Life before dementia v life now

You may have noticed that my posts over the past couple of weeks have been focusing on my future and you may be interested to know that those posts have provoked the biggest response to anything I've written since I began this blog in 2018.  Those responses have been overwhelmingly positive and almost every one has come with an encouragement to keep telling it like it is for the vast majority of dementia survivors who feel as though life has become about treading water and keeping it together.  I did wonder however whether there might be some out there who are a little uneasy that I've gone too far, who think I might be better to live in the moment and enjoy what's happening in my life right now and so I thought I might paint you two pictures showing what life used to be like versus what it's like now and in this way, if you doubt me and my motives, you might just understand a little better.

Throughout our life together Ash could and did make me laugh every day from the minute I woke up to the minute I went to bed.  Even when life was difficult he could do this and it was the most amazing skill.  Life with the old Ash was lived in technicolour and it was so much fun.  We loved nothing more than to go out with friends, to be involved in fundraisers in the village, to hold parties, to enjoy ourselves and we really thought that would last forever.  He was however equally happy to stay at home, to garden, to make improvements to the house, to mow the church yard and to revel in where we lived.  There was a joy about him and a light in his eyes that said life was for living and he was always smiling.  Before Ash retired we both worked long hours so all of this fun was to he had in the few spare hours in the week or, definitely, at weekends.  He had more energy that anyone else I knew and could do a seventy hour week between Monday and Friday but still fit all of the above in at the weekend.

So life was fun but my abiding memories are of summer evenings in the garden.  He loved cooking although before that all important retirement at the age of 48 he wasn't always home in the evening but when he was he'd cook, usually from scratch and without a recipe book in sight.  All I had to do was sit at the table and eat whatever he put in front of me and I was spoiled.  Once he retired he cooked every night.  He also cleaned, gardened, washed, dried etc etc but this story is about those summertime meals.  Ash retired in 2007 but I was still working and I can sit with my eyes tightly closed and conjure up an image of walking through the gate late on a summer's evening to be met with a glass of ice cold prossecco knowing the rest of the bottle was sitting in the fridge just waiting.  We have a beautiful summer house (AKA The Shed) with a picture window overlooking the wolds and we would sit in there drinking not only the prosecco but also the view as he asked about my day and I'd tell him of the trials and tribulations of working with parents, children and staff in a day nursery.  We'd eat and then sit out until dark, listening to the radio, chatting and drinking the rest of the prosecco.  It really was lovely and made a difficult working life so much easier.

So now we cut to this summer which is so different.  When, to avoid any anxiety on Ash's part, I have to have started cooking by 5.30 every single evening.  There's a menu board on the wall so he can see what we're having and be prepared for what's coming and he's fine unless I ask him to help with some of it.  He always asks what I need him to do but I've learned that the answer always has to be 'nothing just yet'.  When I've dished up, no later than 6.30, we eat in the dining room in front of the tv and watch the news.  Every so often, and with a complete disregard for our needs, the program planners change the schedule which throws us into turmoil but I've learned how to get us back on track without too much hassle so it's not quite the end of the world.  As soon as we've finished eating I stack the dishwasher and wait to see if Ash is going to clear the kitchen.  If he doesn't I then have to work out whether to leave it for a while or whether to get on and do it myself (this is important because if I get that judgement wrong the evening can become a little difficult which is something to be avoided whenever possible).  So tea is eaten, the table and kitchen are cleared and we move into the sitting room for an hour of silence watching 'Pointless'.  That program over Ash moves on to two hours of 'The Chase' and I fetch my laptop in, put my headphones on and either find something else to watch or message friends.

This is, I know, a long post but I hope you've stayed with me and I hope you now see why I dream of a different future, where once again life is about fun and living and drinking prossecco on a summer's evening.

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Frank said…
You have a dream. Good for you! Dream on, it will give you hope for a better life and strength to carry on. Many people can't dream because the moment is too difficult and too exhausting. The current life span is still too long to consider an end. The current life might even out last the care giver.
Cornwall Girl said…
Oh Frank are you ok? That's a bit of a depressing view. It's possible but hopefully not likely💕