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)
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A nice blog post. It must be very difficult for your mother. My dad and I look after my mum and this illness can be all consuming. I wish you all well.
Thanks for sharing your thoughts with us. As the others have already said, sadly we do know exactly how you feel!
Your step-father must be a very special man to inspire such affection and admiration. I do hope your Mum has "outside" help and support in caring for him. There is help to be had but, sadly, you have to ask for it - no-one seems to just offer it these days
I hope you can continue to make him laugh and share those precious times with him.
Thank you Fix for a truly sympathetic portrayal of your step-dad.
I think the worst possible aspect of PSP is that some suffererers, like my husnband, still retain their core intelligience and they know what is happening to them.
As the others have said, your story is so familiar to us all on this site. Thank you for sharing your experiences of this dreadful illness.
My hubby and I are struggling a little with his falls at the moment, but we'll get through this dark patch, and come out fighting again.
I shall be 70 later this year too and I am Tony's full-time carer. Coincidentally my hubby is also 73 like your step-dad.
I have two wonderful daughters (twins) from a previous marriage, but Tony has been their "dad" since I married him 39 years ago. They have a wonderful relationship with Tony but sadly they don't get to spend as much time with him as they would like to as one lives in Wales (about 2 hrs away from us) and the other one lives in Vancouver, Canada. As it happens my daughter and her Canadian hubby are visiting at the moment and they have been a wonderful help. Such a pity their visit was only for three weeks and they have to fly home on 1st June.
I guess most of us who are affected by this illness must notice how the symptoms can differ from person to person. Tony always seems to deteriorate further when he has had a fall, and sadly these are becoming more and more frequent.
Your mom and step-dad are very fortunate to have such a loving and caring daughter, just as I am with my own girls. All you can do is be there to give your support and understanding. As a mom, it is truly helpful and appreciated.
Thank you for your blog on here. At least you have put into words how we all feel.
Thank you to all of you for your kind and supportive messages. I'm really overwhelmed, but also lifted, by reading your well wishes - it's just a shame we're all coming together due to a horrible thing as opposed to a positive one.
I actually work for a Carers Support charity in Wiltshire so I know all too well how important it is that people like mum get outside emotional support and practical help. She's had support from our charity Carer Support Wiltshire and one of our support workers has been able to help her complete her assessment and power of attorney form etc. I think she would have been at a real loss for accessing that sort of thing had I not worked here since it's so hard for us to reach carers in the community.
It's a real comfort to read what you are all going through and really confirms that we're not alone in this, so thank you. I'm sending lots of warm wishes to you all - I'm sure this won't be the last blogpost from me.
I will share your messages with mum - sadly she's not computer literature (I've tried in the past but she doesn't have much patience with my IT lessons) so I will make sure she hears about them.
Thank you for writing this, This is my reality as well. My Dad has PSP, about 8 years now. He has gotten ALOT worse in the last two months. My husband and I sold our home and moved into the basement of my parents house. We know if we hadnt done that, he would not be alive today, and my Mom wouldnt be either probably from stress!!
It is sad that when you google PSP, the top 10 search findings are play station related. Drives me insane.
I am going to the PSP conference in Texas next weekend. I guess mostly to see what is coming "down the pipeline" and try to give my Dad a glimmer of hope?? I am reasonably sure I could give a speech on PSP and most people would think I was extremely knowledgeable....so I am going only to find a glimpse of hope for my Dad. It is alot of money and a long way to go (we live in Ontario Canada and the conference is in Dallas Texas) but hope is priceless!
Dear Fi, i read your blog with absolute empathy; you articulate perfectly what we all (sufferes and carers alike) know and understand about the reality of living with this merciless disease. I loved your comments about how you can still make your stepdad snigger; proof that he hasn't lost his sense of fun and irony. It is one of my greatest pleasures that I can still make my husband laugh.
Like Sheila and her husband, I take delight in getting a smile or a laugh from my Mum. It's not been so easy recently as she has had a series of UTIs and a couple of pressure sores but when I manage it it feels like a gift from the past.
i honestly cannot believe reading this was just like reading my thoughts on paper, my stepfather has psp and has suffered now for nearly 8yrs my mum gave up work 3yrs ago as an auxilary nurse they met 10yrs ago married for 5 now, life is hard work for my mum and only this month has accepted she needs help,
I wanted to let you all know that yesterday (19th May 2013), Mervyn passed away fairly peacefully with my mother at his bedside. It was a beautiful, sunny day with the windows open, birdsong and farmlands outside and a village cricket match taking place on the green outside.
This illness has a devastating effect on a person you care about and in the latter stages he looked a shell of the man he used to be. The jolly chap with his bit of a belly had all gone. It's a strange feeling when someone who's changed before your eyes over the years leaves when you knew it was going to be inevitable. The grieving began long ago but there will be a void for sometime, particularly for mum.
Thank you again for your kind words when I posted last year and I wish you and yours luck and happiness for the future.
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