Wednesday, June 20, 2018

I am officially an AlzAuthor!

Today is June 20, 2018.  I have not blogged in over a year.  A lot has happened since my last post in February of 2017.  I had a few books sell on Amazon, less than 50 (not great but I'm not complaining).

I do have to mention this...a lot of the books sold were purchased by my dad who gave them to friends of his.  He seemed pretty excited that I went ahead with publishing my blog.  Dad also told me that he learned a lot about himself once he read the book.  He said he felt he should have done more for Mom.  I begged to differ.  While Dad (and Mom) did make some poor decisions, or did nothing at all, Dad was the best husband to Mom.  He loved and cared for her no matter what.

Later in 2017 Dad's kidney disease (which I never wrote about) advanced to stage 5 - end stage.  Dad chose not to have dialysis and he passed quickly and quietly on November 11, 2017.  My sister and I will never get over the loss of Dad.

Back to becoming an AlzAuthor.  Thanks to the good advice I received from author friend Gary Joseph LeBlanc whom I met through an Alzheimers/dementia forum online my book was noticed by AlzAuthors.  He said that each time I tweet I should use "#AlzAuthors".  I can't remember exactly how I ended up in contact with the board of AlzAuthors but several months later here I am.  Today I am featured on their site along with my book.

I am hopeful that in some small way my family's journey with dementia care will be helpful to others.
Thank you so much to AlzAuthors for feeling like our story is important.  My book is available on their website listed below and also on Amazon in paperback and Kindle versions.

I want to list the names of my friends on the board of AlzAuthors who helped me so much.
Jean Lee, Marianne Sciucco,Vicki Tapia, Kathryn Harrison, and especially Ann Campanella.
Thank you!

AlzAuthor links

My personal dememtia links
Facebook: https://www.facebook.com/TheBlueVelvetDrapeDealingWithDementia/
Instagram: dealingwithdementiablog
Twitter: @Dementiasucks07

Book availability
AlzAuthors: https://alzauthors.com/bookstore/#Parents  (scroll to my book and click on the picture)
Amazon: http://a.co/9CdlZ9V



Saturday, February 18, 2017

I'm Published

I finally did it.  After several years of being told by several people that I should I published my blog.  It's available only on Amazon.com and I've provided the link here.  I hope that if you order the book that it is helpful for your care giving journey, maybe learning from our mistakes and our small victories.
https://www.amazon.com/Blue-Velvet-Drape-Dementia-Daughters/dp/1520535767/ref=sr_1_1?ie=UTF8&qid=1487184647&sr=8-1&keywords=anne+balcom




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 friends...you 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.

Saturday, October 24, 2015

Who's Buying?

When Mom was still alive I took her to lunch one day at a local deli.  She decided she wanted to pay so she handed me her Von Maur department store credit card.  I giggled telling her that card wouldn't work at the deli.   She giggled also, handing me a different credit card which was a Chico's card saying "this one should work".  I thanked her for buying my lunch, secretly slipping those two credit cards into my pocket and paying for lunch using my own credit card.  I held onto those cards because they remind me of that day.   
I sure do miss her.
 #dementiasucks
#vonmaur  
@lovechicos
 (I found these in my jewelry box today) 

Tuesday, December 30, 2014

The book "Still Alice" and the movie

My husband gave this book to me for Christmas this year.  I haven't started reading it just yet but probably will tonight.  I just watched the trailer from Maria Shriver's blog for the movie.  Here is the link to her blog for those who would like to see.
Trailer for the movie Still Alice

Sunday, October 5, 2014

Look Alike!

I saw a woman at the grocery store yesterday, Mom.  She looked so much like you I had to take a second look.  Oddly, seeing her gave me comfort.  Been missing you Mom. 



Sunday, July 20, 2014

Mom and Dad get remarried

I debated for a couple of years whether or not to write about this or post these pictures but I finally decided to do it because this is what Alzheimers and dementia does to its victims. 

When my mom died in August of 2012 my parents were just one month shy of their fifty-second wedding anniversary.  The winter before moms death my parents got remarried because Mom did not remember ever having married my dad.  This wedding occurred while she was in rehab at the Episcopal Church Home nursing home rehabbing from a recent hospital stay due to congestive heart failure. 

I cannot praise the Episcopal Church Home enough for the love and care they give their memory patients.  I learned that they keep a small stock of wedding gowns (and probably tuxedos too) for occasions such as this to help maintain happiness and dignity for their memory patients. 

I was told by Aunt Margaret on that particular evening she had gone to visit mom in the nursing home.  Margaret happened to come in just as the nursing staff was getting Mom fitted for a wedding gown.  Mom was not aware that she had married my dad over 50 years ago.  Margaret and the staff at the Episcopal Church Home all chipped in to give Mom her "proper" wedding; a nice gentleman nurse gave Mom away to Dad, the nursing home Pastor married Mom and Dad and then my parents had their first dance as a "newly" married couple. 

I have a very hard time looking at these pictures because, to me, they really signify what dementia had stolen from my mom.  Mom does not look well in these pictures but she does look happy.  That will have to be enough for me knowing that in that exact moment, she was probably happier than she had been in recent years since her dementia diagnosis.  And THAT happiness is what was most important. 

Still, I hate what dementia took from my mom, my parents, my sister and me.  I hate that my children never knew my mother for the wonderful, fun person, grandmother she was before dementia.  I can only tell them but I wish they could have truly known for themselves.












 

My children visiting Mom

My children got to visit Mom for the first time in December 2013 and the second time in June 2014.  After a quick visit to Mom's niche we walked over to the lake across the way, still in the cemetery, and fed the ducks and geese.

Cave Hill Cemetery is such a beautiful place. 

 
December 2013






 
 
June 2014




 

Monday, July 7, 2014

Mom now resides in Cave Hill Cemetery

We actually put Mom's ashes in Cave Hill's Cave Hill Chapel area on October 4, 2013.  I'm just now getting around to posting about it (July 7, 2014).  It's been difficult.  I have really missed Mom.  From time to time I find myself reaching for the phone to call her for different reasons.  Camille said she does the same.  It's hard to believe that a month from tomorrow is the 2 year anniversary of her death. 
 
Here are some of the pictures I took that day of the lovely area in Cave Hill where Mom now rests.  Mom loved Cave Hill and would love knowing that she is now buried there. 
 
 
 
 Mom's niche
 
 

 This is the wall where Mom's niche is
 
 
 Cave Hill Chapel area
 
 
One of the lakes in Cave Hill Cemetery directly across from Cave Hill Chapel.  Here you will find many geese, ducks, swans, and occasionally, if you are lucky, a peacock or two.

Wednesday, July 3, 2013

Cherokee Park, in honor of Mom

On February 8, 2013, exactly 6 months after Mom's passing Camille and I received an email from my aunt Beverly that Mom's plaque had been installed on a park bench in Cherokee Park, one of Mom's favorite places in Louisville.  Her bench is in the pavilion on top of Berringer Hill, also known as "Dog Hill" or in the winter time "the sledding hill". 

Here are some pictures to remember the day we all went to visit.

 
 
The pavilion on Berringer Hill where Mom's bench sits

L toR:  Dad, Margaret, Camille, Beverly, Me

Dad

L to R:  Margaret, Beverly, Dad, Me, Camille

 

Sitting on Mom's bench - Dad, Camille, Me

Dad, Beverly, Margaret

Scattering bird seed in honor of Mom

Beverly

 
Margaret

Me (sitting), Camille

Dad