It seems strange to talk about myself. I’ve spent the last six months thinking only about you and making ever-changing arrangements for you as you slowly stopped making them for yourself. Going through the usual surface emotional phases of grief even though you are not gone. Not all gone.
But it’s deeper than that. It’s me and you. Because of my early days and your focus demanded elsewhere we were never emotionally close, but we made a pact. Me, at a sensitive distance, you, in the background. On family occasions where this was temporarily breached tempers flared, but we always fell back into our old ways.
We are opposite. You, anxious and emotional. Me, strong and organised. Both of us incapable of experiencing the other’s traits. I suppose it made us one whole. Until your half began to fade. Just a few cracks at first. Your insistence met with my denial. Then, later, the distance between us lighting up my inability to understand why you were making bad decisions.
Inevitably, we arrived, one early autumn morning, at the memory clinic. The scans had been completed, the memory test taken and here we were at the day of reckoning. You always loved hospitals. Like many women, over the years they had given you respite from screaming kids and dirty doorsteps. You had retreated there, or to its predecessor, hard-to-define-illness, to regroup against a world that was far too chaotic for you.
I saw this and mimicked it initially, then scorned it when I learned how to cope with my life, until I realised it was your only defence against the pace of life. So the memory clinic represented the final outpost of reprieve from a world that was becoming more difficult for you daily. We sat in the hospital lobby and talked about my new book, discussed a character. We laughed. Yet that ever-present difference was there, me tolerating your insistence that you should be here, you revelling in the prospect of the rewards fuzzy diagnosis would bring. A familiar dance we had done over and over. One we were comfortable with.
But we were both wrong. This is how dementia blindsides you, tricks you. We were so immersed in the games we played so willingly that we never saw the huge hand swoop in and take part of you.
The consultant used some acronyms and gave some lifestyle advice, then discharged you back to your GP. Even then, you were indignant. You stood outside his window and lit a cigarette, drawing on it heavily as I waited, silently embarrassed. You told me you wanted something solid, something that would get people to do things for you, which shocked me as you’d never vocalised it before.
That was the last time we went out together. What followed was the gradual theft of your self, as if you were running a program with a glitch, hardly noticeable, but week by week I watched as you resisted me and begged me for help in turn.
It wasn’t up to me, though. You’d been used to me making things happen all your life. You were the ‘family’ one. I was the ‘capable’ one. While you were nursing the babies I was filling out the forms – benefits, housing, financial and now care services. I suddenly stepped into a world I never knew existed, one where dementia is managed, and an army of people are looking after those who looked after us.
I felt it then. The exhaustion. Not physically, not even emotionally. Visceral tiredness. Eating away at my soul. Trying to understand what was happening when there was no reason. Another one of the unanswerable questions of life raising its head slowly. Staring me in the face with a wry smile. Why? Why? Why my mum?
Luckily, getting things in place was my forte. I harangued social workers and care workers, nagged your GP, rounded up distant cousins and old friends in the belief that this would make things better. We had a white board where we diligently wrote our names and your name and your address because you had forgotten it.
But dementia doesn’t fall in line with schedules and plans. Or whiteboards. It’s random and uneven and hidden behind you while you’re ever trying, trying, trying to not let it out. Making lists of mistakes and phoning me in the night to ask where your mother is.
It took me a while to accept it. Denial is a strange stage of grief. I was trapped there for a while, not understanding that this was no ‘backing up into helplessness’ stance. You were really ill. Really ill. But eventually I became angry. Angry at the authorities who thought that three carers a day was enough. That you would settle to day care. Fuming my way through life on your behalf, suddenly your biggest defender because didn’t they know how ill you were?
Of course they knew. They knew dementia when it and I had barely shaken hands. They had grappled with it on a daily basis for years and their casual acknowledgement of it infuriated me. So I upped the ante. I was there more, monitoring you. Monitoring them. On a mission to beat this, to get you help, to make it somehow positive.
Dementia isn’t positive. No amount of positive thinking will cure it. The social worker tolerated me with a sympathetic ‘here we go again’ tone and eventually I called a truce. In my mind, I wasn’t beaten. No. Now we were all working together to beat dementia. My stick had got bigger. In your mind you no longer knew day from night and every morning was a factory reset where you no longer recognised your own home. But on the face of it, you were still you. Dementia was still allowing enough of you to be present so I still had hope.
I came to your flat every night and on weekends. Your birthday was coming up. I found notes telling me how you expected more of me. I did more shopping. I wrote more words on the whiteboard. I made friends with the carers so I could find out how you had been in an hour to hour basis while I was at work. We organised a party for your birthday.
As I was sitting at home on my laptop ordering flowers for you, I realised that it had been a dizzy round of organising and making things safer and getting medication secured. Dementia had robbed us of love. It was there, but non-operational in the fear and stress that pervaded every day for both of us. I would put it right. I would. Emotional demonstration had never been easy between us, but now was the time. I pressed ‘buy’ on the expensive bunch of flowers. Peace roses. Your favourite.
Naturally, the sandwiches were from M&S. Because somehow I thought this would make the day better. Little cakes and some hummus. We were expecting friends and family in the afternoon and on the way to collect the food I worried about if we would have enough.
I’d long taken my answerphone from my mobile phone and turned the ringtone down, as dementia was calling all the time – carers, social workers, concerned relatives who were forever critically puzzled by your behaviour. Swiss Tony from ring and ride. You. So when it rang that morning I only just heard it through the beep of the M&S checkout. The morning carer had been round and you wouldn’t answer the door. Anger rose. I was still resisting dementia, thinking you were being difficult. Didn’t you know the lengths I had gone to?
