Musings on a new life

Yesterday was a non day really and today seems to be heading the same way.  There are neither highs nor lows, they're just time in space and my mind went blank when I sat down to write this post (the same reason I didn't write anything yesterday).  No traumas, nothing amazing, just normal days.  Not that long ago this is something I dreamed of and it's nice but it's really not conducive to producing an interesting blog so I thought that today I'd try something different.  A few months ago I wrote something to enter into a competition in a writing magazine.  I didn't hear anything so assume the judges didn't like it but I thought you might like to read it.  The thing is it's much longer than a normal blog post so please don't feel you have to read it but it might be useful/interesting and if you think it might help someone else please feel free to share it.

The Absent Husband
My husband is missing, absent without leave, no longer in my life.  He began to fade away, gradually at first but with gathering speed until eventually the person I fell in love with over forty years ago is no longer beside me.  In his place is a stranger, someone who looks like my husband and sounds like my husband but is, in every other way, a completely different being. 
This is not a total disaster you understand, just somewhat bewildering.  The man who made me laugh every day from the minute I woke to the minute I went to bed has been replaced by a man who is frequently grumpy, often cross and seemingly at odds with the world, and me, on a daily basis.  The man who had more energy than anyone else I knew, who was never still, who was so full of life that friends and family looked on in awe has been dislodged never to return.  The joy of the world, so in evidence in the person who went before, is missing from the eyes of this new man.  Everything is a chore, chaos and confusion reign and life, since that diagnosis of dementia, will never be the same again.
There are positives to this new life in which we find ourselves.  I’ve given up work so we spend more time together; I’m rediscovering old skills and have found I’m still able to cook.  Not only that but I’m trying out new recipes so our diet is more varied; this new man who now lives in my house tells me he walks the dog for miles each day but I’ve noticed that the dog is putting on weight  so suspect the ‘miles’ might not be quite true and have taken to walking him myself meaning I’m getting fitter and losing weight in the process; I’ve taken over the finances and realised that maybe lots of things we’ve been buying aren’t strictly necessary; all good things but, most interestingly, I find I’m turning into a nicer version of myself.  I have more time for friends, I remember birthdays, I notice more, take on board other people’s opinions and feel that I’m better company.  So definitely not all bad.
We have good days and bad days.  A good day begins with a smile, with this person beside me in bed reaching for my hand and commenting on something he can see out of the window.  A bad day starts with him lying rigid, not knowing where he is and unable to think of what’s to come without panicking so then my brain has to kick into action as I think of how I can reduce his stress and, consequently, mine.  There are practical things which help.  A clock which tells us the day, date and time; the radio set to the same station every day; his clothes laid out ready to put on (four sets of exactly the same outfit sit in the cupboard waiting for selection), all of those things help us to face the day. 
Then there are our friends.  I hear so many stories of friends who disappear when a diagnosis of dementia makes its entrance but that most definitely hasn’t happened to us.  I may be without my husband but we're not without our friends and they too have accepted this new man in my life.  He isn’t a friend to them in the true sense of the word, not like the one they’ve known for years and years; he won’t ever be there for them as the other one was; he can’t help in their lives but they accept him as a reasonable replacement and include him with enthusiasm and alacrity.  They have learnt not to ask questions, not to confuse him and not to expect the skills and attributes of their old friend but, instead, allow him time to think, space to be.
I’m not sure this new man is one I would have married all those years ago or be still married to if I had.  He isn’t someone I really know so it’s hard to tell but I do know that we’re not a team, that we don’t head towards a shared goal, that partnership working is missing from our relationship and that has taken some getting used to.  Sometimes I want my real husband back so badly it hurts but at other times I know I’m lucky to have had him at all and I think of all the people for whom the life we’re now living is a normal existence; the feeling of treading on eggshells, the perception of always being in the wrong, the non-sharing, the arguing.  I used to be married to a man who thought I was amazing, who always had my back, who was there to put his arm around me and tell me everything would be alright.  I keep expecting him to come up to me at any moment and tell me it was all a mistake, that he’s better now and we can go back to how we were but in my more rational moments I know that’s not an option.  The impostor is here to stay and there is no way out of this situation, only a way through.
Sometimes having a stranger around the house, someone who doesn’t understand how I think, who doesn’t know how I’m feeling makes this a lonely existence.  Friends are always there if I need them but my very best friend has moved out.  The only person I could ever cry in front of can’t cope with my tears; the one I told all my worries and fears to no longer wants to hear and my soulmate no longer exists.  I’ve discovered I can be lonely without being alone.
I’ve also discovered however that I have strengths I never knew existed.  I can make decisions without checking with anyone else; I can drive long distances without being afraid; I can work things out for myself; I can ask for help when I need it; I can produce a solution to almost every problem if I think hard enough. 
Before my husband disappeared he seemed to love everything about me.  He was proud of me and encouraging in everything I ever wanted to do.  This was excellent for my self esteem but without his open admiration I’ve had to learn to love myself, to appreciate my own strengths and work on my weaknesses.  I’ve always wanted to write a book but, with the attention span of a gnat, whenever I’ve tried to get started the enormity of the task ahead has overwhelmed me and I’ve given up before I’ve begun.  He accepted that part of me but now I only have myself to rely on I’ve realised that nothing is achieved without effort, that procrastination truly is ‘the thief of time’ and if I want to write I have to start somewhere.  The result of these deliberations has been a blog.  Just over twelve months ago I had no idea what a blog was and I didn’t know where to start, now I write a post almost every day and as a result seem to have formed my own support group consisting of like-minded people with the same positive outlook which helps enormously.  They write comments on my musings, they email me, they check up on me if I haven’t written anything for a few days.  I wouldn’t have had any of that if my real husband was still in my life.
So, still not all bad BUT the one thing that looms is the future.  My new partner has just turned 60 which is young for dementia and perceived wisdom is that there is a general life span from diagnosis of five years which is not what I imagined when, at age 15, I met his predecessor.  I thought we would grow old together and we certainly seemed to be heading that way.  We had plans for that future,  we were looking forward to a part of our lives where we didn't have to work quite so hard, had time to spend with family and friends and could travel to all the places we still needed to cross off our list.  Those plans have now been assigned to the scrap heap and I’ve realised there is no point in dwelling on them.  We are where we are and the quicker I accept that the sooner I can get on with enjoying what I do have rather than wishing for what I don’t.
In summary I am without my husband, my best friend, my rock, my shoulder to lean on but within myself I have found depths I never knew existed.  I have a level of commitment, a determination and a resolve that were hidden, tucked away because they’d never before been needed.  I’ve learnt that I am the author of my own destiny, the creator of my own character and through all of this I can sink or swim.  The choice is mine and mine alone.

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Ann said…
Wow! Are those judges crazy? They clearly have no concept of ‘Living with Dementia’, nor brilliant writing when they see it.

In my humble opinion Jane, this piece ‘The Absent Husband’ is first class. It actually brought tears to my eyes, because you could be describing our relationship. You’ve put into words exactly what’s happening to my beloved and I. In fact it’s so perfect, Im going to print it out, so that the next time I have to explain what it’s like for us, I can read out your words. You’d have to be completely heartless not to be moved.

Thank you so much.

Keep writing Jane, I see your name on a published bestseller one of these days.
Jane said…
Thanks Ann. What I find really interesting is that we're told again and again that each case of dementia is different which I'm sure is true but the emotions it triggers in others turns out to be the same in so many cases. I think too often that may be missed and then it's easy to feel as though we're on our own. The support I get through this blog has really shown me that's not the case.