Even Thorns Have Roses

”The disease grew from his mind; an ugly thing which was once beautiful.”
~Bradley

“We tried to stay positive but there was very little positive that we could find about any of this.”
~Peggy

We Listened to Albinoni

“Tony had a voracious love for Classical Music and Twenty’s Jazz. His collection was vast. When it became clear that the only outside stimulus that he enjoyed was music, we played it constantly. Bradley would introduce contemporary jazz and I would pull out some real oldies. For the last days we played Tomaso Albinoni constantly. Tony introduced him to me, and he was a favorite of both of ours.”
~Peggy

This Disease Sucks!

Visiting Another Dimension

Even clear sighted Tony had trouble navigating the contours of his mind. They kept shifting and, as it became harder for him to see, they became less of a path forward that made sense. ~Bradley

I think that dementia must be like a bad dream. Every once in a while the victim wakes up and is aware of the surroundings but the rest of the time there is no reality, no sense of place, nothing to anchor thoughts to. ~Peggy

Blue Rain 

“Tony’s brain was restless. It was worse for him because he could ‘feel’ the slide as the PCA* symptoms worsened.”
~Bradley

“Tony had conversations with the Neurologist about whether he would be aware of his decline. She told him he wouldn’t. He began calling her a liar because he did know. ”
~ Peggy
*Posterior Cortical Atrophy

Out of Time

Tony had the kind of brain that always knew what time it was. He never wore a watch … never needed to. When he was diagnosed at the Mayo Clinic, he was told that his disease was very rare and that they felt he had only six to ten years ahead of him. Eventually it became clear to me that the truth was more bleak. In the end, it was two and a half years from diagnosis to death. ~Peggy

Gray Days

“The end was less of an emotional rollercoaster because he settled into his body with a stubbornness that outlasted everyone’s expectation. As communication became more difficult, he labored to emphasize two words to me, “thank you”.”
~Bradley

The Spirit Departs

“Tony lived over a week longer than we thought. Hospice people were asking me if there was something left undone, was he waiting for someone or something? I think he was just being stubborn. When he finally passed, there was a palpable change in the room. He was there and then he wasn’t. I am grateful that I was with him when he made the transition”.
~Peggy

Red Mask of Death

“A nod to Edgar Allan Poe who wrote’ The Mask of the Red Death’. In that story, the illness struck and killed in less than thirty minutes. For Tony, it took more time. It was about five years from the first acknowledged symptoms to his final breath.”
~Peggy

Grey Tear

“Grief helps the living”
~Bradley

“Tony and I were married 47 years. We grew up together. We did everything together. I grieved his loss while he was still with me. We did it together.”
~ Peggy

Brain Deconstruction

This is about “Left and Right Brain Cacophony which Peggy saved with her precise rendering of form. Tony is stuck with all the equipment but no place to dig.”
~Bradley

“As caregivers, Bradley and I were able to observe what seemed to be the incessant advancement of heavy equipment demolishing Tony’s brain.”
~ Peggy

Come With Me

”Peggy sat with him and gave him comfort. What did he see when she spoke?”
~Bradley

“Those last weeks, he saw things that were invisible to us. I hope they were lovely.”
~ Peggy

Contemplating the Caregiver

Our nephew Bradley came to live with us in late 2017. Because of this much needed help, Tony was able to stay in his own home. Bradley was the muscle, the companion, the visual recorder and the student. Tony was the teacher and the model. For me, he was relief and respite as well as collaborator.
~Peggy

Tony was the High Priest, Bishop and Shaman of his own brand of skepticism.
~Bradley

Mental Architecture

”He really liked jazz because of the structure, even as it broke down.”
~Bradley

“Parts of his brain were intact and parts had broken down with no way to rebuild.”
~Peggy

Word Salad

“Tony’s brain turned to dirt, but slow enough that he was self aware of the decomposition.”
~Bradley

“It came to a point that Tony would make eloquent statements that sounded wonderful but made no sense. The nurses called it “word salad” because the terms came out all mixed up. ”
~ Peggy

A Prisoner of his Mind

“Tony was a prisoner in his own mind.”
~Bradley

“Tony’s mind was the most wonderful thing about him. For his brain to be the thing that turned against him and took him down is an irony that is worthy of an Edgar Allan Poe story.”
~Peggy

Moving On

“Tony was born in 1948 and died seventy years and two weeks later. I have lots of wonderful memories but I prefer to remember him like this: Introverted, curious, studious, charming, witty, clever, sharp, loving and more. There will never be anyone else quite like him.”
~Peggy