about writing and life and God

Dementia Diary 14: Steady as she goes

on October 13, 2012

I’m amazed to be typing in Dementia Diary number 14. Doing two posts a week is definitely helping me build up a nice supply of material for the new book – completed manuscript of 40 different pieces due with my lovely editor Alison by 31st December 2012. If you check Amazon, you’ll find it’s already been announced for next August!!!

All I have to do is keep going. Steady as she goes.

Castletown, Caithness

The weekly posts spring from my current experiences of weekly outings with my husband. Sometimes ‘good’, sometimes painful. Sometimes both. They also deal with the gnawing ever-present inner debate about whether he should come home and be looked after here or stay in the care facility where he is content and comfortable and very well looked after.

When he’s in a lucid, pleasant mood, and especially if I’ve been feeling a bit low, then I can easily start entertaining thoughts of having him home. I see my neighbours on either side seeming able to cope – so why not me?

Well, my situation is a little different from theirs. My family consists of one sister a 15-hour train journey away. My husband has two children who each have two children of their own, but they live a fair way away and have busy lives. So I’d be on my own 24/7, unlike my neighbours whose families rally round impressively.

What about paid care helpers? Well, put simply, I tried that but my husband refused to cooperate. It all got rather difficult. (Those with some experience of dementia will recognise the tactful understatement!)

But don’t we have friends? Ah, there again… he doesn’t, not locally. His friends were connected to his working life and most have fallen by the wayside. A few stalwarts maintain a cheerful email presence complete with suitably bad-taste male jokes, and a few come over from time to time to take my husband out to lunch. I am so grateful to them.

My own friends… Basically they scream at me when I suggest having him home. They’ve watched me crash and burn too many times already!

My church? Bless them, they promised to pray for us. I’m sure they do, but it doesn’t get meals cooked, or groceries bought when I’m ill, or company for my husband when I need an afternoon off.

Don’t get me wrong. I’m not complaining.

I think we carers have the bad habit of clinging to the stiff upper lip. Answering ‘Fine’ when folk ask how we’re doing (which is seldom. Most ask how our loved one is!) Simply because we have to manage, we’re like the swan – apparently gliding effortlessly across the surface of the pool. Hardly anyone can see its feet flapping madly under the water!

And caring – whether 24/7 or a one-day-a-week outing – requires the calm appearance and the paddling like mad!

I recognise that this stage – where I can still consider having my husband home – is temporary. In fact, I think we’re close to the end of that stage. Which will be, I must admit honestly, a relief. I’ll not have the nagging guilt or the roller-coaster of should I, shouldn’t I.

Meanwhile, my task is to keep calm, and when I’m with him say nothing that will unsettle him.

Steady as she goes.

The text: “Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

Prayer: Keep me steady, Lord God. Give me the courage and steadfast strength I need for this stage in our journey. Thank You that You keep us company every step of the way.

Self-care suggestion: Slow down! There’s no way we can be steady and calm if we’re tearing about…. Try to do one thing at a time. Focus on it. Slow your mind down to concentrate on it. One thing at a time. You’ll find it reduces your stress.


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