Don’t forget to remember

I don’t know my fiancé’s phone number. Or my sister’s. Or anyone in the London Comedy Improv. I used to be fine with that, because it’s all in my phone. I know my Mum’s landline, but not her mobile and for everything else, I bow to technology. But recently, it’s been scaring me; things are definitely harder to remember. The brain, they say, is like a muscle: use it, or lose it. I don’t want to lose it. I don’t ever want to find out that I have Alzheimer’s.

Alzheimer’s disease isn’t funny, right? It’s no joke. Very, very serious. So serious, in fact, that it’s almost never discussed. When it does rear its ugly, unwelcome head in conversation, it’s shown the door as quickly and unceremoniously as possible. “It’s terrible”, someone might say, before changing the subject by juggling kitchen utensils or setting themselves on fire. The odd, rare person might attempt levity: “I can’t remember what we were talking about. Ha ha!” Everyone joins in, but not without squirming a little. It’s not right to laugh at it. It’s just not funny. What a shame.

I ran the New York marathon in November in aid of the Alzheimer’s Society. I ran for the UK Society, because I live in London, and most of the people I’d be haranguing for their amazingly generous donations would be paying in sterling. But some of my efforts got passed along to the Irish Soc, too. I was glad about that, because my Dad is a sufferer, and he’s in Ireland. He won’t be at my wedding in March and there was a big debate about whether or not to tell him I was getting married at all. In the end, Mum decided to tell him. He hasn’t mentioned it since.

Instead, he busies himself getting ready for golf and then getting straight back into bed. He’s constantly packing “for America” (where he’s never been). He regularly speaks to people who’ve been dead for decades, then gets upset when something triggers the memory that they’re gone. Once, he didn’t know who Tara was. (Mind you, he’s not alone there.)

The thing carers know is that – despite the heartbreak of losing someone, while still having them physically near – many aspects of the disease can cause laughter. It’s what gets people through. It’s such a grim subject, the giggles somehow find their way out. One elderly relative forgot all language but swear-words. Dad has recently been divulging lots of info about “safe houses”: real or imagined, I’m sure we’ll never know, but if it turns out to be of historical significance, rest assured I’ll pass the info on to you. Either way, it’s kind of funny. It has to be. The humour-free version is too shattering.

The carers for dementia sufferers have the patience of saints. Except they don’t. They have the patience of regular humans who often run out of patience. They need info and support and a laugh like you wouldn’t believe. I can’t really talk – I’ve never done it 24/7. My Mum has though. She is. That’s what she’s doing right now, in fact; either she’s tending directly to Dad or she’s doing something in another room, one ear constantly cocked for a door opening or car keys (the ultimate forbidden fruit) being searched for. He’s barely mobile: doors and cars are bad news. To be honest, in all of this, my immediate concern is rarely for Dad.

When I was fundraising for the marathon, many, many people cracked and told me of their family members who suffered from dementia, or cared for those sufferers. Of these crackees, I knew some quite well: they had never spoken about the disease before. Even in my own case, I’ve always brushed it off, glanced off it lightly, because the truth is it reflects on me. It’s the brutal genetic possibility of that happening to me which makes dementia such a taboo subject.

The Alzheimer’s Society firmly believes dementia is not a natural part of ageing, but a disease which – like cancer – can ultimately be conquered. Forgive me if I throw my potentially susceptile genes in with them. I want to be on their side of the playground. I want to help them to do as much research as possible, so that ultimately even I don’t forget who Tara is.

Besides, if they weren’t doing the kind of relentless research that they do, we’d never had had the story this week that mobile phone use may limit and possibly even reverse the effects of dementia. (Yes, yes, we’ll deal with the tumours another time: we’re talking dementia for now.) The tests were performed in Florida, on mice. What I want to know is where they found mice with mobiles in the first place? Also. do they lie to end awkward conversations? “I’m sorry, I’m going to lose you soon: I’m about to go into a hole.”

Anyway, after months of chatting to Mickey and Minnie (I assume, who else do mice call?), young mice – genetically predisposed to dementia –  didn’t develop it, while older mice saw their memory impairment diminish (“So that’s where I left that cheese…”). Electro-magnetics, or something. The BBC reporting of the development is here. The Alzheimer’s Soc’s own version is here.

The Alzheimer’s Society logo is a happy, blue elephant: elephants never forget, you see. They are also, traditionally, supposed to be afraid of mice and so they should be: those little feckers have mobiles and are smart enough to live rent-free in Florida. Despite genetic predisposition to Alzheimer’s, they can perform “complex memory tasks”: I can only assume that entails knowing people’s numbers by heart. I haven’t been able to do that since speed-dial were a lad.

The marathon’s over, but I’m going to do what I can to raise awareness and, y’know, help this year. Now you know why. Forgive me if I keep pestering you, it’s just that I really don’t want you to forget.

