SHARING A WORLD WITH MY GRANDMOTHER
DESPITE OF ONE OF US IS LIVING WITH ALZHEIMER’S DISEASE
Sophia van Ghesel Grothe
Literature thesis MSc Brain and Cognitive Sciences Instituut voor Interdisciplinaire Studies
Universiteit van Amsterdam
supervisors: Laura Vermeulen
Faculteit der Maatschappij- en Gedragswetenschappen
Maarten Coolen
Faculteit der Geesteswetenschappen
student number: 10310525 date: 18 December 2020
ABSTRACT
SHARING A WORLD WITH MY GRANDMOTHER
This thesis is an account of my journey to understand the experiences I have when I visit my grandmother. My grandmother is diagnosed with Alzheimer’s disease. Even when my grandmother makes ‘mistakes’ during my visits in the nursing home, probably due to Alzheimer’s disease, her lessons in acceptance, moving on and other matters essential to living a happy life were unparalleled. Her words proved to me that she (still) had deep insight into what it means to care for others. This made me wonder: ‘how is she still able to do this?’ I investigated how scientists explain the effects of Alzheimer’s disease on my grandmother’s capacity to experience meaning and her ability to share it with me. Scientific approaches could not inform me about experiencing and sharing meaning new meaning in the moment she made ‘mistakes’. I needed to have a framework to discuss experiencing and sharing meaning, and found it in Merleau-Ponty’s concept of ‘world’. A world is our fundamental way in which our surroundings exist for us. Even during disease, a world is meaningful as it allows us to experience meaning, be it in a different way than before during health. I applied this notion of world and related concepts to a visit, which enabled me to describe how my
grandmother and I came to share a world despite one of us was living with Alzheimer’s disease. I attended lovingly to her, as a ‘meaning-maker’ with an invaluable perspective on the world. In addition to her words, I also attended her (bodily) movements as possible expressions of the meaning she experienced and acted along her with her to discover and share her world. I guided the wheelchair, while my grandmother guided the meaning-making. Going outside made our surroundings exist for us like going on a trip, to which my grandmother responded with enjoying, while the closeness between us grew in our loving intentions to each other. I would like to translate the insights I have got from writing this thesis about building and sharing a world with my grandmother into an edited film, also to make this picture of building a shared world despite one of us was living with Alzheimer’s disease stand in contrast to a ‘story of loss’ and ‘mistakes’ commonly told around Alzheimer’s disease.
PREFACE
SOFIE/SOPHIA’S WORLD
I am writing this thesis for my grandmother. She might not understand this thesis, but I am writing this to understand the experiences we are sharing, despite she is living with Alzheimer’s disease. Writing this thesis allowed me to sit closer to her on the sofa, and see beyond Alzheimer’s disease’s infamous loss. I am introducing myself here in the preface, as I want to take you on a journey of experiences. Since experiences are always experienced from a first-person point of view, I am inviting you to get to know me a little bit first.
Ever since I was a child, I have been a bit of a dreamer, questioning what is generally deemed obvious and taken for granted. As a three-year-old, for example, I proclaimed to my grandmother that I would never kill her, as I would not be able to talk to her any more. Rather than fantasizing about murdering my grandmother, I wanted to share with her something we implicitly assume in daily life: we need to be alive to interact. The way many children’s books present our surroundings in a manner differently than we are used to, inspires kids to engage in this sort of questioning. A well-known example is De wereld van Sofie [‘Sofie’s world’] (1996), which tells the story of Sofie who receives philosophical lessons via the mail. It is a book by Jostein Gaarder, the same author as my favourite book at the time. For now, let us say that ‘our world’ comprises the meanings Sofie and I can share. Sofie and Sophia ‘shared a world’ through their interested attitude to the philosophical realm and the way in which children relate to objects around them – i.e., for us a bed would not (only) be a place to sleep in, but could also turn into a space ship, bouncy castle or mythical dragon.
The topic of this thesis is the world my grandmother and I share. Why investigate this? Alzheimer’s disease is prevalent and the way we, as a society, have tended to approach this disease does not bring us closer together. We, myself included, tend to see loss, rather than love. This thesis hopefully paints a picture of how my grandmother and I build a shared world despite one of us is living with Alzheimer’s disease. I experienced that love can help us build up a shared world, even in the face of seemingly insurmountable obstacles like living with Alzheimer’s disease.
I will investigate how meaningful living with Alzheimer’s disease can (still) be, which hopefully will also inspire you to question what is usually assumed: we cannot share meaning while one of us is living with Alzheimer’s disease. I will take you along a journey what is needed sometimes from me to share meaning, which can, in turn, inspire and help you to discover a world you can still have in common. First, however, I will turn to what scientists have written about the effects of Alzheimer’s disease on my grandmother’s capacity to experience meaning and share it with me.
INTRODUCTION
VISITING MY GRANDMOTHER
I have experienced my grandmother, Joke, as a loving, creative, idiosyncratic, playful woman. Her passion was always singing, she proudly wore her self-sewn clothes everyday, even now, at 90 years old, and always believed in God: a God of love. As she was at her best at the centre of attention and always had a big imagination, her role as a primary school teacher suited her well. In her presence, spoons, cuddly toys, and other objects came to life. She talked to them and let them talk back to her, out-loud. In addition to my mother, she raised three more children. The family lived in a house that was designed by my grandfather, Sophier, who was an architect. In their retirement, my grandparents travelled the world. My grandmother always foregrounded certain stories of hers and had a habit of repeating them, even during the same conversation, throughout her life. If I remember correctly, she had eight favourite stories that she told over and over, most of which revolved around her mother and late husband. My grandmother’s positive attitude and lust for life never ceased to surprise our family: when her husband passed away she continued to explore the world. I find it endearing that she used to say that she did not need a heaven because she had a beautiful life, but hoped there was one for others who did not.
I had the privilege to be around her a lot as a child. I enjoyed our time together, in which we played and tinkered together and she read me stories. I acquired her habit of saying ‘enig’, which translates from Dutch to special, wonderful, and unique. I felt strongly connected to her, and enjoyed the kisses she gave us, her grandchildren and children, on the top of our heads. For me, my grandmother has been a wise one, positive to the bone. As her grandchild I got to know her as a kind, gentle woman but my mother and aunts assured me she could be stern as a mother. She corrected their homework mistakes with a red pencil, which still is a frightening memory to them. My grandmother’s neighbours informed me she could also be stubborn and dominant.
My grandmother became older, I became older. On a July afternoon in 2013 we played together with a digital jigsaw puzzle on my nephew’s tablet. My grandmother – joyously – tried multiple times to put a puzzle piece in the left corner that had a tab on the left. I was on the brink of explaining her how a jigsaw puzzle worked, when I remembered that, as a child, my grandmother must have taught me how to take the shape of the puzzle piece into account, when placing puzzle pieces into the larger puzzle. I found it hard to see that the obviousness of how a puzzle works seemed to be lost on my grandmother. I studied neuroscience at the time and ‘diagnosed’ my grandmother with impaired visual-spatial cognition, deeply worried about her inability as a known sign of developing Alzheimer’s disease. I imagined how, at that very moment, amyloid plaques were developing in her brain and was overcome by the thought of losing my grandmother to this emptying disease. Fortunately, I did not see my concerns over the puzzle reflected in my grandmother’s reaction at all. While I was staring off into space worrying, she was enthusiastically playing with a new toy, touching the screen and interestingly looking at the colours and movements on the screen. Playing with this toy was meaningful to her. Feeling a sense of relief, I never explained how the puzzle worked but attempted to join my grandmother in her approach to what, to her, were exciting challenges. This challenge was far more fun than the puzzle itself.
