About eight years ago my mom began to demonstrate personality changes and memory issues. Mummy, as we affectionately called her, was repeating herself, having difficulty communicating and had begun hoarding -- plastic bags, Kleenex, pennies and even little pats of butter.
Looking for answers, my sister took Mummy to see her family doctor, calling ahead to advise him of the memory issues and obsessive behavior.
During her appointment, the doctor asked a series of questions, conducted a cursory exam and within minutes had a "diagnosis."
"Don't worry," he said, patting my mother's hand, "It's not Alzheimer's disease. It's only dementia."
My mom left her doctor's office feeling relieved that day. However, by this point in our lives, my sister and I had had plenty of experience with Alzheimer's disease. We knew there was plenty to worry about.
This doctor's visit happened eight years ago, but there is still a confusion surrounding Alzheimer's and dementia. Many people use the terms interchangeably -- giving the impression they are one in the same. Others, think both Alzheimer's and dementia are diseases, with dementia being less damaging or severe than Alzheimer's disease.
These myths are widespread, even among the media some healthcare providers, and are very difficult to dispel.
First, it can be challenging to wrap your head around this complex subject. The confusion may also stem from a lack of clear reporting in the media. Additionally, Alzheimer's has become a dreaded word. It's a word many people avoid using, preferring instead the softer, less-threatening term, 'dementia.'
Whatever the reason, the all-to-common misconception is that Alzheimer's disease and dementia are one in the same.
They are not.
To understand dementia, you have to first recognize it is not a disease. Rather, it is an overall, umbrella term used to describe a group of symptoms that affect a person's mental and physical abilities.
You could compare it to the term fever, which tells you a person has an elevated temperature with perhaps other accompanying symptoms. However, fever is caused by something that is happening in the body.
The same is true of dementia -- it is result of something happening to the body.
There are many types of dementia symptoms and they can often vary from person-to-person. Some of the more common symptoms are short-term memory loss, depression, irritability and mood changes, lack of coordination and motor skills, difficulty walking, loss of communication skills, difficulty solving problems, repetitive behaviors and a change in sleep patterns.
So, what is the root cause of these dementia symptoms?
Alzheimer's, a progressive, always fatal brain disease, is the culprit in about 70 percent of the dementia cases and affects more than 5.3 million in the U.S. alone.
Yet, you can have dementia symptoms and not have Alzheimer's disease.
Other diseases that bring about dementia symptoms include dementia with Lewy Bodies, vascular dementia, fronto-temporal dementia, Parkinson's disease, Huntington's disease, Creutzfeldt-Jakob disease, prolonged and excessive alcohol or drug use as well as several other rare types of diseases also affecting the brain. Although dementia symptoms vary widely, all of these diseases affect a person's thinking, behavior and memory. The disease steals the person's cognitive abilities and destroys their lives in the process.
Knowledge is power. The more we know and the better we can communicate about Alzheimer's, the more powerful we become. Use your power to set the record straight about the myth that Alzheimer's and dementia are one in the same.
You may open up some conversations about this disease and who knows where it might lead?
A new study about death and Alzheimer’s disease made headlines yesterday. It revealed what all of us in the Alzheimer’s community already knew: Alzheimer’s disease is a “sleeping giant” and it is dramatically under-reported as the cause of death, especially in older Americans.
The study, published in the medical journal of the American Academy of Neurology, reveals that deaths are categorized and recorded by the cause listed on death certificates.
However, those numbers are deceiving as many death certificates list an immediate cause of death, such as pneumonia, while the deceased may have had Alzheimer’s or another form of dementia for many years. Alzheimer’s degrades the brain severely, leaving a person vulnerable for many other medical complications. In other words: Yes, the deceased had pneumonia, but it was not the root cause of death. At the root, there was Alzheimer’s disease.
Currently, the Centers for Disease Control and Prevention has Alzheimer’s disease listed as the nation’s sixth leading cause of death, but this latest study would move it up to third place, just behind heart disease and cancer.
