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Opinion Losing a parent to dementia requires a unique form of emotional stamina

Every time you see them, you grieve a little bit more, but you never, ever show it.

YESTERDAY, FOR THE very first time, I’m not sure my father knew who I was. I spent nearly three hours in his company, and he called me by his carer’s name twice but never by my own.

I knew this day would come. But it didn’t become the headline news in my own head I thought it might. There was a sad inevitability about it, and possibly even a sense of relief that it had happened and, despite his lack of recognition, I had remained able to function. I had proved to myself that I could put his needs above my own emotions. Which is what caring for a parent with dementia is all about. Every time you see them, you grieve a little bit more, but you never, ever show it.

It probably didn’t upset me in the way I feared it might because he seems so content. And if, in his head, his ‘person’ is no longer myself, but his carer, in many ways that is a good thing. Because she can be with him day in, day out, when I cannot. And if he felt any unease around her, if he felt in any way threatened or insecure, I can only assume that his brain would not be so willing to trade her place for mine.

I need to let him be, as he is now

I had to resist the urge to push him a little. To test how much he would remember, recognise, recall. I had to consciously stop myself from asking questions. Because I felt that maybe I was probing more to satisfy my own morbid curiosity, rather than for his own good. Out of my need to try and establish how much of him has gone, so I can somehow try to progress onto the tricky business of ‘coming to terms with it’. And I realise now that I have no such entitlement to pore over the remains of his once brilliant mind. I need to let him be, as he is now. And I need to deal with that myself, without dragging him into it. He has to come first. For the very first time since we both graced this planet, he comes first.

I hadn’t seen him in four weeks. By far the longest I have gone in the 18 months since he first got sick. I needed some space. ‘Respite’. I think that’s the technical term medics use for my recent bout of selfishness. I had to put my dad’s predicament into a box and close to the lid on it for a time to give myself a break from watching his decline. Because every time I see him I have to dig a little deeper to find the stamina to keep the smile going. To roll out the performing monkey, and whittle on about the weather, or the kids, or the view, instead of simply laying my head on his lap and asking this stranger where my dad’s gone. And that process of losing your dad, slowly but surely, takes its toll.

Saying goodbye 

I was never one for goodbyes. Never really saw the point. If you’re going, sure be off with ya, and sure we’ll see you when we see you. My mother was given three to six months, and then died five days later. And while at the time it was difficult on those of us left behind – as we felt robbed of the ‘goodbye’ we somehow believed ourselves entitled to – in hindsight it was definitely the right thing for her and, in many ways, for us also. For her, because her pain should not have gone on moment longer than it had to. And for us, because while we may have wanted to delay the inevitable, after a year of illness we were all exhausted and running on empty. She had no quality of life, and by that point her time had come, regardless of whether or not we were ready.

With my dad, things are entirely different. We have the long goodbye. The longest imaginable. And while he is mercifully content, as his life has been pared back to a very simple, peaceful existence, the battle with dementia rages on within us, his children. Those of us that have been left behind. As a little piece of him slips away week by week, month by month. As we watch his once strong character gradually fade into oblivion, his personality slowly watered down by whatever it is that is laying siege to his brain. So soon enough he just looks like any other old man. Decrepit. Fragile. And slightly apprehensive about the world around him.

I look into that face that’s still that of my dad, but I no longer see him in there. There is an unavoidable emptiness to those eyes. A lack of spark or recognition. And sitting opposite that face, looking at the familiar and yet so unfamiliar, can be the loneliest place in the world. They say no parent should ever have to bury a child. Similarly no child should ever have to watch their parent regress to being a child. For it feels so entirely unnatural and goes against everything that went before; a role reversal where responsibilities are switched and life’s turned upside down. My dad is getting older and yet younger at the same time. As his body ages, but his mind takes on the poignant innocence and vulnerability of a child.

Learning to accept it

I find myself more tactile with him than ever before. It is as if I am somehow trying to connect with him on any level I can, grab hold of him, reach inside him beyond that frontal lobe which is ceasing to function, and find him. My dad. I watch him slowly inch his way along our local hill, the confident, powerful gait long gone, replaced by a tentative, cautious shuffle, and I feel a powerful sense of protectiveness towards him and a pain in my gut I cannot even begin to describe.

The reality is that Dad is gone and a Caretaker has replaced him. At first, I didn’t much care for this imposter. Because the child in me wanted to take him by the shoulders, shake him and shout ‘Dad! Dad! Where are you?!’ I felt angry at this stranger and wanted rid of him. Wanted my dad back, warts and all. But now, over time, I’ve come to accept him. The Caretaker. At least he looks like my dad. At least we have some of him left, even if he can’t remember my kids’ names or where I went to school. And having his physical presence near me means such a lot, is such a huge comfort, regardless of whether or not we’ve lost touch with his personality.

Maybe that’s why I didn’t make a big deal in my head yesterday about the ‘milestone’ I’d long been dreading. Maybe on some level, I’d accepted his departure already. Maybe I accepted it the day I got the call from that stranger to say he’d taken ill. Maybe I accepted it the day we got the diagnosis. Maybe I accepted it the Easter he bought me five different Easter Eggs. Or over the summer when he asked me each and every day where we’d been on our holidays. Maybe each step was a tiny step further for me in accepting the destination we are inevitably headed for. Or maybe I’m kidding myself and I’ll never accept it. All I know is that yesterday was a turning point, another bend on this long and sometimes tortuous road, and all I can do now is to dust myself off, take hold of his hand and keep going for as long as he needs me. Because he held mine for long enough, and now it’s my turn.

Claire Micks is an occasional writer.

Video: Living with dementia – two families talk honestly about this heartbreaking disease

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