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

 

 

Thursday, June 27, 2013

I was a Guest Blogger! So Exciting!

Exciting news!  Recently I was asked to be a guest blogger for the LivHome Home Care blog, writing about my experience with learning to cope with Mom's dementia. Originally my submission was 3 pages long (posted below my actual submission here).  After I emailed it to the blog I was told I had to sum it all up in 500 words or less which wasn't easy but here it is....was posted on their site Wednesday June 26, 2013. 

http://livhomeblog.com/june-blogger-series-a-day-in-the-life-anne/

June Blogger Series: A Day In the Life with Anne

We’re continuing our June Blogger Series and exploring what a day in the life of a caregiver who has experience great loss.  Today’s guest blogger is Anne, who was  a full time caregiver for her mother until August 2012.   We wanted to give you a glimpse into what a day in the life is like losing someone you love and how to cope with their loss.

Here is Anne’s story:

From the day of Mom’s dementia diagnosis I started losing sleep.  I couldn’t stop thinking about it and how our family would be effected by everything that was about to come our way.  I started looking for information online.  One of the first things I realized was that I needed to find a support group.

I found a support group thanks to my Aunt Margaret.  She had been attending this support group at a local nursing home, The Episcopal Church Home in Louisville KY.  Margaret convinced my dad to go with her.  He was hooked!  Then I went.  I cried a lot during the first meeting hearing of how one day Mom would probably no longer know me, my sister, my dad.

Margaret, Dad, and I went to this support group once a month for several years.  The group consisted of family members who were caregivers.  We all discussed, laughed, cried, compared our experiences.  This group gave me the strength I needed to know that I COULD GET THROUGH THIS.

At night  I would lay in bed, my mind going a hundred miles an hour, thinking and worrying.  One night I got out of bed, went to the living room with my journal and started jotting down everything I was thinking.  FINALLY, I found my way of coping!  WRITING!  I put everything on paper and I could let it go.  I didn’t have to think about it any longer because it was on paper.  Sleep finally came.

When friends and family would ask about Mom or how we were doing I found it to be tough to rehash everything so I decided that a blog might be the way to go.  With the blog they could all read about Mom’s condition online and find out what was happening; we wouldn’t have to explain over and over.
I thought there may be other people we didn’t know who might stumble across my blog who were in the same situation as us and understand that they were not alone.  Along the way I found other blogs very similar to mine realizing that there is an entire community of people just like me!  I started looking on Facebook and Twitter.  Again, a whole new group of ‘friends’ who felt the frustration, sadness, the helplessness that I was feeling; an entire community of people who are caring for someone with some form of dementia who want to talk, help, and hug you.

It has been 10 months since my mom passed away on August 8th, 2012.  Congestive heart failure is what took Mom.  She did not die as a result of the dementia but I lost her years before her physical death, the dementia stole all of who she was.

My advice to anyone who is caring for someone they love with dementia is to find help.  Find a support group.  Find at-home care.  Plan for the future of your loved one.
You cannot do it alone!

*******************************************************************************

This is my original 3 page submission which I was later told could only be 500 words or less...


Dealing with Dementia by Anne Forrester Balcom, Louisville KY
People cope with things in different ways. 

For me, the best way I found to cope with my mothers dementia diagnosis was to write about it and they way it made me feel.

 First a little history...

Since the age of 39 or 40 Mom lived with health adversity.  She was first diagnosed with coronary artery disease and almost immediately sent to the hospital for her first double bypass open heart surgery.  Mom's recovery was a long, arduous one.  Six months after her surgery she found out her bypasses had failed and was sent back into surgery for her second bypass, this time a triple. 

It was after that second surgery that we were told that Mom more than likely would not live to the age of 42.  I was just 11 or 12 years old at the time; a young age to find out I was going to lose my mom.  It was from that moment that I began learning to cope with tough, life-altering news. 

None of my friends had a sick, dying parent.  Why did I?  I had to learn early that life isn't fair.  I don't remember exactly how I coped with the terrible news about my mother but I remember having terrible dreams, nightmares really, about her dying. 

Bad news about Mom's health was a reoccurring issues over the next 30+ years. 

Mom was a fighter.  She lived well beyond her 42nd birthday and through several other devastating health diagnosis'.  Multiple Sclerosis, Type 2 diabetes, osteo & rheumatoid arthritis, to name a few.  Because Mom was such a fighter and had such a strong will to live she was able to surpass her life expectancy by 35 years!  Afterall, she had a lot to live for:  two girls to raise, two girls to see graduate from high school, college, marry, and have children.  Mom lived to see it all with poise, grace, and a sense of humor. 

Over those 35 year we had many "close calls" with Mom's health and being told by the doctors that "this may be it".  Well, it was NEVER "it".  Dad, Mom, my sister Camille, and I began taking the bad news and the "it" news in stride after a while because it became our new normal.  Mom ALWAYS lived.  She really LIVED!  She lived her life in constant pain but she could deal with it, laughing and joking about it all.  Mom never complained.