This is one more huge piece of evidence that we need in the battle against Alzheimer’s. But will it make any real difference?
Keith Fargo, director of scientific programs at the Alzheimer’s Association, said, “We would like to see a response that is commensurate with the problem.”
“Alzheimer’s disease…needs to be taken seriously, and if we have the right kind of investment as a country, then we will be able to makes strides similar to what we’ve made in heart disease, HIV and cancer,” said Fargo.
Congress recently allotted more funds for research — $122 million. That’s a start. What we actually need is more in the range of two billion. This may sound like an astronomical number. However, it is miniscule compared to the personal and government financial outlay that is anticipated if we don’t find a cure or at least effective treatments for the disease.
What are the anticipated costs? By 2050, the projected cost of Alzheimer’s will be a trillion dollars.
Let’s pay the two billion now, rather than paying so much more later.
It was last November. I was writing a post about my mother’s final days on this earth. Mom had battled Alzheimer’s for more than eight years, and her sad, long journey was almost at an end.
The image I chose for my post was a beautiful Tree of Life creation which fit perfectly with my subject matter. I remember hesitating just for a moment. Was it an image I had purchased from a service? Had I found it in Creative Commons? Was it okay to use?
My mind was hazy, and I was certainly distracted. However, I believed I had permission to use the image. After all, why else would I have it in my image library? In haste, I used the image and clicked the Publish button.
After that, I didn’t give it another thought. I had so much on my mind.
My mother died a few days later and immediately I was deluged with messages from friends, family, hospice, the cremation society, online connections and more.
One of these missed emails was from Marian Osher, the talented artist who was the creator of Tree of Life. Marian asked me to remove the image since she held the copyright and I had posted her image without permission, attribution and/or compensation.
However, I missed seeing this initial email. When she didn’t receive a response from me, Marian referred the matter to the legal team of my website host and within days they followed up with a cease and desist email. This email got my full attention.
How could I be so stupid?
Immediately, I removed the image. I knew using a copyrighted image without permission was illegal and it could mean a boatload of trouble — as well as a hefty financial price tag. It had happened to bloggers I know and even to my own former spouse (who hired someone to build a website and didn’t know the designer used copyrighted images without obtaining approvals).
Not only that, I was mortified.
When I first started blogging, I had used images willy-nilly, mainly plucking what I liked from Google Images.
Then, I attended a blogger conference and wandered into a session I had not even planned on attending. The woman at the podium was talking about copyright laws and how many bloggers unknowingly use images — images not in the public domain — without permission. She warned this practice was not only unacceptable, it was illegal.
Illegal? It’s a hard word. I wanted no part of illegal.
On a mission, I spent an entire day purging my blog of images I had unwittingly used for free and without permission. Moving forward, I began purchasing images through stock photo sites or opting for public domain images.
I was vigilant about the images on my blog. Until that day back in November.
After I removed the Tree of Life image, I contacted its creator, Marian Osher, a talented painter and printmaker, who is based in Maryland.
In an email, I apologized and explained what was happening in my life at the time. While this was not an excuse, I hoped it might provide some perspective. I told Marian I knew better and would do better. I asked her not to take further legal action, instead requesting we work out the situation between ourselves.
To my relief, she graciously agreed.
Then something unexpected began happening. Marian and I continued to exchange emails and we spoke by phone. We had made a connection.
I shared with Marian that my own creative work had been re-posted on websites without my permission. I had even come across my writing changed just a little and then attributed to someone else. This left me feeling angry and hurt. Indeed, we could relate to each others experiences.
During our back-and-forth conversations, Marian and I hatched a plan. Why not work together and use this situation to pass the word on to others? That way, some good could result from my error. We could each express our feelings and perspective.
Since this is my blog, I’ll go first. My advice to bloggers and website owners everywhere: Think before you click.
If you find an image you like, contact the creator to seek permission and negotiate permission, any fee and how the image creator should be listed on your blog or website. As mentioned above, I now use stock-photo services, such as istockphoto.com, where you can buy credits and find lots of great images.