My grandmother changed, I changed. Although impaired more and more in daily life, her positivity seemed completely unaffected – and mine grew. The disease, which she had been diagnosed with years later, was not as ‘emptying’ as I thought. On the contrary, I began to see glimpses of the person beyond the disease with increasing frequency, just like I experienced while interacting with patients during my clinical internship at the hospital when studying psychology. I remember sitting near to each other on her sofas, I on the one, my grandmother on the other sofa1. After hearing her tell the story of how she met her husband repeatedly, I was contemplating how I could connect with her again. At that moment, I could only come up with questions like ‘how was your week so far?’ and ‘do you have plans for the coming days?’. My grandmother would not know these things, I thought tensely. 'How does it feel living here?’, I asked finally. ‘Oh', she cheered, 'I am enjoying it so much!’ She let the cuddly bears speak to us, as well as the cuddly cat behind her on the sofa. In a snap, just before the moment I smiled, arose a thought asking: ‘Is this for real? Am I learning about my grandmother through letting the bears speak to us? It feels strange, and different, but quite wonderfully playful as well’. I smiled, and together we pointed out which other cuddly toys were dressed, and which only had coats on. ‘Ah, how wonderful if everything around you is alive.' My grandmother smiled at me, ‘I am feeling very blessed’. Instead of focussing on what I could not ask her, I was happy that I could connect with my grandmother, be it in a different way. After a moment of hesitation, I went along equally happy as I would have years before, when I could still communicate with my grandmother. I was connecting with her again and that, I realized, is what really mattered to me and what I feared was no longer possible. Unlike before, when I was focused on the ‘story of loss’ commonly told about
Alzheimer’s disease, I approached my grandmother as she was with me. If I would only approach her in terms of loss, I would not be open to my grandmother in the moment, only to the grandmother as I remember her. I would not be able to join my grandmother in any enjoyable activity – as unmistakable evidence of cognitive decline is easily spotted in practically anything we could do together. Preoccupied with the way we used to interact has largely become untenable, I would not know how to interact at all. What use is it to discuss past or prevent events with someone who neither remembers nor will remember them?
I can still learn from my grandmother when we are together. I have not only learned about her as a person and what is means to live with Alzheimer’s disease, but also about valuing the moment. Being together with her helped to make a habit to think and talk about what is happening at the moment, what I am experiencing in the now, instead of in the past or future.
My grandmother, now placed in the nursing home, experienced her new living quarters in very different ways over the two years she has lived there. The place was sometimes when I visited a classroom in which she taught, other times it was her son’s house, my house, a vacation home or her parents’ house. Sometimes, I shared what the room meant to me. My grandmother’s answer ‘no, this is not my house’ is not just evidence of her cognitive decline, but also exemplary of her profound stubbornness. I tried to communicate my own experience of the room, by recommending my own strategy for understanding hers: I told her the room exists differently for each of us – for her a sometimes
1
Just like my grandmother, I forget details. I do not remember which year or month this visit was. Just like mygrandmother, who sometimes makes up stories up to hide that she forgot something, I am going to say it was on a cold November afternoon three years ago.
unfamiliar place with her familiar stuff, other times a school or holiday home or something else, for me a nursing home. She did not reply and continued with her own story. One month later, my grandmother shared on an afternoon that she must have done something wrong to end up at the nursing home. After I recalled how she left her house in the middle of the night in her pyjamas on more than one occasion, she could understand. She shared that she could not accept why a former school teacher would end up at a nursing home while pointing at her heart; an example of how she often surprises me with her wisdom and deep insight.
Around 1 in 3 women and 1 in 7 men will develop Alzheimer’s disease (Alzheimer Nederland, 2020) and this number is expected to rise in the future (Bussel et al., 2017). Hence an investigation into how a person living with Alzheimer's disease might still be able to experience and share meaning is ‘not merely a philosophical exercise’ but could have profound implications for improving quality of life and care for many (Kontos, 2012, p. 12).
In Chapter I, I elaborated on an experience I have when visiting my grandmother. How would scientists explain the effects of Alzheimer’s disease on my grandmother’s capacity to experience meaning and her ability to share it with me? To what extent would they deem this possible, if at all? How would they conceptualize the ‘meaning-sharing’ between me and my grandmother? These questions only seemed to turn my attention further away from my experience. I experienced that we were sharing meaning. I tried to move beyond the available scientific approaches, by studying the experience I have. I turned to Maurice Merleau-Ponty’s philosophical concept of ‘world’. Even in disease, such as Alzheimer’s disease, everybody has a world. In Chapter III, I tried to link Merleau-Ponty’s concept of ‘world’ and related concepts to explain my experience, and learn to understand my grandmother as a meaning-maker. I refrained from correcting my grandmother, and opened up to how she understood the situation instead by looking her closely in the eye, watching from which angle she looked, listening to the tone of her voice. I moreover understood wise lessons she shared. This thesis brings a fresh insight that elders living with Alzheimer’s disease can be very wise, and that I, as my grandmother’s grandchild, have a habit to help building a shared world in which we can blossom.
CHAPTER I
REVISITING MY GRANDMOTHER
While I strolled through the endless-seeming corridors of the nursing home on a February afternoon in 2019, the odour of urine was strongly present. It was in sheer contrast to my grandmother’s former house, which romantically smelled of wood and blown-out candles. I found my grandmother dressed, as usual, in her colourful clothes, at a table along with her new housemates. I bowed to sit next to her. Instead of a smile, I met a tired and worrisome look on her face and her body posture was collapsed. Accordion music turned on, and the singing of her housemates ran (‘aan de Amsterdamse grachten...’), but my grandmother was silent. She turned to me instead of her music sheet and shared: ‘normally I feel like singing, but not at the moment’. She whispered her proposal to leave in my ear, and hastily informed the nurses that her mother was sick and that she could receive a phone call at any moment. We brought each other to her room to talk, where we talked for half an hour.
At the beginning of our conversation, my grandmother was worried and sad. She told me that her mother was admitted to the hospital. Her eyes were focused on the ground and her posture was collapsed, she told me she was hungry and looked tired. I thought that she was talking about herself. She was admitted to a nursing home. According to her, however, she was referring to her mother, ‘now you know what it will be like if I would suddenly got admitted, because I am your mother’. ‘You are my grandmother’, I replied. ‘Oh I'm your grandma already, huh? Then I don't really know.’ My grandmother paused, and assured me, ‘she is my mother, I am your mother’. When I shared what I love about her as a grandmother, she interpreted it as a story about her mother. She informed me that she is my child’s grandmother. I lost the thread there. Who am I, and what role do I need to take on in order to participate with my grandmother instead of correcting her? The moment I accepted myself as her daughter, and myself as a mother, I sat more relaxed on the sofa. I cons ciously tried to prevent myself interpreting the situation as I was prone to do. I refrained from scanning my grandmother’s words for evidence of cognitive deficits, and did not correct her according to how the surroundings appear to me. Now, I was more open and the conversation felt wholesome and intimate, instead of pathological and impersonal as it could have felt if I stayed in a ‘story of loss’. S he first talked about her worries over her sick mother, later about her mother’s eminent death and eventually said that her parents were dead. I was moved by her worries and reconciliation as it appeared to me. We sat close to each other, and when I cried she comforted me with a kiss on top of my head and held my hand. She talked about her old age, shared significant events of her life, talked about the normalcy of birth and death, about my child and what it means to care for a child. It occurred to me that despite she is living with Alzheimer’s disease, my grandmother had remained as wise as ever. She behaved as a guide who could teach me about humanity and reminded me of truths that I forget going about my daily life.‘I'm really happy that we were able to talk’, she shared.
