How should you feel?

 I thought it might worth having a think about our feelings when it comes to considering that huge next step.

For me the most daunting thing of all was how I was going to feel about it all.  The last few years have been so awful I didn't thing I could cope with any more overwhelming emotion so if I could keep us on track with the way things were then that might be the best option.

People told me that it would be the worst day of my life, that I would cry and cry and that there would be feelings of guilt beyond what I could possibly imagine.  Never mind how awful it was going to be for Ash to think he was no longer wanted, how on earth was I going to survive all of that?

What I hadn't taken into account is that we're all different and, mainly because every case of dementia is different to the next, our feelings and experiences are different too.  I also wonder whether some of us don't like to admit that we're not devastated when it happens and that life is suddenly so much easier and we can finally relax and begin to look forwards again.

It helped that not only had I planned the transition to the nth degree but also that the plan went more smoothly that I could possibly have imagined.  It also helped, I think, that I'd already been through this with my mum so I sort of knew what to expect and what to do differently this time.  Whatever it was, my reaction has been so different to what I thought it would be that I needed to share with you.  I need you to know that, when you get to this point, you should understand that your feelings are yours alone, they don't have to be compared to anyone else's and you have no need to feel guilty if you don't find yourself crying over your decision.

As for my feelings, in case you were wondering, this is how it's gone.

On the way to the care home I could very easily have dissolved into tears but I realised this was about Ash, not me so I put my shoulders back, my chin up and we got through it with the minimum of fuss.  I got home and cried with a friend but not for long.  I cried twice while I was in Cornwall.  Once because of memories and once as I was leaving because I realised I wouldn't be back and the site was a link with the past. I wobbled when Jake decided we should race to see the sunrise when he and the 9 year old came to stay just because it was exactly the sort of thing the old Ash would have done.  I wobbled the first time I went to see Ash and we walked into town for a coffee and I cried the other night when I caught sight of a piece of concrete he'd painted with his initials and the date he built the veranda at the back of the house.

First of all what I haven't had to deal with is a feeling of guilt because Ash is so much happier now than he was at home.

What I haven't felt is that the day I left him at the care home was the worst day of my life.  That day was the one where we were given the diagnosis and our world collapsed around us.  

What I haven't done is cried and cried just because I really am cried out.  For the first few years after diagnosis Ash was horrible.  For thirty years he made me laugh from the minute I got up to the minute I went to bed then gradually the laughter got less and less frequent until we got to the stage where he made me cry every single day.  Not his fault but still exhausting and awful to experience leaving me with very few tears left to shed.

I'm also not grieving about a past life because that is long gone.  I've been losing Ash bit by bit over the past ten years and there is so little of 'my' Ash left that most of my grieving is done.

What I have found within myself is a determination to live.  Ash taught me so much about how to enjoy life, how to have fun, how to look for adventure in the smallest of things and in some way I feel that to make the most of every day is the best tribute I could pay him.

So remember, if you're on the verge of making this next step, only you will know how you feel and if you're distraught that's ok but, equally, if you're not that's ok too.

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Lisa said…
Beautifully expressed. Thank you for taking us on this journey with you. We are still a fair way off this point but it something I wonder about. All strength to you.
Jane said…
I have to tell you that even in October, when I went away for the long weekend, I thought that Ash would at home this Christmas but probably not next. He went downhill so quickly.

I think it's always worth making plans.