Dementia is cruel. It robs sufferers of their memories but also their relationships, their personalities and in its more profound stages locks the sufferer into seemingly impenetrable worlds. This is why the work that Playlist for Life do is so important. The apparently simple task of compiling a playlist of music for a sufferer, based upon what family members know of their favourite music and putting it on a personal music device, has shown remarkable results. Sufferers have sparked into life, begun to show signs of recognition and most movingly, emotion. Dementia, when it begins to wrap its cold fingers around a family can have toxic effects on those watching the decline of a loved one. Denial that it is happening, hope that it isn't, fear and even neglect are common. It sometimes causes fractures in families, it can mean, when the inevitable happens and the loved one is taken into full time care, a refusal to visit because it is so difficult seeing what can become a total de-animation of a person once so very different. My daughter wrote a poem that charts, I believe, how the realisation sometimes comes slowly and what feelings are evoked by a living death.
My own mother's decline was brutal and chaotic, and battles with authorities and health care services were long and hard. But for some time it didn't seem inevitable; that afternoon when mum knew that both me and my older sibling were her sons, but could not grasp that we were brothers, may have seemed gently dotty. But it was a sign of the way in which the disease works its way through the banks of memory, pulling the plugs on the cables that connect them. Yet what has become clear from the work Playlist for Life do is that many of those memories remain deeply embedded but often without the mechanisms to recall them or to feel again the emotions that accompanied their laying down in the first place. Music of a personally significant nature does evoke those memories and feelings it would appear.
I took some music to my mother, by now and for some time, seemingly without any knowledge of who I am, silent but for mumbles, physical ticks, eyes often closed. I played to her, through headphones, the music of her youth in Italy, the great Neapolitan songs and one I know her to love, 'Voce e notte'. There was no immediate or dazzling transformation, but her eyes opened, her fidgeting ceased, there was focus in her gaze. And she was listening.
It is always the hope that something - anything- is happening within the mind of a dementia patient. One wants there to be a consciousness in there with them, keeping them company, soothing them, that their emotional being survives, that they know themselves to still be human and alive. Music can reanimate that soul, if just for a short while.
We will be collecting for Playlist for Life throughout the season and would urge everyone to donate something, however small. You can visit their website to learn more about the work they are doing and to watch some remarkable films of patients they have worked with. www.playlistforlife.org.uk
Oh, and this is my daughter's poem
You should have realised she was fading
When she forgot to wash the soap from her hair,
You should have known when you found
Bowls of broccoli for the cat
You should have known she was fading
When she called you to ask the way home.
You should have known she didn't only mean
That the only way back to herself was you,
And you could at least have told her
You loved her whilst she still knew your name
We try so hard to remember who we are,
And if it's so hard when we are young,
Imagine how dark the roads felt
When her own name was fading
Letter by letter.
I know it hurts.
I know it feels like your own heart is being
Ripped from your chest like
Stabbing an avocado pit and twisting it out.
I know it feels like not even you can
Remember the sound of her voice,
But it is up to you to remember her,
And carry on singing the song she wrote
Because she wrote it for you.
It was always for you.