There was a clicking sound from the hallway, she turned her head and looked at me again. ‘We hear your grandchild now’, she said. We smiled and laughed, coming closer to each other on the sofa. ‘That's “enig”!’ She shared about how life is mostly fun and sometimes sad. She paused, and said, ‘and if you can accept that’ – stretching the word ‘accept’, in a manner peculiar to her – ‘you can go further. When you were a small baby you were very’, she laughed, ‘different from what you are now’. My grandmother laughed again and we looked at each other’s twinkling eyes. ‘We may experience all those differences, I think that is “enig”. And at some point you will come here, and then there will be a small child, who is currently…’ She erected her back and squinted her eyes to be able to look further in the room. ‘He is not in bed, is he? No. So we still have to watch where he is.’
In the end, we went looking for ‘my child’ together and, while walking together closely through the corridor of the nursing h ome, we rejoiced over how wonderful it was that we could talk. ‘At least you would remember it, not I when I will be “away”2.’ She held my hand
2 Might my grandmother be aware of her memory problems? In this and earlier conversations, also before she was living with Alzheimer’s disease, she often referred to death with euphemisms such as ‘being away’, so the term ‘away’ carried an unusual weight or significance in the context of our conversation.
tightly and insisted to walk with me until the exit, so she could watch me disappear around the corner. It is something she always did when we visited her in her old house. We kissed each other on top of each other’s head and said goodbye with loving smiles.
In contrast to, let us say, ten years ago, my grandmother made ‘mistakes’ here that I could ‘mark’, like she had
highlighted mistakes of her children and pupils in the classroom with a red pencil for decades. First, I could not rely on my grandmother to recall basic facts, such as my name or that she was my grandmother. Furthermore, many of her stories were illogical, and inconsistent. In the same conversation, she both claimed to be waiting for a doctor’s call about her mother and recalled that her mother had died. She even referred to my child, whilst I was not aware of having a child. A person influenced by the ‘story of loss’ might say that my grandmother ‘lost touch with the reality’, indicating that the same situation can have a totally different meaning to my grandmother than it does to me and others who, in our opinion, are still in possession of their logical faculties. To me, where we were was my
grandmother’s new home, a place to dwell on the arrangements my family had made to make her feel at home, such as the items of hers they chose to move over. To me it was also a nursing home, a place in which to judge the quality of care and remember the nursing department’s security code. For my grandmother, it was only rarely her home and almost never a nursing home.
Even when playing along with her, acting as her child (instead of her grandchild) when she identified me as such, we still shared a deep concern for the well-being of our family: I for my grandmother, and she for her mother and my child. I could see, through the reflection of my own twinkling eyes in hers, that we were experiencing love and connection. There was room in our get-together to express and communicate about acceptance, the importance of moving on and the joy in recognising the many special (‘enig’) so-called ordinary things can be. We understood the meaning of a kiss on top of our heads, not merely as a gesture of love but also as how a ‘kissing monster’ behaved to her (grand)children. Even though my grandmother made ‘mistakes’, probably due to Alzheimer’s disease, her lessons in acceptance,
moving on and other matters essential to living a happy life were unparalleled. Her words proved to me that she (still) had deep insight into what it means to care for others. I could be with her to experience what care means to us. Even more, she invited me with her language (‘now you know what it will be like if I would suddenly got admitted...’) and comforted me with gestures like kissing me on top of my head, to get close to me and to experience what she was going through.
This made me wonder: ‘how she is still able to do this?’ In what follows we will investigate how scientists explain the effects of Alzheimer’s disease on my grandmother’s capacity to experience meaning and share it with me. To what extent do they deem this possible, if at all? How would they conceptualize the ‘meaning-sharing’ between me and my grandmother? For sake of brevity, I have made a selection of influential scientists working in different disciplines to discuss and who, taken together, reflect the most common scientific approaches to the issue.
The ways in which scientists studying Alzheimer’s disease would approach me and my grandmother’s interaction can be divided into three broad categories: a biomedical, psychological and anthropological approach. Biomedical
scientists approached my grandmother as an individual with a disease and focussed on how her mind is in decline due to brain injury. Differently put, a patient suffering from Alzheimer’s disease was conceived of as in the process of losing
her sense and her self. Tom Kitwood was a clinical psychology professor would approach my grandmother ‘as a person’. Kitwood stressed how the experience of living with Alzheimer’s disease always varies from person to person, and would stress the importance of relating to her with love. Some scientists from the anthropological discipline not only approached my grandmother as a person, but also stressed a conception of her as a bodily being. Nursing professor Alison Phinney is a prominent example. She would approach my grandmother’s experience of living with Alzheimer’s disease in everyday life as a reflection of her brain impairment. My grandmother could be slowed down, lost and blank during everyday activities, such as having a conversation, due to the illness (Phinney & Chesla, 2003). In contrast to the biomedical approach Phinney’s focus was not brain breakdowns, but breakdown in habits.
Biomedical explanation
The biomedical discipline is inhabited by scientists who aim to study and cure diseases of their patients, and in their endeavour almost exclusively concern themselves with ‘reality’ as (they assume) it exists independently from their observation and can objectively be studied. As a subject worthy of biomedical study then, Alzheimer’s disease is considered first and foremost as a physical phenomenon. However, biomedical researchers recognise the extraordinary social significance of Alzheimer’s disease and other diseases that affect the mind. The mind in biomedical science is the thinking part of ourselves, that can plan, reason, memorize, judge, etcetera – I am inviting you to think along with me, because in this endeavour you will find your mind at work. The mind is what makes us human, according to many biomedical scientists. The mind emerges from the body, but is a separate entity. According to biomedical scientists, the mind arises from the complex organization of tens of billions of brain cells, neurons, which (at least in their healthy state) receive, process and propagate incoming information. Amongst scientists, there is no consensus on the mechanism in which this complex information processing system, the brain, gives rise to thoughts, but there is consensus amongst biomedical scientists that it exists by virtue of electrical signals. According to
biomedical scientists, the passing of electrical signals through the brain of a patient suffering from Alzheimer’s disease is disrupted by certain processes – including but not limited to the accumulation of protein fragments (amyloid-beta plaques) outside neurons or that of an accumulation of an abnormal form of protein inside neurons (tau tangles; Jack Jr et al., 2018). The patient subjected to these processes is at the mercy of the brain’s capacity to compensate for the changes (Alzheimer’s Association, 2019).
Typically, forgetfulness is the first symptom of Alzheimer’s disease that is noticed. This is usually reported to medical authorities and caregivers when forgetfulness starts creating dangerous situations, such as leaving the stove on overnight. According to biomedical research, we could expect memory decline to worsen over the course of the disease and be accompanied by other symptoms, such as a loss of interest in activities that used to be enjoyable, personality changes and disruptions in other brain functions such as swallowing or talking, depending on what brain areas the disease spread to.
