Lesson #1: Lose the Label

We were standing in a retail store, having painstakingly chosen a new electric razor for my father. For the third time in fifteen minutes, he asked the saleslady “When did these gadgets get so expensive?” and made a joke about getting a senior’s discount. He is so charming with strangers, my father. He loves to make people laugh. And the saleslady did laugh… politely each time, each time a little less exuberantly. At some point our eyes met, and I sensed that she understood…

During the first few  months of daily caregiving, I was always watching how strangers reacted to my father, then cringing a little when confusion arose as he repeated himself or forgot what he had just been told. I found myself thinking: Is there a simple and easy way to make others aware of the condition, especially the strangers that we interact with so casually on a daily basis?

I’m a straightforward person; I wanted to say to people: “My father has dementia, and we’re here to shop for a new razor.” I wondered if there should be an identifier, such as a ribbon or bracelet for dementia and Alzheimer’s, to make it immediately recognizable, like a “red badge of courage.” Would that make it easier for everyone?

At the next evening session of the Alzheimer’s educational course I was attending, I asked other caregivers for answers, and was given questions instead:

  • Is this something that bothers my father or bothers me? Whose problem am I fixing?
  • If I had dementia or Alzheimer’s, would I want to be defined by it generally, or would I prefer to deal with it on a case-by-case basis?

Good questions. I immediately realized the selfishness of my need to tell others that my father has dementia. I know I’m trying to avoid situations in which my father gets insulted or laughed at by accident (“Sir, you are repeating yourself!”), but wanting to give that information to strangers pre-emptively doesn’t give either my father or the stranger a chance to work it out for themselves. So that’s just making me feel better… and that’s not the point.

Secondly, as someone who suffers from anxiety attacks, would I want to wear a t-shirt proclaiming my status as “a person with panic potential”? On some days, yes! But not unless it’s my choice. If I was told by the government that I had to go around with a diagnosis-driven label as part of my identity, I would be furious.

Next, I had the discussion with my father. “Do you want me to tell people you have dementia?” I asked. His eyebrow raised, and I could tell he was about to say “I don’t have dementia”, because he likes to practise a glib form of denial. Then he looked thoughtful. “I don’t mind if you do,” he continued, “But only if you think it’s necessary.”

That’s a level of trust I have to earn. And a lesson I continue to apply. If people don’t need to know, it doesn’t get mentioned. If it’s going to affect an outcome (getting his money back from the gym after he stopped going was one of them), then my father is very comfortable with me stating “My father has dementia, and he’s asked me to share that with you.”

The bigger lesson is that my father’s point of view should always be the primary consideration, and that we need to involve our loved ones in these decisions as much as possible.

It’s about love, not labels.

This comment from Amazing Susan was so helpful, I’m inserting it here for readers’ benefit. You can follow her blog at My Alzheimer’s Story.

“A simple solution is the business-like cards that many have come up with that say ‘my father, mother, whoever, has dementia, please be patient’ or something like that. You can download them from Caron Cares (http://dementiaassistancecard.com), or memory people on Facebook or print your own I guess!

Also eg: ‘Pardon My Companion Cards: We know it can be difficult to explain behaviors brought on by Alzheimer’s to those you do not know or are unfamiliar with the disease. To ease this challenge, we offer free Pardon My Companion cards. These are notes in business card form to discreetly alert others that your companion may exhibit unusual behavior due to Alzheimer’s disease. Simply pass others your card and save yourself the stress of explanation. To request Pardon My Companion cards, please contact us at 1.800.272.3900.” http://www.alz.org/eci/in_my_community_helping.asp

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