You are more likely to know someone walking through the fog of brain injury than you are to know someone with cancer.
Really, you are. Think about this:
1.8 million people each year are diagnosed in the Emergency Room each and every year with brain injury from some kind of blow to the head
700,000 people have strokes that have some thinking deficits as part of the package, each and every year
Add to that the fact that no one really keep stats on those brain injuries related to chemo-therapy, anesthesia, medications, and neurological diseases that pop up each and every year. Now consider unknown number of combat-related brain injuries and all those brain injuries that are still significant but not diagnosed in the ER (like mine).
Trust me. You know someone who has had a brain injury.
In today’s featured broadcast on the Being Brain Healthy Virtual Book Tour I speak with an amazing woman, Tami Neuman from the Care Radio Network and host of Conversations in Care. Tami has years of experience caring for dementia patients and she really gets it that “reality” (yes those are air quotes) is not the same for everyone and that support for those with brain challenges is best given with a healthy dose of compassion and joy.
In addition to everyday brain health and turning up the noise on life, Tami and I spoke about promoting dignity, self-respect, and understanding for those we are supporting by treating each as intelligent, vibrant adults. We talked about how I realized one day that we all (yes all of us) speak to people who are struggling to think or understand as if they were children – we speak slowly and clearly using simple, tiny words – and that is just not OK.
Listen in our conversation HERE. Warning: Listening to Conversations in Care may be habit forming!
What have you noticed about how people change when they care for others?
Here’s to remembering to put dignity, self-respect, and quality of life at the core of caring for others.
It took me a long time but I finally saw the movie Still Alice featuring Julianne Moore and Alec Baldwin. I knew I “needed” to see it – the topic, Alzheimer’s disease (AD) and cognitive decline, are at the core of everything I write about. I read glowing review after glowing review and knew the acting, the storyline, and the approach to this oh so important topic were all superior.
If you haven’t seen the movie, check out the trailer.
It took me a while because I knew this was going to be hard for me to watch for a whole lot of reasons but mainly because, even more so than many of my peers, I just know that could be me.
If there was a scale to measure my risk factors for developing some form of dementia that could rob me of my ability to think, my score would be through the roof.
I’ve had at least two head injuries and a series of smaller but still significant bumps and blows to the head that scrambled my thinking. Head injuries have been linked to increases in rates of dementia. The more you have the stronger the link.
My gene pool is littered with documented cases of dementia. My mom’s favorite cousin Dorothy – the kindest, most generous woman I’ve ever met – had her brain, her gentle personality, and her life hijacked by Alzheimer’s disease. My dad and several of his cousins developed vascular dementia – a condition that eats away at the cognitive abilities of even the most intelligent and does not stop.
We now know that a focus on wellness and self-care in young adulthood sets us up for successful brain aging. My late teens and early twenties? Yikes!
My friend Lois who writes beautiful movie reviews (HERE is her review of Still Alice) told me that if I am ever going to reveal any parts of a movie that could be construed as key to the plot, include a spoiler alert. So, here is my version of a spoiler alert. I will reveal some details of important conversations and how those conversations defined and framed the lives portrayed in the movie. This may give away some important parts of the movie so be warned.
Still Alice is so much about how people see and treat each other and how a disease, especially one that carries strong prejudices and fear, can completely change all of that.
Much to my surprise, I found some universal truths about conditions that change thinking in radical ways and a great deal of hope in the conversations and the relationships that fueled them.
Here is what stuck with me as this beautiful movie unfolded and what triggered what I know to be true not just from my research and readings but from my life, my conversations, and my amazing relationships.
Alice said that what was happening to her and others with AD changes other people’s perceptions of “who we are and that changes our perceptions of ourselves”. The lesson there is this: Think about how your words and actions can change how someone who is already in a tough spot sees herself. Temper them. Massage them. Fill them with a good dose of how you hope that person will see herself. It matters and it counts.
As the disease progressed and the frustration mounted, Alice’s daughter asked her how her “condition” felt and that opened a flow of a different kind. It is important to ask how the conditions feels. She may not be able to tell you in a completely understandable way but know that it feels good to know that someone really cares – not just about how to “deal” with you and your condition, but how that conditions feels to you – all of it. Whether it is uncomfortable or not, ask because it matters and it counts. I guarantee you, if you ask and really pay attention to the answer, you will learn something not just about that person but about yourself that just might change you.
At one point Alice’s neurologist was talking about why decline sometimes happens so quickly and I heard this: People with higher levels of education often mask symptoms by keeping mentally engaged and working through as much as possible. That does not delay disease, it delays diagnosis. Think about that one for a moment brilliant people. I plan to dig into that whole thing very soon, in great detail.
Alice said at one point, “memories are my most precious possessions.” That took my breath away.
Finally and most importantly for me, Alice said “I am not suffering…I am struggling”. This was personal for me. I hate it when people say I suffered a brain injury or call me a survivor. I am a struggler. I like that. It fits so much better.
Here’s to all the strugglers.
I found myself thinking about all the hopeful research going on right now surrounding AD – symptom treatments, promising signs in the area of prevention and stopping progression of the disease. Promise on the horizon doesn’t lessen current struggles but certainly gives those of us who score off the charts on the imaginary pre-disposition scale and those of us who worry about developing AD so much hope.
Learn how you can help at http://www.alz.org/
Learn what’s new in Alzheimer’s research HERE and keep the hope alive.