Live in the present – but it’s so hard

Living, as I do, with a partner whose brain is deteriorating is fruitful territory for reflections about life, training and relationships.  My husband and I got together six years ago but he has, now, no memory of anything much of that whole time.  

On a minor level, his condition makes daily living challenging.  He can’t actually change what he does, since to change your behaviour means that you have to remember what it is that you wanted to do different.  So he goes on making the same ‘mistakes’ in small things, like for example where to put things away.  But on a more important level (or it seems more important to me), he actually doesn’t retain much information about me either and regularly asks me things about my past life that I have told him a lot of times. This makes me feel ‘not known’.  And yet he is certain (and I do accept this as a truth) that he knows me very well.  Which raises the question – what or whom is it that he knows?  It’s certainly not the sum of my history, not my ‘stories’, and he seems to have a ‘knowing’ that is separate from my stories.  Which is a surprise to me as I would normally say that, without our stories, we are not the people we believe ourselves to be. 

So J doesn’t know any of my ‘stories’, but, more than that, of course he doesn’t know any of ‘our stories’ either.  He knows this is a loss for him and he feels sad about it.  And it is a loss for me, as I realise more and more what comfort and pleasure there is in looking back at good times and re-living shared moments.  Thus a walk with J very often starts with the words ‘I have never been here before in my life’.  It all becomes a new source of pleasure for him.  But for me, walking beside him, it is also a palimpsest of all the other times we have done that walk together, and inevitably that includes the sadness of remembering how different it was, maybe two or three years ago.  

For me these days, much of life is a return to familiar and loved places, and for him it is a host of new experiences.  Except that it’s not as easy as that, as he is aware of all that is lost in terms of memories.  As well as being sad, it also makes me reflect, and raises for me the question of why we do things at all.  Big events – our wedding, his 80th birthday party, holidays, trips, visits – have all gone.  I guess they were pleasurable for him at the time, but they have now simply disappeared for him.  And it so often comes to me to recognise how much of our everyday conversation refers back to a past event.  I trip and stumble, trying to start a perfectly innocuous exchange, to talk about something and then suddenly I am asked ‘Do I know her?’ ‘Who is that?”  Even trying to make future plans runs into the same challenges. ‘Have we been there?’ ‘Did we do that before?”

And so I try to sit still, breath slowly, think ‘This is the moment.  This is all we have.’  And who can deny this?  Except that as humans, in our minds at least, we do have memories of the past and they do inform our future.  And life without memory of that past is a challenge to all of us.

4 Replies to “Live in the present – but it’s so hard”

  1. Thank you so much for writing this Chris. It is so honest and touching about such a difficult aspect of your life. It must have taken great courage. It is also of great value to me because there is nobody close to me who has suffered dementia. So, I do not really understand as well as I should something that seems to afflicting more and more people. This has given me a much deeper understanding and I am grateful for that. What you say about the fact that he knows you very well, though not in a way that you can readily understand certainly makes me think. You (and maybe J as well) are really pointing to the whole notion of ‘what are we?’ Much teaching, in general and especially of late, seems to be centred around the illusion of the small self. That self is reinforced by our stories and our perceived history so if they are taken away then we are left with the universal self. Is it possible that J is tuning into this as his stories and remembrance of yours is slipping away? I do wish you both well with this sadness and I hope you may find peace with it.
  2. Chris, thank you for sharing your current experience. You have the ability to describe it with such clarity.

    Your question of what the point is of doing things, of events that have past, reminded me of my experience with the recent house move. Packing and unpacking stuff, it was a walk through the life that has been so far. As I let each item pass through my hands, trying to decide whether to keep it or not, memories were invoked of experiences, of relationships that had come and went. At some point I had the feeling I was standing atop of a mountain looking around at the scenery of my life that had been so far, I could see the many paths that I had walked. Many things that had passed and that I had completely forgotten. There was sadness, but most of all an overwhelming sense of gratitude. Especially for the times with loved ones who have now passed away. In all the things that pass, the shared love and the closeness felt is what remains.

    I thought it is very moving J’s certainty that he knows you despite his failing memory of your life events. It appears that with the growing inability to focus on changeable experiences, his focus on that which does not come and go, the love and the closeness you share, seems to be intensified. I believe that, that love and closeness is what is truly shared. Memories, like thoughts and feelings, are always personal and differ, even if it is of the same event, so in that sense they are never really shared. This may be why J’s loss of memory does not hamper his knowing of you, knowing of that which is truly shared and cannot be lost. J appears to know the “you” who does not depend on personal memory, either his or yours. That is true love and companionship within a very challenging situation.

    _/\_
    A

Leave a Reply

Your email address will not be published. Required fields are marked *