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!

Building Memories and Getting Facts about Alzheimer's

"The good news is that with age comes happiness,"

-Yang Yang -sociologist
University of Chicago

Belly fat - really?
Not only does that spare tire around our middles cause us angst in clingy dresses and tight pants, but now we can start blaming belly fat for boosting our risk of getting Alzheimer's disease or other dementias decades later. The new research, by study author Rachel Whitmer of the Kaiser Permanente Division of Research in Oakland, Calif., found that participants with normal body weight and high belly measurements were 89 percent more likely to have dementia.

Alzheimer's statistics are pretty arresting all by themselves:

• 10 Million US Baby Boomers will develop Alzheimer’s disease
• Every 7 seconds, someone develops Alzheimer’s disease.
• Direct & indirect costs for Alzheimer’s disease and dementias are $148 billion annually.
• 5 million Americans are living with Alzheimer’s disease.
• The disease is the 7th -leading cause of death in the United States.

Here's what we know about the Alzheimer's:

• It is a progressive and fatal brain disease.
• Alzheimer's destroys brain cells, causing problems with memory, thinking and behavior.
• It is severe enough to affect work, lifelong hobbies or social life.
• It gets worse over time.

Although the prognosis for individuals with Alzheimer's is pretty bleak, there are many new drugs and techniques that offer hope and improved quality of life. Several drugs on the market right now such as Exelon, Razadyne, Namenda and Aricept will slow the progress of the disease.

The "magic pill" that continues to lead the pack in fending off Alzheimer's symptoms and keeps our brains in shape is the big "E" - exercise! With this recent belly fat data, it speaks volumes for keeping our physical bodies in shape for the sake of our brains, not to mention the other benefits of physical activity. There is plenty of data that will tell us about exercise reducing the risks of heart disease, diabetes, and lung disease.

As Alzheimer's disease destroys portions of the brain, the brain actually shrinks in size. A study by researchers at the University of Illinois found that physical exercise can actually increase the size of a person's brain. Get out and bike, walk or swim. Exercise today!

Two months ago, I had the opportunity to be the featured guest on InTimeTV's internet program, Journey Through Alzheimer's disease. If you click on this link, or paste it into your browser, you can view the show. mms://68.251.204.5/video/intimetv/jta011.wmv. (The link looks strange, but trust me, it works.) The show is weekly and features experts working in the Alzheimer's arena. The show host is Athena Rabapis. Viewers can either watch the show live, or play it at their convenience by going to InTimeTV's archives.

On the day that I was the guest, we had a bit of a scare in the building downtown where the show is produced. I happened to be in the ladies' room at the same time as the show host, and her mother (who was visiting). All of a sudden, Athena turned to me and said, "Does that look like smoke coming out of the light fixture?" Sure enough, the fixture was smoking, and 911 was called. The events that followed were comical, but thanks to the Chicago Fire Dept., everyone was safe, and the show went on as planned. Here's proof from our fire adventure!

Spreading the news about new research and tips about Alzheimer's disease is a cause close to my heart. Both my mother and my grandmother had the disease for a collective total of 18 years. Our family went through all facets of the Alzheimer's journey. Now when I work with families who are affected by the disease, each incident they tell me about fuels my passion to help disseminate information about Alzheimer's. Although my knowledge base comes from the professional arena, it is difficult not to make it personal. When you have a family member with Alzheimer's disease, everyone in the family lives with the disease.


As you travel down the road with Alzheimer's disease, remember;

1. No two families are alike. No two symptoms are alike. Professionals working with Alzheimer's patients often say, "When you've met one Alzheimer's family, you've met one Alzheimer's family.
2. You and your family are doing your best.
3. Have patience.
4. Take care of yourself, first.

Finally, memory loss doesn't mean new memories can't be made. Your relative with Alzheimer's disease can try something new today - because they are living in this moment.

Go out and give yourself the gift of building new memories - today!


www.alzheimers-illinois.org