The things you need to think about

I told a friend this morning that I don't take the dog along on my new jaunts into the countryside not because he wouldn't love it but because having Max with him goes a long way towards keeping Ash grounded.  If he's out with me for any length of time Ash's normal routine is in chaos and that leads to anxiety, confusion and further memory loss.  So that's the dog considered but it made me wonder what else I have to think about or remember to do in order to make life as stress free as possible.  Some of these I've mentioned before but you may be new to this blog, you may have forgotten or you might just be interested all over again.  If none of these apply then please feel free to stop reading and return tomorrow.

A digital clock telling the day, date and time is in the kitchen for Ash to check if he needs reassurance.  Another is in our bedroom waiting to be plugged in as soon as we wake up but, and here's the thing to be considered, we live in the country with no streetlights and our bedroom has always been pitch black at night so there's no way the clock can be plugged in all night as it lights up like a belisha beacon so standing next to it is the clock radio which Ash bought me for my 21st birthday.  He's used to this so that's fine but the radio part of it no longer  works so I bought a DAB radio to perch on top in order for us to listen to our favourite breakfast show when we wake up.  These items combine and make a towering creation which sometimes wobbles precariously but gives Ash everything he needs for a relaxing start to the day.

He has three identical sets of clothes for everyday wear.  He takes them off at night and drops them on the floor at the side of the bed.  Every other night while he's in the bath I collect those clothes from the floor, replace them with an identical set and take the dirty ones to the washing machine meaning that he never has to decide what to wear and doesn't need to wonder whether or not his clothes need washing.  It does mean however that I have to be on the ball in an evening as there is a very small window of time in which to do the switch.  It also needs managing when we're away for a few days without access to a machine.

We have a tv in the dining room now so that we have something to talk about while we're eating but I need to be on the ball with tv channels so that the programmes he wants to watch, and those that give us areas for discussion (mainly quiz shows), are on as soon as we sit down.  This was fine all summer but we've recently moved to the winter timetable so I've had to learn the details all over again.

On the odd occasion that we're asked out I've realised that the best course of action is not to talk about it beforehand and not to mention who's going to be there.  If he arrives with no prior expectations he immediately goes into 'hosting' mode and we're ok.  If he thinks about it before we leave home there are endless questions about where we're going, when we're leaving, what time we'll be home etc.  This does mean I have to be calm and organised though so that he doesn't realise we're leaving the house until just before it becomes obvious.

There are certain jobs around the house that Ash still does such as getting everything in for (and lighting) the fire, doing the washing up, emptying the dishwasher, laying the table for supper, mowing the lawn .......... but sometimes one or more of these things simply don't cross his mind so I have to be on the alert for the gaps I need to fill.  Last night the fire didn't get lit until I said I thought it might be time for me to do it.  He looked a little surprised but agreed it would be a nice thing to do (our heating goes off in an evening so we would have been cold if I hadn't).  This morning I realised he hadn't washed up after supper so I did it and so on.  The thing is that he mostly remembers so I can't just do everything as that takes away his feeling of independence instead I need to watch for the jobs that need doing and then quietly do them.  Also what's taken a little getting used to is that the sight of me doing things he would usually do never makes him realise he's forgotten.

A menu board telling us what we're going to be eating on every day of the week means that Ash can look at the clock to see what day it is then look at the board to find what's for supper.  I have to be more organised than I've ever been in my life but he's relaxed because he knows he won't be going hungry and he also knows he's not going to be asked what he wants me to cook.

There are lots more examples of what needs to be considered in order to make life run smoothly but the one I am most proud of was managing the time difference when we went to Florida at the beginning of the year.  The digital clock obviously went with us and stood in the bedroom and the laptop was at the side of it for breakfast radio.  Now this is a little complicated so you might need to focus your attention here.  In Florida we were 4 hours ahead but by listening to the radio through the internet I could use BBC radio Iplayer to listen to the breakfast show from 4 hours before and then set the programme to start playing at exactly the time showing on the clock ie if the clock showed 6.30am I could start the programme at the very beginning, if it showed 7am I could start the programme at the 7 o'clock news.  This meant that Ash's body clock and brain were perfectly in tune from the minute we woke up and all was well (until the overnight flight home when it all fell apart and I decided that was the last time we were flying long haul!).  Since then, as you know, holidays are no longer on the agenda but that's another story.

If any of you are in the same situation as us there is a whole page on this blog devoted to practical tips which might make life easier but these won't work for everyone so you might need to find your own.  If you have any tips for me/us then please let me know.

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Emjayar said…
Such an interesting and informative blog Jane, thank you. I'm sure I'll adopt some of your tricks and routines in the future. My husband still picks his own clothes out each day, usually asking me if tops and bottoms 'go together' - they rarely do, but if we're not going anywhere special I generally tell him "good choice". To enable this to happen I found labelling each of his drawers with the contents a great help and saves a lot of opening and closing each and every drawer numerous times whilst looking for items. I told him it was to help me when putting clean washing away, to save his pride. It's been 2 years since our initial diagnosis of mild cognitive impairment but I've noticed we've had quite a bit of a memory decline in recent months so I'm debating if it's time to visit the memory clinic again for a further diagnosis.
Jane said…
I love the idea of labelling drawers and will file that away for the future, not so much for clothes as this works for us but there will be other things he'll need help finding I know. It's so important to save their pride isn't it? I've found that helps more than almost anything else but it's not always easy to do, especially if health and safety are involved. However I do manage to bite my tongue far more often than I would ever have thought possible.
Emjayar said…
I'm learning to bite my tongue and generally succeed, but when my frustration levels are stretched to the limit, to my shame, I occasionally let him have it with both barrels. I always feel dreadfully guilty afterwards as he no longer answers me back, he just takes it, and that in itself upsets me. I must try harder to adapt to our new way of life. Your blog certainly helps and is a great teaching tool for me. Thank you!
Jane said…
It really is hard isn't it. I think though that the more at peace I am with myself the better I get at it. I'm still rubbish at remembering not to ask questions and not to query something he's done but really can't remember the last time I snapped so that's something.
Ann said…
These are great tips Jane, thank you.

Emjayar, please don’t feel bad for occasionally losing patience with your O.H. It happens to me too, and I have a sneaking suspicion that my beloved actually enjoys ‘winding me up’ just to get a reaction! We’re only human, and neither of us were perfect angels before Dementia came into our lives, so why should we feel guilty now when we occasionally ‘fall off our pedestal’? Having said this.......a peaceful existence is and always should be, our goal.