Changing feelings

When your husband/wife/life partner is diagnosed with dementia everything changes.  Make no mistake this change doesn't happen overnight, the road to the diagnosis is a long, winding and very lonely one as you watch the person you love turn into a stranger before your very eyes but you cope.  In our case I thought it was my fault, that there was something I wasn't doing that I should be or something I was doing that I shouldn't but whatever the problem of course it was my fault, the only thing was I didn't know what that problem was so I couldn't do anything about it.  Then you get the diagnosis and by that time your whole relationship has changed and it continues to change until it no longer resembles what you once had.  You're living with a stranger and you don't know how to behave so you become a different person just to accommodate this new being who now shares your life and all this happens so slowly and insidiously you don't even notice what's happening until it's too late.  I remember, a few months after we'd learnt Ash had dementia, phoning home from work and getting the answer machine message which he'd put on there about 10 years before.  I heard him talk to me just as he used to, I listened to all that fun and vitality that had disappeared in recent years and it felt as though I'd been kicked in the stomach.  In fact I hung up and hid myself away until my world had righted itself.  Two years on from that day I'm in a very different place but what I find difficult is understanding how I should feel about this new man in my life.  General feeling is that something of the old remains but in Ash's case, if it's there it's well hidden and I really don't recognise any single part of him.  That doesn't mean I don't like him because I do, he's just not the man I used to be in love with.  General feeling also is that you will continue to love them just as you always have but, if he's now a stranger to me, how can that be?  So as usual I've thought my way round this and have decided that I need to forge a new 'us'.  I do think I'm quite a way down the road in doing this I just didn't want to admit to it because I felt guilty that I don't love him as I used to but I've recently come across some phrases I'd scribbled on the back of an envelope sometime in the past (can you tell I've been clearing out my office/sanctuary).  These, I've decided, will now become my new mantra, they will be the phrases which will get us through this and they are as follows:

  • I'm here for you
  • I love you
  • You're not alone
  • I'm not going anywhere
  • We'll get through this together
Ash doesn't like to talk about his dementia or what's happening to him/us so these words won't necessarily be said out loud but as long as I enter into the spirit of them we'll be ok.

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Frank said…
Thank you for sharing the details of your life as it is changing. I enjoy your writings and look forward to finding them. You are so brave to be doing this. No one knows what they're saying when they agree to the for better or worse part.
Cornwall Girl said…
I feel that your latest post is a really powerful gift to all who walk this path. You have great courage to be so open about your feelings and by doing so you have opened the door for many of us who walk this same path to feel comfortable with our own fluctuatng feelings. Many of us Im sure do feel love despite the(in some cases) total change of personality in our loved ones that we once knew so well. For me personally the kind of love I feel now is unconditional just as I would feel for anyone who needed my support.
More power to your pen Jane.
Jane said…
Thanks for both these comments. think this is the one lots of people find difficult to admit to so, if we're not careful, we can spend a lot of time feeling inadequate just because we don't feel we love them enough. Can't quite believe the number of views, comments and emails I've had from this one post so it really looks as though it hit a nerve. Frank, you're right, we don't know what we're agreeing to in those marriage vows but it works both ways and I hope if our situations were reversed Ash would do his best to look after me and make sure I was ok.