Accepting the “New Truth” from those with Dementia

I have been struggling to understand my mom’s confabulations. I asked for suggestions and Kate Swaffer came through again in spades! Kate has been diagnosed with dementia and offers perspective on how this diagnosis impacts the individual living with it.

You can see her response in the comments box on the post, but I felt it was too valuable and needed its own post. It helped me shift my view from indifference to acceptance.

Kate suggested I “let go of what is your truth and accept your mom and dad’s ‘new truth’, it will get easier. They are not intentionally lying, but confabulating some of the time, and I suspect (from personal experience) desperately trying to hang onto their old selves. With dementia, when we have insight, it becomes imperative we hide what is happening, not just to others but to ourselves as we feel ashamed and frightened. The fear of our future, our changed relationships, and the grief of losing ourselves becomes so intense that at times we simply want to hide what is happening. To give in to it is way too terrifying. Your parents are also suffering loads of grief about losing their home, their cars and licenses, and so on.”

“I went to a workshop last week which highlighted this. We were asked to write down the 6 things we valued most and share it with the others at our table. Then we were asked to delete the 2 least important. Then we had to give our list to the person on our right, and they deleted another 2. Then we had to pass our list with the remaining 2 most valued things in to the facilitator. She then ripped them up and threw them in the bin. Everyone (except me) felt utterly devastated. This is what it feels like with dementia, and probably why my list was so simple as I have already lost many of the things the others had on their list, like driving.”

Kate shared that her 6 most valued things were:
– independence
– independence
– independence
– making her own decisions
– making her own decisions
– making her own decisions

Enlightened.

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