I had an experience at our local bulk food store yesterday. The store is basically the size of a Trader Joe’s, except that every aisle looks the same, lined with identical bins on the floor and various products on the shelves above. The colour scheme is yellow, white and black. It’s the kind of place where you end up wandering from aisle to aisle looking for what you want. Once you’ve shopped there several times, you learn that the nuts are on the left wall, the gluten free is on the right, and the dog biscuits are on the back wall, and there’s a whole lot of chocolate in between. Eventually you can get to the point where you can find what you want without spending half your afternoon looking.
Much like Costco, you go in for one item and come out with ten. My husband and I went in yesterday; he wanted dried wasabi peas and I wanted to browse. While he went off to find the peas, I headed for the gluten free aisle, which is where he found me. Once there, he gave me a tour of the whey powder he was using, various types of flours, and Psyllium husks, the main ingredient in this fibre booster drink that he likes and which you mix with orange juice. In fact, we’d just been talking about Psyllium husks the other day as I’d never heard of them. We went to the cash register line-up with bags of teff, some kind of quinoa, couscous, and a few other items. And, oh yes, the dried wasabi peas.
There’s a point here; just stay with me.
As per usual, everyone in the store seemed to get the message telepathically that we should all head to the cash register at the same time. I swear there was not a soul there, and then suddenly there were ten, with more headed in the same direction. Standing before the cash register was a tall, stately man, with one of those plastic shopping baskets with wheels for those of us who don’t want to commit to a full shopping cart but don’t want to carry a regular basket. His basket was empty; he was standing there with a question. And the cash-out girl, from my perspective, seemed to be gazing at him like a deer caught in the headlights.
What was going on here?
While the lady behind the cash had paused the line-up and given space to the gentleman to ask his question, the gentleman’s obvious frustration was starting to attract attention. He was having trouble putting together his question. The lady’s eyes moved from him to the others in the group, and we briefly locked eyes. People in the line, while waiting patiently, shifted uneasily as the gentleman exclaimed, “But it was there the other day! It’s been moved!” He seemed to be having trouble naming and describing what “it” was though, and so the lady looked to be unsure of what else she could do. Nevertheless, the gentleman really needed “it” and somewhat distressed, he moved off, basket in tow.
He walked as purposefully as one can when you’re over, oh, I’d say 80 perhaps, burdened with a winter coat, hat, boots, and a plastic shopping basket on wheels, over to the aisle where my husband and I had just had a shopping spree. I had seen his face as he left the line-up. I couldn’t help but think, “This could be my father. My father’s been gone for over 30 years, but this guy is someone’s father. He deserves better than this. I’d want better than this for my father.” I was also thinking, “This can’t end well.”
And at that point I thanked every person with dementia whom I’d ever spoken with. Because of their tutelage and willingness to share their lived experiences, I had an inkling of what might be going on and of what might be of service to this fellow, who was in danger of coming across as just another agitated, belligerent, forgetful, confused person of a certain age.
Coming up beside him, I touched his arm and asked, “Excuse me, but I couldn’t help but overhear and wondered if I might be of assistance?”
Biting my tongue, I choked back the words, “Do you remember what it is?” and recalled that my mentors with dementia have taught me the stress that comes with being asked to remember something that clearly you can’t.
Instead, I tried a version of what can best be described as a game of Twenty Questions.
“Can you tell me what it looks like?” I inquired.
“Well, it’s…well…,” he said as he made some hand motions that looked like he might be sifting a grain. “And it was just over here!”
“What do you use it for?” I inquired.
He said something that made me think the mysterious “it” was a food supplement or something. But he didn’t seem terribly comfortable talking about its precise purpose, so I backed off on that line of questioning. I reframed the question, and he answered, “You mix it.” We were getting closer.
“Oh! What do you mix it with?” I asked.
Ah, it WAS a supplement. My husband mixed some god-forsaken stuff with water and it’s orange flavoured, but he said the plain version can be mixed with orange juice. Now what was it? A protein supplement perhaps? As he was starting to explore further down the aisle, I thought I’d make a guess. “Oh, could it be one of these whey powders?” I asked.
