An up and down sort of day

Shopping this morning and the trip had potential for disaster because I forgot the list!  Once upon a time Ash was in charge of grocery shopping and did it all, from drawing up the list to going to the supermarket, coming home, putting it all away and then using what he'd bought to cook our meals.  Now his role involves pushing the trolley around the shop and crossing items off the list as I add them to the growing pile so if I forget the list 50% of his part in the trip is gone which meant that, when I realised what I'd done halfway to town, I thought I was in trouble.  In reality the lack of a list made things easier for him but it meant I had to wrack my brain to remember what was on it and make sure we didn't need a return journey in a couple of days time.  Now we're home I'm quite proud of the fact that I only forgot two things, both of which I can easily get tomorrow when I'm out so the day is going much better than expected.  The whole thing once again though brought home to me how much everything has changed and I was feeling quite flat.  I can't remember the last time we had fun or the last time he spotted an opportunity for an adventure or the last time we were both looking forward to something.  So much is different and so much has been lost.  One of the things which really angers me is when people say 'My mum/dad had dementia so I know how you're feeling'.  If you are dealing with a parent with dementia I can tell you right now that you have no idea how we feel.  We grow up assuming that at some point we will be looking after our parents but watching your best friend/ lover/ soulmate morph into someone you don't recognise and who can no longer share your life is one of the most soul destroying experiences you can ever imagine.  Ash still looks the same and sounds the same but he's such a pale version of himself that it feels odd being with him.  We still have on the answerphone the message he recorded at least 15 years ago and sometimes, when I phone home and he doesn't answer, that message kicks in.  Every time it does I listen to him talk and he sounds so vibrant, so full of life that I feel as though I've been kicked in the stomach and hang up as quickly as I can.  So, if you meet someone in my situation and you do have some experience  let them know because that will be helpful but don't ever say 'I know how you feel because ..........'.  And if you have no experience of dementia at all but are struggling in other ways then the very last thing you should even think is 'I know how you feel because ........'

Now this is interesting.  I wrote that long paragraph above just before I went out onto the field for a spot of socially distanced chat with a couple of friends.  Before I got out there I felt awful; despondent, down, even on the verge of depressed (and I don't use that term loosely) but an hour and a half with friends who make me smile has made all the difference and I'm now feeling ready to face the world again.

So my two recommendations of the day are: don't say 'I know how you feel because.....' and do spend time with friends who will support you through anything and make you smile again.

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