Good times and difficult times

Ash has gone to bed early so I have some breathing space and some head space all at the same time which is unusual to say the least at the moment.

Anyway, here I am with the latest news and views from our dementia affected world.

We're told again and again by professionals to focus on what's still possible rather than what's disappeared but I'm finding that increasingly difficult to do mostly because so much has gone and very little of my Ash is left.

Until three weeks ago Ash was still getting his own breakfast and lunch, albeit slowly.  A week later I was putting everything out on the worktop and he was putting it all together.  Last week he stood and looked at everything with panic in his eyes and I realised I needed to sit him down and present him with those meals.  He'd long since stopped being able to contribute towards an evening meal but this was another step down.

He can no longer make a cup of tea but he can butter a scone if it's put out on a plate and, mostly, he can pour from a tea pot if we're out, although at least twice last week I had to gently redirect the spout away from the milk jug and towards the cup.

He can still hang washing out on the line as long as it's just clothes or towels,  sheets are completely beyond him so we do those together, and there are times I go outside to find towels strung between the two lines but that's not the end of the world and they do dry quicker so he's obviously on to something.

He can still switch the television on but can no longer change channels and I can't remember the last time he spoke a whole sentence.  In fact I spend an awful lot of time nodding understandingly and saying 'mmm' or 'oh really?' which seems to keep him happy but does nothing to keep my brain occupied.

One night last week I lost him and that was the most scary thing of all.  Every night before bed Ash takes Max out into the church yard and a week last Friday he did just that only this time he wasn't back in within the usual five minutes.  I waited and waited then went out and shouted.  No reply and no sign of torch light.  I came back inside, put my boots on and went looking again.  Still no sign of Ash or Max and I began to panic.  Came back inside again and phoned friends.  The phone was answered and I said 'I've lost him'.  That was it, nothing else.  The reply?  'Give me a clue, where do you want me to look?' and the relief was indescribable.  We agreed that they would look on the road and I would delve further into the church yard so I went out once again and there were both Ash and Max coming up the steps.  Relief once again swept over me, I ran up to the road to wave the friends down and tell them and all was back to normal except that now I go out every night with them to make sure they come home again.

So life continues to get narrower but there are good bits and I'm happy to share those with you too.  

I've discovered a cafe right on the beach where we can people watch over a cup of tea and then have a walk afterwards which means I'm staying fit even though I've had to give up the walks with friends; I can't use the treadmill because Ash has no idea what to do with himself while I'm on it so I go out with him and Max twice a day instead.  This means I'm increasing the fitness regime and Max is once again getting proper walks; two more friends have come on board to spend time with Ash so we're building up a care team and the pressure is off S a little; friends are still coming to visit either for lunch or for coffee and I've spent another two days with the nearly 9 year old which I'll tell you all about in another post.

That's it for now.  Thanks for staying with me and, hopefully, it won't be too long before the next bit of news.

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Katharine said…
Thank you for using your breathing space to share. It all sounds very familiar. The professional advice to concentrate on what is possible is practical, bit I do think we need to try and face our emotions if we can. It's just hard to find the energy. Good luck with the everything.. nothing stays the same.