The story by Bob De Marco from the Alzheimer’s Reading Room that appeared in my Inbox, Alzheimer’s Patients Can’t Make Decisions, So You Must Guide Them, resonated in the same way as using horse whisperer techniques to assist people with dementia communicate and be more positive. It seems so simple, and yet I realise is very difficult to do. Reading it and exploring it further has given me an epiphany moment!
Accepting whatever the person with dementia says as their truth is difficult. When my father in law was being assessed by medical or nursing staff, and often said it was 1957 (the year he married my mother in law), there was little point in telling him it was 2010 or 2012. Often he confabulated a time, fact or date, perhaps as a way of retaining his dignity.
What did it matter to him whether he was technically right or wrong? It was his reality and we had to learn to respect it, and him. Therefore, why should it matter to us I always wondered? It meant we had to learn how to stop correcting him, and had to learn to stop thinking he was failing and getting things wrong. At that moment in time, it was his truth. The next day he could sometimes give the ‘right to us’ answer, which only compounded our confusion!
It helped for me to think of my children when they were young and sometimes had imaginary friends, or of my youngest sister when she was little, as she often went and played outside with her ‘friends’ and sometimes with the faeries. Of course, no-one else in our family could see her friends or faeries, but we didn’t keep telling her they didn’t exist. If you had seen my sister playing with them, those faeries would have seemed very real, even to you!
In searching for an image on Google images, I found this clip art. It stood out instantly as the ‘right’ image to use, as the smiley face above the √ (right) and the sad face above the X (wrong) highlighted in a very simple way why we feel the need to be right, and the need to correct someone else when we think they are wrong. In the case of a person with dementia, we impose our perception of right-or-wrong onto the PWD, whereas for them, it as if there is no longer a rational right-or wrong, rather a right-for-this-moment ‘right’.
Thinking about it like this was a small epiphany for me, and has immediately made it easier for me. Please let me know your thoughts.
Many of the blogs written by Bob are thought-provoking, as well as instructive and educational. It was clear his relationship with his mother Dotty was positive and honourable, and I salute him for having the courage to write about it for us, and the courage to look into the mirror and change himself.
In the blog, Bob said;
“When a person living with dementia says No, it is not unusual for a caregiver to try to convince them to agree, or say yes. It is not unusual for this to lead to challenging behavior, or a negative episode with the patient. This can lead to a deterioration in the Alzheimer’s caregiver – Alzheimer’s patient relationship.”
The blog ended with this;
“Dotty explained to me one day why Alzheimer’s patients always say No. She said,
“You know Bobby when I say NO that doesn’t mean anything, it’s just the easiest thing to say.” Wow. What a revelation.
The bottom line here — you must become a guide. In order to do this effectively you have to relax and accept this role. Nonverbal communication is the most important variable in this equation. The smile, the outreached palm of the hand, and internal solitude.
From time to time you might also have to lend your brain to the dementia patient. Why not? Two head are better than one.
Two people working together, instead of two people at odds.
It really is kinda wonderful once you get the hang of it.
I got the hang of it after a couple of thousand frustrating moments and stomach aches. I hope this helps you make it happen with less “strain relief” than I needed.”
Thanks once again Bob!
