I am very aware of what I’ve lost.
I don’t think I’m dealing particularly well with what’s happened. Or I’m dealing with it in my own way. Which is to say, I compartmentalise my mother. I don’t bring her with me to work. Or take her out with me in my head when I socialise with friends. I do think I’m still in running-away mode. I do my duties and then I try to shut it off, shut all thoughts of her off, for another week. It’s my way of coping. This is the only way I seem able to cope. When I think back to when my mother was first diagnosed with Alzheimer’s, I was in such a huge state of shock. Everything had fallen apart. I was free falling in the horror of it. I was bleak. I don’t know if you recover from that. I don’t think I have and maybe I never will.
I’m dealing with it the only way I can. My older brothers have been trying to get us all to have family gatherings, which we never really did before. We were all independent types and didn’t do get-togethers. I don’t want to start now. It wasn’t going to work for me and it wasn’t something my mother was able to appreciate any more. So I put the kibosh on that.
I have faced her illness more fully now, though. I know she’s getting worse. I can see it in her every week. There’s no denying what’s happening and coping with it continues to be difficult. It never gets easier. You never accept it. You never get to a calm, easy, spiritual, peaceful point where you are sanguine about the situation.
Sometimes I sit in my flat and daydream that a call has come through on my phone and a voice is telling me that my mother has died. She’s gone peacefully in her sleep with Dad beside her. It would be a relief. It would be terrible. A terrible relief. Because there is no hope for my mother. All that’s ahead of her now is misery and suffering and pain. And all of that’s ahead of my father, too; my beautiful, funny, caring, devoted father. You can’t say her death would be a terrible thing.
Her sisters look after her during the week, so my dad can go to work. They take her to lunch and go for walks with her. It’s funny, they say, that my mother had, from a very young age, a fear of being put into a home. ‘Please never put me in a home,’ she said when she was first diagnosed. My father probably feels like he has that added issue to deal with. He’s been listening to that for years.
I look at my dad and I wish he could get some comfort somewhere. If he turned around to me and said he was having an affair, that he was in a relationship with another woman, I would say, ‘Hallelujah!’ I wouldn’t think he was cheating on my mother. I want my dad to have a whole other life. He deserves that.
If he tells me he can’t put her into a home, I will tell him he must. She’s not going to know what’s happened, not in the painful way she might once have known. He must not feel guilty. He has cared for her for five years and he has a life to live, too.
My mother is not the woman she was. In some ways my father needs me more than she does. My Motherwork is really Fatherwork. I have figured that out now.
The Grieving-Her-As-She-Lives Daughter writes to her mother:
Dear Mum
Thank you for looking after me all through my life. Thank you for being a mother I could tell anything to – I’ve learned how rare that is and I feel so lucky to have had that experience with you, even though it has been cut far too short. I love you so much and not having your support and kindness surrounding me is almost unbearable.
I know this is a letter that you will never and could never read and understand now, but I hope that all of what I’ve said so far, I’ve expressed to you before and that somewhere inside your mind you know how much I love you and how much you mean to me.
Seeing your beautiful personality fade away every day is killing me. I just hope that you’re living in your own, blissfully oblivious world and that you’re not suffering.
I feel so sad to be losing you bit by bit, but so grateful for all of the wonderful memories I have of our time together, from my childhood right up to the extremely precious time just before things started to change.
I hope that you can forgive me for the times that I lose my patience or can’t face going to see you – I really am trying and I will love you for ever.
I will mind Dad for you, Mum. I will love him for you.
Grace
THE RELUCTANT DAUGHTER’S MOTHERWORK
Anna told us that her biggest fear was not that her mother would die, but that she would continue into her nineties or beyond, which would mean that the entire value of her property (Anna’s inheritance) would be whittled away by care fees at the same time as her mother’s quality of life diminishes. She wanted to be more mindful of her daughterly duties. Here’s how Anna got on . . .
My mother has gone downhill mentally so fast since I joined The Daughterhood that the only way I can deal with it is by treating her as a ‘case study’ – my default coping mechanism in times of extreme crisis. I know it sounds as if I lack compassion, but this history is complex. I left home young to get away from her, in case her misery was infectious. I grew up listening to her moaning and blaming circumstances or other people for why her life has been so disappointing. It seems she has never had an iota of self-awareness or an inkling of how she’s coming across to others. And I thought I’d long escaped the reach of her negativity, keeping my distance while being polite and kind and doing the minimum necessary. But now, with my dad gone and her mental health failing, she is dragging me back into her orbit like a black hole, or a melancholy planet with a fearsome gravitational pull. She is the death star.
The other women in the group were a bit shocked when I told them my greatest fear is that she will outlive me; that she will be the world’s longest-lived woman, seeing off little old Japanese ladies who have eaten nothing but seaweed for 120 years; making a laughing stock of Central Asian women from the Hunza Valley who have stayed young on a diet of grain and apricots and know the secret of the jojoba nut. One only needs to glance at her to see the genes of longevity: that dark olive skin without wrinkles or blemishes; the mitochondria that replenishes itself, impervious to free radicals; that strong shrill voice that has never shown regard for its audience’s ears as it recites its litany of all those who have done her a mighty wrong; a belligerence that would wear down the determination of the most ardent interrogators. It’s all there: unceasing, unsleeping, vitriolic, incorrigible.
