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

Fighting for Independence at any Age.

The 4th of July. Independence Day in the land of the free and the home of the brave. Independence. We sing about it at every major league baseball game and at public events. We march for it. We fight for it.

In my line of work as an elder care consultant and speaker on behalf of the causes of the elderly, I see our aging population fighting for independence every step of the way. They fiercely guard their independence to stay in their homes; to continue to drive the family car; and move about freely even though a frail, uncooperative physical body has other ideas and sets limits.

Just a small suggestion for families with aging parents who are struggling with issues about their elders staying at home and resisting outside help. Discuss the option of bringing in outside home care as a way to gain independence and freedom. It's an option of building in layers so that there is the possibility of staying at home versus having the loss of your familiar surroundings.

People celebrate gaining independence and new found freedoms in a variety of ways. Fellow speaker Amy Segami Basic hosts an annual sunrise celebration on the beach each 4th of July commemorating her joy of becoming a US citizen.

Celebrations for Independence Day come in the form of parades, fireworks, picnics and festivals. And ohhhhh do we love to march! As I returned home from errands today, I passed a group of four and five year old children marching in a parade with little patriotic red/white/blue hats. A great sight!

In the Lakeview neighborhood not too far from our house there is the WOOGMS march on every patriotic holiday. WOOGMS stands for the Wellington Oakdale Old Glory Marching Society. The society started 40 years ago with the theme "Everybody Marches." The participants are ambulatory - or not - on bicycles, tricycles, Radio Flyer Wagons, stilts, wheel chairs, unicycles, barefoot, four paws and strollers. If you can move, you can march! The Jesse White Tumblers usually lead the parade and the WOOGMS are now known nationally.

Guarding the independence of the United States is a generational honor. The greatest generation, as described by NBC news anchor and author Tom Brokow is the World War II generation. These are the octogenarians of today who left home as young men and women to defend our country when Pearl Harbor was bombed. My dad and my uncles all served in various branches of the service for our country during World War II.

When I asked my 89 year old uncle about the differences between the horror of Pearl Harbor and that of 9/11 he talked of several huge differences. He said that on that Sunday, December 7th, 1941, the news from Pearl Harbor came after the fact, delivered over the radio. My uncle told that after the news, his family members went to the book shelf to pull out the World Atlas and locate Hawaii. In 2002 on that fateful September 11th, we watched the horrific events unfold before our eyes through mass media, CNN and Internet.

Our veterans span many generations, but we have to be aware, and grateful for all the very young men and women who are defending our freedom. Prior to 9/11 my husband and I had the opportunity to ride along on a commissioning anniversary aboard the USS Abraham Lincoln (CVN -72), one of our country's nuclear aircraft carriers.

We were in awe of the 5,000 naval personnel on board. Average age 19 years old! In fact, as we departed from San Francisco several of the naval seaman who were returning from leave came aboard with skate boards under their arms after great rides on the streets of San Francisco.

Over this weekend, as you celebrate our country's birthday and independence, and you witness those fabulous fireworks as bombs bursting in air, say a little prayer for our heroes of all ages. Pray for those on the front lines, others working in mundane jobs, young people standing watch on air craft carriers, and veterans who paved the way so many years ago.

There is a certain irony in the weather forecast for this 4th of July. It's supposed to be a balmy 76 degrees. Pray too, for our forefathers who, in 1776, worked so hard to bring us to this celebration today!

Happy 4th of July!