A Paradox about Dignity & Disease:Help or Hinderance

This blog is being written to generate feedback about a topic that creates a paradox about dignity. Should people be forewarned that our loved ones who suffer from a disease may exhibit inappropriate behavior? I ask you to read the following, and then send me your opinions as to whether these little note cards are helpful, or if you believe they compromise the dignity of a loved one.

Please send me your thoughts. I will post the results.

A caregiver tip for diffusing awkward situations

By Angela Lunde

I thought I'd share a quick tip that has been circulating through our caregiver support groups. I believe the idea originally came from a caregiver and wife, Lela Knox Shanks, in her book "Your Name is Hughes Hannibal Shanks." This is now a strategy brought up routinely in our support groups.

Here is a situation that may arise for caregivers at some point: You want to take your loved one out to a restaurant, grocery store, family reunion, etc., but you are reluctant because you think that your loved one may say something or act in a way that is embarrassing to you, or may put others in an uncomfortable situation.

These are real and valid concerns. Keep in mind, persons with Alzheimer's experience a decline in judgment and language as well as other symptoms that can include dis inhibition, irritability, delusions, compulsive and repetitive behaviors — all of which can be challenging to the caregiver especially when in a public place.

So, the strategy is to carry a supply of business sized cards with a saying similar to the following:

"Please excuse my (husband, wife, father, mother), they have a diagnosis of a memory impairment (or you can say Alzheimer's disease, brain impairment) and may say or do things that are inappropriate. If this is the case, please accept my apology on his/her behalf. Preserving his/her dignity is my overall goal. Thank you for understanding."

These cards can be given out discretely anytime you feel it would be helpful. The caregivers I have spoken with find that once a card is handed to someone, a potentially awkward situation is alleviated. In most cases when people understand the circumstances behind the behavior they are genuinely accepting, and often kind and accommodating. By telling others, you are emphasizing that the behaviors are part of the disease and not who the person is. In my mind, this is a way of offering the person with Alzheimer's the respect and dignity they deserve.

My thoughts:

Several years ago I attended a speaker's conference where one of the attendees suffered from Turrets disease. Before each session during the general announcements (about fire exits, bathrooms, etc.) the attendees were also told that there was an individual with Turrets disease and that we should not be alarmed if we heard outbursts from this individual during our programs. We were told that this was part of the behavior and that (he) wasn't in any danger.

In that situation, I felt that the announcement was appropriate.

While I understand the logic behind handing out a card that says my mom or dad with dementia is exhibiting behavior that isn't normal, it is my belief that by this action I am compromising their dignity. Both mom and dad, now deceased after lives ending in Alzheimer's disease and dementia would have been mortified if any members of their immediate family had handed out cards in social situations letting friends and strangers know that they were impaired.

With my mom and my grandmother both having Alzheimer's disease, we had a couple of surprise, embarrassing social mishaps. We smiled, apologized if it was necessary, and moved on. In several cases the inappropriateness resulted in laughter, with everyone joining in - mom, me and the bystanders. Sometimes you have to laugh...or you'll crack up.

The support groups listed above report that the announcements on the little cards are very helpful. I am very interested in your thoughts. Please email me at cheryl@agingparentsolutions.com.

Blessings on all that you do.

Cheryl Kuba

Aging Parent Solutions, LLC