastation?

I believe that devastation is when all is ruined, destroyed, ravaged…and that is death.

If you are still breathing, thinking, smelling, hearing, feeling, moving…you are surely not devastated.

And who in this life is not on their road to death? To devastation?

(Ignore for now any potential for afterlife. You are still physically no more, dead, floppy, then rigid, then putrescent.)

……

Why then is receiving a diagnosis of dementia devastating?

Beauty is in the eye of the beholder.

Devastation is in the feelings of the receiver.

Being told your life is now over; prepare to die…that is devastating (and wrong).

Being told you have a disease which is causing your symptoms, is just information.

I do not advocate lying, or concealing the truth. There is no cure. There is very little treatment for many sub-types of dementia. There is ultimately no hope that you will live to 200.

But then, nor will anyone else.

Does anyone know when they will die? Nope. You just go on getting up each day till you can’t.

And that’s the trick. Go on living. Go on enjoying whatever you can.

Write down what gives you pleasure. And do it. See it. Smell it. Hear it. Feel it.

You are what you feel. Pain, pleasure, sorrow, joy…you are whatever you feel.

….

So Doctor, don’t tell me my life is over, that I have a devastating disease, that I need to prepare for my death.

Tell me to go out and live. Because you don’t know any better than me when I will die.

And better to have loved and died than to have lived and not loved.