Don’t mention the D-word

One of the most traumatic things about dementia – and there are many – is the fear that it may be inherited. As you fend off the aggression, the paranoia, and the surprisingly intense agony of answering the same question 10 times in 5 minutes, inside you are on your knees, sobbing “Dear God, please don’t let this happen to me.” Even if you’re an atheist. (Research actually suggests it’s not particularly heritable, but the spectre is too terrifying to dismiss. Also it’s not obviously heritable in part because it is alarmingly common.)

Dementia means being abused for “trying to run my life” because she can’t remember calling the plumber, and now believes I am siccing plumbers onto her as the first step to having her put away. (Because how else would you go about it?)

Dementia means a barrage of hysterical phone calls because her purse has been stolen out of her locked house, when she has hidden it under the bedclothes.

Dementia means trying to protect her from herself, without mentioning the “D-word”, and without suggesting that protection might be necessary, and still being screamed at for it. Often in public.

Dementia means walking on eggshells, while being pelted with emotional rocks.

Dementia means feeling guilty because she is lonely, but desperately protecting yourself from the endless trauma, and knowing she will not remember seeing you 5 minutes after you have gone, anyway.

Dementia means gritting your teeth and trying not to snap when you have the same conversation 10 times every phone call, and 30 times every visit. And getting abused for not telling her things that you have only told her 15 times today.

Dementia means a timebomb rigged to disintegrate your family at random intervals.

Dementia means flinching every time the phone rings, because it probably heralds the latest crisis.

Dementia means seeing the terror in her eyes and being unable to reassure her.

And yet, dementia means other things, too. Dementia means long phone calls trying to sort out her utility bills, with endlessly patient voices in call centres, who I can’t warn of the situation in case she hears me, but who nevertheless understand instantly, and handle her repetition and confusion with grace and good humour, patiently extracting the information they need and making things as easy as possible.

Dementia means the local bank teller calmly repeating things over and over, and never losing her patience or looking pointedly at the huge queue behind us.

Dementia means waiters cheerfully and compassionately reassuring her 5 or 6 times that yes, she did order this, without appearing tempted to throw her coffee at her.

Dementia means shop assistants patiently explaining that you have to pay for things before you leave, and smilingly reassuring her that they forget things themselves, sometimes.

Dementia means strangers letting her use their phone when she is lost and confused, or can’t let herself into her house despite having her keys in her hands.

Dementia is exhausting, demoralising, and truly terrifying. And perhaps because most people have been touched by it, if only distantly, it attracts compassion and concern from unexpected directions almost every day.