Mother’s Day is hard for me. I lost my Mom to Hippocampal Sparing Alzheimer’s Disease July 9th, 2019.
She was diagnosed at age 55, while I was in college. Once I graduated, I took on the role of co-guardian and power of attorney.
I cannot put into words the heart wrenching pain you experience when you first hand see your loved one lose their mind, soul and spirit, while their physical body is still here. I call this ambiguous grief.
My loss started the day she was diagnosed. I remember so vividly being at Regions Hospital after my mom went through extensive testing. When my Mom discovered she had “Young Early Onset Alzheimer’s Disease,” she shouted in anger, disgust and fear, “I’d rather die than live with this disease”.
I’d rather DIE than live with this disease.
My Mom was a research nurse, and a very good one. At the height of her career, where she was working in clinical trials at the U of M, this disease robbed her.
She knew EXACTLY what this disease would do to her, and her loved ones.
I can’t imagine what it must have felt like to receive the diagnosis and death sentence that day at Regions.
Over the course of the next 8 years, we moved her out of her home into assisted living, then to a memory care floor, and then ultimately a smaller group home where she could have more attention.
Alzheimer’s disease is a bitch. It is violent, agressive, discriminative and manipulative. I went though an incredible amount of emotional pain and trauma while she was living and as I grieved.
She has slapped me, she has called me a fucking bitch, she told me she hated me, over and over.
I am not sure what was worse. The violent physical and emotional aggression, or the moment when she lost her ability to speak. When I would visit her, all she would do is violently cry. I couldn’t take the emotional pain seeing her like this.
That was the beginning of the end. My mom was aging in reverse. She lost her motor skills. She forgot how to chew and swallow. She couldn’t go to the bathroom on her own.
When she no longer cried when she saw me, I knew the end was drawing near. She didn’t even notice I entered the room. She looked at me, and had no response. It was like no one was home.
Hospice is a slippery slope, and a huge thanks to Brighton Hospice for being so absolutely wonderful.
We worked with Brain Support Network to donate her brain to research. It’s something else to coordinate a hospice team to prepare my Mom’s body and head to be dissected upon death. I provided explicit instructions from Brain Support Network to Brighton Hospice team and my mother’s care team at Legacy Home Care. I never knew my event and project management skills would be used in such a practical way. The orchestration of my mother’s head being iced, my moms body being delivered to Saint Paul, the extraction of her brain taking place there, her brain being shipped to the Mayo Clinic for further research and investigation came together flawlessly.
On September 6th 2019 I received a letter from the Mayo Clinic from Dennis W. Dickson, M.D. stating the findings of my Mom’s brain. My mom had a rare form and subtype of Alzheimer’s Disease labeled, “Hippocampal Sparing Alzheimer’s Disease”.
A huge thank you to the Alzheimer’s Association, Alzheimer’s Association Young Champions – Twin Cities, Dr. Michael H. Rosenbloom at HealthPartners Neuroscience Center, and my friends who didn’t leave my side when shit hit the fan. Especially Dayna Lund, Janet Marx, Alicia Marchioni, Katie Carlson, Alexandra Rhae, Kristin Jacobsen, Kelsey Julia Schaufelberger, Ali Payton, and Robyn DeLoss Henkler. I don’t know what I would do without my amazing support network.
We’re out here to make family, not friends. Our friends are the family we get to choose. I believe we are on this Earth to love one another, learn from one another, and support each other.
This tragedy was a catalyst to my personal development journey and growth. I now consider myself an expert on grief, trauma and loss.
If you are hurting, I’d love to show you support in some way, and validate your feelings.
2020 was a shit year, and that’s being generous.
Help me make 2021 the year of love, light, and perseverance. Who’s with me?