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The Leveson Centre for the study of Ageing, Spirituality and Social Policy

 
A sacred space: communicating with my mother

Rosemary Clarke writes:

I have written this piece because I feel passionately that I want other people to know about a very simple approach which in my experience has transformed my mother and our relating in the late stage of her dementia and which I assume could do the same for many people living with dementia and their carers. Put very simply, what this approach intends is to encourage and support the those living with dementia to express themselves in whatever ways are available to them and to whatever extent they can and want to.

My mother's developing dementia

My mother is 90. The first signs of what turned out to be dementia emerged some five or six years ago - the usual memory lapses and slight confusion. It has been a matter of grief to me that I then did not recognise this as the onset of a disease for which various sorts of help were available. I simply assumed that, like her mother and aunt before her, she was 'going senile', that there was nothing to be done beyond taking care of her as best we could, and that she would simply become more forgetful and confused. It was only when I discovered The Alzheimers Society that I began to learn about this disease: its nature, the likely stages of the disease, the drugs available to slow its progress, the different types of residential accommodation that exist, the many resources with the help of which it is possible to respond to people whose brains are changing, and so on.

Sadly, it seems in retrospect, each time I discovered some new information it was just too late, as my mother was by then moving on into a different stage. Similarly, as she became silent, unmoving, more and more drawn in on herself physically, I simply 'did my best' - attempting to communicate, to engage with her. I would sit with her. I would say simple things. I would stroke her face, her hand. No response: she continued to stare ahead as if I were not there. I visited less often; I timed my visits to coincide with meal times so that I could at least feed her. But I felt very disconcerted, sometimes rejected, certainly useless. I came to believe that my mother was unable to respond at all, that her brain was so clogged with plaques and tangles that there was no activity. And yet I could not quite let go the possibility that there were things going on because of the occasional word or phrase that emerged out of the blue. 'Oh I see!' was the most common - 'common' meaning once in three weeks probably.

And as my mother is in a standard nursing home where the staff have no formal training in working with people with dementia, there was no suggestion that she could be any different. Similarly I had not read anything that suggests that people in the late, silent stages of this illness can be positively approached in any way. Doubtless this reflects the limitations of my reading - I may well discover that others have been helping such people, as I now know to look for this. But my point is that my experience has been all along that of not knowing that there are possibilities out there to be found. Hence my desire to shout my discovery from the rooftops in the hope that others in situations like mine will hear!

From the vantage point of several weeks since first using this approach with my mother, it now seems blindingly obvious. I had been trying, unsuccessfully, to communicate to my mother. Now I am seeking to help her to communicate outwards: to whomever or whatever. The fact that she cannot speak (to all intents and purposes) merely means that she is post-verbal. She does, it turns out when I really pay attention, have several ways of expressing herself. And the miracle is that in so doing she is once again engaging with me, sometimes very directly and focusedly. Which in turn means that I have been able to respond to her, again not primarily using words, or at least very few, though voice tone is important.

My new approach

I learned about this approach on a weekend workshop offered by RSPOPUK (Process-oriented Psychology). It is known as coma work and the purpose is to enable the person in a coma, or coma-like state, to express himself or herself to the best of their ability. There are many extra possibilities beyond the basic method which I have used: it is possible to involve the whole family, codes for indicating simple information can be devised, and so on. But the basic approach is the one I have used with such success. On arriving in my mother's room, I settle myself very close beside her in such a way that I can speak into her ear and at the same time have my finger tips on her wrist, at least to start with. Usually this entails me kneeling to one side of her reclining chair or her bed. I don't expect any contact from her at this stage, though very occasionally she turns to me. Next I check carefully what activity my mother is already engaged in. She may, for example, be looking, or chewing (she does that a lot), or moving one finger a tiny bit. She may be moving her facial muscles or even a foot. She might sigh. Any tiny event is important.

I will then choose to focus on one of these, to start with at least, the one that seems to me the most energetic or striking. With my voice and sometimes also with my hand (or just a finger) I will support my mother to 'go with' that little impulse, to give it its fullest expression. Always I am following her lead, never suggesting or initiating. At the workshop, as I witnessed the facilitator, a New York therapist, saying 'wow' and 'gee, that's fantastic' as he demonstrated how he works, I could not imagine myself, a middle class English woman, being as uninhibitedly expressive towards my elderly mother. Life is full of surprises. My mother's responses have elicited from me absolutely genuine amazement and delight. Typically, in the weeks since we began this, I will find myself commenting encouragingly on her looking/seeing: 'Yes, you have a good look', 'Oh that looks interesting/upsetting/ amazing' (depending on her expression as she looks), and so on. Or I encourage her chewing, with 'That's good, you really chew it', or, if my intuition prompts me thus, 'That's fine, you chew it over'.

