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Diablog Number 2: On Human Potential

Posted in DiaBlog with Larry

On Human Potential Elizabeth Peel in Conversation with Larry Gardiner

In the second of a series of six blog posts I talk with Larry Gardiner. Larry describes himself as a Change Agent, Co-producer, Citizen Advocate, Gentle Irritant.  On a warm spring day I interviewed Larry who shared with me his experiences and views – or rants as he puts it – on numerous topics: the diagnostic process; human potential, being and engaging in the world; the distinctiveness of younger onset dementia; the importance of communication, interaction and meaningful engagement; the “bigger picture” and how people with dementia are represented and treated in society; his views on research; and on anti-psychotic medication. 

I enjoyed our conversation, I hope you do too. Thoughts and feedback very welcome. This particular ‘diablog’ focuses on the theme of human potential, and being and engaging with people with dementia.

Larry: We have traits, and potentials, and capacities that are common with other organisms that regenerate and recover. I don’t think I’m like a frog that if you pulled a leg off, I’d grow another one. Or a snake, if you pulled my tail off I’d grow another one, I don’t think that. I think I’ve got the potential in my brain to get a wriggle on and do something. Anecdotally, I get bits of myself back occasionally, sometimes. Not for very long. Yesterday (laughs), yesterday I went to the dementia café I told you about, like a social event, I was really, really late. I was absolutely seething and hopping mad when I got there because the traffic had been awful and I’d got lost and forgotten my way, and I’d almost turned around in despair. When I got there, there was a band and I knew one of the people who was a musician in the band and he said, we’ll get you up to sing. I said, wow (laughs) alright then and my support worker came up, got me up on the stage, up a flight of stairs and I got a bit of myself back. […] I had to have the words, I couldn’t remember them, but I could remember how to hit the tune and hold the tune, and I had the time of my life! I really did get a bit of myself back, brilliant. So, occasionally I get a bit of myself back. Whether that’s the same as saying I can reverse the symptom progression by willpower and hard work, I don’t suppose it’s, I um, I’ll keep trying just in case it is possible. And I suppose if I aim for the sun and the moon and stars I get as far as the outer atmosphere or something, you know. It’s good to have a goal.

Mutuality of exchange

Liz: What approaches are important to people with dementia?

Larry: The thing that I’ve tried that works is exchanging listening time. So, sometimes what I’ll say is, I’ll just propose something, if you listen to me for 10 minutes I’ll listen to you for 10 minutes. You know, if somebody doesn’t have language, it doesn’t mean that they don’t want to get listened to. So to make it safe, sometimes I’ll take my turn first and I’ll use a timer, I’ve got an egg timer and I’ve got one of those things on my phone. So I’ll say, usually start off with small amounts of time, so I’ll say I’m going to set my timer for 3 minutes. When it goes ding, I’ve got to stop and then it’s your turn. And it says expressly that in 3 minutes time you’ll get 3 minutes to do anything you want to do and you’ve got permission to do it and because you’re listening to me you can give yourself permission to do it. So for 3 minutes I’ll just talk about whatever’s on top, often enough I talk about new things, good things and interesting things that might be of interest to anybody. And I like the sound of my own voice, it’s no hardship for me to talk, you may have noticed that. And then, at the end of it, it goes beep, beep, beep and I say “it’s your turn now”. And I just sit and I just look at them and I sometimes hold onto their hand, if that’s not going to be too freaky a thing to do. Um, I was with this lady and as soon as the beep, beep, beep, I said it’s your turn now. Her eyes started watering and so I just stroked her cheek, like that, with just the tip of my finger like that. She didn’t say a word for three minutes but she had a bloody good cry. We had a hug at the end of that three minutes and I said, do you want to do it again? And she went like that, her head, it was almost involuntary you know, almost like she couldn’t stop herself. […]

