As defined by Oxford dictionary;

Hope – Grounds for believing that something good may happen..

Alzheimers in its cruelty is not a disease that gives you much hope.  As a degenerative neurological disease it is designed to take every last inch of the person it has set its sights on.

First it takes things like your keys and cell phone, it puts them in mysterious confusing places and then eventually loses them altogether. Then it comes for your livelihood, it takes from you the job you have worked for the past thirty years, that job that you lived and loved, it snatches that from you with a dash of humiliation.

Next it comes after your independence, you can no longer be trusted to be alone.  There is an immense fear from your family that you will either wander off and get lost, or burn the house down. You lose the places where you put your possessions. Frustrating signs start to appear on cupboards, fridges, drawers marked with “CUPS, GLASSES, FRIDGE, T-SHIRTS, PJ’s.”  The signs become perplexing as your brain starts to lose the ability to read.

You start to lose the people you love.  Not through choice of either you or them but because alzheimers has decided to steal them from you, to erase the memories you have of them and not give them back.  You start by forgetting names, you stumble through conversations “oh yes, that person, with the long brown hair…” then you start to lose faces.  Familiar faces become unfamiliar.  Friends become foes.  Family becomes invisible.

Alzheimers does not stop there.  It continues to take, until it has everything.  Until it has left you with the shell of a person.  It takes your ability to walk and talk and feed yourself.  Alzheimers only stops at the sweet embrace of death.  But it’s damage is not just limited to you.  It takes from your family, your partner, your children and friends.  They lose you.  You no longer are the person they use to know.

On the onset, alzheimers looks and feels hopeless.

But during this time something else happens, you lose your judgements, your inhibitions.  There is a period of time when you are not weighed down by the judgements of society.  Where you pull funny faces with your daughter, and took nonsensical about life.  Where you talk about stories of the past as if they were happening right now.  No longer are you concerned about how the world perceives you and as alzheimers clears your mind you become happy, content in your world and what you are doing.

This is Martha.

Whilst I become frustrated by her being lost in her own world she is perfectly content there.  She smiles to herself, laughs occasionally.  She is the happiest I remember her being for a while.  She converses, she enjoys herself, she passes no judgement on the outside world.  She can become frustrated with her world but when I try and summon her from it, this agitates her further.  At times I need her to be present with me, to move with me and be here, but I am learning to let that go.  I am learning to let Martha be the happiest she can be in her world without my own fears, judgements and needs coming in to play.  The most alive she can experience in her moments of fading memories.

This gives me hope, hope that we still have bright days ahead of us, hope that alzheimers does not define us and hope that one day with my predisposition to alzheimers I will feel the same relief and happiness that Martha has.  I will no longer be inhibited by the world we live in today.  I will be satisfied by the conversations in my head.  Alzheimers will not be my defining quality and the way in which I exit the world, but my happiness, my joy and my love will be how the world remembers me.

Much love,

KB xx

“If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic!”

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