Not interested in the paying route? Then, take your own photos, create your own art or search for work that is in the creativecommons public domain. However, be sure the images you choose are indeed free to use and always include a credit exactly as the creator has listed it.
Remember, the burden is on the user. If you are unsure, then err on the side of caution.
These are my suggestions, and I encourage readers to leave comments with their own experiences as well as links to acquiring legal images.
Now, here is what Marian wants to share:
“Nancy is a sensitive person who has learned from her experience. She has graciously offered to help educate internet users about copyright issues and to spread the word about the damage and hurt that creative infringement causes, even if it is unintentional. Users, please think before you take an image from the internet. Remember, SOMEONE created that artwork, and if you can’t find the source to ask permission, DON’T USE IT! It is not flattering when someone takes your artwork and posts it without credit and without your permission. It is painful, and you will wake up in the middle of the night knowing that the integrity of your artwork, your creation has been compromised. Thank you, Nancy, for caring.” Marian Osher
Please See Marian’s Awesome Work at These Links and Learn More about Copyright Infringement:
The good news in all of this is that I now have a new friend, and her name is Marian Osher. My story had a happy ending. However, I’m well aware the situation could have taken a much different turn.
My final admonishment to bloggers and others: Don’t do what I did. The next time you get ready to hit the Publish button, make sure you know where the images came from and that you are using them legally.
When my mom was still alive, my sister and I often visited her in assisted living and later in memory care. Many times, we would be the only outside visitor.
In fact, there were many residents whose family didn’t visit them. Sitting hour-after-hour in the lobby, these aging seniors would watch the front entrance intently. They looked as though they were constantly waiting. Waiting for someone who rarely or never came to visit.
Their waiting and obvious loneliness made me incredibly sad.
Where were their family members? It seemed many adult children simply settled their parent or parents into the care home and then never looked back. They convinced themselves (or tried to convince themselves) that all the needs of their loved one would now be satisfied.
While it’s true the physical needs can most often be fulfilled in a care home, emotional needs may not. Residents in care homes still require advocates in their lives. They desire and need a continual emotional connection to family, friends and others.
What I call the “affection-connection” is important for all humans — no matter the age.
What can be done about the elderly who are disconnected from their families? Can we force adult children to spend more face-to-face time with their aging parents? Can affection for your parents be legislated?
Last year, China tried to do just that by passing a law requiring children to take more financial and spiritual responsibility for their elderly parents or risk being fined or sued. While the law is probably more symbolic than an actual legal threat, it was obviously designed to send a message to the Chinese citizens: Step up and take responsibility for your parents.
Personally, I was surprised to learn that elder neglect is a problem in China. I viewed China as having a deep, engrained respect for the aged. However, these traditional family values are changing, even in this ancient land.
Like much of the world, the population in China is graying, and the country will have an estimated 221 million people over the age of 60 by the year 2015.
China’s policy of limiting families to a single child has had a huge effect on the family structure. With a smaller generation of younger people, there are significantly fewer children to shoulder the care for aging parents. Combine this with the Chinese economy, which has been undergoing explosive economic growth in recent years, pushing many young adults to pursue education in large cities and later lucrative jobs — often requiring long hours — in locale’s often far away from their parents. Finally, most Chinese retirees have a tiny pension, if at all, which means they cannot afford to travel to see their family.
These factors in China lead to an ever growing number of aging, poor and lonely parents. Hence the “Elderly Rights Law,” which made headlines around the world.
I don’t advocate any U.S. laws to force children to visit their parents. But I have to wonder about a society in which adult children will hand off their responsibilities to paid workers at a care home, and then see their parents rarely or not at all.
It’s heartbreaking to see those people waiting in the lobby. Don’t forget, the years roll by and soon that could be you watching the front door and longing for family.
