My sweet Mother was diagnosed with Frontotemporal Dementia 5 years ago... on Mother’s Day weekend we were told of this news.
We are broken & devastated while we experience her rapid decline. I have never spoken about this publicly as I did not want to draw unwanted attention towards her or the others involved in her care. My mom was a very private person and she would not want everyone to know. However, at this time she is not aware of her present surroundings and is unable to even read most words.
I’m disgusted by this disease and what it has taken from my sweet Mother and everyone who loves her. Many of her relationships were comprised and some were lost because of this disease. My Mom was unrecognizable in her actions, words & behaviors. None of us knew what was happening, we just knew something horrible was happening. Something we couldn’t recover from. Something that took her and her beautiful spirit away. She was no longer the mother who raised, nurtured and loved me. The pain and heartbreak I have experienced through this has been unbearable.
The year my son started college was the year my sweet mother was diagnosed. Next thing I knew we were experiencing a type of “Benjamin Button” scenario. “Mama” (side story; when my son was learning to speak, he couldn’t say “Grandma” as she wanted to be called, it came out “Mama”, so that’s what she’s been for the last 23yrs.) started acting childlike in many ways. It was so cute and often hilarious, as children tend to be. It was also very confusing as she was not childlike in body or strength! Her strength is unbelievable, but that’s a story for another time. Haha.
Our roles have reversed and I became the “Mother” in many ways for her, even though she made it very clear that was NOT how it should be, haha. In five years time she is unrecognizable in body, mind & spirit. We continue to struggle through the grief daily. This disease has robbed us all of her sweet tender hearted intentions as she struggles with this disease.
This disease has taken a Mother, a daughter, a grandmother, a wife, a sister, an aunt, a cousin, a friend, etc. Those that know or knew my Mother know exactly what I’m talking about. Each of us is broken in our own way. We try our best to remain strong for her as we have no idea the struggle she is going through herself.
One thing that stays with her that she holds onto so tightly is her Jesus. Notice the shirt she’s wearing in the photo. Anything Jesus is her favorite thing. I have bought her every Jesus shirt that I’ve been able to find. She wears them with pride. She will wear nothing else. When Covid came she would not wear a mask, so I found her a handkerchief that said “I love Jesus”. I thought, “well, she will definitely wear this!” Haha. She does indeed wear that handkerchief, but not on her face, haha. She tucks it into her “Jesus T-shirt” and off she goes. Haha.
Her days now are stuck on a constant loop, I cannot imagine the frustration this must bring her! Then the frustration of those who care for her. It’s intense. Answering the same questions ALL DAY over and over again as she understands the answers less and less!? The words aren’t understood... she’s uncertain, anxious, confused, but she is still here with us. Learning how to communicate with her is one of the many struggles...
I cry each and every day for my sweet Mother, hoping she will return to us, but, alas, she slips further away. Please send your thoughts, prayers, positivity, personal experiences, etc. We need them all. Also, if you have anything that says Jesus please send it to me in a picture via text or email and I will share it with her. I’ll do anything to see her smile.
If I can bring awareness to even one person or family it will be worth it to me to share my struggle. If your loved one starts acting different please take a moment to think about what else might be going on... There are over 50 types of Alzheimer’s/Dementia. Please join me if you can in my fight against this devastating disease! Thank you.
We love you, Mama. Always and forever.
We have raised