Somebody I Used to Know

If I could ask anything now, it would be: When did you decide to leave me? When did you decide that I was to live a different life without all the bits that made me me? It’s hard to remember those final experiences of things I so enjoyed, like desperately trying to catch a drifting dream the next morning. I wish I known then that they were the last times I would do those things I loved and I would have enjoyed them all the more for knowing: the last run along deserted streets, the last batch of cakes, the last drive behind the steering wheel. Instead you sneaked out on me, you didn’t tell me you were going, and so I never knew you’d taken bits of me with you. You didn’t give me a chance or warning, so I couldn’t try and rescue those days. I simply discovered one day that they were gone, gone forever.

Over the next few weeks I take them every day [pills that are part of an Alzheimer’s drug trial], obsessed at first with working out if my head feels any clearer, if my memory is sharper. It will be two years before I find out if I’ve been taking a placebo, but along with the tablet something else has been planted inside my belly, a little seed that will start to grow, a curiosity about research and learning more and more about this disease. That in itself starts to sprout a new feeling, a sense of purpose, of hope, of once again being valued, of taking back some of what dementia has stripped away from me.

During the eighteen months since I retired, I have been receiving a Personal Independent Payment from the government. It’s not means-tested, but based on the practical effects of a condition on a person’s life. Recently I was invited for a reassessment and found my way to the office by plotting my route as normal and using a walking app to direct me. The fundamental flaw in assessing people with dementia is that the assessment expects us to recall things, like exactly what we struggle with on a daily basis. But I couldn’t remember, of course I couldn’t. A few weeks later I received a letter saying that I was no longer entitled to the payment because I can talk normally, walk normally, prepare a meal and have an adequate memory. All of these things are not true. I must have told them how I do speaking for the Alzheimer’s Society, but did I explain that I have to write every one of my speeches out and then read it, because otherwise I will just forget what I’m talking about halfway through? It feels like I’ve had a financial lifeline taken away from me for simply trying to stay out of full-time state care. I feel as though I’m penalised for trying so desperately to cope.