When we reach the 3rd of August of this year (2012) it will be exactly ten years since my mum married Mervyn, my stepfather. I was 15 and their solo bridesmaid at their intimate, informal and lovely wedding. If you had told me then that in ten years time mum would be a full-time carer for my stepfather because of a debilitating and life-limiting terminal condition I’d have said you were having me on. These sorts of things only happen to other people, right? Or in the movies? But as cruel fate would have it that is the case.
Most people I know are aware that I was a later-in-life welcome surprise to mum at the age of 44 – back when I was at primary school it was met by much confusion by my peers that my mum was old enough to be my grandmother but these days it’s much more common (particularly among ripe old celebs). Mum is now nearing her 70th year (in fact the same date as their wedding anniversary) and Mervyn is now 73. I’ve always known at the back of my mind that having older parents increased the likelihood of illness and horrible diseases entering my family’s lives during my youth, as opposed to middle age, but nothing quite prepares you for when, and if, it actually happens.
My stepfather has PSP, that’s short for Progressive Supranuclear Palsy (try saying that when you’re drunk) – a rare form of Parkinson’s which impacts on pretty much every aspect of someone’s physical and mental capacity. If you’re familiar with Parkinson’s you’ll know that it’s incurable and will not get better. It’s hard to pinpoint quite how long he’s had it since it’s a very difficult condition to diagnose given its crossovers with other illnesses which create similar symptoms, but we would estimate that he’s had it for about 3-4 years in total. As with any progressive illness; his symptoms have worsened over the past few years and what were previously minor things have become major players in his quality of life.
PSP affects Mervyn’s eyesight, mobility, continence, mental capacity, memory, eating, drinking, sleeping… well, pretty much everything. So you can imagine how awful life is for him and how much my mum has to cope with in caring for him. One of the most frustrating things about his illness is how few people have heard of it, though, realistically it is a relatively rare condition (it affects approximately 6 out of every 100,000 people). Googling the acronym ‘PSP’ will confirm this – notice how the Playstation Portable ranks higher in the search result? More people want gaming than information about a cruel and destructive disease, go figure.
When someone close in your life is affected by something like this you inevitably have those moments of reflection. Why him? Why us? Why our family? Then you go through the immense levels of gratitude for your own health and vow to do everything you can to live life to the fullest so that if anything should happen to you in the future, at least you’ve lived. Then, well then you have the frustration of seeing others moaning about how they don’t have enough money, or have a headache, or have to go to work, or have a spot on their face (hell, even I may moan about those things sometimes), and want to clout some perspective into them. Then again it’s those minimal non-important things that make us all human and make us temporarily forget the bigger things that make the world a little darker and a little sadder.
I have inexplicable amounts of admiration for my mum as Mervyn’s full time carer and as his wife. She took him in sickness and in health and despite not having chosen this road (come on, who would?) she is committing every ounce of love and strength into looking after him. All I can do is ensure I support her in turn as best I can. I know she has her low days, and then she has her very very low days that makes me feel powerless to help, but all I can hope is that I can encourage some smiles along the way.
When Mervyn first came into our lives he was a friendly, chirpy man who used to sing all sorts of ditties in his broad Wiltshire accent. He wound me up and made up silly jokes that made me feel gullible. He used his carpentry and DIY skills to do all the jobs that needed doing for us as well as friends and family. He even built their entire conservatory from scratch with his own bare hands. He let me steer the car and change the gears down the country lanes when I was not yet old enough to learn to drive.
He’s still the same man but all of those things can no longer be done. I don’t hear him humming, he doesn’t make jokes, he can barely stand let alone do DIY and driving is a long thing of the past. But you have to hold on to the memories of the man he was and try to suppress the sadness for the time that he has left.
Besides, even now I can still make him laugh, regardless of anything else. Despite mum saying he doesn’t speak or comprehend much anymore I still know how to make him snigger (and consequently nearly spit out his drink). It goes to show that PSP may take most of a person, but deep down underneath, somehow, they still have their spirit.
Fi x
(The picture is of Mervyn and myself in November 2008 when I graduated from university in Bristol - before he had started experiencing symptoms of PSP)
He said, "I'm dying today."
spitting when brushing teeth
Gone but not forgotten.
Dad (77) was diagnosed a year ago but is still in denial…
Skye 07
