We Lost her Twice: A Story of Alzheimer’s Grief

0

When someone you love suffers from Alzheimers, the grief process cycles over and over.

 

the word Alzheimers on white puzzle pieces, where half of the pieces are missing

 

Season four of This is Us rocked me to my core. Don’t get me wrong, the entire series has me in tears every week, but season four was big ole ugly sobs. Spoiler alert: Rebecca, the matriarch of the Pearson family, is diagnosed with Alzheimer’s.

 

Rebecca Pearson’s struggles brought me to tears because I lost my grandmother to Alzheimer’s just a year before.

 

As the oldest of four grandchildren, I had the most time with “Grammy” and have beautiful memories. My cousins are 11 years younger, and by the time they were old enough to form memories, most of them included versions of the Grammy with Alzheimer’s. My brother is two and a half years younger and luckily has many memories of the Grammy we all wanted to remember.

 

Grammy was the epitome of the sweet grandmother portrayed on TV shows and movies. She was compassionate and very thoughtful. She loved to bake, cross-stitch, and sew. She cross-stitched amazing Christmas stockings for the entire family that we still use today. She also sewed many costumes for my little brother. Grammy had a heart of gold and was very generous in giving love to others.

 

Grammy’s side of the family is quite familiar with dementia. While family history isn’t necessary for someone to develop Alzheimer’s, research shows those with a parent or sibling with the disease are more likely to develop it. Another grim fact: Women make up the majority of people living with Alzheimer’s.

 

According to the Alzheimer’s Association, the disease likely begins 20 or more years before actual symptoms appear. By the time symptoms occur, it’s because the disease has progressed far enough to cause significant brain damage. We all noticed Grammy’s forgetfulness for years, but it wasn’t interfering with her everyday activities, so we let her live her life. By the time I was in high school, she had avoided social settings altogether. She didn’t just forget words or retelling stories; she was living off of post-it notes. She had them plastered across her home, and the hardest one to see was the one on the fridge, reminding herself to eat.

 

Grammy moved in with my aunt, uncle, and cousins and eventually made her way to an assisted living facility. I didn’t visit her much. As an emotion avoider, it was too hard. Plus, I wanted to preserve my “good” memories of her. Alzheimer’s robbed her of many major life events. She couldn’t attend my wedding, but we went to her facility and took photos with her. I could tell she recognized me, but she didn’t know my name.

 

 

 

 

 

 

The awful part about this disease is families go through the grief process twice. There were moments of grief at the first Christmas we spent without her while she was at her facility. She was a completely different person, one that needed help doing basic tasks. To me, it felt like she had died.

 

Grammy got to meet one of my children. I was hesitant about it, but I’m glad we decided to take Ruby to see her. I wish she could have met the “real” Grammy, but the smile that appeared on Grammy’s face when she touched her for the first time made it all worth it. Grammy passed away while I was pregnant with my son.

 

 

I felt honored to give a eulogy for my grandmother. I looked directly at one of my cousins and told him some of my favorite memories that he missed out on because of her disease. I also reminded him that she loved the four of us more than words and that was our greatest gift. It was incredibly hard to grieve her again as her body and soul left us.

 

Many years ago, I started keeping notes on my phone of memories of Grammy. I knew it might get harder to remember them as time went on and the disease progressed. I’m so glad I did. Those notes bring me so much joy at times I need it. The thing is, we don’t need a diagnosis or event to start cherishing the memories we have. Start jotting the notes down now for your loved ones.

 

November is National Alzheimer’s Disease Awareness Month. It’s also National Family Caregivers Month. More than 5 million Americans are living with Alzheimer’s. One in 10 people age 65 or older has Alzheimer’s. My heart is with all those caring for someone with Alzheimer’s. For more information about Alzheimer’s, research, support, and how to help find a cure, visit the Alzheimer’s Association.

Previous article2020 St. Louis Mom Local Gift Guide
Next articleSurvivor of Suicide
Avatar
Courtney is a tiny human tamer, spouse, advocate, ambassador, and storyteller. And, after years of therapy, she's also unapologetically herself. Courtney is a journalist-turned-marketer spending daytime hour as a Director of Marketing and Public Relations. When the clock strikes 5 pm, the caffeine turns to wine, and the supermom cape comes out. Courtney and her husband, Kyle, are parents to Ruby (born March 2016) and Miles (born April 2018). After a life-changing battle with Postpartum Depression, Courtney found her passion for advocacy work. As an official ambassador for 2020 Mom, she brings awareness and fights for change in the maternal mental health field. As a Kansas City native and University of Kansas alum living in enemy territory, Courtney can regularly be found in KU Jayhawks or Kansas City Chiefs or Royals gear. Her recent accomplishments include earning a master's degree in Strategic Communication from Maryville University in 2019, joining the St. Louis Mom's Blog contributing team, and using humor and self-deprecation to get through most of life's crap, especially, uncomfortable situations.

LEAVE A REPLY

Please enter your comment!
Please enter your name here