For the past five years my elderly dad, dealing desperately with the ongoing difficulties of vascular dementia, has experienced an ever-moving mix of three potential states of being – fully aware of existing in the here and now along with the rest of us, stuck happily in some time-warp parallel universe where for him the past is strangely superimposed onto the present, or suspended scarily in an unfathomable limbo…
When dad was first diagnosed with dementia, of course he was mainly present in the present but with the odd random serious lapse of memory that was certainly more than one step beyond common-or-garden forgetfulness. The first real sign of dad’s depth of confusion came a few days after he returned from his brother-in law’s funeral. Dad was chatting to us about people he’d seen there who he hadn’t seen for ages when he suddenly said – I think I’ll give Ian a call to see how he’s doing. We couldn’t get dad to understand that it had been Ian’s funeral he’d been at to see all those people from his past in the first place…
And then dad started doing the occasional odd thing in place of the everyday thing he’d been doing for years. Like when making a cup of tea, dad would have the cup sitting on the counter upside down but not understand why he couldn’t put anything in the cup. Or worse, he melted the plastic bottom of three electric kettles before we finally stopped him trying to do things in the kitchen. On two occasions dad had filled the kettle then sat it on the hob to boil – the acrid smell of melting plastic had brought my mum running. And on the third occasion dad filled the kettle, balanced it on top of the toaster, and switched the toaster on.
Dad’s dementia is the vascular type, brought on by several small strokes, so as well as cognitive difficulties dad also has worsening mobility issues. In the past he has forgotten how to walk when half way across a room, standing precariously, leaning on two walking sticks and unable to move further because he doesn’t know what to do next. He has forgotten where he was in the process of walking to the bathroom, confused and bewildered and agitated because he needed to go to the loo but couldn’t find his way through the family home he’d lived in for 40-odd years. And we soon found that when dad was in a more lucid frame of mind again, he consistently forgot that he had been unable to do these things. When he was lucid he wouldn’t believe that he’d been so incapacitated, in his mind he was still fine which was so frustrating for him.
It was almost more difficult in the early days when dad was far more aware of his surroundings and what was going on in his brain. In a sense it has become easier as the dementia progresses and dad is spending less and less time in the here and now. We get the occasional glimpse of grounded reality but on the whole these days much of dad’s day is spent reliving random memories of his past in real time, often including people and places long gone. Knowing his family history we can join him there, and have perfectly enjoyable conversations that leave dad feeling visibly content. The other day dad was convinced I was his sister Edith, not his daughter Ruth, so we were chatting happily about going to visit an uncle and aunt along the coast. Everyone dad mentioned has been dead for years but his memories are so real they carry him through.
At other times, though, dad seems to lose his visual and experiential link to the past, but at the same time cannot quite reconnect fully with the present. These are the days where dad just looks lost within himself. He’s neither here nor there, stuck in limbo, and you can see the confusion in his eyes, traced on his furrowed brow. His speech loses its clarity, slurring a little, and often the wrong words come out so communication loses its vibrancy and leaves dad feeling even more lost. He says sometimes he hears my voice and knows I am talking to him but cannot quite understand what I’m saying, everything just sounds jumbled in his head. He looks intently into my eyes trying to make sense of everything but then soon he looks away, despondent.
It’s a horrible situation for him to be in but in spite of all of this, on the whole I find dad is still very much dad. Somehow deep down he has retained some of his dry sense of humour, which always fills me with such an overwhelming feeling of warmth and love. I asked him the other day how he had slept the night before, and he said with the merest hint of a wry smile – With my eyes shut! Oh, how many times over my lifetime I’ve heard that same response, and how wonderful to hear it now. I’m not in denial, I do know that dad’s mind is slowly disintegrating, but personally I prefer to focus on what we can still share together rather than on what has been lost between us.
Dementia really focuses me on the importance of spending whatever time I can with dad, while he’s still with us, while he still knows us. So I visit him, and sit with him, and chat with him. I hold his hand, and hug him and let him feel the familial security of the father-daughter bond that has always been so strong between us. We are where we are in life, but he’s still my dad and I love him as much today as I always have done… ❤