Sharon Snir is a gestalt psychotherapist.

Looking for Lionel

How I Lost and Found my Mother Through Dementia

By Sharon Snir

Allen & Unwin

Copyright © 2010 Sharon Snir
All rights reserved.
ISBN: 978-1-74175-951-8

Contents

Foreword by Dr Henry Brodaty,
Foreword by Deborah Glover-Uetz,
Introduction,
1 My mother, Lily,
2 Reactions to Alzheimer’s,
3 Scared about dementia,
4 Protein, plaques and tangles,
5 Dementia is a transition,
6 Dementia and the soul,
7 Losing David,
8 I’m Lily,
9 If you knew chaos like I knew chaos,
10 Oh dear, what can the matter be?,
11 Where, where, where can it be?,
12 Frightened friends,
13 Breaking the silence,
14 Putting the past to rest,
15 Discovering despair,
16 Dementia is a stigma,
17 I didn’t plan to be your mother,
18 Whispering behind her back,
20 Where’s Lionel?,
21 The last night,
22 When I lost you (once, twice, three times …),
23 I’m just mad about Lionel and he’s just mad about me,
24 What’s love got to do with it?,
25 I don’t think I love her anymore,
26 I want a kiss too,
27 Now don’t you worry, I’m just dying,
28 Nurse, nurse!,
29 The Coppertone kids,
30 Looking for Lionel,
31 Rainy-day friends,
32 Learning to speak dementia,
33 Laugh and the world laughs with you,
34 I’m sorry I make you cry,
35 Not today,
36 Guilt,
37 Slow down, you move too fast,
38 Dropping down a gear,
39 Look at me, walk with me, talk to me,
40 The key is validation,
41 Coming to our senses,
42 Meeting again for the first time,
43 Get off my chair!,
44 Your mother is a violent woman,
45 I wonder who’s kissing her now?,
46 Cherished moments,
47 Singing me softly,
49 I’m married?,
50 Wandering doesn’t mean you’re lost,
51 Celebrating what is not lost,
52 I could have danced all night,
53 Broken hips and mended hearts,
54 You silly billy,
55 Leah,
56 You just don’t get it, do you?,
57 Respect,
58 When validation goes out the window,
59 Flourishing,
60 Adjusting my eyes to the new Lily,
61 Earth, technology and dementia,
62 India,
63 Sorry to leave you,
64 Lost and found,
Notes,
Resources,
Acknowledgements,

CHAPTER 1

MY MOTHER, LILY

About twelve years ago my mother began to show signs of dementia. The first signs were so subtle that they were easy to dismiss. Our family did not speak about what was happening for a long time.

Growing up with my mother Lily was not easy. For as long as I can remember she was kind and cruel, sweet and bitter — and stunningly beautiful. The main focus of her world was my father, Lionel, followed by the other essentials of her life: the hairdresser, art, travel, friends, clothes and social events.

Try as I would to be appreciated, accepted and loved by Lily, she rarely showed any interest in me or my sister, Donna, unless we were on ‘show’. She had a short temper and would reprimand me regardless of where we were at the time. This only made me try harder to be the child my mother wished for. On the other hand, her friends thought of her as a confidante. To them she was a wise and open-hearted listener, someone who could be trusted with their deepest secrets.

When Lily began to change, naturally her friends did not understand what was happening. Little by little she forgot their names, and the dates and places they planned to meet. She forgot how to turn things on and off. She forgot how to get herself to where she wanted to go and how to get herself back again. She no longer recognised friends and family members. She lost the ability to discuss current events and recent family happenings. She forgot how to play cards, make a pot of tea, and distinguish between an apple and a knife.

Her changes frightened most of her friends away. She began to cry for no particular reason and hung up the phone before conversations were over. Many of her friends were confronted by her behaviour and terrified that if this could happen to Lily, it could happen to them, too. Most of them stopped calling.