So then I said, would you like to go for a walk? And we walked around and I said, “if you listen to me while we walk up to that end, when we walk back down the other end, I’ll listen to you is that okay?” She went like that, her head just dropped down, you could so clearly see that this was assent, yes please. So that was what we did. We walked all the way down this sort of shingled path and um, my foot kind of drags a little bit and um, we were linked arms and she could walk better than me. And all of the sudden what I felt was underneath my armpit, her elbow was starting to boy me up because she’d noticed that my foot was dragging. We had a great communication, most of it was not verbal, it was mutual. It was a mutuality of exchange. It was equal. It was abundantly clear to me that it was enjoyed and delighted in and by the end of it I just said “well you can consider yourself thoroughly delighted and appreciated and enjoyed, I’ve loved spending time with you” and that was it, the flood of tears.

Trying, and learning, new things

Larry: I think if you don’t use it you will lose it. So I think encouraging people to find their own style for staying alert, maintaining self-agency, building capacity, trying new things, learning new things. Probably a reason why that sort of advice isn’t held out there for us is probably because of the stereotype and the prejudice, the stereotypical “there’s no point in talking to him, he doesn’t have a clue what you are talking about”, and “there’s no point in trying to teach him anything, he’s losing his marbles”, you know. It’s not true. Oh, I know it’s not true because guess what I did, I’m thrilled to bits with this (laughs), absolutely thrilled to bits. Years ago I used to ride a motorcycle, when I had children and things like that and we needed a family car I put that all behind me and just got on the treadmill of producing enough for my family to live on and stuff and all the sort of recreational pursuits I never had time for. And then I thought to myself before I die, before I pop my clogs I want to have a go on a motorbike So I bought a motorbike and it’s got a side car, so it means I can’t fall off of it and it won’t fall over, it’s a bike with stabilizers, a side car… I do about 50 mph on it and I stay on those little roads around the back which means I get to smell the hawthorn on the hedgerow and see the trees, stuff like that. I go at such a pace that I can drink it all in, I can make all my road decisions safely with no anticipation, I just give myself plenty of time. And I can’t fall off so I’m not a hazard to anybody else either.

A life worth living, and not being underestimated

Larry: I have a feeling if an individual has a sense that they can have life worth living rather than a long, slow, undignified goodbye, having a life worth living even in itself sort of engenders places where you push yourself, where you stretch yourself. And I mean I’ve climbed up a mountain. I can’t walk as good as you can and I certainly can’t run as fast as you can or as long as you can, but I now have the ambition to do a marathon. … I think that a sense of there is something to reach for, and there are things that I still want to achieve. It’s assumed that I don’t want to achieve anything anymore. Big mistake.  And I don’t think I’m atypical.

Liz: You’re sort of hinting at something about dementia or having the label of dementia is in some sense liberating.

Larry: Ah yeah it comes with its blessings, it does yeah. I mean most people would say, the worst thing you could ever do were to give me dementia. Well I’ve already got it so there’s no point in trying to give me that which means there’s no sanctions that you can applied to me, no sanctions that apply. There’s nothing that you can do to stop me from, I’m completely unstoppable, what a blessing. You know that really, dementia comes with its blessings. I’m completely, it’s a very liberating thing because I’m so uninhibited now. And I really hope that I just get more so as I get older. Eventually somebody is going to want to shove antipsychotics down my throat, simply because I’m so liberated that they’ll get fed up with listening. […]

We organise our entire society on towns, villages, communities, neighbourhoods, nations, states, countries, you know. We are clannish, tribal, herd animals and it’s all because we love being connected, we love being connected and the deepest most satisfying way to be connected is to love each other and what I find since I had my dementia diagnosis, I spend a lot more time with people who’ve got dementia, the sort of ego needs that drive us, leave us early, the words fall off the end, the behaviours fall off the end, the drivers and you just can’t afford it, it’s too expensive to have a big ego. But the need that asserts itself and will assert itself under any condition is the need to be loved. And not just to receive love but to give love and to be loving and to be tactile and affectionate and authentic towards each other. So I think another blessing that come with dementia is that we tend to have more of ourselves, more wonderfully and more beautifully. And I would like for people not to underestimate us, our capacity to be able to do that.