In the biomedical interpretation, every change I notice in my grandmother will be hypothesized to be caused by changes in the brain. In other words, in the biomedical approach, to understand Joke’s neurological deficits requires insight into how and which areas of her brain were affected by the disease. The damage to neurons in her
hippocampus, for example, could explain why she does not remember that I am her granddaughter or that her mother passed away. Damage in the frontal lobe could explain her learning problems and damage her brain stem could explain her unusual sad mood before our conversation. But what about the question of whether and to what extent Joke’s Alzheimer’s disease affects her ability to experience or share meaning? In their systematic analysis of post-mortem cells, mouse models and blood oxygenation, biomedical scientists provided many explanations on the causes and consequences of brain diseases, but did not offer much if any insight into how brain disease affects our ability to connect to each other and experience closeness. My use of jargon here is deliberate, to convey the distance between biomedical research methods and the lived experience of human beings. Biomedical science offers no framework to approach meaning as it is experienced.
As far as I am aware, no biomedical scientist has explained where closeness resides in the brain nor how our
interaction could dispel her sad mood and lead her to share her wisdom on the importance of acceptance and the joy in being a mother. This is not to say that biomedical research could never discover a causal relationship between my grandmother’s ability to connect with me and the state of her brain. I would rather argue that an account of human connection solely in terms of chemistry, physics and biology by definition leaves out how we experience the closeness.
I notice that if I am ‘marking’ my grandmother’s ‘mistakes’ according to the ‘story of loss’ like a biomedical researcher, I am suspiciously and distantly scanning for symptoms, whereby I am mostly open to approach my grandmother as losing her sense and self. I see that she is no longer able to memorize or learn and link this to her brain – instead of engaging with the whole being who is my grandmother sitting there on the sofa in her colourful clothes. Even if my grandmother’s mind is declining according to biomedical scientists, most of her gestures and language made sense to me, and mine did to her. Even compared to my conversations with ‘healthy’ people I do not have an emotional attachment to, what she means was usually evident to me. Even now she has ‘forgotten’ that I am her granddaughter in the sense of failing to identify me correctly, I still experience a profound sense of closeness to her that I do not share with others, despite them having perfectly healthy brains. She still talked in her own, unique way, like she always did. She also still bowed her head to talk to me, said ‘enig’ and, as ever, kissed me on the top of my head and wore colourful clothes. Even more, in the way my grandmother behaved in the situation, I could recognize my grandmother in all her uniqueness. Our interactions provide unmistakable evidence that the imaginative, loving creature she had always been lives on. She stretched words in a way peculiar to her, she wanted to wave until I was out of sight and was characteristically joyous. She was even aware that she usually enjoys singing. Our conversation felt familiar, I heard my grandmother speak as she always did, with a seemingly unassailable optimism and unshakeable faith in the power of love.
Kitwood’s explanation
In contrast to the biomedical approach, Kitwood (1997) argued that the classic distinction between mind and body is an error. He stated, in contrast, that psychological and neurological states are two ways to describe the same phenomenon (Kitwood, 1997, p. 19), like light can both be described as waves and as particles (Baldwin & Capstick, 2007, p. 10). The mind does not merely emerge from the body in this approach: it has become the same entity.
In turn, Kitwood approached Alzheimer’s disease as much as a brain disease as a psycho-social phenomenon, arguing neurological damage can be slowed or halted when family or other caregivers succeed in meeting psychological needs to function as a person. Love, according to Kitwood, is thereof the most basic need. Kitwood defined love as the wholehearted and unconditionally given acceptance from human to human (Kitwood, 1997, p. 81). Kitwood argued tat love is especially important for neurological development as it is a necessary backdrop against needing to stick to one way because it was beneficial for survival in the past.
Note that, in the biomedical approach, in the existence of ‘my child’ (i.e., Sophia’s child) cannot play a part in bringing me and my grandmother together. After all, ‘my child’ does not exist empirically; I do not have a child (yet). In Kitwood’s approach on the contrary, the same ‘fabricated grandchild’ could help us create and express meaning. The introduction of ‘my child’ and my new role as Joke’s daughter may be unreal or confused in a scientific sense – it allowed us to relate to each other in a way very similar to how a grandchild and grandmother do. We related to each other with closeness and love.
I would like to know whether Kitwood’s approach can provide insight into why my grandmother is still able to experience and share meaning even now she is living with Alzheimer’s disease. Kitwood helped to explain that, regardless of her neurological damage, my presence with her on the sofa, my recognizing and acknowledging her with love, could help her brain cope with Alzheimer’s disease, and, in turn, promote experiencing meaning. But if we identify ‘meaning’ in the psychological sense with its (presupposed) neurological counterpart, how could we ever explain how it is possible to share meaning? Do people also share the same neurological states, when they share meaning? To my knowledge, Kitwood did not elaborate on meaning-sharing. Critics argued Kitwood did not succeed in bridging the divide between mind and body and therefore fails to account for many important phenomena (Baldwin & Capstick, 2007, p. 184). In Chapter II, I will argue that the critics were correct and that meaning-sharing can be accounted for when we truly bridge the age-old division between mind and body.
Phinney’s explanation
Building on Kitwood’s notion that mind and brain states are two ways to describe the same phenomenon, Phinney opposed any division between mind and body. She not only argued that the mind is the same entity as the body, but stressed that it should be identified with the body as a whole, not just the brain. She conceived of humans as ‘lived bodies’ who ‘live and breathe, perceive and act, speak and reason’ in everyday life, normally without being aware that we are doing so (Phinney & Chesla, 2003, p. 284). Phinney is the first scientist mentioned in this thesis to introduce a framework to explain meaning. Meaning, according to Phinney, is woven into everyday habits and practices, where the lived body ‘knows’ how to respond to situations, without having to rely on thoughtful effort or conscious thinking. Phinney still approached Alzheimer’s disease as a brain disease, but her research stressed how the breakdown in the brain is embodied, or ‘represented exactly’ (Cambridge Dictionary, 2020), in the breakdown of everyday habits and practices the lived body undergoes. As a consequence of this breakdown, the lived body no longer ‘knows’ how to respond to situations and has to rely on thoughtful effort or conscious thinking to still be able to experience meaning. When elders have come to rely on conscious thinking when habits are lost and conscious thinking is no longer available to them, they lose their ability to (meaningfully) engage with their surroundings.
Phinney and Chesla (2003) noted in the discussion that, most of the time, living with Alzheimer’s disease continues to be smooth, and lifelong habits and practices are effortlessly sustained. Based on participant observation and in-depth interviews with elders living with mild to moderate cases of Alzheimer’s disease and their family members, they distinguished three distinct ways in which breakdown of everyday habits and practices could proceed in the lived body. I will list their findings first, and then explain them more in-depth below. Phinney and Chesla first explained that in Alzheimer’s disease activities that were easy and effortless before can suddenly require conscious effort. Driving a car, for example, again feels anew, as if the concentration that an inexperienced driver relies upon is required again. As a consequence of no longer having driving skills ready-at-hand, the body slows down as it relies on thoughtful effort to stay involved in the activity: ‘keys, brake, mirror, other mirror, check, gas’. Secondly, the researchers explained, surroundings do not always appear immediately meaningful any more; it is as if the meanings are hidden. There is no longer, for example, an immediate impulse to turn at a corner or a bodily ‘know-how’ to cut a broccoli in bite-sized pieces. The researchers shared their observations of a women with Alzheimer’s who, although still skilful with knives, nevertheless took fifteen minutes to cut a broccoli. She started well while picking the crown, but continued to look around awkwardly and disorderly pick up small pieces of broccoli from the cut board. She sometimes put small pieces down on the board again and picked up small broccoli pieces from the bowl to cut them, leaving larger pieces uncut. Thirdly, Phinney and Chesla explained that elders sometimes become disengaged from their everyday habits and practices entirely. The elders become ‘blank’: they do no longer respond to their surroundings on their own initiative (Phinney & Chesla, 2003, p. 249). Phinney and Chesla used words as unfamiliar, difficult, bizarre and empty to describe the experience of the breakdown. Elders, for example, report that it is ‘frightful’ to know that you went for a walk without recalling anything about it and ‘boring’ when the body ‘does not step forward’ to do habits that you were used to.