Years later when the diagnosis of dementia came in 2006 we all were thrown into a whirlwind of 'what do we do now?".  This couldn't be happening!  Yet another health crisis for my mom with no way out this time, no cure, no happy ending.  We all had to come up with a new way to cope because we knew we ALL were in for a very long, tough road ahead. 

Camille, my sister, had just experienced the loss of her mother-in-law to Alzheimer's disease.  She was familiar with all that goes along with it.  Although Camille was upset with Mom's diagnosis she seemed to be able to take everything in, go on with her life as normal and was a big help to both Mom and Dad.

My parents, Hal & Marilyn, went into denial although they wouldn't admit it.  Sure there were tears cried and some discussion with us of planning for their future but instead of actually planning they turned to spending money on things they didn't need.  One example...they bought matching Vespa motor scooters (and this was after Mom had stopped driving a couple of years earlier).  BAD IDEA!  Camille and I wouldn't have it.  We had to put our foot down and had them get rid of the Vespa's


From the day of Mom's dementia diagnosis I started losing sleep.  I couldn't stop thinking about it and how our family would be effected by everything that was about to come our way.  I started looking for information online.  One of the first things I realized was that I needed to find a support group. 

I found a support group thanks to my Aunt Margaret.  She had been attending this support group at a different nursing home, The Episcopal Church Home in Louisville KY.  Margaret convinced my dad to go with her.  He was hooked!  Then I went.  I cried a lot during the first meeting hearing of how one day Mom would probably no longer know me, my sister, my dad.  

Margaret, Dad, and I went to this support group once a month for several years.  The group consisted of many family members who were caregivers.  We all discussed, laughed, cried, compared our experiences.  This group gave ME the strength I needed to know that I COULD GET THROUGH THIS, I wasn't alone.

At night  I would lay in bed in the quiet of the night, my mind going a hundred miles per hour, thinking and worrying.  One night I quietly got out of bed, went to the living room with my journal and started jotting down everything I was thinking.  FINALLY, I found my way of coping!  WRITING!  I put everything on paper and I could let it go.  I didn't have to think about it any longer because it was on paper.  Sleep finally came.
 
When friends and family would ask about Mom or how we were doing I found it to be tough to rehash everything so I decided that a blog might be the way to go.  With the blog they could all read about Mom's condition online and find out what was happening; we wouldn't have to explain over and over.  Then I thought there may be other people, people we didn't know who might stumble across my blog who were in the same situation as us and understand that they were not alone.  Along the way I found other blogs very similar to mine and realized that there is an entire community of people just like us, just like me!  I started looking on Facebook, Twitter, etc.  I had found a whole new group of 'friends' who felt the frustration, sadness, the helplessness that I was feeling. 

There is an entire community of people who are caring for someone with some form of dementia.  This community is full of people who want to talk to you, hug you, help you. 

It has been 10 months since my mom passed away on August 8th, 2012.  Congestive heart failure is what took Mom.  She did not die as a result of the dementia but I lost her years before her physical death, the dementia stole all of who she was. 

My advice to anyone who is caring for someone they love with this horrible disease is to find help.  Find a support group.  Find at-home care.  Plan for the future of your loved one. 

You cannot do it alone! 

Sunday, May 26, 2013

Dementia Awareness

"The Purple Angel is the symbol of hope. It has been adopted around the world by people who care about dementia. It is a symbol to be used to spread dementia awareness internationally."  ~Gary Joseph LeBlanc
Won't you share too?

Wednesday, May 22, 2013

Insight

This book was recommended to me by a friend shortly after Mom passed away.  It was written by Hospice nurses who share their experiences with patients near death and how the patients give clues that they are near death.  So many interesting stories about "travel".  I'm still reading it, having to read it bits at a time but getting insight into clues that, perhaps, my mom was giving to us.  



Sunday, November 25, 2012

Thanksgiving 2012

Me, Dad, Camille
This was our first Thanksgiving without Mom. Throughout the day I felt the loss as I'm sure everyone else did too.

Our Balcom family tradition has become this:  kids bundled up in blankets on the couch with the tv on to watch the Macy's Thanksgiving Day Parade followed by The National Dog Show.  David and I drank our morning coffee while reading the morning newspaper and me looking at the newspaper adds for all of the stores participating in the Black Friday sales (I don't shop but like to look).  Our day was relaxing leading up to dinner at my sisters house.

We enjoyed Thanksgiving dinner at Camille's with her family and with Dad. This was the first year in many that I can remember that no one made a toast before we began eating. Usually the toast is Dad's "job". Instead this year we all said "happy Thanksgiving" and then ate while talking and laughing.  There was a ton of food and every bit of it was delicious. 

No one talked about Mom or her death and it wasn't that we didn't miss her, she was greatly missed. Instead we focused on Lyndsey's 22nd birthday (which was the next day, Friday) and Camille's 50th birthday (yes, her BIG 5-0, which was the following Tuesday).

Overall, our evening was a happy one with very few tears, delicious food, and good company.

Dad with all his grandkids
LtoR: Lyndsey, Nick, Dad, and in front of Dad: Wade, Emma