As a boy isn’t there something particularly special about mummy? How your mother captures and shapes the world – makes it comprehensible, warm, supportive, digestible. So it’s not surprising that the loss of anyone’s mother should be a shock – if not entirely catastrophic – and I am not talking about the loss of anyone’s mother, but of mine.
Except of course I need to be clear she’s still alive - so I haven’t really lost her have I? Somehow though it feels worse than that, much, much worse. I feel entirely torn between diverse experiences I know have had: She could have died, it would be entirely final, no last chance to say I love you, never there again or she could have had such bad dementia and not know who I am, or who I was, or what fun, what arguments we ever had. Instead my mother is in neither of these two extreme conditions. She knows that I am her youngest son – she still enjoys telling all the nursing home staff that I’m her littlest (of 3 brothers a favourite joke as I'm 6ft 3ins – I’ve started telling them that they should see the others) , she’s still so present and aware in so many ways. Perhaps I’m just a whinger. But I am having to live with her immediate and present loss.
I first noticed a big change when I took her to visit a new possible nursing home. I’d always found that my mother and I can just talk about stuff – anything you know – some people who you’re just at home talking with. From what really motivates someone, why another is unlucky in love, or how those shoes just don’t suit a passerby. Well for the first time ever as we returned from the nursing home visit my mother simply fell silent. Not much going on. That previous sense of insatiable sociability that we always shared punctured by a wandering silence or confusion. Replaced by…not much going on right now..
In fact it had been nearly 6 years previously that my mother had been diagnosed as suffering from vascular dementia – a particular type of dementia – that can include small strokes leading to occasional loss of consciousness and with it parts of the brain that are starved of oxygen for short periods. So there’s history. .. and many other problems with her walking and stability. She lost the sight of one eye 4 years ago in another vascular related incident. Obviously she wanted to maintain her independence as long as possible, and the vascular dementia seemed to bring out her deepest stubborn streak and her desire to make all seem good, to hide any issues, appear to be confident, content, understanding, happy, and in charge… when she was really confused, unsure and scared by her symptoms. For many months (she wouldn’t tell us how long – simply brushing it off) she’d been practising what she laughingly referred to as furniture falling.. and when we discovered how often this was happening we reacted and moved her into a home. She loved the support and reduced levels of fear, but hated the loss of independence – not being in her beloved home, overlooking her garden.
Even in the home the inevitable happened. Twice. Two visits to hospital with a bleed on the brain (subdural haematoma) and after the second time she had to have neurosurgery to save her life. When she first came around from this she was a much changed creature. Not able to talk, articulating no recognisable words, but making sounds that mimicked the pattern of ordinary sentences, and also most importantly still recognising us immediately and showing much love, affection and relief to be with her loved ones. The feeding tube down her nose, hurt her horribly – and she would later talk about it as though of being subjected to torture. In that state of mind, of mental confusion, it’s impossible to imagine the level of stress and discomfort that anyone can experience. It seemed that the whole experience of the operation had become some type of persecutory attack, and I had to remind her that those torturing doctors had actually saved her life.
But life is no respecter of human standards. You get a real slap in the face wake up call in events like this. The medical profession is wonderful and amazing and there are nursing staff who provide wonderful proof of the breadth of human life and love. But, put simply the doctor who operated on my mother could not tell nor care whether he was going to return my mother as cabbage or queen. Following Hippocrates his focus was life…go read the small print.
So since this last disastrous fall, my mother has regained her speech, and the joy of holding her warm hand has been tempered by a growing realisation of how much is left. Since the latest traumatic event, we’ve sold her house, sold her car. We’ve held off giving her enough physio to be able to stand unaided again so she can no longer walk to risk new falls. Every decision a difficult one laced with love and concern.
Having read the advice of the Guardian family section we read the book Contented Dementia by Oliver James. I’ve tried to follow some of these concepts. Find a way to help her be herself. Listen to what she is saying and as her mind has changed and transformed to a more fragile if repetitive thing I’ve tried to avoid asking her any direct questions, never contradicting her. I try and sit next to her when I visit so we can share stories better, about the past – not challenge her memories of the present. This has been particularly difficult with the care home as my Mum has lately been convinced that she’s spending time with her parents (they both died over 30 years ago) and the home in their wisdom has tried to bring rationality to the thoughts of an old woman with severe dementia. They try to get her to see that they couldn’t be alive, given how old she is. This has been a slap in the face to her. She’s developed a living whole relationship with people she no longer lives with or who are dead. But it’s remarkably hard to predict. She’s always been a keen dog lover, and started the latest visit questioning where her last deceased dog was, I tried to follow the conversation, only to get it wrong and to be told – no no Tessa is dead. I try and always have a laugh with her, and with an hours visit have a near 100% record there are still so many things and memories that my mum loves. But I can’t help getting extremely teary eyed when I talk to her – whether feeling sorry for myself for the friend I’ve lost, I do know she still loves me, but what is there that is really left? Or thinking of how all of those shared experiences are due to become memories that I will be holding on my own for the rest of my life. I can feel that my mother represents a library where all of the books have been torn from the shelves and chapters and whole books lie mixed in a heap. It’s all still there, you just need to find a way to open up the page in a way that she expects.