When my grandmother mistakenly identified me as her daughter, I noticed that whenever I corrected her by saying that I am actually her granddaughter, she paused the conversation. This could be a sign of what Phinney called embodied breakdown. My grandmother needed more time as questions to her own identity are no longer evident but require a conscious effort to work out, Phinney would hypothesize. My grandmother’s contradiction of her mother’s admission on the one hand and her mother’s death on the other hand could also be a sign of embodied breakdown. It reminded me of the example of cutting broccoli, where the elder was cutting broccoli chaotically. My grandmother was not logically explaining her story, but she managed to convey a story nevertheless. For me, it was a story on acceptance and moving on. She was still ‘skilled’ in getting through to me: she knew to sit close to me on the sofa, to twinkle with her eyes, construct full sentences. Simply put, she was still an expert in what it means to care and how to be close to someone.
Although Phinney’s approach could move beyond Kitwood’s approach to explain meaning, it still failed to explain my grandmother’s capacity to experience meaning and share it with me like I experienced. Specifically, I am left to question how she can experience and share new meanings, in the sense that she could develop a different involvement with her surroundings, one that is meaningful in new ways? In moments when she paused and
is a notion on the ‘building-up’ of new meaning me and my grandmother achieved, despite her breakdown. Phinney’s approach, moreover, did not provide me a framework to understand how we can share meaning. Can we only understand each other when we have the same habits? To my knowledge, Phinney did not elaborate on meaning-sharing. In other words, I am interested in the way in which Joke herself might not experience her condition as a breakdown or loss of meaning at all, but (also) as a meaningful experience in itself – and how she is able to share it with me.
Revisiting my experience
My own experience brought me to the conclusion that my grandmother and I connect with each other and therein experience meaning such as closeness despite one of us is living with Alzheimer’s disease. We both care for each other and our family, feel love and connection, and relate to each other as we are used to do. When spending time together, my grandmother looked at me, talked to me, held my hand and kissed me on top of my head, called me her daughter and erected her back and squinted her eyes to look for her grandchild. The consequence of her behaviour was that we got closer. I felt her love, her heartfelt wish for me to have a wonderful life. In fact, my grandmother mostly taught me about life, not the other way around. I was interested to learn whether scientists could help me to understand how someone with an affected brain can still experience meaning and share it.Biomedical scientists could explain every change happening to her brain, but ‘experience’ or ‘meaning-sharing’ was not their object of study. Hence their insights were of little use to me, when I try to figure out how I connected with my grandmother. I cannot not look inside her brain, and neither will I find ‘meaning’ there. Kitwood’s theory helped me to understand that lovingly attending to my grandmother could help her brain cope with Alzheimer’s disease, and, in turn, promote experiencing meaning regardless of her neurological damage. However he could not provide a framework on how we experienced and shared meaning other than that it had a counterpart in our brain. Phinney’s research did provide a framework to talk about meaning, but only in the context of what remains despite of the (cognitive) breakdown, central to her description of Alzheimer’s disease as an embodied breakdown of the brain. Phinney’s research could not help me to explain how she could still share wisdom in moments when she paused and contradicted herself. In sum, none of the scientific approaches could account for my experience when visiting my grandmother that day.
CHAPTER II
EVERYBODY HAS A WORLD so Schneider and Joke as well
‘My body has its world, or understands its world without having to go through “representations,” or without being subordinated to a “symbolic” or “objectifying function”. […] The body is our general means of having a world. Sometimes it restricts itself to gestures necessary for the conservation of life, and correlatively it posits a biological world around us. Sometimes, playing upon these first gestures and passing from their literal to their figurative sense, it brings forth a new core of signification through them – this is the case of new motor habits, such as dance.’ (Merleau-Ponty, 2014, p. 141, 147-148)
In Chapter I, I shared that my own experience brought me to the conclusion that my grandmother and I connect with each other and therein experience meaning such as closeness despite one of us is living with Alzheimer’s disease. I asked how it is possible for my grandmother to still experience meaning and if so, how she is able to share meaning with me? In the different sciences described above, I do not find satisfaction to explain how she could experience and share meaning despite she is living with Alzheimer’s disease. Experiencing meanings was hardly spoken of, and if spoken of, are only elaborated on in terms of loss or breakdown. Meaning-sharing was not spoken of.
Phenomenology is the discipline I will draw upon to find an adequate framework to explain how she experienced and shared meaning. In laymen terms, this is a part of philosophy that studies the nature of our experience.
Phenomenology’s aim is not about making statements about our surroundings that accurately represent how things actually are. Its aim is to give full attention to the experience itself. To this end, I will elaborate on the chapter ‘The spatiality of one’s own body and motricity’ from Merleau-Ponty’s book Phenomenology of perception (2014), where he shared about how, even in illness or disease, everybody can experience meaning.
When we normally move, we do not have to be explicitly aware of the objects around us, nor of our own movements (Merleau-Ponty, 2014, p. 109). Objects have a broad definition of object, events and situations in Merleau-Ponty’s phenomenology. Movements have a broad definition of ‘conduct’ in Merleau-Ponty’s phenomenology. It includes ‘demeanor, deportment, bearing, manners’ (Carman, 2008, p. 84). The body already guides us through situations we are in. The system of motor movements that is available for us to go about day-to-day life effortlessly is in Merleau-Ponty’s phenomenology called the ‘body schema’. Our body schema contains motor meanings our body can understand and use without us needing to think. The body schema makes an undifferentiated object with certain qualities into a car, without needing to think ‘oh it has a steering wheel, a poke, a mirror, it must be a car’. Merleau-Ponty called such thoughts ‘representations’, and argued we normally do not need those to respond adequately to our surroundings. The body schema, in other words, turns the undifferentiated collection of objects and situations into a differentiated collection of objects and situations we know how to respond to. That is what Merleau-Ponty meant by a ‘world’. It is the fundamental way in which we make our surroundings exist for us. The concept ‘world’ has the form ‘I can’, rather than ‘I think’.In our movements, objects appear as a goal of a motor task, and thereby the object exists for us with a certain motor meaning, as Merleau-Ponty explained:
‘If my body can ultimately be a “form,” and if there can be, in front of it, privileged figures against indifferent backgrounds, this is insofar as my body is polarized by its tasks, insofar as it exists toward them, insofar as it coils up upon itself in order to reach its goal, and the “body schema” is, in the end, a manner of expressing that my body is in and toward the world’ (Merleau-Ponty, 2014, p. 103).
Merleau-Ponty used psychologists’ examinations of a patient named Schneider to explain his phenomenology. In the chapter ‘The spatiality of one’s own body and motricity’ from Merleau-Ponty’s book Phenomenology of perception (2014), he sketched how, even in illness or disease, we always have a ‘world’, but that such a world can exist differently (Merleau-Ponty, 2014, p. 115). As we will see, Merleau-Ponty’s investigations into Schneider’s world also afford insight into my grandmother’s world. Like my grandmother’s world, Schneider’s world also existed differently than ours.
