It was a gradual dawning – the fact that there was something very wrong with Mum. Dad was worried, I could see it in him and after multiple trips to the doctors she was being treated for depression (which, I now understand is a common diagnosis in early dementia) and being visited by a lovely psychiatric nurse each week. Her forgetfulness was becoming very noticeable, and Mum was aware of it. The doctor and nurse believed it was all linked to her depression and anxiety….that her memory problems were her brain’s way of dealing with a possible, long-forgotten childhood trauma. For a while, we all clung on to this belief, that it was a temporary thing and was therefore, curable. There was a level of positivity and hope in us, but I think deep down we were all secretly worried. Terrified that these forgetful moments and increasing confusions might end up being something truly debilitating and horrendous. Those fears, very sadly, have become our reality.
Mum became quite defensive in those early months – particularly if you mentioned she had repeated herself or asked the same question before. She covered it well though, probably for a lot longer than any of us noticed. The consultant told my dad last year that Mum’s brain has been working hard to cover up the damage for (probably – it is only a guess apparently) quite a long time. That other parts of her brain have been compensating and that is why she has been able to carry on as normal, without us really noticing. Without her really noticing. So, for a long time she was able to ask the right questions, at the right time in the conversation. She was able to engage with the kids and ask about their tennis / swimming / football – confident that it was a question she couldn’t possibly get wrong, as she knew they did these activities every week. These moments of lucidity though are becoming fewer and her ability to cover up the destruction that is happening in her brain is lessening, quite dramatically. She occasionally still has the energy to speak to the children and I will hear her bright, bubbly voice for a few minutes as she falls back on a couple of questions she knows are the right ones, “How was your day today?” and “Is it cold where you are today?” – the weather is a safe topic of conversation, it is a conversation she can cope with (most of the time), and she is always cold.
It was only when she started to forget things that she would never have forgotten before that it started to become obvious. She would ask the same question she had asked the day before, prompting an annoyed “I told you yesterday Mum!” response from me on many an occasion. But despite the early signs, she was able to divert the attention away from herself or ask the right questions in those first months before diagnosis. She would ask about the children, or work, or anything really that took the focus away from her. Looking back, I can now see she was probably petrified. She started to write lists all the time. Lists for this, lists for that. She’d always write dates down in the calendar that hung in her kitchen, as she would forget when people were visiting, or when the kids’ birthdays were. Her defensiveness was, I now see, her way of dealing with what she probably knew was coming. On some level, she knew what was happening to her and it was, understandably terrifying.
Mum’s brain is dying – the intricate map of connections in her brain should be lit up like the bloody National Grid, but day by day, it seems, some of the lights are fading and going out. And, it is a bloody cruel disease – my sister and I often chat about how strange it is that Mum can be polite and almost ‘normal’ with strangers – so the nurses and carers who come to see her daily and weekly – yet she can be vile, really nasty to those who love her most in the world….. my sister, my brother, me, but most of all my dad. It’s almost like on some level she knows that she knows him, and this allows her to treat him, at times, with utter contempt. Then within an hour, she can be crying, apologising to him, clinging to him, fearful of him leaving her. It is exhausting for my dad, who never knows from one minute to the next which Jane will confront him when he walks into the room.
The consultant and various doctors she has seen have witnessed some of her aggression and delusions. She didn’t want dad in the consulting room with her, for example, on one occasion, as he wasn’t her real husband. They tell us that it is a sad, but fairly common part of dementia, or can be. What they can’t explain is why she is more distressed and aggressive at home, whereas in hospital, she was quite calm. Confused and paranoid, but calm. No one seems to be able explain this to us. Why is she more upset in the place she has called home for the past 12 years than in a clinical, cold, medical environment?
