dorothystewartblog

about writing and life and God

Dementia Diary: My anger, not his

on August 31, 2012

The Plan

I’m working on two books at the moment. The first is a novel – historical, Christian,  family saga set in 1921, based in the fisher communities of Scotland (where I was born) and East Anglia (where I live now). The second book is a sequel to my  book of meditations for carers, One Day at a Time, which was published by SPCK in 2010.

The new book moves on – as I have done – from the situation of being an at-home care-giver for my husband who had been diagnosed with frontal lobe dementia, to our current situation of me living at home, him in a care facility, with all that entails for our relationship and well-being.

My plan with this blog is:

  • Monday through Thursday,  to write about the interesting things I discover in researching and writing my novel,
  • because I take my husband out for the day every Friday, to write what I’ll code my Dementia Diaries  (DD) on Fridays and Saturdays. Some of these posts may eventually be used in the new book which is currently entitled Take Care of Him. (I’ll explain why in another post.)
  • Sunday I may just write about life or God or anything relevant to my spiritual explorations and discoveries as I try to walk the Christian path.

Dealing with anger

So today is the first DD day proper and what I want to tackle is the subject of anger. My anger, not his.  If you’re a care-giver, do you ever find anger building up in you… against your loved one?

It’s a bad feeling. It feels bad, it feels wrong, but it happens, doesn’t it? I could feel it building today. He had got a bee in his bonnet about something and I just couldn’t seem to get through to him. I could feel my internal boiling-point rising. I wasn’t angry with him so what was it all about?

It took a few moments before I realised: it was anger with the situation. That this man – once so quick on the uptake  (he usually got there before me!) – was now reduced by this horrid illness to confusion, cognitive disability… Call it what you like, it is still horrid.

And what made it worse for me is that sense of utter helplessness to do anything about it. This situation, this illness, is not his fault. You wouldn’t get angry with someone who had broken their leg for not being able to run! Dementia is equally physical – but the damage is hidden away in the brain where we can’t see it. It’s still there, though. And one of the effects is cognitive disability, getting confused, not being able to think as fast as he used to – not to mention the 2-minute memory!

Somehow having a handle on what was getting to me put a stop to the anger-surge. But in its place came that oh-so familiar sadness. What a lot of grieving we care-givers have to experience! I tried to explain to a friend that what’s happening to my husband is like the effect on global warming on the Antarctic – as another slab of ice breaks off and crumbles into the sea – so bits of his memory vanish and his ability to operate mentally shrinks.

Each Friday I go to meet my husband wondering how he will be. We’ve had three good Fridays in a row – but today was one of the less good ones. A bit more Antarctic seems to have broken off.

I know that dementia is a disease that inexorably gets worse. I’m finding that process hard to witness in my helplessness. My love seems paltry in the face of what’s happening to him. And the challenges I face… including not letting  that anger out in his presence.

The text

In my book I include a portion from the Bible which seems to speak to the situation, so today’s would be Ephesians 4:26 “When you get angry, do not sin.”

Competition

I also include a self-care suggestion for the care-giver. This I find the hardest thing to think up so I’ve decided to run a competition for the best suggestion each month through the four months till I have to deliver the manuscript to my publisher. The prize will be a copy of the first book for care-givers, One Day at a Time.

Please send suggestions – maximum 150 words – as Comments on my blog. Thank you! I’ll make sure I credit any suggestions that I use in the book.

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One response to “Dementia Diary: My anger, not his

  1. I found this really interesting… what I’m up against a lot of the time is guilt… guilt that I feel I’ve stopped caring. I do all the care-giving – 150 per cent, in a way to try to assuage my guilt… but its a tough one I’m working on…some days better than others….

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