Dementia: A Family Guilt

When you can no longer trust your own mind.
When strangers can become friends.
When your family become strangers.

Vascular dementia and Alzheimers.

Trying to find your way home.
Not recognising what should be familiar.
Remembering the distant past, but short-term memory no longer exists.
Reading and re-reading the same page, as if it’s always new.
Which, with no short-term memory, is exactly what it is.

The strain on those close, as they watch a loved one disappear. You, no longer living in a world where they exist. No longer able to remember those cherished memories that you all shared.

They, no longer recognising you at all.

You, just simply can’t remember, however hard that you try.

It keeps me awake at night, as I slowly come to the realisation, that I may never see my father again.
His physical form is there, before me, but the man himself, what makes the man, has gone. He’s still my father, although he doesn’t know it. He’s still alive, but it’s not the life that you remember.
It’s like I’ve lost him, though in reality it’s him that’s lost.
He’s there, but not; and it feels almost like you’re grieving for the living.

Seeing ghosts, imagining that there’s something/someone there, behind a door, within a room, he checks, but there is nothing. But that doesn’t stop him looking once again. He’s sure that there are; he hears them, heard them, knows that they’re around, believes they must be just around a corner or hidden, out of sight.

Is it like dreaming that you’re awake; or awake and simply dreaming?
Are they the ghosts of his imagination, are they phantoms of disjointed memories, are they….. but they’re never there when he goes back to look.

But that’s just one part of the disease — chasing shadows.
The other part’s forgetting all you’ve ever known. Held to be a truth, held to be a love, never to be held again. Or never to know why you are being held.

The blank and distant questioning look, as you take him in your arms, as you kiss him gently on the cheek. No feedback or response; or else there’s just a look of anger and annoyance.

How would you react if a complete stranger comes up to you, holds and kisses you with tenderness and affection?
Shock, surprise, confusion, suspicion?

And then there’s anger, and a violence and aggression.

Is it all towards himself? Does he know that he should recognise this person?
Why doesn’t he, why can’t he recognise this figure? What is wrong with him?
He walks, he talks, he doesn’t feel infirm within his body.
He smiles, he laughs, he jokes. Or is it all inside his head?

I just don’t know.
We just don’t know.

The only thing that we’re sure about, is that our father is disappearing from our view.
The man we knew, the man we love, is no longer in love with us.
At least that’s what we believe, because he can’t express it to us anymore.
But all the while we hope, we share a hope, that some miracle may occur; or medicine might be found, that could bring our father back.

To love my mother again, the way he always did.
To laugh and play with his children again, the way he always had.
To hold his hand and tell him of our dreams, ambitions.
To listen to his voice as he recounts a tale of which we all remember.
A tale from childhood, where he would wrap us in his arms and keep us safe.

The sadness that we feel, is that we can’t keep him safe. We can’t protect him from himself, we are as at a loss to understand, as he is lost.
And we all blame ourselves.
For not noticing, not seeing, pretending it was nothing; no more than the simple ageing process; which had been going on for years. Not expecting it to be what it’s become.

And this can be the difference for the family.
A physical illness, can allow the family to feel less guilt. Sadness and despair perhaps; but the knowledge that physicians can at least attempt a cure or remedy. With it out of our hands, the guilt dissipates.
With dementia, it’s a completely different story.

If only.
We’d done this, or we’d done that.
If he’d done this, and he’d done that.

We wonder, and stare at a man who was once the centre of our universe, and who now resides in a world of his own, without us at all.
And we miss him, although we realise that he cannot miss us; yet we want to believe that somewhere deep inside he does.
Which cannot be fair on him, if that were true.

None of us can ever really know what’s going on in the mind of someone else. We can only hazard guesses, or wait until they tell us, exactly what is going on; or what and how they think.
And when that explanation is taken away from them and then from us; how will we ever know what is truly happening to that person.
The clarity of speech, the written word, or even ‘signing’, has all disappeared. Everything is guesswork, supposition and/or a belief in empathy as an answer.
But we’ll never truly know.

So, how to say goodbye? And why, to say goodbye?

He isn’t gone, he’s simply lost.

Although he’s lost, we know we’ll never get him back.

It’s hardest for my mother, and the guilt she feels; for the man that she has loved for more than sixty years; who doesn’t know her, or why he’s with her; and the simple fact that she can’t make him better, and no longer has the strength to pick him up when he falls over, feels a stranger when they’re together, blames herself for every thing that’s happened and cries herself to sleep over a man who doesn’t know just why she’s there.

And then those moments, fleeting, brief and growing briefer; when suddenly from nowhere, a memory from somewhere deep inside him, surfaces — and for a second we believe that he is back — it doesn’t last; might get repeated quite soon after, but ultimately disappears.

Like something breaking the surface of a turbulent sea, never to be witnessed again.

Those moments gave us hope, give us hope; but, unfortunately they are few and far between.
And the disease, as most diseases do, continues onward; destroying and debilitating lives; and this one does the same to all that come in contact, emotionally destroying everyone it touches, though physically it barely leaves a mark.

An illness, I can understand, whereby the body suffers; but this is something different, and beyond my comprehension, and my lack of understanding, only makes me hate it more.

Until now, the point of no return; and the decision as to what is best for him, and then for us.

Cared for, comforted, fed and washed by strangers, who may then become his friends, for the briefest of times. And his family will visit, and he’ll regard them all as strangers; and we’ll tremble and we’ll cry, at our loss; he’ll not know why. Perhaps that’s best all round.

I shall always love you dad, wherever you may be.