Last week, I did something stupid. I had my car washed. Less than a day later my white Camry hybrid was completely filthy again. The outside looked as though it hadn’t been cleaned off in many a year. Inside, the pricey, molded floor mats were again a melty sea of gravel, dirty slush and salt pellets.
I wanted to cry. I almost cried. But I didn’t.
Instead, I conjured bad words. Very, very bad words. Since moving back to my native Minnesota after living in Southern California for more than three decades, I have learned that vehicles and swearing often go hand-in-hand.
The bad words actually made me feel a little better.
Then, I remembered a post I’d written back in 2012 and decided I would share it again. If you live in snow country, you will be able to relate. If you live in sun country, then you probably have a lovely clean car and you swear much less than I do.
This post was originally written in the early winter of 2012. It has been lightly edited.
Now that I’ve relocated back to my hometown in Minnesota, I can’t help but compare my former life in Los Angeles with my new reality of small town living in middle America. For example, when I was shopping recently, I noticed almost all of the vehicles in the parking lot looked alike.
You see, it’s winter here and everyone’s car is dirty, which doesn’t seem to bother the natives one hoot. In California, a car is considered a definite status symbol. Many people will spend a small fortune and an entire Saturday afternoon having their cars washed and “detailed.”
In Minnesota, the only important “details” are that your vehicle have good tires, a working heater and enough antifreeze to get you where you want to go and back again. No one, and I mean NO ONE, gives a rat’s ass if their car or pickup is dirty. In fact, some people even consider it a winter ‘badge of honor’ and refuse to wash their car or truck until well after the first spring thaw.
Let me tell you, some days it’s damn difficult to tell the make, model or color of most vehicles. And, believe me, you do not want to get too close to any of them.
The worst encounter with a dirty Minnesota car is when it slides into a ditch. The natives know that when you do slide into said ditch, there is a certain protocol to follow.
First, the driver must pause with a wildly perplexed look upon his or her face. Then, vigorous hitting of the steering wheel and swearing will commence. Doesn’t matter if you are man or woman, young or old. The hitting and swearing are expected and accepted.
Next, grab your gloves and jump out of the vehicle to survey the situation. However, if you’re stuck in a huge snowbank, you may be forced to climb out the driver’s side window which will either be less impressive or more impressive, depending upon if you get stuck in the window opening.
By this time, someone with a larger (and, of course, dirtier) vehicle will have stopped to help push you out of the ditch. That’s right. Amazingly, these Midwestern Samaritans will often risk their clothes and their health by getting up close and personal with another person’s filthy car.
Trust me, this would never happen in California.
In addition to the good Samaritans, you’ll undoubtedly attract a few of what I like to call “ditch cheerleaders” — usually older men who have no intention of actually providing assistance. No sire. These elderly folks are there only to assess the situation and make helpful (actually quite annoying) comments.
You can expect the cheerleader to scratch his head and say in a typical Minnesota voice: “Yup, I saw you were going way too fast just before you hit that patch of black ice back there.” Or, “Say, bet you’re real glad you didn’t get your car washed this week since it’ll be plum full of mud by the time you get out of that there ditch.”
Your job is to smile, nod (all hitting and swearing is done by this point) and rummage in your trunk for a large bag of coarse gravel. The gravel is to help your tires gain some traction and hopefully avoid having the vehicle sliding further into the ditch.
However, if you’re a city girl like me, you probably won’t have coarse gravel in your trunk. I happen to prefer a store-bought bag of kitty litter, which will basically perform the same task. I have a theory that the dirtier the car, the coarser the gravel. Hence in my fairly-clean Camry hybrid, you will find a nice bag of pristine kitty litter.
That’s right, my Camry will only be ‘fairly clean’ this winter. Unlike California, where people pride themselves on their individuality, here in Minnesota everyone’s job is to blend in.
So, I figure I’ll get my car washed every three weeks or so. After all, I still have my California plates which will be a major tip-off that I’m from the outside. People who actually live here will expect me to do something stupid — like try to keep my car clean.