The Look of Love

Dementia. It makes your heart sink knowing, or guessing, what is to come.

We have learnt in this world that it means loss, confusion, endings and suffering, for those with it and those watching it happen.  So, I want to tell you that actually this is not the whole story. There are some untold truths and what I can only describe as magic that I really have to tell you about as I have watched the lady that is closest to me slip away from this world into another, the secret world of dementia.

Part One: Alice’s Secret World

She was always a beautiful lady of her time. Her radiance and glamour of her life had etched itself into her tell-tale lines and glorious smile. Her body shape told her tales, and her eyes held a book of a life full of adventure, love, laughter and sorrow.

One day, in her 79th year, she was celebrating her 59thwedding anniversary with her husband and I came over to visit and share in their celebrations.  They forgot to tell me that this was the day when the long-awaited appointment of the specialist was visiting.  So I quietly waited in the room next door as he was rounding up his visit.  

“So yes, as you thought Alice, you have early onset of dementia….”  

I obviously knew it, my dad knew it and my mum knew it, it had been happening very gradually for a while now, but hearing those words were a line in the sand.  There was no going back, only forward, forward to path of the demise of what we knew of Alice.  

I realised she was disappearing as the woman I knew but over time I started to realise there was so much more to this story.  Her eyes told me something different …sometimes they were alight. Through the vacant stares there was a flicker of a secret like a neon sign momentarily brightening up the darkness.  The sign flickers so quickly that you have to be totally present to catch it and it was just one day, one day of looking into her eyes when I saw it. It’s something like this  “I’m vacating this body and this dimension as I’m somewhere else now …somewhere amazing!”

It’s the last bit that us simple humans and family members don’t get as we’re left behind. With our two-dimensional thinking we assume dementia sufferers are ‘just disappearing’ and feel constant loss and defeat. There is so much we haven’t realisedas we have looked upon science as an answer and we have denied giving our hearts eyes – when actually if you do look with your heart you really can see new truths.  These truths actually make more sense as we all know ‘nature abhors a vacuum’, meaning nothing in our lives just disappears, it’s a law of nature.  

By having a connection with this one I love, by being open enough to see the magic in life, I have seen it.  And wow it is truly magnificent!  In this other dimension they are in the place full of love.  They dance, they laugh, they connect with the spirit of others and they time travel.  They go through time looking for the fun, back through their book of life and they create new beginnings and new endings.  They are the creators now of their new world with endless possibilities.

So it does get really confusing as they are yanked back into this dimension.  That is when they get a bit lost and can’t join the dots as frankly they would much rather be in the other world.  In the place wheretheir body isn’t preventing them from moving to the beat of life like it always had and their energy is boundless like a child. Even more importantly the logic of their mind isn’t needed in this realm.  They are free to just be who they want to be.  

When this lady that I love is pulled back into this earthly dimension she is forced to meet expectations that she can no longer meet.  She is presented with a tirade of demands which span her into a mêlée of constant frustration and disappointment.  This ismirrored by her most loved ones, the ones shecherishes and recognizes first and foremost, and all she sees on their faces are a reflection of the disappointment and frustration she experiences. One of those faces was mine. I used to give her a look of disappointment or sadness as my needs from her weren’t being met like they used to be, like for advice or just comforting mother and daughter ‘stuff’.

So learning about this whole new world, this new dimension also freed me.  Gradually it started to make sense especially when I saw her joy of freedom.  So I learnt to be patient. If I saw she was in this other place I was happy if she wanted to hang around there, I got it. I totally understood why she would choose to be there instead of here. Instead I went through a process of acceptance with the comfort of the gifts she was giving me (another truth I have discovered) so I could confidently and knowingly only give her a look of love.  Which she always gleefully beamed back at me.  Whether she knew who I was or who she was, it was irrelevant.  In fact it sometimes felt my reality was irrelevant and I was there too.

Part Two: The Secret Gifts

The other clue to this method of departure through the dementia dimension are the gifts they leave us. Those they love. 

So the more time they spend in this other dimension the more they stay there. They have to choose parts of their personality and memories that need to stay here, to carry on their life’s work, so they gift it to their selected hosts when both parties are ready.  They know the time is right and when they are certain they won’t need these attributes anymore in this realm and they are ready to let go; they look deep into the eyes of their host and pass that magical energy through to them. The gift is then unknowingly unwrapped by the host. 

It happened to me.  One day, as I pondered about parts of her personality and her energy and where they were currently residing as they were so absent from this world I got a stark realisation. This beautiful lady had cleverly without me knowing, gifted me with this energy and parts of her.  They were so well defined that it was unmistakable, and so clear that the prompt arrival of these attributes for me were also the prompt departure of them her.  I would never see this side to her again, but of course this energy was now resided in me so I have to honour that and enjoy it and let sadness float in and out of my consciousness and not hold on to it.

For me I started to discover quirks that were very defined and yet new to my repertoire. I had vague interests but suddenly they became so vivid and urgent. Suddenly I had parts of me that were totally new and yet so so familiar.  Antiques, furniture restoration, photographs in frames everywhere, a particular taste in art, tenacious with my career and always busy, always fun seeking…All so ridiculously familiar.  

I’d watched this lady growing up. I used to be in awe of her sense of herself, how she knew what she wanted and used to go out there and get it. Always with a smile despite the adversity she often faced as life threw its twists and turns.

How she’d walk into a room and lit it up with presence, her wit and her charm. These parts of her I loved. Even as I was dragged around antique fairs most weekends or spent many a day helping with waxing furniture or painting picture frames …I was with my mum and she was amazing. Everyone loved her, she was effervescent, loving, charming and fun.  

This human realm is quite a short visit so now it is my time to let go of what was.  I need to now embrace the newness of what I have been gifted.  I need to dance a new tune of the young and old, understanding and appreciating the flow of magic that we are all so lucky to behold.  Luckily I believe in the magic as I’ve seen it in her eyes and in my dreams and in the moments in between…. so I can hear the tune and I am dancing to it.  Thank you mum, with all my heart.