Schneider was a wallet maker, whose brain region related to vision was injured during the First World War. In everyday life, Schneider’s condition was not apparent:
‘In life, [Schneider] says, “I experience movements as a result of the situation, as the sequence of events themselves; my movements and I, we are, so to speak, merely a link in the unfolding of the whole, and I am scarcely aware of any voluntary initiative [. . .] everything works by itself”’ (Merleau-Ponty, 2014, p. 107).
Schneider’s familiar surroundings were meaningful to him. Without thinking, he found himself smoothly going about his business, just like we find ourselves performing much of the tasks of day-to-day life without needing to make a conscious effort, like Phinney explained us in Chapter I. Schneider was able to deploy habitual behaviour with ‘extraordinary speed and confidence’ such as taking his handkerchief from his pocket and blowing his nose (Merleau-Ponty, 2014, p. 105). Likewise, Schneider was able to deploy habitual movements directed at newly occurring situations. Whether in his own familiar wallet-maker workspace or in the psychologists’ examination chamber, for example, his body immediately understood that ‘the piece of leather [is] “to be cut” and the lining [is] “to be sewn”’ when presented with these materials (Merleau-Ponty, 2014, p. 108). He found his hands skilfully handling the scissors and holding the leather. However, when asked to do something new, such as making a new wallet design, Schneider was like an ‘orator who could not speak a word without relying upon a text written in advance’ (Merleau-Ponty, 2014, p. 112). Even a simple ‘new’ task, such as raising his arm, required him to move his whole body erratically until he finally moved his arm, or to speak out the required movements before he could sternly move his arm while looking at it (Merleau-Ponty, 2014, p. 105, 107). Schneider simply could not lift his arm out of the blue, or with his eyes closed. Outside of his familiar surroundings, objects remained ‘phantoms’ that did not directly mean anything to him (Merleau-Ponty, 2014, p. 135).
What is happening to Schneider here, according to Merleau-Ponty?Schneider’s body restricted itself to gestures already acquired as habits (Merleau-Ponty, 2014, p. 147-148). In turn, Schneider could no longer ‘play upon these first gestures’ (Merleau-Ponty, 2014, p. 147) to create a new meaning in the situation. Schneider was ‘“bound” to the actual’ (Merleau-Ponty, 2014, p. 137), and could not move according to ‘virtual’ situations such as ‘verbal and fictional situations’ he imagined or someone else suggested to him (Merleau-Ponty, 2014, p. 111). Merleau-Ponty informed us that Schneider was stuck in the number of ways he could respond to situations, as his body could not ‘turn away from
the world’ and move according to the imagined ‘virtual’ any more. The function that normally makes it possible for the body to ‘turn away from the world’ and move according to the imagined ‘virtual’, which Merleau-Ponty called
‘projection’, was compromised for Schneider (Merleau-Ponty, 2014, p. 114). With projection, we ‘invert the natural relation between [our] body and the surroundings’ (Merleau-Ponty, 2014, p. 115). Normally, our surroundings have meaning to us immediately.We are open to change that meaning through projection.
Merleau-Ponty used the example of approaching a friend to help explain the natural and the inverted relation
between our body and the surroundings (Merleau-Ponty, 2014, p. 113-114). When we meet a friend on the street and we are not sure whether to approach her, we do not first perceive her and then approach her. Her smile and bended head already naturally guide us towards her. This guidance is not ‘causal’ (Carman, 2008, p. 109) but ‘immanent’ (Merleau-Ponty, 2014, p. 113). In Merleau-Ponty’s words:
‘[The subject] penetrates the object through perception and assimilates its structure, the object directly regulates his movements through his body’ (Merleau-Ponty, 2014, p. 134).
Or in other words: the movement ‘emerges from’ the situation, without any interposed thought (Merleau-Ponty, 2014, p. 113). Merleau-Ponty continued to argue that our movements can be guided by a re-organisation of the given world. Projection is this ability to organize the given3 world, and create a ‘free space’, a superimposed virtual space over physical space, in which we make things come into existence according to our intention (Merleau-Ponty, 2014, p. 114). Schneider could not use the function of projection. When Schneider still tried to perform movements that required a re-organization of his given world, the movements lost their ‘melodic character’ (Merleau-Ponty, 2014, p. 118). His movement could not flow from the situation here. He had to laboriously construct movements step by step by relying on representations to adequately respond to these re-organisation of his surroundings.
Schneider’s case shows us how a world can become smaller. A world is confined to the space where he could move without needing to rely on representations. It is the space where his body ‘understood’ the meaning of its
surroundings. Schneider’s world was still meaningful but he could no longer enlarge his world by creating new meanings – i.e., by adding motor actions to his body schema. He could not re-organize the world according to his projects (Merleau-Ponty, 2014, p. 115), and thereby discover possibilities in the situation that were not answerable with habits that he already acquired, and let himself be attracted to the situation differently (Coolen, 2018, p. 8). Merleau-Ponty argued that we have a world through our body, or in Merleau-Ponty’s words our ‘body is our general means of having a world’ (Merleau-Ponty, 2014, p. 147). This means that if we would not have a body, we would have no world. Merleau-Ponty informed us that Schneider’s body ‘is available as a means of insertion into his familiar surroundings, but not as a means of expression of a spontaneous and free spatial thought’ (Merleau-Ponty, 2014, p. 106). What does this description of Schneider’s case inform me about how Merleau-Ponty analysed someone’s world? Schneider’s case helps to see that a world normally has both a ‘sedimentation’ and ‘spontaneity’ (Merleau-Ponty, 2014,
3 ‘Given’ in phenomenology does not mean something basic or meaningless, but a ‘coherent configuration of things we find in a perceptual situation, as opposed to what we initiate or will or judge by our own effort’ (Carman, 2008, p. 240).
p. 132). Sedimentation is the set of habits with which we respond to our surroundings. Spontaneity allows for new behaviour and meanings in a situation, based on spontaneous thoughts about what is possible in the situation. Schneider’s world existed differently, his world only seemed to have sedimentation: he could not spontaneously abandon the given world. In Schneider’s case, his body schema was no longer an ‘open system’ (Merleau-Ponty, 2014, p. 142) that created a perspective from where he could attract himself to ‘the possible’ (Merleau-Ponty, 2014, p. 112). Schneider’s world was complete, but poorer in comparison to our world, as his body schema was permanently fixed.
Everybody has a world
‘The body is our general means of having a world. Sometimes it restricts itself to gestures necessary for the conservation of life, and correlatively it posits a biological world around us. Sometimes, playing upon these first gestures and passing from their literal to their figurative sense, it brings forth a new core of signification through them – this is the case of new motor habits, such as dance’ (Merleau-Ponty, 2014, p, 147-148).
For me, to understand that everybody has a world means to consider a world as something that the body has or is in; as something that we do not need to think of but that is already there for us to live in (Merleau-Ponty, 2014, p. 131). Everybody finds their body intended to a certain task – it differs per subject, however, whether the task is possible or actual, whether the task is necessary for life or a new motor habit. This is why Schneider’s world – like a world when living with Alzheimer’s disease – was still meaningful in its new way. The tasks that the subject is open to might be different, but it is for certain that the gestures of the body are meaningful according to the subject’s world. Indeed, when closely studying residents with severe Alzheimer’s disease of a long-term care facility, Kontos (2004) observed that elders’ movements meaningfully suited tasks. Their movements conveyed meanings, basic meanings of sitting on a chair, and more complex meanings such as giving attention to others and dancing. Elders, for example, interacted with each other and looked and listened to each other and conveyed gestures to end a conversation.
