Hazel, one of the Kicking the Bucket team, writes-
I was in a nursing home last week during lunchtime just sitting quietly, out of everybody’s way, observing what was going on in the small dining room. Dementia Care Mapping (DCM) is an internationally respected and recognized method for observing and recording behavior, mood and engagement of people who have dementia living in group care settings. It has been used extensively in the UK, Europe, and USA to snap shot the “culture of care” in order to capture and understand the experience of people who have dementia living in group care settings. The underlying value in DCM is that people who have dementia can and should experience wellbeing despite cognitive decline and that wellbeing is upheld in environments where psychological needs are met and the person is supported to engage with the world around them.
I was using this method to observe two of the residents in the room who are part of a project introducing music therapy for people living with dementia. My role is to go to the care home every week, on the music therapy day and use DCM to profile the mood and engagement of the residents involved before, during and after the music therapy sessions as a way of evaluating the impact of the music therapy.
But, on this music therapy day, I got drawn into something else, something not at all connected with the project. I found myself deeply engrossed in what was going on for another resident because of what he was saying and because of the response he got. He was a strongly spoken gentleman with a mesmerizing, musical Welsh accent. “I’m dying” he said, “look at my hands, they are white, all the blood is draining out of them”. The young male care worker talked to him in a gentle voice, “your dinner will be here soon” to which the gentleman replied, “ Well you better hurry up because I’m dying”.
I felt that the care worker was caught on the hop; he didn't really know what to say. He wanted to be kind, and he was. But the issue of dying was ignored even though the resident was clearly inviting, needing a discussion about dying.
There could be several takes on what was happening here. Possibly, the gentleman who has dementia was also “psychotic”. Psychosis is understood by the medical profession to be one symptom of mental illness, which can lead to delusions. A delusion is a false idea or belief held by the person who, when in this delusional state, cannot be talked or reasoned out of it. So, maybe the Welsh gentleman’s belief that he was dying was a delusion, a false one, brought on by mental illness. Another possibility is that he may have been delirious, a condition caused by drug toxicity, infection, dehydration, constipation, that causes the person to become acutely confused. Or, perhaps he was suffering from depression – this condition can cause nihilistic delusions where a fixed belief, that oneself or a part of ones body or the real world does not exist, becomes entrenched in the persons thinking.
But then, there is the much more likely possibility that the gentleman really did, in saneness, believe that he was dying and that he had good reason to believe that he was dying. It may also have been true that, as well as believing he was dying, he actually was. After all, he is elderly and elderly people die, elderly people are supposed to die.
I have spent hundreds of hours in care homes and hospitals during my career and I have witnessed that residents in care homes and patients in hospitals frequently make statements about dying. It is sadly also the case that the majority of care staff that I have observed in these situations avoid discussing death and tend to use diversion tactics. I wonder how this must feel for the person who is articulating the possibility that they may be dying to have this need for a discussion unresponded to. None of us would want an older person to be alone when they die, at the moment of death, but what about in the run up?
What should the care worker have said? I wonder if he or any of his colleagues have had any opportunity to discuss together what ought to be said when a resident wants to talk about dying. I wonder how much training is available to help care staff to learn the skills and gain the confidence to respond appropriately when a person they are caring for wants to talk about dying – and how much training about death and dying is taken up within the care sector.
My experience last week has prompted me to make sure I talk to my friends and family soon, even though I am not yet technically “elderly” to tell them (and for them to pass this wish on to paid carers if I find myself in receipt of paid-for care) that if, at any stage down the line I want to talk about dying, I don't want a cup of tea or the TV turned on or a promise of food. I want their engagement on the topic please.
The festival of living and dying, created in 2012 by Liz Rothschild Sponsor Page