A year ago today, my grandmother passed away after a long battle against Alzheimer’s disease.

Despite expecting it to happen, it is significantly harder for me today than I thought it would be.  While I was relieved she was finally released from this tormenting disease, being so far from the people I love today has proven extremely hard.  I knew when I married my soldier I would be far from home so this too was expected.  However, the pain is still extremely fresh.

My grandmother lived with us since I was six years old. My family moved to Georgia from the midwest and my little sister was still a toddler.  With such a major move and crunch on finances, my grandmother chose to move with us to help watch my sister while my parents worked.  Eventually, we added another sister and moved back to the midwest following my parents’ jobs.  Grandma stayed on to help with the youngest.  After we were all in school, grandma still stayed.  

It was after my junior year in high school that we started to see some unsettling changes. It started with little things. Talking in her sleep, misplacing things, getting lost while driving. Then it was significantly worse. Mood swings, hiding things in random places, taking the bedding off the bed constantly, uncontrolled bladder movements….the list goes on.  By the time I was a junior in college, the disease had started to really take its toll.

All the while, my immediate family watched this descent.  This wasn’t the grandma we knew.  It was absolutely heartbreaking to see this disease take hold and totally transform her.  

It wasn’t fair to us to have the whole burden placed on us–my family is VERY extensive.  My sisters were still in high school and elementary and my parents were working full time.  I was just starting at a new college and not being there for my family was tearing me apart.  After seeing a counselor at the health center (and subsequently bawling my eyes out to a total stranger), I decided to withdraw from school and move home to help my family.  My mother was getting the brunt of the work because despite the signs, my father didn’t want to accept what was happening to his mom.  He was in denial a lot of the time and didn’t see how much it stressed the rest of us out. I don’t blame him at all.  If it were my mother, I’d be in denial too.  Seeing someone you love so much change so completely in such a short amount of time would leave anyone shell-shocked.  

I spent a year back at home watching grandma. I’m positive that in that time, my mother, sisters, and I all had more than our fair share of tears and frustration. I know we suffered mentally, emotionally, and physically because of it. My father finally began to realize that he couldn’t deny it any more.  He saw what this disease was doing to his family as well as his mom.  Eventually, he would agree to hire someone to watch her full time while the rest of us went to work/school during the day.  It wasn’t long after hiring the help that grandma took a turn for the worse.

As with the aggressive progression of Alzheimer’s, behavior turned violent.  Our help quit without notice after grandma swung a rake at her, leaving us back to being the full time caretakers.  It was then I transferred to a college closer to home so I could be available for my family should they need it.  Shortly after, the decision to put her in a nursing home was made.

Putting her at Good Sam was the hardest day of everyone’s life.  She was still cognitive enough to know that she wouldn’t be coming back home with us.  Devastating in its most complete form.  Eventually, my family began to really dislike visiting.  It was a constant reminder that we couldn’t do any more from home.  

Our families had just gathered for a multi-generation photo the day before we got the call.  We were in the same state as the Good Sam, but because of the already long trip back home decided not to stop, thinking we’d go the next time when we had more time.  That’s the funny thing about time….you always think you’ll have more time later.  The next day, the Good Sam called us and said she was unresponsive.  As per our prior agreement, we had a do not resuscitate order in place.  We knew that reviving her would only prolong the torment of the disease and she had been battling so long.  My parents immediately got in the car to try to be there for when she finally let go.  My mother called about two hours into the drive and said she had passed before they got there.  Her celebration of life followed a few days later, reconvening our families.

It was my task to put together a slide show for the service.  Our family consented to having her body (most importantly her brain) given to the UIMC for study on Alzheimer’s in hopes for one day finding a cause/cure so the celebration wasn’t a typical one. With no body, we only had our memories to pay respects to.  Since I had been known for piecing together slideshows for other family events (graduations, birthdays, funerals etc…) it was up to me to put together a slide show for this celebration.  I poured through boxes and boxes of my mother’s photographs (thank goodness my mom was/is notorious for taking pictures) trying to find every shot I could with grandma in it.  Because she had lived with us so long, we were fortunate to still have a lot of her family pictures from generations long gone.  Not wanting to have a slide show showing just my family, I reached out to cousins/aunts/uncles etc for more images.  I think I was sent maybe 10 images from just as many people.  With her death still so fresh in my mind, I set to the task of scanning and piecing together a decent video.

I don’t think I’ve every cried so much. Through these pictures I saw the grandmother I adored as a child and how memories of her in recent years had overshadowed the joy with sadness and frustration. I knew she couldn’t help what the disease was doing to her as much as I couldn’t help feeling so helpless and frustrated by her behavior.  And yet MY recent memories of my grandmother were tainted by this terrible disease.  My extended family still had the better years to look back on and remember, while my immediate family had to cling to what few happy memories could shine through during the worst of the storm.  I regularly ranted to my family how it wasn’t fair that I would do all this work and have to see her face but they all got to remember the good times the best. It was a labor of love in the end.  Seeing the old photos I could see how wonderfully happy she had been in life before Alzheimer’s took her hostage.  The woman was always smiling, even in the end.

Now, a year later….I’ve finally posted the service slide show and made sure to store all the old images safely in an online data base.  I’m still haunted by the bad memories which are only increased when extended family members start asking for photos and old recipes.  It genuinely upsets me to no end. Why now, when she’s gone do you suddenly have an interest in keeping her memory alive?  Where were you when my family was going through all of the pain associated with her care?  It shouldn’t surprise me.  I know it is not done to be malicious and I should be grateful my family has the recipes and photos to share.  But…..the bitterness still rears its ugly head.  That makes me human.  It comes from living with this woman and seeing the change happen. While the rest of the family was sheltered from the stark reality, mine had to find a way to pull together to do what was best for her.  We have the emotional scars and have to struggle to think back to the “good times” before this took her from us.  While we are all so blessed to have had her in our lives so intimately, we also have to carry the burden of seeing the ugly side of things.

All in all, I miss my grandmother and wouldn’t wish this disease on my enemies.  From the personal experiences with Alzheimer’s, I can’t begin to describe the devastation. But, I do my best to keep the happy memories alive–if only to stave off the negative ones. She was a wonderful lady who loved her family more than anything and it was blissfully obvious in everything she did.

I’m so thankful she is in a better place and finally free of the disease’s grips.

In honor of her memory, the service slideshow link is below:

https://www.youtube.com/watch?v=eTEP12iznw0 

Love you grandma,

-A