Adjusting Our Expectations
One of my best friends has found herself in the position of family caregiver and I have witnessed the role reversal that has gradually taken place between Jenna and her father. Jack’s difficulty with memory and judgment was recently confirmed with a diagnosis of Korsakoff Syndrome, a disorder similar to dementia that is caused by low thiamine (vitamin B1) levels.
Jenna is a preschool teacher and she often compares her dad’s mistakes to those she observes in her students. And she's right. He can be impulsive and overestimate his abilities at times. He needs assistance operating the washing machine. He doesn’t recognize that heating the home with an open oven door is a safety hazard.
Jenna’s dad is now getting lost in the middle of tasks, forgetting what he just did and what step comes next. He can tinker at his workbench organizing screws and bolts for hours while not remembering why he went into the garage in the first place. Jack has been experiencing incontinence for years and lately my friend has been discovering a full bottle of urine left near the workbench. Yuck.
Remember Jenna is a teacher. She is compassionate and finds humor in the things little people say and do including the mistakes they make. And being a great teacher, she instructs them how they could do things differently to be more successful the next time. It's in her DNA to teach, explain and correct a behavior that is unhealthy, unthoughtful or unsafe. So naturally, her first response is to do this with her dad.
What is this dad?
There is a toilet right upstairs!
Why would you leave this here?
You don’t want someone to see this do you?
This past summer, I listened to a wonderful speaker named Deb Nygarrd at a local conference for family caregivers. She brought along 2 bags of rice with her. One bag weighed 3 pounds, the weight of the average adult male brain. The other corresponded to the weight of a brain in the late stages of Alzheimer’s Disease and was 1 pound. This simple demonstration was so descriptive and clear and I wish I had it in my toolbox long ago to explain the brain changes that happen as dementia progresses. People living with dementia lose brain cells and mass and can not be expected to act the way they did before.
Instructing, arguing or correcting someone living with a brain that has lost cells and function will almost always be ineffective. More often than not, they will not recognize their errors or remember your instructions.
Deb suggests that in order to avoid an escalation (and to keep ourselves sane) we must allow the person living with dementia know that ‘they are right and we are wrong’ even though that means swallowing our pride and overlooking an error. I know it’s hard to back down when you know you are correct and yes, the errors are really frustrating especially when they create extra work for us.
This is where our normal size brain needs to lead the dance to avoid the slippery slope of eliciting shame, confusion and agitation when we respond with “teacher” language. Deb had some great one liners to use to avoid arguments…
Let me get this out of your way
You’re right dad
I forgot
I’m sorry, it was my fault
Thanks for pointing that out
I’m sorry I made you angry
No caregiver gets this right 100% of the time. The natural reaction of frustration is totally human. We need to be gentle with ourselves when our own anxiety and irritation creep in. And hey - one small bonus - our loved one is likely to forget our initial imperfect response and not hold it against us.
Back to the urinal…I’m so proud of my friend Jenna and how she has adjusted her approach. She has realized that her dad may recognize an error when she points it out, but will forget her instructions and repeat the mistake over and over again. Unlike her students, he has great difficulty with new learning. Now when Jenna finds a full urinal in the garage, she empties it. Simple as that. No energy wasted with explanations about how disgusting it is and what her dad could have done differently.
Learning new ways to respond to a situation becomes our new role. Afterall, we have a 3-pound (or close enough) brain.