And almost all of the meetings we have are now spent with my index finger and her thumb in a constant 'dance': pressure from her thumb is replied to with the same pressure from my finger at the same speed. Sometimes the dance is slowish and soft, other times it is firm, insistent, other times very pressing. And all the time I am encouraging this activity with my voice/words: 'What an energetic/busy/strong finger!', 'This is lovely, our fingers talking.' A few times, her whole hand starts to move away from her body, where it is usually held tightly, and around in the air; I simply keep, literally, in touch as she does this, while also speaking my interest and encouragement. And once or twice she has seemed to be pushing, so I offer my palm held against her fist (her hands are most often in fists), with as much firmness as she is pushing, so that she has something to push against.

This can be very tiring, not least because it requires constant attention and because it is also demands physical stamina: my mother is usually in a reclining chair and I kneel beside it and lean towards her - hard work for various muscles - as it is essential to be very close to my mother's ear and face.

The rewards

But it has been worth every moment because the effects have been transformative, startling, and at times amazingly moving. As far as I knew I was simply attempting to encourage my mother to express herself, a worthwhile end in itself of course. In the event, so much else has happened which I thought would never happen again. The very first time we tried this, I said at the end 'Goodbye for now' and to my astonishment my mother said 'Goodbye for now' and, after a short pause, 'You are kind.' On one occasion, even before I got down beside her chair, she looked up at me and said 'Hello darling.' Another time, she suddenly turned and looked straight into my face and stayed looking and looking and looking, like a baby does. Just recently she lifted her head a little off the pillow, at the same time pulling my hand: sensing her intention, I moved my face right close to her and she kissed me.

She 'speaks' much more often, sometimes words, the occasional phrase, sometimes sounds. Our finger meetings are sometimes like little waves on a smooth sandy beach in calm weather - a very gentle to and fro, with my voice and occasionally hers also 'conversing'. Very interestingly, when I remark on her chewing, albeit encouragingly, she often stops; and a few times she has taken my finger to her lips then into her mouth and given it a good chew! My understanding is that biting and chewing are expressions of aggression, by which I simply mean energy which wants to go and do something 'out there'. So it seems to me much more healthy for my mother to be biting something other than herself: she is thus making an impact on the world, at least her little bit of it, making a difference. And there have been times when she is quite angry and at her most vocal: she may bite the spout of her beaker and make a face which I recognise as exasperation, while also pushing with her hand vigorously. Sometimes she smiles and looks very accepting. Whatever she comes up with, I truly can support her and encourage her.

In my working life I am a psychotherapist, and it is second nature to me to pay attention to everything that my patients do, not just to what they say. Things like the shaking of a head while a person is saying 'yes', a constant scratching at oneself, a foot held in tension, eyes moving rapidly - all these unaware activities I believe may offer clues about hidden impulses, denied memories, disallowed thoughts. It simply had not occurred to me to give the same attention to the tiny glimpses of my mother's interior life that were and are available, the tips of her icebergs. I can now recognise that she is simply post verbal and that we can communicate without words at least to an acceptable degree, and sometimes in a way that is quite beautiful, even awesome. Words such as communion, intimacy, love are wholly appropriate.

I see now how, as she ceased to be able to speak in the ways she always had, her main medium of communicating deserted her. I remember her often starting to say something, hesitating, trying again, then actually saying 'Oh I can't say it, I won't bother.' I imagine that she began then to retreat inside herself and perhaps understand herself all right and then, maybe, not even be able to do that. I don't know. But certainly, it never really occurred to me that we could find alternative ways of communicating, beyond holding hands. And what certainly didn't figure for me was to find any way to help her to express herself. I simply tried harder and harder to express myself to her: completely one way as I now recognise. And I see that in other people who engage with her; for the most part they speak to her, hoping she will receive/understand them. It is so obvious now and so simple and so profound: we need only help my mother and all those in her condition to 'say' what they want to 'say' and they will then 'speak' with us, and maybe 'hear' us, engage with us.

I don't think it is an accident that I spend my time with my mother in these ways on my knees. Our time together is characterised by honesty, nothing in the way, by just being. It feels to be a sacred space.

Rosemary Clarke

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