And yet, and yet, there is evidence still of her physical beauty – even as she approaches the age of ninety. Physically she had been truly blessed, but her inability to see life as an opportunity blighted her soul. Instead, the miracle of existence was for her a drudgery that was doing its level best to make her life a curse to be endured. Her mouth has always been downturned and glum, her eyes burning with grievances: Hitler, the war, her background, the lack of money, my father . . . me. ‘Of course, there were no opportunities left for me because I had to look after you.’
Yet I do care about her. I don’t want her to be uncomfortable and I certainly don’t want her to suffer. But we have never bonded and there is seemingly no underlying, unifying, flesh-and-blood factor that would have me rushing unquestioningly to her defence like ‘family’ are supposed to. And for that, of course, I feel guilty. We are like matter and anti-matter – I am strangely repelled by her, always have been, and this is not done out of bloody-mindedness but out of self-preservation, in order not to be tainted by her mindset of doom.
Certain pre-industrial, shamanic societies would describe her as a ‘bad-luck soul’. She knows it and I know it and she knows I know it. She is the mother who always spoke in negatives; who labelled herself a ‘Jonah’; who would jinx any initiative by involuntarily sucking the positive energy out of it. If there is something in the primitive belief that ‘like begets like’, then my mother has proven the theory time and again. One hundred women could buy the same article of clothing but my mother’s would be flawed in some way and a replacement unavailable. One hundred travellers could set off on the same journey but my mother’s path would be visited by tornados and blocked by landslides. O
ne hundred houses would receive a free gift through the post but her envelope would be empty.
Do we make our own luck? Do we bring back upon ourselves that which we project? In her case, the prudence of expecting the worst never meant she was pleasantly surprised. Was it predestined that my mother would never have anything go right for her, or has a lifetime of moaning and blaming painted her into a corner of her own self-fulfilling prophecy? What happened to make her the way she is? Did something really bad occur when she made her first explorations of the world as a toddler? Was she hurt or harmed whenever she first tried to venture into the unknown? Never have I met a more narrow set of habits or tastes. Never have I met anyone, of any age, who is as reluctant to try new things as my mother, be it food stuffs, modes of travel, ways of thinking, hobbies or even TV channels.
I know people who are cautious of stepping outside of their ‘comfort zone’, but in my mother’s case the zone in which she has been stuck has never made her happy in the first place – has never been a ‘comfort’. It is as if there has been a force field around her, preventing her from seeing things from a different angle, from taking a chance on anything, from listening to others who were trying to advise her. She has never planned for the future and refuses to see the truth of the past. Her MO of ‘worrying about it when it happens’ has not been born of an easy-going nature but rather a refusal to accept the inevitability of change.
And there is always someone to blame. The hospital ‘killed’ my father with MRSA. The fact he’d had seven strokes and a heart attack and was eighty-six years old was nothing to do with his death. ‘He’d still be alive if it wasn’t for that bloody hospital.’ (Even though he’d be 101.) The fact her legs are painfully swollen with cellulitis and oedema is not because she is too elderly to exercise and could help herself by keeping her legs raised, but because ‘that foreign bus driver’ didn’t lower the bus for her to get on the platform and she fell, causing an injury that has led to complications.
And while her ailments are those common to elderly women – arthritis, aches and pains – she has by her own estimation been ‘very hard done-by’. She knows ninety-year-olds who go jogging and have never had anything wrong with them, so why does she have to suffer such pain? She forgets that, apart from those common ailments, she has never had anything wrong with her. There has been no cancer, no hysterectomy, no heart disease, no diabetes, no stomach ailments – not so much as a cold.
But now there is something really wrong and she won’t allow it to be discussed or acknowledged. She has Alzheimer’s. And I’m sure she’s really frightened but she is covering her fear with such aggression that I can only suppose she expects her unpleasantness will repel meddlers. Like a squid squirting ink, or a tarantula throwing spiny hairs, she expects her tactics will see off those who ‘mean the best for her own good’ and want to ‘stick their noses in’. She has twice refused Social Services when they have come to make a care assessment.
I have begun taking videos of her on my phone and I’m building up a movie library of unreason. In one, she is telling me it’s not just that I am on ‘their’ side but I am ‘directing them all’. ‘I loved you so much,’ she wails in one short clip, and now I’ve ‘turned around and betrayed’ her by letting ‘them’ interfere. When a woman from the memory clinic came to tell her of the facilities available to her she told her to ‘piss off’, that she’d pack her bags and one day we’d come around to find her gone. She carried through with the packing of the bag, which I later found contained a soft toy, a plastic box of loose change, some tea towels, a large old-fashioned alarm clock and some press cuttings about crocuses. The pathos of this did not go unnoticed. It was like a little girl’s attempt at copying mummy packing to go on holiday. I discreetly put everything back in its proper place and she forgot all about ‘them’ until a few days later when I was advised to move her bed downstairs to encourage her to go to bed at nights, instead of sitting in the armchair and not resting her legs properly. All hell broke loose and those vocal chords were exercised to a maximum impact of rage and accusation and conspiracy theories.
