Rang the Unit this morning to see if LB wanted to come to town with us and have some nosh out. He’d been to the farm on Friday and had been quite chilled over the weekend.
“Maybe. Maybe not,” was the answer. This means no. I rang back a bit later to see if he wanted us to get him anything.
“No, thank you,” he said to the staff member relaying the question.
“Can you ask him if he wants a t-shirt or a dvd, or anything?”
The answer was “DVD please.”
Rich, Tom and I went into town. Tom started chatting about when we’d gone to watch Skyfall with LB. I’d forgotten, but Tom remembered how LB had sat patiently in the dark waiting for the bright daylight fight scenes so he could read his bus ticket. Hilarious. Kind of.
There’s something here about choice and constraint. But also about difference and tensions around making sense of our lives and the social world we live in. I still think of LB as an unlikely ethnographer, but that doesn’t help us understand how he makes sense of his life. This remains a mystery really.
I have read with interest how many of your posts talk about the frustrations with LB being asked to choose what he wants to do and the net result of that is that so often he chooses to do nothing. I feel your frustration acutely and am reminded of situations that I have personally come across.
I’ve seen that there are ways to engage or motivate a person to do something that would be in their best interests that in my experience, some care workers and professionals do not always exercise. Family members, more often than not, understand exactly how to do this without removing their loved one’s right to decline. I think it has enormous implications in this consent issue. Consent can be implied and sought non-verbally or indirectly, without any issue of a person’s rights being witheld or abused.
My son (with ASD) on being asked “Would you like a drink of water?”, will always reply “No thank you”. Polite, perfectly appropriate and acceptable. However, if he is presented with a pint of chilled water without first asking the question, he will say “Oh, thank you” and drink it happily. He still has the choice whether or not to drink it, but will accept without resistance (and even gladly usually) something that he would refuse if offered in advance. I wonder, with trepidation, what he would do if in LB’s position. Decline everything offered in advance is my best guess. Horror.
Likewise, my father, when he had dementia and was hospitalised for a while would be asked, “Would you like a wash?”, to which he would always reply with the same “No thank you.” However, if he was guided to the hand basin and it was filled with warm water and he was handed a warm flannel and soap, he would do a pretty good job of washing himself whilst chatting about other things. Clearly, if he had resisted when being respectfully guided to the hand basin or had he pushed away a bowl of water that was brought to him, this would be accepted as a clear indication of refusal.
They both simply needed a more proactive approach.
Of course, no person must ever be denied their right to choose and give consent, but some understanding of human nature and an individual’s natural tendencies has to be taken into account. No more so than where there is vulnerability and limited mental capacity. Positive encouragement and non-verbal delivery of expectations as in the examples described is not wrong, still allows for an individual to decline what is offered, yet is a way of giving a person what is undoubtedly in their best interests.
Perhaps these examples are too simplistic when compared with LB’s situation but I wonder if there is a similar issue here after all. I wonder if the care workers say “LB, would you like to go to town later with your family for a meal out ?” Or do they say, “LB, your folks are coming at noon to take you out for some nosh.” I know which one I’d prefer them to say.
Thank you for sharing your journey with LB. I feel as though I am on your journey too in the tiniest way; I wish I could help somehow. I hope that the journey ahead becomes easier and calmer for you all and that you will all receive the necessary support to keep at it.