“No! It wasn’t on this side, it was over HERE! But they moved it. It was right here,” he said, moving over to stand next to a bin on the opposite side of the aisle. He pointed to where “it” ought to be.
Suddenly, I was pretty sure what it was he was searching for. I said to him, “Oh! I think I know what you want. My husband mixes it with orange juice and he just showed me what it looks like, and it IS in this aisle, just a bit further down.” I couldn’t remember the name of it off the top of my head, so I walked down the aisle another 10 feet until I recognized the name. Pointing to the bin, I asked, “Is it Psyllium husks?”
“Psyllium husks! Yes, that’s it! Thank you!” He prepared to pick up the scoop as I silently thanked my husband and the Universe and whoever else was around for introducing me to Psyllium husks. I asked if I could be of any other help, and he said, “No, thanks.” Given that his basket was empty and he was only on his first item, I thought about how long and frustrating a shopping trip he might be in for, but respecting his wishes, I moved off.
Great story, right?
I’m not looking for a pat on the back or anything. I almost decided not to write about it, but I thought, “There’s a learning in here.”
I found myself wishing that the store staff and the other shoppers had been able to benefit from the same education as myself, so that they would be empowered to come to the assistance of someone who is clearly having a problem. Because one day it could be your dad, or even you or me. In fact, I didn’t interview the fellow or ask to see his medical records. I don’t know for a fact that he had dementia, and I actually have no right to label him as such. But, he was having trouble remembering something and I figured I might have had the tools to help him, given the number of people I’ve learned from who from time to time, might have run into the same issue.
Once again, I must thank my mentors with dementia. As the beneficiary of hundreds of hours in conversation with people with dementia in support group meetings, project meetings, and conferences, and having witnessed a good number of To Whom I May Concern® performances, I’ve learned that there’s almost always a reason behind agitation and other such “behaviours,” that a diagnosis of dementia does not mean that you no longer have the right to express your emotions. Far from it. If one is losing one’s ability to form words and speak them, emotions are the next best option. Looking at his demeanor, how well put-together he looked, and how he was in fact being quite respectful and doing a brilliant job of keeping it together in the face of his frustration, I determined that there was no reason to be nervous of this gentleman. He was probably having some memory issues that could be worked around, if we a) took the time, and b) asked the right questions.
At the feet of the experts, I’ve learned that memory is fluid and that there are many routes to a “memory” if you ask enough questions, being careful to recognize that everyone has their limits when under interrogation. I learned patience. I learned how to reframe questions. I learned that dementia has nothing to do with intelligence; this fellow was shopping independently, was well-dressed, and seemed very nice. I remember that he had a lovely face. His only crime was that he couldn’t remember the words “Psyllium husks,” and was flustered because his way of remembering what he needed to buy was to go to the location in the store where they always were, until today when SOMEBODY MOVED THEM! I learned that–and Lord, forgive me for saying it this way but I don’t know how else to say it–people with dementia are just people like the rest of us. So if someone is struggling with remembering where the watchamacallit is, that’s no reason to stop treating that person like a person, a valuable human being, a gift to the world.
So what can we do?
I’m looking forward to the roll out of Dementia Friendly Communities here in Ontario, and the expansion of the Blue Umbrella Program that provides training to staff in organizations and businesses.
I’d love to see each and every person in our town of 20,000 learn about the challenges faced by people with dementia.
But whatever training we receive, what is very clear to me, even more-so now, is that people with dementia MUST be at the heart of any and all dementia-friendly training. I am convinced that, without the benefit of the hours and hours spent in conversation with those with lived experience, I wouldn’t have had a clue what to do. I could not have stepped into the shoes of that man and felt his confusion. I would not have been able to consider his agitation as an expression of his frustration. I wouldn’t have understood that just because he couldn’t remember the name of what he was searching for, he couldn’t remember other stuff or be able to think his way out of his dilemma.
The only way that people who have not had the opportunity to be in direct conversation with people with lived experience can really learn about dementia is by including the experts–those living with dementia–in the development of this training.