I used to absolutely love watching Michael Aspel as a child. When he swooped in with that big red book and announced ‘This is your life!’ I was fascinated by these ‘celebrities’ and their histories, their relations and relationships, their careers. Even when it was someone I didn’t particularly know or have much interest in I would watch avidly, – as their life unravelled.
I always wondered how my life would play out. How would my book be filled? What did I have that I would be proud of? What friends would come out of the woodwork? Who have I had a positive impression on?
The same goes for obituaries. I have a morbid fascination for those too. I am always touched by the lovely things that people write of when remembering loved ones. We all do it. Whenever we lose someone our minds scavenge all those amazing moments that we spent with that person; the times we shared, the advice they gave, their laughter and the smiles that they raised.
Writing my Mum’s eulogy was one of the hardest things that I’ve ever done. A wonderful woman who dedicated her life to her family and friends, to me. She taught me so very many things, and she did such a lot for others; she cut their hair, she made them things, she helped them, she was a great listener and she made them smile.
I’ve been distant for the past few months, floundering since losing my Mum, that one very stable and constant in my life. Moreover, helping my Dad through his grief, and my children through their first major loss too. Looking for answers, talking, finding a way to carry on through.
It’s no secret that my Dad has struggled. This very able and independent, strong father figure, who I have always looked up to, has become an older man and a shadow of his former self. A big part of him disappeared with Mum. As days drew into weeks and months, I knew that my Dad was taking things particularly badly. The grief was deep set, understandably, but he wasn’t doing anything to counteract that grief, that abandonment, and more worryingly, in a lot of ways I could sense him giving up on himself. He started to lose track of things, forget things, make some silly mistakes, some judgement errors. I researched grief and memory problems, spoke to friends, spoke to doctors, but no one listened. Everyone seemed to say the same. ‘He’s grieving, give him time. ‘ Apparently it was all part of the process. Through all the sleepless nights, I remained unconvinced.
I have three young children, my eldest with profound special needs and yet here I was worrying for my father as much if not moreso than them. I don’t have any other close family. I’ve felt for months now like it was ‘me against the world.’ I had to pursue my concerns. I had to be heard, so I pushed, and I pushed, and I pissed a lot of people off. I started to think it was me losing my mind. I was so stressed and forgetful, my organisational skills have taken a nose dive and things were starting to slip. I knew I wasn’t coping, I was forgetting things, I was overwhelmed, I was constantly tired and with any number of aches and pains and minor ailments….I was run down. Was it just me?
After what seemed like an eternity, people started to change tack. Friends admitted that there had been the odd instance where things Dad said or did were out of character. He’d been out of sorts, he’d shown confusion, or he’d done something silly, he’d forgotten a date, blanked a friend in the street. Things got progressively more bizarre and in some cases worryingly dangerous. My Dad was becoming vulnerable and unstable. Whenever I wasn’t with him I was worrying myself into an early grave, but at least people had started to take notice. It took a lot of planning, and a great deal of persuasion on my part, but eventually I convinced my Dad to visit his doctors with me and despite their shrugs and non-committal, but with my abject persistence, I managed to get a referral to the Memory Clinic. It was anything but easy. There was a great deal of waiting and more weeks of worry. Especially when I myself desperately wanted to be proved wrong.
Anyone who really knows me will tell you that I’m the most impatient person in the world… ever! So waiting for appointments, which took months, waiting for tests, more weeks waiting whilst my Dad absentmindedly avoided or rearranged appointments and then more weeks waiting for results, all the while seeing my Dad deteriorate. It was agonising. I’ve spoken to friends who have experience of these problems, trying to glean information, coping mechanisms and most importantly reassurance. I’ve cried A LOT, on occasions I’ve laughed and I’ve worried all the more.
After endless months of waiting and worrying, at the beginning of this month, I took my Dad to the Memory Specialist for a consultation and finally we were given the diagnosis of mixed dementia. My Dad has Alzeimer’s and Vascular Dementia. It’s taken a while for me to get my head around it and I’m no medical expert, but I spoke to a Doctor who put it into succinct terms. Alzeimer’s is shrinking his brain – whilst Vascular Dementia is cutting off the blood supply. So, it’s a double-whammy and quite possibly the worst possible scenario.
My Dad is in denial. He thinks that the Doctors are plotting against him and that there is absolutely nothing wrong with him, other than his advancing years. Yet, in another breath, he’s apologising to me for forgetting important things and for being a burden to me – a thing that his presence will never be. He knows the score, but he refuses to accept it. Oh and then when he remembers – he forgets!
I’ve spent the last month driving backwards and forwards the same few roads between my home and his. I’ve cleaned, I’ve shopped, I’ve paid bills and I’ve arranged things for him. When I haven’t been with him, I have spent endless hours on the phone trying to get some support in place for him (which is a minefield and a completely different ball game than when I sorted support for Archie. Different councils work very differently). I have filled in countless forms, as well as fielding the numerous calls daily, often hourly from my Dad – repeating the same things minute after minute, after minute.
I read somewhere that one of the worst things that you can do with someone who is struggling with any form of memory loss is to challenge them about it or point out their repetition. So, I’ve just started each conversation as if it’s been the first and not the 12th or 20th! It’s not easy, and I’m probably losing my mind a little in the process – but I’m learning. My patience is actually growing, possibly at the same rate as my exhaustion.
I’d be lying if I said that everything was going to be alright. I’m a realist and a really bad liar. I already know that it’s not. I don’t always get it right, far from it, but I’m neither blind nor stupid, though some may beg to differ. I do find that on days when I’m at the end of my tether a long ugly cry or sweary rant (out of ear shot of the children) does wonders!
I have been close to breaking point recently. I’m so run down and I’m thoroughly miserable. I’ve been letting myself go to the dogs of late (and I don’t mean the track!) and I hate myself for that. I do have pride after all. I miss my Mum like crazy. Especially knowing that she would handle all this far better than I ever could – with practicality, efficiency and good humour.
So, with her in mind, and on behalf of my Dad, I’m sucking it up, and raising the bar.
When I can’t count on much else in life – I’m counting smiles and making smiles count!