In the early summer of 2015, I received my diagnosis and my initial reaction was one of despair and sadness. I started thinking about the end of life with this disease and found myself in a dark place. I think it’s human nature for initial thoughts to go this way, a knee-jerk reaction so to speak. It’s a tough pill to swallow when you’re told you have a disease with no cure and when you believe there is no hope.
With time, I have come to realize that there is much hope in my life. I learned that many people live well with this disease for quite some time, myself included. We all live this terminal condition we call life. I found that hope, for me, is to be in the “here and now” and how well I live my life every day.
I still have the same dreams and bucket list in life that I had before my diagnosis. I still do things that have meaning for me in my life. I still have fun. I still get out and play golf and travel. I will continue to enjoy life for as long as I possibly can to the best of my abilities. Having said that, isn’t that what we all aspire to do? You see, hope is all around us—you just have to see it. Enjoy life right now. That’s what it’s all about.
When I think about my healthcare providers, they have been awesome. They have conducted themselves in a very positive, supportive way and have made a huge impact on my life towards living well with dementia.
But there was one incident when I couldn’t remember the name of the doctor I was going to see and had to ask the receptionist a number of times. She kept asking if I was kidding, which embarrassed me at the time. Thinking back on this I wonder if something could be put in place for support staff to have a better understanding of Alzheimer’s.
Understand that this is only one negative experience compared to 99 percent positive experiences with my healthcare providers and I’m so grateful for all that they have done for me.
When I was diagnosed with Alzheimer’s, I was working at the time, and sharing my diagnosis made it easier from a workplace perspective. My colleagues cut me slack, generally, and they supported me as well.
Here is the thing about telling someone you have a form of dementia.
When I was diagnosed, I needed time to process the information. You need to give the person time to process the news. Everyone reacts in their own way.
As time went on I used a technique that I found to be very effective. When I told someone I had Alzheimer’s, I would give them a chance to say what they wanted to say. Very early in the conversation, I would let them know I’m doing just fine and immediately change the subject. I would discuss the business at hand or a hockey game from the night before – whatever it took to change the subject. I found this helpful for the person who was feeling awkward.
I found by just being me day in and day out, it didn’t take long for people to look past the disease and still see me, not the disease.
When it came to telling my family, I found that to be a more difficult discussion, especially sharing my diagnosis with my children. I wanted to share my love for them and impress upon them that no matter what—regardless of the changes that will happen—that will never change. I let them know how proud I was of them. I also reminded them that we all live with this terminal condition called life. Of course, we’ve had discussions about it since then, but in a more positive setting and after they had time to process my diagnosis. I suggested that they check out the Alzheimer Society as a source of credible, researched and accurate information. I imagine that learning some aspects of dementia would be difficult for them. I know it was for me. I find the information on the Society’s website is presented in a way that they can learn when they’re ready and at a pace that is good for them.
In terms of stigma, I have seen it manifest itself in many ways. This is what stigma looks like to me.
Shortly after I was diagnosed, I was standing in a line at a grocery store buying some food. The line was long and I was watching the cashier ringing through the items. I could hear the cashier asking the customer at the till if he had found everything he was looking for. After hearing the question, the customer realized that he had forgotten something, and with a very loud voice declared that he was having an Alzheimer’s moment while attempting to mimic what I thought looked like someone having an epileptic seizure. The cashier and everyone in the line burst into laughter. I guess at the time, my wounds being fresh from a recent diagnosis, the gravity of my situation came rushing back to me. I was filled with emotion as this was going on. If you can picture me: holding my head down, choking back tears and trying not to bring attention to myself. By the time it was my turn to pay for my groceries, I had regained my composure. I told the cashier that I felt the behavior was not cool. She replied, “Oh come on, you have to admit it was funny.” The conversation ended at that point. I didn’t feel like getting into a debate over inappropriate comments. I must say I took that experience personally.
As one person with dementia said, being told you have a form of dementia is a tough pill to swallow. Having a crapload of stigma being piled on doesn’t help our situation at all.
Stigma shows up everywhere and it’s unwelcome. One day when I was on Facebook I saw three different jokes poking fun at Alzheimer’s and dementia, including a cartoon of an unkept bird with the caption: “I do not have Alzheimer’s, I have some timers. Sometimes I remember, sometimes I don’t”. Thirty-three likes and happy faces acknowledged the joke! The same day I went out to meet some friends and new acquaintances. During the course of the evening, some people started making Alzheimer’s jokes. When one would tell a joke, another person would tell another one and so on.
Some friends mentioned I had Alzheimer’s and found myself politely suggesting that the jokes were not in the best taste. Another person asked me if I liked the song Somewhere over the Rainbow as music therapy. I responded that I was more into Billy Joel or Tom Petty.
That night when I got home I thought I would relax and watch some TV. I was watching a late-night comedy show which showed a skit of an unkept gentleman who looked like hell. The brunt of the joke was that he was that way due to Alzheimer’s.
This all happened on the same day.
Are things getting better? Yes and no. There are thousands of people and many organizations like the Alzheimer Society that are dedicated to combating stigma and raising awareness about dementia and its impact on peoples’ lives. And for this, you have my deepest gratitude and respect. Having said that, in this day and age of enlightenment and higher education I’m disappointed with behaviors I see in our society. I’m disappointed at jokes being made about people with dementia in the media and people making jokes in public and in our communities. I’m disappointed with derogatory remarks being made about a condition that people have no control over. My heart sinks every time I see this behavior. My hope is that this behavior will be frowned upon collectively in our society and that it will stop. As sad as it is, stigma is alive and well. I’ve seen talk about dementia in whispers while the person looks over their shoulders for fear of someone hearing about it. I have seen the hurt and pain that stigma perpetuates.
I looked up the definition for stigma and this is what I found: Noun: A mark of disgrace associated with a particular circumstance, quality, or person. Then they use “the stigma of a mental disorder” as an example.
I started thinking about all the derogatory remarks, all the dementia jokes people with dementia and their loved ones have to endure. I googled dementia jokes and found 44 pages of websites, 10 per page dedicated to Alzheimer’s jokes. I then googled ALS jokes. All I could find was one article on how people were outraged about an ALS joke made in a movie.
If I were to joke about ALS or cancer you can bet that people would be quick to say what are you doing? Are you kidding? How dare you? So why is this behavior so prevalent towards dementia? The reason is that we allow it. We accept it as an everyday thing. We click like or a happy face when we see dementia jokes on Facebook or in the media. It has become the norm.
When I worked in health management they trained us in our way of thinking. I remember identifying a problem and the first question I would ask would be what are you going to do about it? It’s one thing to identify a problem. The question I pose to anyone reading my story is what are we going to do about it?
Let’s focus on solutions towards the impact stigma has rather than focusing on the problem.
I don’t hesitate to correct this kind of behavior if I see it happen. Often people making comments are people I know who are good people by nature. They don’t understand the implications of their actions. I make it a point to try to change the person’s thinking in a polite, diplomatic way. I’ve always thought: win the battle, lose the war.
What if a collective consciousness toward stigma really caught on? I suspect it would improve the quality of life for millions of people with dementia and their families in a big way. I suspect people would not be so apprehensive about seeing their doctor for a possible diagnosis to maximize available treatments and to strive to live as well as possible with this disease. I suspect people would not have to look over their shoulders when speaking about dementia in whispers for fear of feeling ashamed. I like planting seeds. I would like this awareness towards stigma to grow within you.
You can help change judgment into compassion, and assumptions into understanding.