Reflections on a new life

Emails and messages have come in about the article that's been included on the Young Dementia UK website and some of those messages have taken me by surprise.  I thought I'd written a positive and optimistic description of our life through this lockdown but many people said it brought a tear to their eye and I couldn't figure that out.  That was until this afternoon when I've managed to multitask with gardening and thinking going side by side and I suddenly thought I understood what had happened.  On the whole the people who were sad or upset were the ones who knew us 'before'; before dementia, before we began to change and before our life began to fall apart.  That's not to say that we haven't seen them since because we have but most people will still have the old Ash at the forefront of their minds when they think about us whereas I have grown used to the new Ash.  In fact more than that I think I've left the old Ash far back in the past and that has been in the interest of self preservation.  There's no point in wishing the real him was still here, still by my side and still planning for the future with me; if I let myself think that way I know I'll fall apart so I've got used to batting those thoughts away as fast as possible and redirecting my emotions.  When dementia enters your life you're told to live in the moment, to appreciate what you have now this minute, but for a long while I didn't understand exactly what that meant.  I guessed it meant enjoy what you've got, enjoy the life you have now but I also thought it meant that I should feel this life was just as good as the old one and that so obviously isn't true that I didn't ever really throw myself into any of it.  Today as I've puzzled over the messages and comments I've realised that I don't/can't let myself think about the real Ash or our old life but instead I've accepted this new man.  He's not my soul mate, he's not my best friend and he doesn't make my heart sing but he's ok as a house mate and I could be sharing my life with someone much worse.  Not only that but I've got used to him and I don't expect anyone else so I wrote that article with the new Ash in mind all of which I think goes some way to explain why I didn't get quite the reaction I expected.  Am very, very happy with all the comments though, they're what make the writing worthwhile.

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Unknown said…
My piece was in the newsletter too (which is where I came across yours) and I understand totally this living with 'option B'! It was our 38th wedding anniversary yesterday-he was in the care home; I was here. Ten minutes of Skype showed me that it was a day when there was some remembrance but not the quick witty asides I'd been used to.He couldn't tell me if he'd had a card or chocolates... I miss the old Duncan but he is not the same ...perhaps some special memories left deep inside that might be triggered one day-can only hope, but in the meantime, we are still married and I still love him! Caroline. xx
Jane said…
That last comment of yours is the feeling I struggle with most. In no way is this man I now live with my husband and he's definitely not someone I would have chosen to spend my life with so do I love him? I care about him and I'm committed to doing the best I can for him but not sure that's the same thing. It's a question I struggle with every day.

I read your piece and loved it. You're obviously further down the line than we are and I'd love to know more about how you got there. If you can bring yourself to tell me you could email me at but don't worry if you'd rather not.