Dementia as a Pilgrimage
March 2023 | Changing dementia
In developing person-centred care for persons living with dementias, Tom Kitwood (1993,1997) drew upon psychotherapeutic work with its emphasis on communication and authentic contact, together with the person-centred approach of Carl Rogers, and the theological work of Martin Buber, and created in essence a psychosocial-theological approach to supporting persons living with dementias. Kitwood was drawn to the work of Martin Buber, who spoke of the significance of I-Thou, "Ich und Du".
I-Thou relating takes us out of the banal and trivial to deep connection. This deep connection can occur with nature, with animals, and with humans; I-Thou moments are possible everywhere. But we need to remove ourselves from the usual I-It way of relating, where we are consumed with other thoughts and lose sight of 'Thou'. These ways of relating are not singular words. Rather these ways of relating are a way of being that is so attuned that the terms are one word - 'I-Thou' is one word; 'I-It' is one word. 'I' cannot be separated from 'you' when an I-Thou moment occurs. Just as 'I' cannot be separated for 'it' in our usual interactions - we go about life as 'I-It' - everything is generally 'it' and 'I' am consumed by 'it'. But to find communion we need to lose sight of 'it' and see only 'thou' - in those moments we are one.
Kitwood (1997) explains:
Relating in the I-It mode implies coolness, detachment, instrumentality. It is a way of maintaining a safe distance, of avoiding risks; there is no danger of vulnerabilities being exposed. The I-Thou mode, on the other hand implies going out towards the other; self-disclosure, spontaneity – a journey into uncharted territory. Relationships of the I-It kind can never rise beyond the banal and trivial. Daring to relate to another as Thou may involve anxiety or even suffering, but Buber sees it also as the path to fulfilment and joy. ‘The primary word I-Thou can only be spoken with the whole being. The primary word I-It can never be spoken with the whole being’ (1937:2). (p. 10.)
So let's reframe dementia to be a pilgrimage, taking us on a journey of spiritual enlightenment, for the person and for those surrounding the person, the social network. On a pilgrimage, we can learn much.
So, what have I learnt on my dementia pilgrimage? Did I pick up my staff and follow? Yes. And yes there were many tears along the way, as I stumbled and fell to my knees in grief over the father I knew. But I continued to hold my staff - and that may be your faith, it may be a friend who can step in when it gets just too hard, or it may be the need for a short break so you can recharge. But I came to know my father in a new way.
Our relationship was not the same. Dad stopped phoning me and we eventually weren't able to talk on the phone even when I called him; he forgot where the toilet was at my place and urinated in the shower; he paid no attention to being in public when he coughed up phlegm as a result of emphysema and spat on the floor in the restaurant, or picked up the linen serviette and spat into it. And the words he lived by, and taught us to live by as well, "if you can't say anything nice, don't say anything at all," went out the window when he would say in earshot of an overweight staff member as she walked down the corridor, "I call her ten ton Tessie."
Yes, our relationship changed. But I had to come to terms with these parts of my new Dad. I had to confront my own embarrassment and repulsion when Dad coughed up sputum and spat in public. I had to not care what Dad said loudly, and just smile. I had to cry and accept Dad not knowing where the toilet was and just clean up if it was in the hallway. And I had to accept my limitations. I made a lot of mistakes, and berated myself for them. But I followed him. I slept in the chair beside him as much I could when he was in hospital to keep him calm. I arranged for him to have a companion when he was moved over four hours drive from me so he could have someone regular to be with him. I attended appointments with him - garbing up where necessary when he had x-rays so I could be beside him. And I observed what he did to try and engage with things he might like.
That said, Dad lived in residential care and I could never have offered him what he gained from one particular place. He loved the piano and the residence had a grand piano and one resident - whose maiden name was the same as ours and whose brother had the same first name as Dad - would play. She generally didn't like people being close when she played, but due to Dad's hearing loss she let Dad stand close by. Dad didn't hold back. He stood close and listened, and clapped and sang along to her tunes. He loved it. I could never have given him the joy he experienced there in those moments.
Being there for someone, allowing the person to be themself, in their newness of being, is vital to healthy relationships. As I said, I made plenty of mistakes - but without this dementia pilgrimage I would not have come to know my father at a much deeper, more intimate level. It was a pilgrimage in knowing and connecting.
It is not a pilgrimage any one of us would choose. But no pilgrimage is easy. It is supposed to shed light, and help us come to new knowledge, emotionally, psychological, and spiritually.
Are you prepared for your dementia pilgrimage?
Connection Matter is here to support you on your travels.
Until next time.
Stay safe. Stay connected. Keep listening.