I am no expert but I have a theory. You see, I believe it is because, in some dark corner of her brain, she knows that she is at home and she knows that she should recognise where her bedroom is. She should know the difference between the laundry basket and the kitchen bin. She should know how to open the fridge and she should know where the bathroom is. I believe that on some level, hidden deep inside a fading brain she understands this, and is scared by it; by her inability to do the things she knows she should be doing. I believe hospital was a calmer environment for her, as she could succumb to the fog and be enveloped in the thick mist of the disease and not constantly be reminded of her failings. She could simply be…..Be the new person she has become – for a while she could give in and stop fighting.
She is exhausted by the constant fight and she is tiny, but my God, she can still eat. “No, I don’t want any dinner, I’m not hungry!” will pass her lips almost every day, but then Emma and I will have a giggle after having watched her wolf down a man-sized portion, ask for more and then still have room for one of Dad’s homemade puddings. She still has that Turner appetite! It is good to see. But, despite eating well she is still tiny. I think it might be the constant anxiety – the ‘fight’ – or the cocktail of drugs she takes each day, or perhaps it is a combination of both.
I read a lot just now about dementia. I read other people’s blogs and I subscribe to online Alzheimer’s and dementia forums, searching for some small comfort in knowing her behaviour is “normal”. Many of the sufferers I read about are in their 70’s or 80’s and have been fighting this awful monstrosity of a disease for up to 10 years. I often wonder if it would have been easier to deal with if it had crept up on us a bit slower. If it had gently tapped us on the shoulder and introduced itself calmly, instead of slamming the door open one day and announcing itself with a destructive tornado in tow, ripping to shreds any sense of normality, safety and hope for the future my parents had. I don’t know. How can I ever know? I find myself sometimes jealous of people I read about who have been fighting this illness for 10 years and are still living at home, being cared for by spouses or family. There is a very strong chance my mum, at just 65, a young granny with what should be at least 20 years ahead of her, will need full time care in a care home within 12 months. Those that know these things have gently advised us of this fact. This makes me so bloody sad, but then my survival instinct kicks in and I think to myself; at least she didn’t have it there, sitting on her shoulder like an evil demon, whispering doom and gloom and taking the joy out of her for all those years. At least she hasn’t had to fight for 10 years….imagine how thin she’d be! At least the fight she has been drawn in has been a fast one – not a long drawn out bloody slow massacre, with her fully conscious throughout.
Because, it is a fight -but it’s an unfair one. My mum, a light welter-weight drawn against a heavyweight – the heavyweight champion of the world. What chance does she have? We can only look on, sponge her down in the corner, close our eyes at the big hits and be there to hold her hand when she gets knocked down. One day, this bastard disease will meet its match, but I don’t think it’ll be my mum with the final KO.
You probably won’t remember me from way back, one of Gillian’s friends always there more than my own house. I’ve followed your blog with tears in my eyes at some points and laughter at others. It is such a cruel disease and so unfair. Your mum was a lovely person and you no doubt have hundreds of memories to cherish. It’s a very unfair world. So brand of you to write such an honest & open account. Which no doubt will help others to understand such a cruel disease and perhaps give you some small comfort. Sending you a hug April x
Of course I remember you April – I will always remember you in your bridesmaid’s dress at Gillian’s wedding. Very pink! Thank you for your lovely message – it means a lot xxx
Hi Sarah, it’s jill swift (weir)I knew you’d mum was poorly via Helen, fran and Caroline but I’ve only just come across your blog and it’s lovely. Sad but very sweet too and shining with family love. I know you are having a horrible time and I’m so sorry.
We had an awful few years with Richards mum where she is battling with anxiety and depression and didn’t visit us for a couple of years and missed so much with the kids. We are lucky in (as you had hoped) that with treatment she seems much better at the moment and enjoys things again, but she is changed and the family balance is too. It’s rubbish but if it helps you are doing a lovely thing spreading your thoughts and you’ll stay in mine. Keep smiling x hi to Chris and the kids xxx
Thank you for your lovely message Jill, lots of love to you and yours xxx