Mother: “I wish I had a phone.”
Daughter: “You do have a phone.”
Mother: “I wish I had a phone I could phone my mother on. Have you seen my mother?”
Daughter: “No, not lately.” (Thinks: “Not since she died many years ago.”)
I could tell my mother 20 times a day that her mother was dead, but each time it would be as though she had heard it for the first time, so why put her through it?
It’s not that I lie I never say she’s alive, but I never say she’s dead either – well, not any longer. A year ago I would have reminded her gently that her mother was dead, until she asked again, perhaps the next day. Now she cannot retain the information for more than a few seconds. The instant is all there is.
I’ve always believed pretty much in living for the moment. The older you get the more life shows you that the unexpected always happens, so you should seize the day. Caring for someone with Alzheimer’s compounds that belief. If you have no short-term memory you might enjoy a view, or a meal, or a friend’s company, but anything you do will be gone from your mind in an instant. So if you’re unhappy it’s pretty devastating (like if you have just heard your mother has died). If your main carer is out of sight, or if you’re in a place that’s unfamiliar, your anxiety levels will be high, but you may not know why, and you will not have any concept that things will be back to normal soon. You may not even know what “normal” is you just feel anxious when things are out of the routine, aware there is something “wrong”.
You’re always looking for something that’s missing, something that evades you. Fleeing the house at every opportunity, looking for a mother and father, a childhood home, or a workplace where you spent 30 years. If a concerned neighbour prevents you getting on a bus to the city you’ll give them short shrift. And if a carer keeps you locked in the house with them for safety, well they can say goodbye to Dr Jeckyll, hello Mr Hyde. Other people’s feelings don’t come into the equation – all empathy is long gone.
So that important work you were going off to, you’ll just have to do it at home. You have filing and invoices to sort (but really they’re tissues and tea bags). But you do need to get on with it. Until your mother comes along.
Jennifer Harvey is a day services co-ordinator working with people with learning disabilities
➔ See www.communitycare.co.uk/bestpractice for online tips on front-line management skills