These friends who left never got to meet the emerging Lily. Still charming, witty and funny, she had also become softer, and more vulnerable. Never sure what she believed in before, she now knew, without a doubt, that she believed in God and she thanked Him repeatedly every day for the smallest things. Lily now adored every baby that she passed in the street. She lit up every time someone smiled at her and with a childlike innocence warmly acknowledged them as if they were old friends. Those friends who left Lily’s life never saw her look deeply into their eyes and tell them, from the heart of her being, that they were so beautiful and that she loved them.

The changes became more noticeable. Lily began to ring me a few times a day and every conversation began by her asking me what my plans were for the day. At first I would tell her she had just called me and she would contradict me, saying it was the first time she had spoken to me that day. She became frus–trated with my father when he would innocently correct her. At first she occasionally forgot someone’s name but as dementia progressed she forgot everyone’s name, except Lionel’s.

After eleven years of caring and covering for Lily, my father, Lionel, suffered a heart attack one day in the synagogue. It was not his time to die, but that was the last day my father ever looked after my mother by himself.

In 2008, there were 227,300 people with dementia in Australia, with the number expected to be 731,000 by 2050 unless there is a medical breakthrough.

CHAPTER 2

REACTIONS TO ALALZHEIMER’S

Some people tend to respond to Alzheimer’s and other forms of dementia by pretending it is not really happening. They dismiss the signs with such comments as, ‘Oh, she’s been forgetful all her life’ or ‘He has always been a scatterbrain. It’s nothing to worry about.’

‘I forget things too. You are fine. It’s okay.’

Or people believe this is a condition that needs to be under–stood. They feel more must be done and find ways they can help. They look for solutions to the problems that arise. They organise petitions to build more special care residential homes. They write books about dementia, choose to become geriatrics professionals to help these people live with dignity. They become advocates and activists who fight for the rights of the elderly and those with dementia.

Then there are those who see Alzheimer’s as something shameful, and even disgusting. They feel that if someone shows the signs of dementia they should be put away somewhere safe where they cannot disturb or upset anyone.

It is estimated that 35.6 million people worldwide will be living with dementia in 2010. This number will almost double every 20 years, to 65.7 million in 2030 and 115.4 million in 2050.

Understandably, a lot of us are afraid of Alzheimer’s. It is unknown territory, a journey without a chance of any U-turns. It’s natural to ask, ‘What if it happened to me? What if it happens to someone I love. How would I cope?’

Mum’s friend, Tracy, would ask me how my mother was whenever she saw me. I would tell her that Mum was fine, healthy — but that she had been forgetting where she parked her car or left her handbag, and that she would get very upset when such incidents happened. ‘Your father should put her into a home and get on with his own life,’ she would say brusquely. She rarely called Mum anymore. Like many others, she no doubt found Mum’s dementia off-putting and confronting.

Until dementia touched my life, I knew very little about the condition. It has been for me a transition from ignorance to knowledge, from grief to acceptance, from sorrow to joy and from fear to love.

CHAPTER 3

SCARED ABOUT DEMENTIA

Just the mention of dementia or Alzheimer’s has the power to make the calmest of people shudder. Simple lapses like forget–ting to pick up the milk on the way home, not remembering the name of an old friend, or walking into a room and realising we have no idea why we are there, can push a panic button, leaving us with thoughts of dread: ‘Oh my God, I think I’m getting Alzheimer’s’ or ‘I hope I’m not getting you-know-what.’

Telltale signs

Whilst writing this book I interviewed almost 30 individuals who knew someone with dementia. Roberta was one of them. She told me she felt she was already following in her mother’s footsteps. ‘I do suspect I will get it because I already see the same signs in myself … I am 52 next month and I can see … the same signs I saw in my mother when she was this age. I used to have a photographic memory … I don’t have that memory anymore and I even feel confused about things that I was very confident about previously. I do suspect that I may be on the same path. I haven’t done anything about it. But I have heard there is now a blood test that will be able to tell if I have the propensity for dementia and I am definitely going to do that test.’

