A new way of life

 What do you do when dementia enters your life and the person you've loved for more than forty years changes, seemingly overnight, from a chilled, loving, supportive and happy individual into a nasty, irritable, truly horrible stranger?  

I obviously can't speak for everyone but if you're like me you draw on reserves of patience you didn't know existed, sometimes you shout back, lots of the time you cry (mostly in private) and, eventually, you switch off emotionally and get on with life, dreaming of the day your nightmare comes to an end and you can become yourself again.

Then one day you decide you can't stand it any longer and you need to get away, even for a short while.  You have friends and family to help so you plan and plan and you manage to escape, hoping against hope that nothing awful will happen while you're gone and that when you get back you'll feel strong enough to pick up the reins and carry on.

You manage to pull off the escape and a whole seven lovely days follow where your head begins to clear, you have fun, you relax and you remember who you used to be.  There's time to think, time to read, time to do absolutely nothing.  No responsibility, no-one else to think about and for the first time in a very long time it's all about you.

BUT you have to come home and, even if you manage to keep those thoughts at bay through the week, on the way home, as always, you're wondering what you're coming back to, even whether you really can face it all over again.

You'll know by now that I came home to an unexpectedly lovely welcome but what has been equally unexpected is that, a week later, the loveliness is still here.  I'm not sure what happened while I was away but much of the old Ash, the one that's been missing for the past three and a half years, seems to have returned.  The dementia is still there obviously but what's missing is the anger and frustration.  None of it seems to be a problem; not the words he can't find to tell me something, not the whereabouts of the fridge which has stood in the same place for thirty years, not the thought of L coming for the day and me going out, none of it.  In fact he spends most of his time laughing at himself and the things he can no longer do and you can have no idea how much nicer life has become just because of that.

Ash is not the same of course, there's been no reverse of his condition and I'm waiting for the next part of his inevitable decline but not with the same sinking feeling which has been part of my life for so long.  This new phase still has it's challenges but at least there's some feeling of normality about it all and as long as we're able to keep smiling then I'm sure we can deal with them.

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Carol S said…
Hi Jane. I wonder if Ash has moved out of the angry phase and accepted that he has dementia and that life isn’t too bad anyway - because of everything you’ve done to make it as positive as possible. . I think Fighting against something that is inevitable must be an enormous strain and acceptance very liberating. I hope this phase continues for you both - you’ve worked so hard for it.
You’ve inspired me to be more proactive and to actually get around to sending for a PIP form and start to think of some ways to build myself some time off. I’ve also enrolled on some online courses run by Dementia Carers Count. I’m sure your success is down to the amount of knowledge you’ve accumulated about dementia and how best to manage it so I’m going to find out more myself. As usual - thankyou so much for sharing. XX
Jane said…
Wow Carol, that's a long list of positives. well done you. I think you're right that Ash is finally accepting what's happening to him and that acceptance has made him happier but I do wonder whether it came about because he discovered over that week that he can survive without me. It feels as though he resented me because he thought he needed me in order to function whereas now he knows that, although I make his life easier, it's not all down to me.