Saturday, October 22, 2016

When I'm Gone Remember Me

On Saturday October 8, 2016:  David and I went to a barn party that the company he works for hosted in Prospect KY.  A caterer supplied delicious BBQ with sides and plenty of beer.  A live band was hired to perform called The Tailgaters Band.  The band played for about an hour or so performing mostly fun country songs squeezing in some fun top 40 and heavy metal music.  Then their lead singer, Joe Bachman, slowed it down and began to tell us of a song he wrote and wanted to sing for us about his daddy who is living with Alzheimer's disease.  As soon as he started telling us about the song and his dad I knew I needed to record this performance (which I did).

After the song ended I told David that I wanted to ask their singer (Joe) if I could put my video of their performance on my blog but I was too scared to actually ask.  I hesitated because I figured they probably get people of all sorts asking them to sign autographs or who knows what.  But I really wanted to put this video in my blog so with David's encouragement I worked up the nerve to ask.  As I began to walk over to Joe during his break a couple of other folks approached him so I turned around and walked away feeling disappointed.  I didn't want to interrupt.  Several minutes went by and when Joe finished talking with the others he headed back toward the stage.  I knew that I wouldn't get another opportunity to get Joe's permission to post it.

After a few more minutes the band was still on their break and Joe came back out away from the stage to the food table to get some BBQ.  I decided to take this opportunity and walked over to ask him about the video I just recorded.  I said "excuse me" and introduced myself.  I told Joe I hated to bother him while he was getting his food, but...  I briefly told him of Mom and explained my blog, then asked for his permission to post the video to my blog.  He told me he would be honored and said he would also email the MP3 of the single to me.  He took my name and email address right then and offered sympathy regarding the passing of Mom.

I'm so thankful to him for allowing this post.  Below is the link to the video I took that night.  The link will take you to my Dealing with Dementia Facebook page because the actual video was too big to post directly here.  I want to post the MP3 of this single here too but I haven't figured out how to do that just yet.  I promise to post the MP3 if I ever figure out how to.
The Way I Used To Be 

Final thought as I'm typing this:  all the people I've talked to who are currently caring for or have cared for in the past the symptoms of their loved one with dementia/alzheimers are all the same. It's like a broken record when discussed with others.  We all understand, we all empathize, we all hope for a cure.

The Tailgaters Band performing The Way I Used To Be.  Joe Bachman singing about his daddy is on the right.

#WhenImGoneRememberMe #dementiasucks #alzheimersdisease #alzheimersassociation #endalz #dementia #memoryloss #sethrogan @sethrogan #leezagibbons @leezagibbons @theellenshow #theellenshow #ellendegeneres #mariashriver #mariashriversmarchonalzheimers @thetailgatersband

Sunday, July 17, 2016

Hopeful findings in my AARP Bulletin

Hello everyone!  I received my AARP Bulletin in the mail yesterday but didn't open it until today.  On page 4 I saw this small article on infections in the brain causing Alzheimer's.  Click on the link below and have a look at this hopeful article.  -Anne

Wednesday, June 29, 2016

All the way from College to Real Life

I had an acquaintance from college, Western Kentucky University.  Her name was Debbie Kirsch.  We were both sorority girls, she was a Phi Mu and I was an AOPi.  Both of us were little sisters to Kappa Alpha Order fraternity...known as "Southern Belles" back then.  Our lives were fairly carefree; our only worry being our studies.  We didn't know each other very well but had several friends in common.  
Years later Debbie and I reconnected at a KA reunion dinner.  She was as vivacious and funny as I remembered her from college.  We soon reconnected on Facebook.  Little did I know that we would eventually have dementia in common.  Debbie is my age and I believe her husband isn't much older.  Recently Debbie's husband was diagnosed with early onset dementia.  She is struggling terribly, dealing with the heartbreak of losing her husband.  She posted this to my Dealing with Dementia Facebook page and with her permission, allowed me to post here to my blog.  It is truly heartfelt and heartbreaking.  
To all of you who are struggling caregivers...please get help.  This is a disease that you cannot deal with alone.  Educate yourselves as Debbie has done.  There won't be a fairy tale ending but the more you know the more the better it will be for you.  This disease is much harder and stressful on the caregiver than on the patient.  And please communicate and rely on need them now more than ever!
Here is Debbie's post...
My post to my friends and family and public at large
So I wonder......,how many people actually know about Dementia. Sure many have heard of Alzheimer's disease. That is the most recognized FORM of dementia.,
There are others. And sometimes a person can have more than one form of dementia. I never knew that. Amazing.
Day to day tasks and activities for us turn into chaos at the drop of a hat. I, logically think thru a plan of action, people with Frontotemporal Dementia (FTD) cannot do that anymore. Their "executive function" in the brain is diminishing.
I figure out a series of events to lead to the finish of a project. People with FTD don't do that anymore.
I'm no Emily Post but know generally which forks to use, or know to ask, and know what's generally accepted public behaviors. People with FTD start losing that.
So, when someone may come up to you and say something TOTALLY inappropriate ( your weight, your parenting, your clothes) please , be aware, be open minded, be cognizant that THIS person may have a terminal non-curable debilitating brain disease. Please. Or they may be awkwardly obsessed over talking to your child...... Because they think it's normal behavior.
And if a total stranger comes up and starts telling you WAY too much TMI about their life, that may be it also. My husband just flirted with a Lowes employee then told her in details about our first date.....I had to go find him in the garden department with this woman. They lose all inhibitions over time.
Please don't offer someone with these symptoms a drink.... They should not drink most likely with medications they are on and they will NOT tell you THAT. They're losing their realization of consequences of their actions.
As salespeople.... Well good luck.... There are a LOT of spouses and families out there mad at you because you upset led or proposed a higher priced item to this person that they really did not need.
I'm getting ready to print out little cards to take with me when we go out in public in case the necessity arises that I need to provide an explanation to someone who was in the cross hairs of this behavior. 😑
Most FTD patients become obsessed with various things at various times.... It may be mowing...... So they mow the neighbors lawns too, without being asked or told. May be offensive.
Obsessions can change from day to day. My husband, a corporate financial controller for a world- wide corporation, became insistent before April 15, that he had NOT filed his taxes in 15 years. I signed those yearly tax reports, I know we filed them and paid our taxes. It's so sad and frustrating to see these things progress.
I just wanted to share some knowledge..... And some understanding..... And in hopes that I , from this, can become a better and stronger person all the while ... For my husband and my son and daughter and grandson. And so I can be strong for my sisters-in-law and their families too.
Thanks for reading. I have much more to share but don't want to belabor my point.

Thank you, Debbie, for contributing this to my blog.  Love to you, my friend.