Never stop learning.
Kitwood, T. (1993). Towards a theory of dementia care: The interpersonal process. Ageing and Society, 13(01), 51-67.
Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham [England]; Bristol, PA: Open University Press.
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>> CONTACT US @ CM <<
I-Thou relating takes us out of the banal and trivial to deep connection. This deep connection can occur with nature, with animals, and with humans; I-Thou moments are possible everywhere. But we need to remove ourselves from the usual I-It way of relating, where we are consumed with other thoughts and lose sight of 'Thou'. These ways of relating are not singular words. Rather these ways of relating are a way of being that is so attuned that the terms are one word - 'I-Thou' is one word; 'I-It' is one word. 'I' cannot be separated from 'you' when an I-Thou moment occurs. Just as 'I' cannot be separated for 'it' in our usual interactions - we go about life as 'I-It' - everything is generally 'it' and 'I' am consumed by 'it'. But to find communion we need to lose sight of 'it' and see only 'thou' - in those moments we are one.
Kitwood (1997) explains:
Relating in the I-It mode implies coolness, detachment, instrumentality. It is a way of maintaining a safe distance, of avoiding risks; there is no danger of vulnerabilities being exposed. The I-Thou mode, on the other hand implies going out towards the other; self-disclosure, spontaneity – a journey into uncharted territory. Relationships of the I-It kind can never rise beyond the banal and trivial. Daring to relate to another as Thou may involve anxiety or even suffering, but Buber sees it also as the path to fulfilment and joy. ‘The primary word I-Thou can only be spoken with the whole being. The primary word I-It can never be spoken with the whole being’ (1937:2). (p. 10.)
So let's reframe dementia to be a pilgrimage, taking us on a journey of spiritual enlightenment, for the person and for those surrounding the person, the social network. On a pilgrimage, we can learn much.
So, what have I learnt on my dementia pilgrimage? Did I pick up my staff and follow? Yes. And yes there were many tears along the way, as I stumbled and fell to my knees in grief over the father I knew. But I continued to hold my staff - and that may be your faith, it may be a friend who can step in when it gets just too hard, or it may be the need for a short break so you can recharge. But I came to know my father in a new way.
Our relationship was not the same. Dad stopped phoning me and we eventually weren't able to talk on the phone even when I called him; he forgot where the toilet was at my place and urinated in the shower; he paid no attention to being in public when he coughed up phlegm as a result of emphysema and spat on the floor in the restaurant, or picked up the linen serviette and spat into it. And the words he lived by, and taught us to live by as well, "if you can't say anything nice, don't say anything at all," went out the window when he would say in earshot of an overweight staff member as she walked down the corridor, "I call her ten ton Tessie."
Yes, our relationship changed. But I had to come to terms with these parts of my new Dad. I had to confront my own embarrassment and repulsion when Dad coughed up sputum and spat in public. I had to not care what Dad said loudly, and just smile. I had to cry and accept Dad not knowing where the toilet was and just clean up if it was in the hallway. And I had to accept my limitations. I made a lot of mistakes, and berated myself for them. But I followed him. I slept in the chair beside him as much I could when he was in hospital to keep him calm. I arranged for him to have a companion when he was moved over four hours drive from me so he could have someone regular to be with him. I attended appointments with him - garbing up where necessary when he had x-rays so I could be beside him. And I observed what he did to try and engage with things he might like.
That said, Dad lived in residential care and I could never have offered him what he gained from one particular place. He loved the piano and the residence had a grand piano and one resident - whose maiden name was the same as ours and whose brother had the same first name as Dad - would play. She generally didn't like people being close when she played, but due to Dad's hearing loss she let Dad stand close by. Dad didn't hold back. He stood close and listened, and clapped and sang along to her tunes. He loved it. I could never have given him the joy he experienced there in those moments.
Being there for someone, allowing the person to be themself, in their newness of being, is vital to healthy relationships. As I said, I made plenty of mistakes - but without this dementia pilgrimage I would not have come to know my father at a much deeper, more intimate level. It was a pilgrimage in knowing and connecting.
It is not a pilgrimage any one of us would choose. But no pilgrimage is easy. It is supposed to shed light, and help us come to new knowledge, emotionally, psychological, and spiritually.
Are you prepared for your dementia pilgrimage?
Connection Matter is here to support you on your travels.
Until next time.
Stay safe. Stay connected. Keep listening.
Never stop learning.
Kitwood, T. (1993). Towards a theory of dementia care: The interpersonal process. Ageing and Society, 13(01), 51-67.
Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham [England]; Bristol, PA: Open University Press.
< Back
>> CONTACT US @ CM <<