Self Managing dementia…the perfect oxymoron

Just picked up this up in a tweet, so here are my thoughts.

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I don’t live alone…I live with my wife.

Diagnosed four years ago age 62.

I have mixed dementia.

Self management… now, I don’t like this term, or approach. Supported self management yes.

Self management is being left to get on with life on your own. But we’re all at different levels of activation and education and living conditions, so most or all of us cannot manage our condition(s) “properly”, ie in accordance with medical guidance. If each of us could follow the guidance on life style, diet, activity, we would most of us not have the conditions we now have. That doesn’t mean we are reprobates and incapable of living reasonable healthy lives. It means we’re human. And we have experiences and feelings that control how we behave.

I believe each of us needs occasional support to help us live more healthy lives…ie to self manage. It’s Public Health really. Except it isn’t!

As a diabetic I don’t receive the help I need to keep to a perfectly healthy diet, so I use pills to maintain blood sugar, and I occasionally eat a biscuit or crumpet and jam. Like last night. Because I lose the will not to! It’ll be insulin next.

Can we self manage dementia? What does it mean? Given there’s no cure it must be about activity, social engagement, diet, alcohol and smoking…do we add going to bed at 8 because we’re so tired? What do we do on days when we’re completely in a hole? Self management is just saying go away and get on with it.

(Yesterday I was told that research shows that one glass of wine and one cigarette a day reduces the risk of developing dementia!)

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So supported self management is what we need. Through dementia navigators or companions, or admiral nurses when we hit crisis, and through peer groups where we support each other.

What do health professionals say to me? Don’t take risks. Do less. Don’t get tired (!). My GP doesn’t have time to discuss with me my life with dementia, unless I have a specific related issue.

And when people get further on into dementia how can they self manage anyway? I may not be able to make a cup of tea or put my shoes on. What happens then?

Self management is just saying to us, go and get on with your lives as best you can. Here’s what you ought to do, now do it if you choose. So we have a choice as a society. We either regard brain disease with dementia as something that happens, tough and all that, but it’s … life. Or we say actually, just like if you have cancer or diabetes, or glaucoma, we’re going to help you get through it, and if it’s terminal we’ll help you as you approach your death to be pain free and to have around you whatever makes you comfortable and loved.

I think you know which I’d go for.

Finally, yes of course I self manage. It’s called living as best I can. My wife helps me in some very practical ways, like looking after clothes washing and cleaning, since I just forget to do this. And she is a listening ear when I need one. But broadly I keep it inside because no one wants to hear my negative thoughts, and I don’t really want to think them either.

I am in control of my life. As long as I ignore the risk averse nay sayers. But it often is becoming a fight to keep going. It’s not just Dementia…for me it’s the other conditions I have, on top of Dementia. It all wears me out. And I have no professional support for that. Clinical appointments are short, sharp and transactional. And no one speaks to the others. So it’s like bouncing from one corner of the boxing ring to another. Waiting for the next hit to get me.

Self managing dementia?

It’s the perfect oxymoron.

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One thought on “Self Managing dementia…the perfect oxymoron

  1. Again, well written and thought about George. What can we add to that, not a lot. Rob my husband has PCA, a rare form which affects how his brain converts the information to what he actually is able to see. It was suggested that he gets an appointment with a Neuro ophthalmologist (not many of those around). Discussed it with his GP, as a result of that request, we now have a double appointment with the GP (this a first), who says “we haven’t seen Mr … since July last year, perhaps I need to know more about this”. Just stalling my request further. Another battle on my hands.

    Like

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