And so I go about shadowing her in her own home: picking things up; cleaning the burnt plastic from the oven where she has tried to cook food whose containers should never be heated; sifting through the endless old newspapers and magazine cuttings; secretly disposing of seventeen packets of beetroot – each in its own state of browning discoloration and decay – that she’d hidden in a cupboard; unravelling tightly rolled £20 notes totalling hundreds of pounds that she’d put into old soup cans and paying them into her bank account; cleaning and sweeping and gardening and mending things and cooking her lunch when I go round there once a week. The routine is always the same: get her pension, do her shopping, cut the grass in the front garden, put the rubbish in the right order, hoover the house, clean the bathroom, air the bedroom, and check she hasn’t thrown out her jewellery.
Since I met everyone at The Daughterhood, I’ve been aware of needing to cultivate something positive with my mother. I certainly have been trying to help her since my dad died in 2000. I helped her to move house just after his death, and have subsequently tried to get her to move house more recently, as everyone can see the stairs are too much for her and the only bathroom is upstairs. She’s refused to budge. And now we are veering towards a crisis of care management. I fear that it’s too late for heartfelt chats. She doesn’t remember the sentence I said 20 seconds ago. She can no longer follow the thread of what anyone is saying. One could never really hold a ‘conversation’ with my mother, in any case. She never seemed to understand the usual back and forth of adult discourse. She was locked in her own thoughts.
I think she’s been able to understand that I care for her, although at no point have we discussed the gulf between us in terms of our world view and personality types. It really is like the meeting of people from different millennia, rather than a generation gap of thirty-five years. Still, I like to help with her domestic duties. She has a small front and back garden, and I enjoy the physical work which maintaining them entails. I know she loves ice cream, so I wheeled her to a delightful French brasserie and bought her an ice cream sundae and a beer, which she really enjoyed.
It’s very hard work answering the same questions over and over, but it feels good to be able to bring some variety into her life by wheeling her around the area and just doing really basic things for her like bits of shopping.
Finally, as of August 2014, we have an official diagnosis of mixed dementia from the brain scan my mother had back in June. A psychiatrist from the local memory clinic came round to tell her the news gently. She used words like ‘atrophy’ and ‘anosognosia’ – the doubly cruel aspect of some dementias, which means a person cannot see they need help and that they are causing stress to others. She sat there, nonplussed, grumpily declaring, ‘What do you expect? I am eighty-eight years old!’ The doctor gently assessed her, asking questions as part of general conversation, but she couldn’t remember my birthday, how long she’d been at her present home, or what I did for a living. She refused the chance to try medication which might help slow down the deterioration. Twenty minutes later, after the doctor had left, mother asked me belligerently who ‘that woman’ was and why she was there. And, yes, of course she’d take medication. Why didn’t they bloody well write a prescription for her?
Our relationship is fractured by this disease of old age, but I am not emotionally wounded by the loss of ‘the person she was’ like other daughters I have read about whose mothers have succumbed to Alzheimer’s. There wasn’t much of a relationship to lose. We were always poles apart in attitude, interests and awareness. I am not grieving for my ‘best friend’ or the person who always looked after me. I am, however, deeply saddened by the mental decay of someone who, in nine decades, has never examined herself, and the opportunity to begin that process has now gone. The frustrating mystery is always in the back of my mind: I cannot fathom how someone so naturally bright, intelligent and wel
l-informed, before the dementia seized her, could not once step outside of herself and exercise reason, practise mindfulness, or make a decision about her future. She went round and round in the same very small circle all of her life; unable to throw anything away; unable to let go of her own mother; unable to break free of her conditioning and background and live. She will die less than five miles from where she was born. A life lived so narrowly seems to me a life wasted.
I will struggle when I have to speak at her funeral, as the truths of other people’s family histories are usually peppered with fond recollections of hobbies they loved or groups they joined, or things they made. There is none of that with my mother. She went shopping, watched television and cooked my father’s meals. And moaned and moaned and moaned.
I have tried to bring some simple happiness into her life since joining The Daughterhood, taking her outdoors on sunny days, buying her Sunday lunches and the Radio Times (not that she can make any sense of it any more), and have made her comfortable, brought her soft blankets and cushions. I shop for her and buy her favourite foods and enjoy cooking for her. She doesn’t remember any of it. In the same week as I spent a full eight-hour day with her, serving her meals and taking her out, she told the long-suffering neighbour that she hadn’t seen me ‘for weeks’ and that I’m ‘probably abroad somewhere’, which reaffirms the neighbour’s portrait of me as distant and uncaring. She is refusing Social Services help or any kind of care package. She insists that she is perfectly able to look after herself, although she is no longer capable of making herself a hot meal.
The Daughterhood Page 19