Embracing the present

Anne also has some fear she may get Alzheimer’s, having also watched her mother go down this road. However, her philosophy is ‘… to be the best, friend, wife, mother, human being I can and to like who I am. I think that is so important. I’m determined to enjoy myself while I can. I keep myself busy. I love music, for example, and sing twice a week …I think as long as I seize the day and make sure I have a fulfilling life I am going to use every moment I can in living my life, to the fullest.’

A senior moment?

Every time Lily forgot something she would jokingly say, ‘I must be getting Alzheimer’s.’ How or why she got Alzheimer’s I cannot say. However, she certainly thought about it a long time before it became a reality.

Some people couch their fear in more politically appropriate language such as, ‘I am having a senior moment’ or ‘Don’t mind me, it’s just menopause.’ Nevertheless, when we pass a certain age and forget something, many of us fear it is the big ‘A’.

Forgetfulness pure and simple

When we get confused we can step into fearful fantasies that we might be getting Alzheimer’s and worry about what that will mean for us, our work, our family and friends. It is important, though, to remember that most of us will not get Alzheimer’s disease.

Although Alzheimer’s disease often begins with a loss of memory, forgetting things does not mean we have Alzheimer’s. I am of the belief that the more we focus on something nega–tive, the more likely we are to create it. Lily had been forgetting things for as long as I can remember her, yet she did not have Alzheimer’s when she was thirty or forty years old. So what was it that caused her to be forgetful earlier in her adult life? I can only surmise that with her very busy life, work and social commitments taking up every minute of her day, she never allowed herself to stop, take a few long breaths, become still. I imagine she was rarely really present. Neither my sister nor I can remember a time where Lily sat down and listened to music, for example. She never took a minute to contemplate, to meditate. Everyone who lives this way, whose thoughts are scattered and unfocused, will inevitably forget things. That does not mean they will get Alzheimer’s.

Not everyone who jokes, ‘I must be getting Alzheimer’s’ does so.

But if we focus on disease we may help create disease. If we focus on arguing, we tend to create more arguing. Of course, this works in both directions: if we focus on peace, we create peace. If we focus on compassion and love, we help create more compas–sion and love. Whether Lily was destined to get Alzheimer’s, I don’t know. However, I am certain that her worry about this possibility over the years didn’t help.

CHAPTER 4

PROTEIN, PLAQUES AND TANGES

So, how do you know you, or someone you love, has Alzheimer’s?

First your doctor will rule out other brain or medical problems before they focus on a diagnosis of Alzheimer’s disease. By using brain and psychological testing, brain imaging, and other tech–niques they can determine if someone has:

• probable Alzheimer’s disease — the person has no other illnesses that may contribute to the symptoms

• possible Alzheimer’s disease — the person meets the criteria for other illnesses that may contribute to his or her mental problems.

I found it interesting to learn that a definitive diagnosis of Alzheimer’s can only be made after the person is dead. An autopsy of a brain affected by Alzheimer’s reveals distinctive changes. There is an accumulation of a protein substance in the form of plaques, or clumps of fibres, in the brain’s grey matter. These plaques contain a hard, waxy deposit that affects the blood vessels around the brain.

Another characteristic of a brain affected by Alzheimer’s is tangles within someone’s neurons composed of an abnormal form of protein. We need our neurons — cells in our nerve tissue — to process and transmit information. Sensory neurons, for example, respond to touch, sound, and light and then send signals to the spinal cord and brain. Motor neurons receive signals from the brain and spinal cord and send messages to our muscles when we need to move. Scientists believe that the plaques and tangles cause neurons to shrink and eventually die, first in the memory and language centres of the brain, and finally throughout the brain. Sometimes the process can take seven to ten years or even longer. And sometimes there is a rapid deterioration.

This happened to the father of Greg, one of the people I interviewed. ‘Dad was not only a busy family doctor but taught medicine at the university for thirty years. He loved his work so much we used to joke that he was married to medicine and we were just a pleasant distraction. When he started to forget patients’ histories and struggle with answering students’ questions we knew something was wrong. In retrospect it all happened very quickly. He stopped work and almost at the same time stopped talking. In less than three years he couldn’t walk without help and lost the ability to feed himself. He always smiled, though. Even when his face could no longer show any emotion, if I waited long enough, I could see it in his eyes.’