I rushed round with the food and looked through your windows. No sign of you. Your bed hadn’t been slept in and the usual proliferation of notes, scattered like confetti around your chair, had gone. I didn’t have keys because you wouldn’t let me. You thought I was stealing from you. So I rang the warden and waited with my brother while she arrived. We looked at each other and he said, ‘Brace yourself.’ We thought you were dead.
But you weren’t dead. You weren’t there. As we stood in the hallway and the warden turned the key, the expensive flowers arrived. A gift from dementia to tell me I was stupid for underestimating its effects. We brought the food into the empty, spotless flat with the crowded whiteboard and a hundred birthday cards. This was a party that it had made sure none of us would attend.
Crisis. The previously unspoken Vascular Dementia was bandied about in panicked calls to the hospital and the police and eventually you were located in Accident and Emergency. You had been wandering around on a main road in the middle of the night in a storm with four heavy bags. When we got there you denied everything and told the doctors I was tricking them.
In the middle of all this I had a recurring nightmare that you would be moved somewhere far away. I don’t drive. Dementia was my worst nightmare now. It had infiltrated even my sleeping moments to push itself between us, waving and heckling.
You were booked into a care home for respite. You were still aware enough to know what this meant and you didn’t want to go. I want to go home. I want to go home. My brother and I took you there in a hospital gown. It was miles away. As we approached the village where the care home was, I saw a landmark. As a child, I had gazed out of my classroom window at it, imaging stories and events that would distract from school work. This landmark has, ever since, been central to my spatial awareness. And you always said that you had always lived in sight of it. Yes. Yes. Still something common between us.
You were laughing as we arrived. It looked nice from the outside. A carer appeared. She was jolly and made a joke about wandering. We all laughed. You were given a room and you went to sleep. My brother brought some clothes and we wrote your name on them with a black marker pen, just like you had done for us decades earlier. We had a tour of the home and the manager told us that you would be happy here.
Guilt. Immediately. You had striven to keep your parents out of care homes. I know you expected me to do the same. But I’m not qualified for twenty-four-hour care and I have a life. Guilt. Dementia pointing at me and telling me I’m useless. The menu is extensive and there is a dining room. Two lounges. A garden where you can smoke.
We leave and I catch a glimpse of myself in the rear view mirror of my brother’s car. I’ve aged ten years in six months. We pull away and I feel like there is an elastic band attached between us with ‘don’t leave me here’ written across it. It occurs to me that maybe dementia has written these words because I’m leaving it there. My mum would know that she needs this care. My real mum. My brother drives in silence and we go to our homes and carry on with our lives, visiting you every other day until the care home manager tells us you will settle better if we come less often.
We break up your flat. This takes over our time, but I’m mindful now that dementia is still there in the background, whittling away at you. But you’re eating better and I saw some photographs where you sat with other people and made birthday cards and you were smiling. You had your hair and nails done. You’re less anxious and I begin to think there’s been a mistake and you should be back at home in the flat that we just gave up and gave all your furniture and clothes to charity. I worry that I haven’t done enough or the right thing. I picture you sitting in your room alone, confused, even though the photographs in the care home lobby tell me a different story.
One Wednesday night I take the bus to see you alone. It goes the long way round and I check the timetable. When I get there you’re in your room watching Coronation Street. I sit on the bed and you ask me who these new characters are. I tell you your hair looks nice and you smile. Then you ask me what care home I work at? What time I finish?
Somehow I thought it would be all or nothing. That you would be fine one day, then the next day you would be unaware. But this is you, all smiley and healthy looking, with no memory of me. I make us a cup of tea and go with it. Naturally, I’d read all the advice on how to talk to dementia patients, but not on how to not be remembered by your parent. The rush of what that means makes me gag, but you’re smiling and I haven’t seen that so much lately so I go with it.
Eventually you tell me I’d better go as it was eight o’clock and doesn’t my shift finish at eight? I take the cups through and wash them and when I come back you look surprised and ask me how long I’ve been here. I don’t know if it’s me or your carer you are talking to, then you tell me my hair is nice and that I’ll always be your little girl, and I know.
I leave and sit at the bus stop. The buses are only every hour at this time and that’s another point for dementia. But I feel calm. All the grudges and bitterness that festered over the years have gone, and the mere fact that they sat between us at all seems ridiculous now, a waste of precious time. I’m taken by surprise at my naivety so late in life; just when I thought I knew everything.
This is how it has to be, I tell myself. I can do this. When I tell people what has happened they make the same assumptions that I made at the beginning of this journey. That it can somehow be fixed. That it’s a battle that can be won. That something can be done. They secretly think I’m making a meal of it, dramatizing it. Surely she can’t be that bad? I suddenly realise that it’s because they don’t know dementia.
It’s changed you and it’s changed me. I feel old and worn out and more aware of my own mortality as well as yours. It’s made me see that love really is in the everyday, not in grand gestures. I feel a need to see all my own adult children. Tomorrow. It’s a cold summer night and the bus is late. A woman tells me that they sometimes don’t turn up. I call my brother and he comes to collect me. I don’t tell him what happened because it’s no longer unusual. It’s not headline news. Instead, we talk about juicers and fitness and how we will keep ourselves healthy.
He parks up in the layby opposite my house. He looks older too. He smiles and tells me not to worry, he’ll pick me up anytime and take me to see her. It’s only over the hill.
Mum died on 31st October 2017. Thank you to everyone who cared for her. I hope that you will make a donation to a dementia charity to help others who are suffering.