UK Alzheimer’s Society

Alzheimer’s Society of Ireland

www.justgiving.com/taraflynn

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8 Responses to “Don’t forget to remember”

  1. Dorothy Says:

    Great post Tara. Some years ago my Grandmother had Alzheimers which resulted in my Mother becoming very active in the Alzheimers Society in our home town. I ran the women’s marathon during this time and was afraid (yes afraid!) not to do it for the Society. In truth, I wanted to do it for Barrettstown or some other children’s charity, but then I felt that if I didn’t do it for Alzheimers, I might somehow be more susceptible to inheriting the disease! It really does have that effect. It must be very hard to see your Father going through it, and your Mother having to deal with it.

  2. tara Says:

    Thanks, D.

    Yes, it’s a very strange one. Even thinking about it makes people uncomfortable, and I totally get what you say about almost being afraid not to support the Society! But they’re desperately underfunded, partly due to the stigma attached, so even if fear of it happening to us is part of the motivation to draw attention to it, then let’s hope a few more people start to feel afraid. I’m going to make this the year where I talk about it and don’t run away from it. God, marathon training was handy…

    Thanks a mil for reading.
    T

  3. Matt Scutt Says:

    My nan had Alzheimers. My grandfather had died when I was very young, so when her condition had gotten severe, her care was distributed between her children. Fortunately she had six so she had plenty of places to stay. I was in my late teens when it was my parents’ turn on the rotation. Everything was going relatively fine: thinking I was her son, husband, grandson, who was I? – that sort of thing. However, one night, the front door had not been bolted. The only night it had not been bolted. And yes, this was the night my nan decided to go walkabouts. Chaos ensued. My father heard the door, but was unable to find her. Everyone was called and the search began. Police joined in. Then a couple of police helicopters with cameras capable of seeing heat. She was found four hours later, still alive, lying in a ditch. She’d been trying to walk home. She died three days later as a result of complications from hypothermia. However, even after this we still managed to find humour. The local paper had published an article from disgruntled residents complaining about helicopters waking them up and circling too low. Cheeky feckers. We wondered whether they’d have called in the cavalry had it been one of their relatives.

    Alzheimers is a painful disease to watch. Without the humour it would be unbearable.

    A great blog again Tara. You should be so proud of what you’ve achieved for the society. I know I am.

  4. Margaret Says:

    Great piece. Been there, done that (six years with Mum) and, while I wouldn’t wish it on anyone, I wouldn’t have missed it for the world. A lot of love, a lot of laughs – a bit of desperation but it helped never to look too far forward. Best advice came from a specialist nurse who said not too get too obsessed with the last stages as you might never get there. And we didn’t – she slipped away after an afternoon harvesting cherries and putting them in a bowl so life really was just a bowl… I miss her like stink. Good luck with it all and keep up the good work.

  5. tara Says:

    That’s really good advice, M. Thanks a million for sharing that story.

    T x

  6. tara Says:

    Matt – I love the bit about the neighbours complaining about the helicopters! People don’t stop to wonder why the hell they might be out at night in the first place.
    I’ve done very, very little for the society – and even very little within my own family set-up, so I appreciate your kind words but I can’t really take any credit. I’m all cosy, hundred of miles away in London, while Mum’s at the coalface every day. My sis then takes most of the hands-on looking after Mum: I really am lowest on the food-chain.
    But if I can bang a saucepan loudly and get people to take a look at the Alzheimer’s Soc’s work, I will.

  7. Clo Says:

    Hey Tara,

    I read Pauline McLynn’s book “Missing You Already” over christmas. I bought it thinking it would be light and fluffy – perfect christmas reading. As it happens I cried my way through it, but only because Pauline’s painting of the relationship between a woman and her Mum (with Alzheimer’s) was so beautifully done, as was her delicate portrayal of the slow disintegration of a person’s mind. And like you say, some of it made me laugh. But most of it made me think of my beloved Auntie Fionn who is currently living in a world that none of us can visit. She doesn’t know anybody and she can’t communicate anymore.

    It’s unspeakably cruel – this disease and not just to the person with the disease. But you’re right. We should speak about it. I can’t for the life of me work out why there’s a stigma. But we need to make it normal to talk about this disease and try to shake off that sense of embarrassment that people seem to feel around it.

    Well done Tara.

  8. tara Says:

    Beautifully put, Clo. Thanks a mil for the lovely thoughts and telling us about your Auntie Fionn.

    Haven’t read Pauline’s book yet, but I’ve heard it’s fab: definitely one for the 2010 list.

    The Alzheimer’s Society asked me for a quote initially, when I was running the marathon, and I chickened out. I didn’t want to say my Dad had it. I said I’d “seen what it can do” or something equally watery. I don’t understand the embarrassment either, especially my own. So, no more.

    Again, thanks, and wishing you and your family strength for the rest of Fionn’s path.

    T xx

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