Sharing a world
If Merleau-Ponty would have known my grandmother4, how would he explain that she still experiences meaning and
we are able to share meaning? In contrast to the scientific approaches, Merleau-Ponty said that we cannot know my grandmother's experience from an outsider’s perspective. According to Merleau-Ponty, we understand each other not as ‘isolated minds’ through interpreting each other’s ‘inner’ experiences. In fact, he would argue that thinking is not what is needed to find out what someone else is experiencing at all. We, or more specifically our bodies, already know what the other experiences by drawing on our body schemas. We understand each other as ‘co-habiting bodies’ through reading each other’s movements (Carman, 2008, p. 143, 145) by placing our body schema over the other’s body. The way a body becomes familiar with another’s experience requires skill in the same way playing chess or the organ does.
After many chess plays, an expert chess player is able to perceive the possibilities for chess moves, and can perform them smoothly, even if he is cognitively distracted (Dreyfus & Dreyfus, 1984). After learning the skill, the chessboard has become a meaningful object to the body to reach the goal of winning. He does not need to consciously recall
lessons he learned. Upon seeing the chess pieces, a ‘motor space’ stretches beneath the hands of the player, where his body will play out the game (Merleau-Ponty, 2014, p. 145). The player’s body has understood chess. Similarly, when we learn how to play an instrument such as the organ, the organ becomes part of our body space and the organ’s
keyboard and stops are no longer objective places outside the body, but have become possibilities to make an ‘emotional or musical value’ appear (Merleau-Ponty, 2014, p. 146-147).
When we have acquired a habit, we have augmented our body schema. It is the body that has understood the
movement (Merleau-Ponty, 2014, p. 144) and has incorporated it into its world (Merleau-Ponty, 2014, p. 140). Likewise, if we succeed in understanding the other, our body schema broadened to literally incorporate the other (Carman, 2008, p. 144). By virtually moving like the other person we experience the same motor significations. A shared experience can therefore only take place in a shared world.
CHAPTER III
JOKE AND SOPHIA’S SHARED WORLD
How can I explain that my grandmother is still able to experience and share meaning despite she is living with Alzheimer’s disease? Based on my own discussion of Merleau-Ponty’s phenomenology, I will use his framework of the ‘body schema’ to explain how we can make a shared world come into being using our movements.
When I visited my grandmother on a November afternoon of this year I found her sleeping on a chair in the shared living room of the nursing home. She opened her eyes for a moment and after seeing me she mumbled a low-tone ‘hm hm’, and continued sleeping. Her gestures did not suggest to me any attempt to come closer and show her positivity, like she would normally do when encountering a family member. She did not recognize me, I thought.
My grandmother did not greet me when I visited. If she was not diagnosed with Alzheimer’s disease, I would have rather thought that she was not feeling good today, or maybe had drifted off in thought, but now I explained her behaviour as the product of her not recognizing me. In other words, I interpreted the situation as evidence of what meanings my grandmother had lost. Merleau-Ponty would use the concept ‘sedimentation’ to explain that there is no loss of meaning. Sedimentation is the set of habits with which we respond to our surroundings. Sedimentation ranges from very fundamental to more complex habits. My grandmother had a ton of sedimentation. She still had a very basic understanding of what it means to sit on the chair, for example. Her legs were placed stably on the ground in relation to the rest of her body. She looked at me, and made her refusal known in her gestures. Reading Merleau-Ponty’s phenomenology, helps me to focus my attention to how my grandmother can respond to situations now, rather than on how she lost her ability to respond in ways she used to do. There is no loss of meaning but rather a change of meaning.
Wallet-maker Schneider could only respond to his surroundings like he had habitually done before. His world was therefore ‘stuck’, Merleau-Ponty explained to us. Schneider’s condition therefore differs from my grandmother’s disease in an important respect. Whereas my grandmother was sometimes no longer able to respond to her surroundings like she had done before, Schneider could do nothing but.
With the help of a nurse, we exchanged the chair for a wheelchair. The moment we wheeled, my grandmother was awake and looked around attentively. While wheeling through the street outside the nursing home, she could not see my face, but I felt she trusted me. ‘Do you know where we are, grandmother?’, I asked her. ‘No, I don’t, but I am sure you do, otherwise I would sit here worrying.’ She quickly added with a high and joyous tone ‘she has a white door’, and continued to talk about doors and cars, ‘when she sees the white door she knows she is home’. I let her continue talking, and acknowledged her that I was listening by producing a high-tone ‘hm hm’ and laughing. She complimented me on how well I drove the wheelchair and she complimented every car, door, flower, trash bin and roof we drove by how beautiful it was. ‘Look! There is a dog. I feel like a dog too, I am taken out for a walk as well. I like it so much.’
When placed in the wheelchair, and wheeled outside, my grandmother was able to respond differently to our surroundings. In fact, she was positively mesmerized by our surroundings and frequently expressed how much she enjoyed this wonderful trip. This is in sheer contrast to how I encountered my grandmother when I arrived. In Merleau-Ponty’s words: a new sedimentation came into being while we were going on this trip. My grandmother
responded to this new situation with (familiar) habits, such as letting herself be mesmerized by her surroundings like she had done many times, as a former world-traveller. She also trusted me, a habit she formed by being with her granddaughter for many years. In addition to sedimentation, Merleau-Ponty would also attribute ‘spontaneity’ to my grandmother in order to explain how she is able to respond to a new situation differently. Spontaneity allows for new behaviour and meanings in a situation, based on spontaneous imaginations about what is possible in the situation. It was possible, for example, for my grandmother to fantasize on what another person would think upon seeing a door we wheeled by and to compare herself to a dog we met along the way.
In contrast to how I apply the concepts ‘sedimentation’ and ‘spontaneity’ Merleau-Ponty concluded his analysis with the introduction of these concepts. He carefully summarized what Schneider could and could not do after his accident. He saw that Schneider was able to go about his familiar surroundings, but was not able to respond to different surroundings or respond to his familiar surroundings differently. Only sedimentation was present for Schneider. Merleau-Ponty analysed that Schneider was no longer able to use ‘projection’. Projection is the function that makes it possible ‘turn away from the world’ and move according to the imagined ‘virtual’. Schneider was not able to share a world with another person, as it requires to use projection:
‘For Schneider, words, like events, are not the motive of a taking up or of a projection, but merely the opportunity for a methodical interpretation. Another person, like an object, “says” nothing to him and, although the phantoms that appear to him are certainly not devoid of the intellectual signification that is obtained by analysis, they are devoid of the primordial signification obtained through coexistence’ (Merleau-Ponty, 2014, p. 135).
My grandmother’s condition is different than Schneider’s. Sedimentation and spontaneity are both still present for my grandmother. Compared to Schneider, my grandmother was still able to share a world with me by broadening her body schema to literally but virtually incorporate me. In her compliments and in my involved engagement with her, for example, we were building closeness and love that is only shared by people who care about one another.