CHAPTER 5

DEMENTIA IS A TRANSITION

So what is dementia in practical terms? Basically, dementia is a transition. When a wife can no longer look after herself or a father no longer remembers how he once interacted with other family members. When a friend can no longer remember our name. When a work mate no longer knows who we are. And in response we, too, begin to change.

Initially we try to hold on to what we know. We correct our husband when he makes a mistake. We disagree with our friend when they are telling a story. We confront our loved one when they lose our keys. We get angry when our mother forgets to meet us or our wife hides our laptop computer. Some of us try to cover up. Some of us pretend this is not really happening. Some of us talk about it to everyone we know and some of us tell no one.

Reality check

Whatever the case, dementia always holds up a mirror and reflects back all our fears and insecurities. It is then that we can begin to examine our own behaviour, our own attitudes, and our own judgments. We can, if we choose, be brave and face what is happening right now and let go of what we want to happen. We can become aware of who we are at present — feeling fragile, wondering how we’ll cope, angry this is happening to someone we love, terrified about the changes this will bring.

Letting go

Coping with someone with Alzheimer’s is exacting. It helps to begin the journey by letting go of past baggage, old resentments and hurts. One of the first places many people turn to get help is their local Alzheimer’s Association. These centres, located in most cities around the world, are staffed by social workers, coun–sellors and experts in the field. They not only understand the problems associated with Alzheimer’s but offer support groups, and individual counselling if necessary.

Some people also feel comfortable talking things over with a minister or priest and others choose to confide in close friends. Although reaching out at a time like this can be difficult, real–ising we are not alone can make the world of difference.

Letting go of past hurts frees us to be in the present moment.

If we choose, we can allow dementia to reconnect us to the only thing that is real, and that is this present moment. Serina, whose father died recently, describes this so well. ‘Dad was a grumpy man most of his life. It was never easy for me to be with him. Alzheimer’s just exaggerated it even more. There was a lot of yelling during those last years. My mum trying to correct my dad, my sister defending her son whom Dad seemed to always pick on. But I finally got to spend some time with my dad. He would sit with me and talk. I would take him on a daily ride around town … always the same route … always the same conversation, never changing. Mum would ask me how I could sit with him for so long and I told her I just had patience. I wasn’t looking after him all the time like her. But what I really wanted to say was … finally, this man I call Dad is noticing me. But now that he has been gone a few years, I think I was noticing him more.’

When Serina was with her father she was not thinking of other things. When we allow ourselves to fully see and hear and be with our loved one, the relationship becomes a heart-to-heart experience. Serina was not concerned with doing or saying the ‘right’ thing. Her purpose was to be with her father in whatever way he wanted. Even when our loved one is agitated, delusional or upset, when we let go of how they should be, we can embrace them exactly as they are.

For those who have dementia it can be a transition from being the one everyone depends on, to becoming dependent on everyone.

More than one million Australians are involved in caring for someone with dementia. Understandably, this results in significant strain on families and carers as they struggle to deal with the daily challenges that arise when aloved one has dementia.

Claire’s dad did not believe in asking anyone for help. She told me, ‘He had come to stay for a few days and was getting ready to go to bed. He had been in the bathroom and was trying to get into his pyjamas. I heard him call me so I went in. There he was, all tangled up in his pyjamas and in his gruff voice he said that he didn’t know how to get into these stupid things. I told him the way they make pyjama pants nowadays is ridiculous. I told him not to worry and I bent down and helped him to put them on. He started to cry and whispered he never thought this would happen to him.

‘I started to cry with him, then he looked into my eyes and asked me whether he had been a good father. I told him he had been the best. He nodded again and I felt he believed me.’

For some, it is a transition from the fear of life, death, failure or success, to simple acceptance that this is to be their new journey. For some people it is a transition from being attached to the material world to reconnecting to their soul.

(Continues…)Excerpted from Looking for Lionel by Sharon Snir. Copyright © 2010 Sharon Snir. Excerpted by permission of Allen & Unwin.
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