The Documentary is Here!!

At long last, our documentary is here!!

Grab your tissues. It was a mix of emotions for me to watch the video. Part of it was filmed last summer (2016) while the last bits were filmed just this past July...only weeks before my mom passed away. It brought tears to my eyes to see her on camera, to remember those last precious moments that she was with us. For those who have been reading my blog over these past several years (particularly those whom I haven't met), this video really brings our family to life. I hope you will watch it and capture a glimpse of the love between my parents and our family.

I am now calling upon every reader to please take 10 minutes to watch this short video documenting our family's journey of dementia! When you are done, PLEASE SHARE the video! Share on facebook, share through email, share through word of mouth...just share!!

So, here's how it works. Zach, the filmmaker, is doing something a little bit different with our story. Usually, he breaks one story into several clips that can be embedded into social media outlets. For us, he decided to do our story all in one piece. He has uploaded it to be viewed on Vimeo. You can view the trailer to the short film, following which you will be invited to make a $3 donation to view the full story. The best part: all of the money paid to view the video will be split between My Alzheimer's (the name of Zach's project) and The DEANA Foundation. Can you imagine the possibilities of people we can help with our caregiving grants through this viewership? Many of my posts have a few thousand views. If each one of my readers views this video and shares, we have the potential of reaching thousands, of raising thousands of dollars!

Furthermore, if you missed some of my other posts about My Alzheimer's, you can read all about it on Zach's website. Basically, he is on a mission to compile the largest collection on the web of Alzheimer's and dementia stories. He has traveled all around the country, on his own dime, to document stories from people living through this disease. He has spent countless hours and dollars on this project but he is determined to shed light on the disease, bringing awareness to the many challenges that come with it. He is also highlighting different organizations who are trying to make a difference in the dementia world. I highly recommend checking out his work!

Please join us in raising awareness and in bringing help to families who need it!

Without any further ado, I present to you our story!!

Deana's Story: Dementia and the Middle Class from MyAlzheimers on Vimeo.

Say What?

 

Part of the problem that comes with frontotemporal lobe dementia is difficulty with speech. For mom's dementia (semantic) it started with losing her ability to find the right words she needed to use. She's adapted by using particular words frequently in place of a variety of words. For example, if something is major, bad, excessive, etc she calls it "severe". If something is strange, funny, different, unusual, etc. it is all categorized as "weird". She says "too" during almost every sentence (often more than once in a sentence) when she can't think of the right words.

Over the past couple of months, mom's language has really taken a turn for the worst. Her speech is becoming more and more slurred and it's becoming more and more difficult to understand her. If a person is not familiar with her, they may not understand what she is trying to say. I am still able to piece together what she is trying to say...most of the time.

I tried to copy down some phrases with her slurring and mumbling, in order to give an example of just how bad it's getting. But it was very difficult to translate it and write out the sounds she was making. To give a brief description, she speaks very rapidly and misses a lot of sounds in words. Some words are completely mumbled into sounds more than words. She repeats things a lot, as if she is stuttering. Here's my best attempt in writing her speech (what she said to me the other night when I coughed in front of her):

"Why do you cah-cough like that a-ha-aha-aha you cah-ah-wa-a-ha-wa-ha you cough like that a why do you cough like that too?"

Intprets to: "Why do you cough like that? A-ha-aha-aha" (making a coughing noise).

The best way to get a glimpse at her language is through video. Please understand that I'm not posting this to make fun of my mom. I have many readers whose loved one suffers from the same disease as my mom and are behind her in their progression. This helps those readers to know what to expect and it also helps my readers who are in the professional field as caretakers or researchers of dementia (such as our UCLA team).

It will be hard to understand what she is talking about. So here's a little background: as she was stirring her evening dinner (Slim Fast), she was recalling the memory from many years ago when she took me to college (BYU-Idaho, which is a church school). After my parents had dropped me off in Idaho, they visited my dad's best friend in Oregon. At that time in her life, she had been gaining weight and started drinking Slim Fast as part of her diet regime to lose the weight. She often remembers this when she drinks her Slim Fast. Now...see if you can make any sense of what she's saying.