During our walk, I had mostly been listening. I mostly attempted to wait to see how the surroundings had meaning for her and respond to what she shared with me. From time to time I would also intervene and challenge my grandmother to create new meanings, or at least share what occurred to me, but I did not always get a ‘logical response’. Below is an excerpt from what I wrote down in this regard at the time. I deliberately put the Dutch transcript next to it, to be able to let you read along closely with how I interpreted my grandmother’s response as ‘illogical’.
We walked on the pavement in a residential street, on our right were houses with a one meter deep front yard, on our left par ked cars. I bowed my body for a moment to match my grandmother’s position to our surroundings, sitting in the wheelchair. The the cars were more visible for her, I noticed. We walked along, and while looking at our left side, I asked ‘do things remind you of something?’ [‘Doen dingen je nog ergens aan denken?’] ‘I'm concerned with the things, then I think of nothing else. What do you think I would think?’ [‘Ik ben meer met die dingen bezig, dan denk ik juist aan niets anders. Wat denk jij dan dat ik zou denken?’] ‘Maybe you think about a car you owned.’ [‘Misschien denk je aan de auto die jij hebt gehad.’] ‘She has a nice door. Yes, owned. I have something else now that I am happy with. So I don't mind. It's a shame I heard I had to, but once it happened, I thought "well, nothing I can do about it".’ [‘Oh die heeft een leuke deur, zeg. Ja, gehad. Je hebt ook weer wat anders waar je blij mee bent. Dus ik vind het niet erg, hoor. Het is wel jammer dat ik hoorde dat het moest, maar toen het eenmaal gebeurd is, denk ik “nou ja, niets aan te doen”.’] ‘Look at all the cars there’, she continued. [‘Moet je zien wat een auto’s daar allemaal staan.’]
She replied to my question whether cars in the street reminded her of a car she owned, but I did not immediately understand what she was saying. I caught myself puzzling about what she meant for a moment, instead of replying spontaneously as I would normally do in conversations. She did not share a memory or a fantasy, as I had expected, but a story on change, fulfilment and acceptance. Quickly I recognized her familiar way of turning a negative situation into acceptance and continuing her focus on moving on: she did not have a car any more, but that was not too bad after all, and my grandmother turned my attention to other cars. Merleau-Ponty’s concept ‘body schema’ helps us to explain how we are normally able to understand each other. The body schema is the whole of habits that open a world. We understand each other as we can place our body schema unto the other’s body. This allows us to relate each other without needing to think, like being able to play piano without needing to think. Through projection, and probably also through cognitive effort as I was puzzled for a moment, I understood her in the way my body would usually understand her. I experienced her ‘illogical’ response now as a response that matched the way in which our surroundings existed for her. In building our shared world, I was learning a habit to approach my grandmother as a meaning-maker. I was training myself to be open to my grandmother’s way of being open.
We wheeled back to the nursing home. I wheeled us to the door of her room and pointed on her name tag. ‘I don't live here at all, do I?’, she said laughing. ‘Let us see’, I said. I wheeled her over the doorstep. My grandmother looked around and recognized a lot of familiar furniture, like the chair. ‘We came all the way here. I like that you show me this again.’ ‘Do you know where you are now, grandma?’, I asked. ‘Yes. If you can take a picture of it, I can look at it again at home. Then I say: there we were, wasn’t that nice? Those two portraits. And here I slept. Yes. Very nice. Nice lights too. Yes of course.’ ‘Where are we now, grandma?’, I asked again. ‘Eh well in the north of, eh, yes, not from a city of course, but from the country. North of the country.’ She grew up in Groningen, in the North of the Netherlands, and in her understanding she was there, probably. My grandmother rejoiced over the prospect of sleeping in the bed, ‘as if I am in the time when I was much younger and could do all kinds of things’. ‘They’ will come to pick her up again later to go back, as she can’t stay there all the time. ‘Because you live somewhere else?’, I asked. ‘Yes. With the people here too, who also take care of me. It is no longer possible that I do it myself. Yes. Old age comes with defects, and it is not for nothing. But if you can accept that, you are still very happy. Because I am still sitting here very happily, looking around and thinking “if I go to you and if I wanted to stay a while, they say: you can sleep here”. I am a very fortunate person, because I am with you after all.’
My grandmother shared a story of a ‘little boy’ who left his bed in the middle of the night to be found by the police and never went out again alone any more. She was picked up by the police herself a couple of time when she went out in her pyjamas, when she lived in her old house, I remembered. She continued that when someone takes her, she can go out. ‘Look’, she said, ‘like now. You're making my world wide again. As you get older your world keeps getting a bit smaller, and that's okay, because you have to. Because otherwise you won't come home any more, right? But it is really nice to be here for a moment, so I thank you very much for that, because you can do this and you dare to do this, and I can see it all for a while. That's where I laid and there I sat. So nice, isn't it? And t hose curtains, yes! And those beautiful chairs. Well, very nice sweetheart.’
‘You're welcome, dear grandma.’
My grandmother was thankful that I was there with her ‘to widen her world’, as she shared on the spot. Did she mean that I took her on a trip, and showed her a different part of our planet earth? Did she mean that we shared meaning, and experienced closeness and love? I wonder here if the concept ‘world’ means the same to both of us. She shared that it is fine that the world gets smaller as you age, ‘otherwise you would not come home’. To me, after reading Merleau-Ponty’s chapter, a ‘world’ not only means a physical place we could go to to me, but also a bodily space which is meaningful. And I think it is fair to say I might also have widened my grandmother’s world in this sense. First, my
grandmother did not respond to my visit. I put her in a wheelchair and she was mesmerizing, enjoying and fantasizing. We went on a trip, and when we came back to the nursing home we went for a visit in my room, her childhood home and our family vacation home (which we do not have). New sedimentations came into existence, along with new spontaneities. Now she was talking about acceptance, for example, and shared stories of a ‘little boy’. As if in the closeness we built up again, it was given to her to relate to me by telling about acceptance and being thankful. We have lost parts of our sedimentation in our built-up world, my name for example, but as I experienced, this is not devastating to our ability to share meaning.
I left my grandmother at lunchtime in the common room. She now said ‘enig’ in every sentence. I thought of how different my grandmother responded compared to two hours ago, and as if the nurse had the same experience she shared: ‘Joke blossoms when she has visitors.’
How has my grandmother’s world widened in my visit, and made my grandmother to blossom? Merleau-Ponty’s concepts of ‘body schema’ and ‘shared world’ imply that every time my grandmother and I come together, we are building up a shared world. A shared world is the meaningful whole that we both understand without needing to think, and comes to existence in our movements. Although the wheelchair did not allow for much body movement from my grandmother except for her upper-body, it allowed me to take her for a walk and stimulated her to express herself verbally. To understand her, I attended to how my grandmother’s body schema adapted itself toward what her
surroundings had to offer. I was dedicated to consciously adapt my body schema to hers. I looked her closely in the eye, watched from which angle she looked, listened to the tone of her voice, and understood wise lessons she shared. I developed a new habit to observe my grandmother as she was open to our surroundings, and go along with that spontaneous meaning. In our trip, she guided our meaning-giving while I wheeled us walked went through our surroundings with the wheelchair.I helped create meaning by providing a different situation, especially if a situation, like the living room in the nursing home, did not provide building blocks to build our world. Building blocks are not physical here, I see them as aspects of the situation which my grandmother is open to answer with her body schema, which created a world, on which we could build together. In our movements, was made a closeness and love come into existence that is only shared by people who care about one another. We shared a care for each other, which created a blossoming world to live in.
