I spoke to my Mum the other day. She is coming to visit next week and I'm looking forward to it. She doesn't live near us any more, having moved to be nearer to my sister over a year ago now. We spoke of maybe having a day trip to Oban which she would enjoy and that I would take her to see the Kelpies, they have been developed since she left. She will also see her grandchildren and her friend who she has missed. We will take her some trips down memory lane. She loves a trip to the Botanic gardens in Edinburgh which are nearby.
We might even take her to the beach to enjoy an ice cream outside. Guaranteed to bring back memories of childhood for us all.
She will enjoy times when the Cara the dog rests her head in her lap and brings a calm affection to her. Koshka the cat will offer the odd cuddle if he can sneak in to her room. We will probably seek some old films she enjoys on the TV.
I will do my best to encourage her to enjoy some of her favourite food while she is with us. We will constantly ply her with tea to keep her fluids up. And give her her night time tipple, just to help help sleep of course.
Yes she will ask the same questions many times, she will forget what we have just done or said. She knows us all though, even if she gets a bit muddled on the age of the kids now. No wee ones here Mum I have to remind her. But she greets the reminder lightly and we move on so as not to dwell on it.
She has Alzheimer's now you see. Her long term memory can still bring to mind long lost family and friends and be triggered into fond reminiscence but the recent is left behind quickly. Her diary is a vital contact with daily reality. Written in, to describe each days activity. It's words are a connection to that daily rhythm that her memory no longer does the job of.
When I call her we speak mostly of the weather, the birds on her bird table, her great grandchildren's plentiful charms. Her pleasure in life is palpable. Her recent return to church a huge comfort.
She is happy, her life better now she has regular support and her daughter there to act as her advocate, coordinator of care, her finger firmly in the dyke to the tsunami of her need. Her carers are kind but frankly not always skilled enough not to heed the "no I don't need a sandwich I can make it myself", to see through the veneer of social competence to the vulnerability underneath. She pays for this care too, from the hard, very hard earned pension and careful savings. It's gradually disappearing as her need tightens its grasp. The rainy day is here.
This week David Cameron said "dementia is the greatest enemy of humanity". This statement distressed me I admit and frankly beg to differ. I do agree we need to do more to rise to the challenge of dementia. We need to understand it better, we need treatments in the form of drugs to relieve symptoms, we need care and support not only for the people affected but also for those who support them. We need to fund properly the skilled care which will enhance lives not merely deliver the minimum. Can we find a cure? I doubt it. Dementia is many conditions, one pill will not cure that. Profit seeking pharmaceutical companies will never hold the only key.
We hold that key ourselves. Low taxes at national or local level are not compatible with universal care and support when we need it. Paying carers minimum wages and employing them on zero hours contracts should not lead to surprise when that care is poor. We don't value their role in our society. And turning our heads away from all of this won't take it away either. Demonising dementia and by inference all those affected by it is in no way helpful. And in my view i think its unforgivable.....
People with dementia are our families, our friends, our partners, they are us. They have joy in life too, given the right conditions. We are not just our memories, yes I dread it happening to others I love, but I hope it's an able compassionate community and care system that greets us if it becomes part of our future.
No ,Mr Cameron, dementia is not the enemy of humanity; greed, social inequality and lack of compassion is the real enemy of humanity. It's up to all of us to change that....a pill won't be the cure for that. I only wish it was that easy. But we can change that, if we care enough. And if as a society we are willing to invest in it and do the work. That's the challenge we all face.Reasons to be cheerful. I hope we can give Mum a bit of TLC when she is with us, that she can enjoy some joyful moments with her family, some special times in the moments they happen. It's a small things that matter after all.