becky
28-05-2008, 08:51 AM
Christine Bryden – (Dancing with Dementia)
A former top civil servant – diagnosed with dementia at 46.
The following are quotes taken from her book on her experiences with having dementia, that I have used in training. Thought that otyher may find it useful. Very interesting and thought provoking looking at Dementia through a person living with the condition.
“We have no sense of time passing, so we live in the present reality, with no past and no future. We put all our energy into now, not then or later. Sometimes this causes us a lot of anxiety because we worry about the past or the future because we cannot ‘feel’ that it exists. But this fact that we live in the present, with a depth of spirit and some tangled emotions, rather than cognition, means you can connect with us at a level through touch, eye contact, smilesâ€
How you relate to us has a big impact on the course of the disease. You restore our personhood, and give us a sense of being needed and valued. There is a Zulu saying that is very true “A person is a person through othersâ€. Give us reassurance, hugs, support, a meaning in life. Value us for what we can still do and be, and make sure we retain social networks. It is very hard for us to be who we once were, so let us be who we are now and realise the effort we are making to functionâ€
“As we become more emotional and less cognitive, it’s the way you talk to us, not what you say, that we will remember. We know the feeling, but don’t know the plot. Your smile, your laugh and your touch are what we will connect with. Empathy heals. Just love us as we are. We’re still here, in emotion and spirit, if only you could find usâ€
“My stress tolerance is very low, and even a minor disruption can cause a catastrophic reaction, where I shout or scream, panic and pace. I need calm, no surprises, no sudden changes. Anxiety is an undercurrent of our diseases. I feel I have to do something but can’t remember what and often it feels like something terrible is going to happen, but I have forgotten what it is. With the stress of many activities at once, I become very focused, trying with all the brain I have left to concentrate. Telling me to rest won’t help, but helping me to complete the task will.â€
“Try to enter our distorted reality, because if you make us fit in with your reality, it will cause us extra stress.
“We feel as if we are hanging onto a cliff, above a lurking black hole. Daily tasks are complex. Nothing is automatic anymore. Everything is as we are first learning. You tell us that we have asked you that question before, but we have no recollection. It is just a blank in the past and this feels strange and scary, and yet you are getting frustrated with us. If we had an arm or leg missing you would congratulate us on our efforts but you cannot see how much of our brain is missing and how hard it is to cope so you don’t understand our strugglesâ€
The world goes much faster than we do, whizzing around, and we are being asked to do things, or respond, or to play a game, or to participate in group activities. It is too fast, we want to say ‘Go away, slow down leave me alone. Challenging behaviour? I believe that this is ‘adaptive behaviour’ where I am adapting to my care environment.
A former top civil servant – diagnosed with dementia at 46.
The following are quotes taken from her book on her experiences with having dementia, that I have used in training. Thought that otyher may find it useful. Very interesting and thought provoking looking at Dementia through a person living with the condition.
“We have no sense of time passing, so we live in the present reality, with no past and no future. We put all our energy into now, not then or later. Sometimes this causes us a lot of anxiety because we worry about the past or the future because we cannot ‘feel’ that it exists. But this fact that we live in the present, with a depth of spirit and some tangled emotions, rather than cognition, means you can connect with us at a level through touch, eye contact, smilesâ€
How you relate to us has a big impact on the course of the disease. You restore our personhood, and give us a sense of being needed and valued. There is a Zulu saying that is very true “A person is a person through othersâ€. Give us reassurance, hugs, support, a meaning in life. Value us for what we can still do and be, and make sure we retain social networks. It is very hard for us to be who we once were, so let us be who we are now and realise the effort we are making to functionâ€
“As we become more emotional and less cognitive, it’s the way you talk to us, not what you say, that we will remember. We know the feeling, but don’t know the plot. Your smile, your laugh and your touch are what we will connect with. Empathy heals. Just love us as we are. We’re still here, in emotion and spirit, if only you could find usâ€
“My stress tolerance is very low, and even a minor disruption can cause a catastrophic reaction, where I shout or scream, panic and pace. I need calm, no surprises, no sudden changes. Anxiety is an undercurrent of our diseases. I feel I have to do something but can’t remember what and often it feels like something terrible is going to happen, but I have forgotten what it is. With the stress of many activities at once, I become very focused, trying with all the brain I have left to concentrate. Telling me to rest won’t help, but helping me to complete the task will.â€
“Try to enter our distorted reality, because if you make us fit in with your reality, it will cause us extra stress.
“We feel as if we are hanging onto a cliff, above a lurking black hole. Daily tasks are complex. Nothing is automatic anymore. Everything is as we are first learning. You tell us that we have asked you that question before, but we have no recollection. It is just a blank in the past and this feels strange and scary, and yet you are getting frustrated with us. If we had an arm or leg missing you would congratulate us on our efforts but you cannot see how much of our brain is missing and how hard it is to cope so you don’t understand our strugglesâ€
The world goes much faster than we do, whizzing around, and we are being asked to do things, or respond, or to play a game, or to participate in group activities. It is too fast, we want to say ‘Go away, slow down leave me alone. Challenging behaviour? I believe that this is ‘adaptive behaviour’ where I am adapting to my care environment.