dorothystewartblog

about writing and life and God

Dementia DIary 6: Compassion fatigue

on September 15, 2012

 

Think of those nasty groundy bits at the bottom of a cup of coffee.

They get in your teeth.

Stick to your tongue.

And are bitter.

That’s how I feel for quite a while after taking my husband out.

Even when we’ve had a nice day together.

 

I’ve read up about it and I reckon it’s a toxic mix of the dregs of the adrenalin and cortisol we flood our systems with while we’re with them.

It may not look like we’re doing anything strenuous! But we’re nerve-on-edge watchful. Tongue-biting and teeth-grittingly patient and unprovocative, walking on eggshells. And trying to be one step ahead to prevent any… falls, disasters, spills, aggression, upsets.

I do wonder whether people who have had children find this easier than I, who never learnt the ropes with toddlers? Because it is – oh, it’s so horrid to say it but it’s so true – it is like being with a large-scale (and therefore more powerful, more determined and actually a lot more dangerous) toddler – wilful, mind of his own, zero judgment and few inhibitions.

So yes. I come home exhausted. You come home exhausted.

Sometimes we wonder why. I read an explanation somewhere. We are compassionate people, feeling compassion for our loved one’s situation. When we’re with them, we enter fully into that situation.

Compassion: com = with. Yes, but then add ‘passion’. Think of Christ’s passion – suffering. There’s the ‘ah ha’ moment! We enter into their suffering. We suffer with them. Depending on where they are in their illness, we may even suffer more than them because we are aware…

So, yes, I’m shattered. Yes, you’re shattered. I reckon I need 36 hours – sometimes even more – for full recovery. But we did it. One more time. And that’s good.

Text: ‘Come to me, you who are weary and burdened, and I will give you rest.’

Prayer: Lord Jesus, You know I’m weary and feel burdened. This dementia is more than I can cope with. Thank You that I do not have to cope with it alone. That You really are here to shoulder my burdens and help me. Help me,Lord, to trust in Your promises and rest in You. Amen

Self-care suggestion: I try to give myself time to sleep late, eat nice food, and when I’m ready, go out and be with nice friendly undemanding people who won’t ask silly questions that will make cry! It’s helpful to plan for this because when you’re wiped out, you won’t have the energy to even think! So plan your recovery time.

 

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6 responses to “Dementia DIary 6: Compassion fatigue

  1. Anne Booth says:

    Dear Dorothy – this is such a helpful blog for me. You have it exactly right, and it is so rare to read something which looks for Christina meaning but which does not sentimentalise the problems. It is impossible to explain to those who do not go through it how exhausting it is to be with someone you love with dementia. As a Mum of four I absolutely agree with the analogy of the toddler, but in my case the relationship is also complicated by being that between myself and my mother, who at times regards me as the toddler!

    I wish you would get this published by a mainstream Christina publisher. I have not seen anything comparable. I really look forward to your posts.

  2. Anne Booth says:

    Obviously – I meant CHRISTIAN meaning!

  3. Anne Booth says:

    And a CHRISTIAN, rather than Christina (!) publisher!

    • Hi Anne. I tried to reply earlier but I don’t think it worked. Sorry! I’m new at all this! I do have a publisher for this series of meditations – the same publisher as did the previous book, One day at a Time, for the folk still at the hands-on caring stage. I’m due to deliver the new one end-December, so hopefully will have plenty of material by then! Any subjects you’d particularly like me to cover?

      • Anne Booth says:

        I haven’t read your previous one – which I will look for now – so apologies if you have already dealt with this. I’d like faith that God still has plans for me, outside and after my caring role. It’s difficult when you know that you must be present with someone – but you don’t know how long that will last and if you have the strength and love to see it though to the end. But that is probably in your first book…

      • I hadn’t thought of including anything about the future in the next book – it’s not something I dare think of for myself! So it probably needs written about – so thanks for that! (By the way, there’s a bit about my previous books on the About section.)

        God does supply strength and love, amazingly so. It’s just that we realise it afterwards, not at the time.

        God bless,
        D

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