Unforgettable

It’s not easy to share our health woes; there’s so much stigma in our cynical society. If you whine too much, you’re a hypochondriac. If you have something incurable, it’s all in your head. If you have something really wrong with you, you shouldn’t be out in public. Stop coughing and sneezing on us! Stop blocking the aisles with your wheelchair! Stay home, why dontchya?

Yeah, seriously. It’s not a compassionate world these days. Yet, when people hear that my parents have dementia/Alzheimer’s, the majority are sympathetic. They know what Alzheimer’s is, for starters. Most know someone or have heard of someone with Alzheimer’s. We get comfort from sharing, there’s no denying that.

Awareness is the first step to change
I’ve never been a fan of “not knowing.” I want to know everything, and I believe that knowledge enables better coping skills. If I understand something, I can handle it better. If I know that someone is suffering from something (e.g., a mental illness), it helps me understand that person better. Even though I wasn’t always an open book, I am now comfortable sharing my own challenges (anxiety and addiction). Not because I want sympathy, but because it helps similarly-challenged people find me and vice versa. It’s a tribal thing, or community.

And ignorance blinds everyone
Yesterday, my mother and I went for a physician-requested X-ray; she has been complaining for months about pain in her upper arm. When I called to make an appointment, they said it was walk-ins only. I explained that waiting was challenging for my mother, because of her Alzheimer’s. They said that, should there be a long wait when we arrive, we could then make an appointment to come back, ensuring a shorter wait. Not very convenient, but better than nothing.

There was a very short wait, thankfully. I told the nurse that I was going to accompany Mom throughout, because of her Alzheimer’s. She was OK with that, and she showed us to the changing room, where I helped Mom put on a blue gown. For once, I was glad that Mom was not wearing a bra, because that would have been a huge ordeal in that tiny changing room!

The technician, a French-speaking woman in her 30s, had that air of “rushing around.” She was very efficient, but not at all friendly. She asked me to step aside and stay out of the way. Mom made her way slowly to the big X-ray machine at the back of the room.

Then Betty Bruiser started shoving Mom around. “Ow!” Mom yelled, when the woman pushed against her sore shoulder to place it for the image. Betty Bruiser wasn’t impressed, and became increasingly rough. She started raising her voice, because Mom wasn’t moving fast enough and didn’t understand what she wanted her to do. Each time I stepped forward to help, she waved me back.

Mom got angry and started snapping. “You’re hurting me!” she said to the woman, who never apologized, just kept handling her like a piece of meat. At one point, she was pushing Mom over and over, like a punching doll, to get her to stop leaning to one side. It looked like Mom was either going to cry or topple over. I’d had enough. I went to Mom, put my arm around her and said “Take a deep breath, Mom, it’s almost over.”

The Bruiser gave me a dirty look, but let me stay for the remainder of the X-rays. I slowed down to meet Mom’s pace, which didn’t make her happy. She was curt and dismissive when it was over, even when Mom politely said “Thank you” as we left. I could tell she was pissed off and she could tell I was pissed off. Not a good vibe. I was quick to laugh it off with Mom, though, so that it didn’t leave a lingering shadow.

First of all, this technician has no idea how to treat people, let alone seniors with dementia. (And yes, I will write a letter, I’m writing a lot of letters!). Secondly, I don’t know if her knowing that Mom had Alzheimer’s would have changed her approach – but obviously she wasn’t told, and in any case, there was no opportunity to mention it without making Mom feel even more awkward.

This is just one more instance that makes me realize how badly we need better tools to communicate with others, when it comes to Alzheimer’s. From suppliers yelling at Dad because he’s calling them again with the same question, to care providers who are supposed to care about the people in their charge, there seems to be a huge lack of awareness of the realities of living with dementia. And a big void when it comes to identifying and respecting these very fragile and vulnerable members of our society.

For any health care professionals who are reading, here are a few suggestions for medical visits, based on my limited experience:

• It’s difficult for these seniors to get out and about; be respectful about appointments, understanding that they have routines which are difficult to disrupt, that it can take hours to get them ready, longer than usual to get them there, and that there are readjustments once they get back home. One 15-minute appointment with a GP can take up the entire day for a caregiver.
• Waiting is harder for seniors with dementia, because they don’t remember who they’re waiting for or why. They get restless and agitated if forced to sit in unfamiliar surroundings, and anxiety mounts as time goes on. Please don’t make us wait too long! I’ve seen new rules that prioritize children under the age of 10; I think seniors with dementia should also be prioritized.
• Loud surroundings are incredibly confusing and disruptive for people with dementia, provoking fear and more anxiety. Even though we can’t make health care settings any less loud, please be aware that doors slamming, people shouting, bells dinging, loudspeakers blaring – all this adds to the stress of waiting. If there’s a quieter place to wait, please suggest it.
• When you talk to a senior with dementia, talk slowly and clearly, preferably in their first language (probably an issue only here in Quebec and/or with immigrants). You need to be patient and repeat yourself if necessary. It might take longer to do what is required, and rushing them will just make things worse.
• If you need to trust the answers to the questions you’re asking, speak to the senior’s family member or advocate. I can’t tell you how many times my father tells people (and his GP) that he goes to the gym twice a week, is still driving, and never eats sweets. Too funny. So if I want a doctor to have the right information, I basically have to “call out” my Dad and correct him. That’s not very nice for my father.
• A senior with dementia should be accompanied; there’s no point in giving vocal directives to them. I’ve heard health care professionals rattle off a set of instructions to either my mother or father, and any dolt would know by looking at their faces that nothing is being retained. I guess they do it automatically, but hey – wake up health care professionals! Seniors with dementia won’t remember what you tell them, so make sure it’s written down and/or talk to someone else.

We Are Not Our Illness
When I first started accompanying my parents on shopping errands, I wanted a simple hand signal that would let shop keepers and waiters know that my parents were “compromised.” My contact at the Alzheimer’s Society reminded me that, unless it’s bothering my parents, maybe it’s not an issue. We are not our illness, and we don’t need to bring attention to it. Good point!

I relaxed my own rules. Now, when Mom goes up to a complete stranger in Walmart and starts prattling away in gibberish, I stand back. Most people smile at her positive energy and are kind enough to respond in some way, even if they don’t understand.

But there are still a few instances when I feel, strongly, that people need to know. Like the X-ray technician. Like the waiter in the restaurant who got upset at Dad when he asked why his order was taking so long, even though it had only been a few minutes. Sometimes, you just want to CLUE PEOPLE IN.

Here’s my idea; let me know what you think of it.
This is me making a big “A” sign with my hands. If everyone knew this meant “Alzheimer’s”, do you think it would help? Of course, it would take a lot of awareness to get the word out, and we would still have to fill people in on the “challenges”, but everything starts somewhere.  Honest feedback would be much, much appreciated, folks. Please scroll all the way down to the bottom of this post and leave a comment.

“Let us not look back in anger, nor forward in fear, but around in awareness.”
– James Thurber