Repetition is a given when dealing with dementia. How you are affected is a choice.
The torture of being asked the same questions over and over and over again (x n) can be mind-numbing and challenging to even the most patient person. The experience can be likened to the endearing punishment parents and kindergarten teachers experience when three-year-olds incessantly ask “why?” It can be cute. It can also be maddening.
Understanding why and having strategies in place can help.
When Dad was first diagnosed, and still functioning at a fairly high level, a free course on how to care for people who have dementia was offered in my town. It was fabulous. I attended the first few classes with my son and daughter. We wanted to understand what was happening, learn what to expect in the future, and be ready to support him with some solid strategies.
Walking into the classroom on the first night, we noticed a bright, orange paper on every chair. On the page, inside a starburst graphic, the words, “BANG HEAD HERE” were typed in big, bold letters.
As the evening and teachings advanced, we became more uncomfortable with what the future might hold. We were told to expect unpredictable and possibly aggressive behaviours. We’d witness delusions and hallucinations. If he lived long enough, my strong, intelligent, proud Dad would likely lose the ability to feed and care for himself. And, it was likely that we would all be forgotten at some point.
Instead of being enlightened, we left frightened.
For the first time, we realized how much there was to lose. It was sobering on a level we’d never encountered before. It was hard to imagine Dad being anything like the strangers they had described.
One of the lessons from that night was that caregivers need coping strategies too. This is where the BANG HEAD HERE sign came in. It was a prop of permission. We were told that when a person with dementia asks a question repeatedly, each time they ask it, it is always the first time…. for them. It may be the 18th time you’ve heard it in the last half hour, but for them, it is the first time they’ve asked. The answer has been lost, or more likely, never made it to their memory.
Mom is currently in sessions of replay that are often only a few minutes, and sometimes just seconds, in length. I used to wonder if she was messing with me; maybe even testing me. I now know she is not. She simply does not remember.
Even on the best days, it can be too much.
That’s when I take my orange page, step around a corner out of site, take a breath (or 6!), and bang my head with great speed, ferocity, and face-making, all without the risk of concussion. Once my little tantrum is done, I return to the inquisition with my patience once again intact. In truth, I never actually carried the page around with me, but I do sometimes (ok, often) need a moment and visualize that handy prop of permission.
I’ve also developed other strategies – mostly for my own sanity and amusement. Selfish, I know but, a girl’s gotta do what a girl’s gotta do to hold it together. Some days, I find it fun to answer the same question with different answers. Sometimes, I echo the question right back. Every once in a while, I cough-talk something outrageous. It is not unheard of for my phone to ring silently and for me to have a very important, very imaginary conversation with absolutely no one. Again, a girl's gotta do what she's gotta do.
I think it is important to note that we can sometimes use the repetition of dementia to our advantage.
I do so regularly. Let me explain. I think I’ve noted that my Mom has always been the world’s greatest cheerleader. She still is… and on replay. My husband and I recently bought a new house. To say I love it is an understatement. Not everyone shares my over-the-top enthusiasm but Mom does. So, knowing this is a safe and joyful topic, I purposely lead her to ask me questions about my beloved new abode. We have spent many hours looking at the photos and videos from the property listing. Her enthusiasm and joy is exciting and comforting. I love and treasure these special moments together.
A word of warning: the realm of repetition is not always fabulous
You do need to be careful to protect yourself when the threat of hurtful repeat questions arises. This is a time when distraction and redirection are once again your friends.
Another example: I recently had cryotherapy to remove some abnormal cells from my face. The liquid nitrogen used left a series of ugly scabs on my cheeks and nose. When Mom first saw me, she cried out with enough volume and dramatic flare for those at the back of the theatre, “what happened to your face?!?!” I explained the procedure and what the marks were. The explanation didn’t stick. I was reminded that I was an ugly monster many times that afternoon.
We would be happily looking at videos of my dream home when Mom would look up to ask a question and then cry out, “what happened to your face?!?!” It was funny at first but after the 12th time, it started to feel a bit hurtful. But, I reminded myself that she more concerned than horrified each time she looked up. After a good orange-paper head-banging and cleansing breath, I refocused her attention back on my laptop and pressed play on the real estate listing to bring us back into the beautiful gardens of my new abode.
Lessons Learned
Get educated. Understanding why behaviours occur makes responding to what can be annoying behaviours so much easier.
Remind yourself that the question you’ve heard for the 25th time today and on every day of the last month, is being asked for the first time by your person. Being patient (and creative) with your answers is kind, and sometimes amusing.
Let yourself be in the moment. The visit will end… and so will the questions.
Have fun. As long as you are kind and respectful, it’s ok to be playful…. for just a little bit.