My mum worries that my 85-year-old dad is being completely erased by his vascular dementia, as if he is disappearing before her very eyes.
To be honest, nine times out of ten dad’s short-term memory is shot to pieces, but that only serves to make his long-term memories even more vibrant and real to him. It’s certainly true to say that dad has very little realistic sense of time or place these days, so he may not always be experiencing the same decade or external landscape as the rest of us but as long as you know his life history it’s usually easy enough to orientate ourselves to wherever he is, to make a connection and have a perfectly enjoyable conversation with him. He’s not really lost the plot in life, just the chronology, the timeline, the link to the here and now.
The biggest difficulty of course is in recognising dad’s dementia for what it is it and accepting it. Mum badly wants dad still to be the vibrant young man she fell in love with, the man she married, and sadly is still struggling to accept that he is not that same man and never will be again. She looks for him to be independent and active and all the practical things he was before he had his four strokes and gradually developed dementia. It’s as if she looks at dad and sees only the loss of those things she valued so much in him, and cannot reconcile her growing regret with the reality of his increasing infirmity.
Understandably this was not what either of them had wanted for their old age. Whatever frailties befall people as you grow older, whatever successive health crises hit you, the expectation is that you will remain ‘you’ at source. Become a bit forgetful perhaps, a little slower and unsteady on your feet, find your eyesight and hearing depleting, or worse, develop a terminal illness that takes you too soon. But in essentials you still expect to feel like you until the end. And you expect the person you love to be the same, to retain the precious memories of the long life you built together, creating a shared past to sustain you both as you ease into retirement and beyond. A diagnosis of dementia cruelly robs you of that possibility forever.
After almost 60 years of marriage my dad still recognises my mum as his wife in the moment but no longer necessarily feels the safety and familiarity of the home they have lived in together for the last 48 years. Sometimes he recognises being comfortable in his own space with his own things around him, but at other times he talks of ‘home’ as being the faraway home of his childhood, and talks of his ‘family’ as being his parents and siblings, all alive to him once more. For mum, at these times it feels almost as if dad has erased her and the children she bore him from his memory, as if we have no importance or relevance in his present, and she feels the inevitable hurt of what she perceives as his unintentional rejection.
Dad is mum’s chosen life partner, but as he regresses further into his past she feels the fear that he is in danger of leaving her behind – or is it beyond – potentially losing all memory of the marital link between them. Meanwhile my brother and I are learning to live with an internally time-travelling dad who occasionally shows us fascinating glimpses of a multitude of pasts, some we recognise as being from our childhood, some from long before we were born. In our late fifties with grown-up children and grandchildren of our own, we are both just so grateful still to have both our parents alive when so many of our contemporaries do not.
So we try our best to help mum look beyond what is so clearly gone on the surface and take comfort in the depths of dad that still exist underneath it all. Yes, we have to acknowledge that dad is no longer independent or active or practically-minded as he once was – but he is still alive and is still incredibly loving and caring and considerate of others. Dad is neither aggressive nor violent in his manner, and although he doesn’t always get the familial connections right he does know who we are, which is wonderful for us and something special we need to make the most of while it lasts. Sadly he’s just a lovely old man who through no fault of his own is slowly retreating into the memories of his past.
Like it or not we are where we are, all of us together, and all we can do is love him and hold him and be grateful that we still have him in our lives… ❤