Tom’s Story

Site created on August 19, 2019

Thank you for visiting!

We (Tom's daughters) set up this site to keep people updated on how he's doing and what he's up to.

In October 2018, Tom was diagnosed with Frontotemporal Dementia and Primary Progressive Aphasia. Currently, what this means for him is that he has lost a significant amount of his speech, which makes it difficult for him to communicate. His ability to read and write has also been affected.

Here's a little background on how we got here.

Tom moved to sunny Texas in 2012. In August 2016, he was back in Minnesota for a visit. Almost right away, we noticed that he wasn't as talkative as usual, and when he did talk, there was some slurring in his speech. We took him to the hospital, fearful that he was having or had had a stroke. They conducted an CT scan and an MRI, but nothing seemed out of the ordinary. He was told to follow up with a neurologist when he got back to Texas.

He did follow up and had many tests run, including a memory test which he passed with flying colors at the time. The neurologist concluded it was possible he had some mini strokes, but it was still unclear. At that time, the neurologist diagnosed him with Mild Cognative Impairment, which is connected with normal signs of aging (e.g. senior moments) but also a precursor of dementia or Alzheimer's. We were told that it could get better, worse, or stay the same.

Unfortunately, over the next two years his speech continued to decline. In addition, in August 2018 he got a severe foot infection, setting him back further.  In October 2018, he made the move home to Minnesota.

He misses Texas very, very much. But he finds comfort being near family and living back in Richfield where he spent more than 30 years raising us kids. We are so fortunate to be able to visit him and take him out daily -- he's been especially loving the massive amounts of time he gets to spend with his grandkids: Grant (8) and Cora (6).

While he faces struggles with communication, the good news is that he still very much "Tom." He laughs at all our dumb or sarcastic jokes. He's quick to quip "Horn works, try your lights" if you blow your nose. He remembers every North Minneapolis address of his childhood friends. He insists on getting birthday cards for family members weeks before their big days. He understands everything and is still independent in many ways.

When people hear this story, they often ask "What can I do?" 

So, please feel free to leave a note, story, or question for us to read to him. He loves hearing from friends! If you'd like to visit him, he would absolutely love to see you and we'd be happy to help make that happen. He's all smiles when he sees old friends.

Finally, if you're curious, you can read more about his condition here: https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/frontotemporal-dementia

Also, this past spring, 60 minutes did a special on his disease, which you can read and watch here: https://www.cbsnews.com/news/frontotemporal-dementia-devastating-prevalent-and-little-understood-60-minutes-2019-05-05/

Again, thank you so much for visiting. We're so thankful that Pops has so many people who care about him.

~ Sarah & Caitlin

Newest Update

Thank you and next steps

Journal entry by Caitlin Burgess Williams —

Hello, everyone.

First of all, thank you. 🙌 Thank you for all the words of encouragement, prayers, good vibes and compassion during this incredibly difficult time. Today, Dad's ashes came home to rest. 

It still doesn't seem real, but we're coming to terms with it more each day. Below are the most difficult words we've ever had to write -- his obituary.

***

Thomas Michael Burgess passed away Oct. 27, 2020 at his home in Richfield, Minn. His loving daughters were by his side. He was 74 years old.  

Our dad, Tom, was an absolute treasure. His smile was infectious. His wit could disarm and charm even the hardest of hearts. His storytelling was legendary. And his warmth made you feel seen, heard and loved.

Tom was a proud “northside boy.” Born on April 4, 1946, at St. Barnabas Hospital in Minneapolis to Patrick and Stella Burgess, he grew up in a small duplex on the 1800 block of Bryant Avenue North. In 1964, Tom graduated from Minneapolis North High School and went on to attend the University of Minnesota Twin Cities where he studied philosophy and political science. 

While he’s most known for his long career as a commercial real estate broker, Tom had a colorful resume that included taxi driver, teacher and tutor, special event planner, political aide, salesman, and the list goes on. However, there was no job he loved more than being a dad.

It feels impossible to adequately capture the kind of father he was. He coached little league. He painted our fingers and toes. He volunteered as a “Room Mom” in our elementary school classrooms. He helped us choose our first lipsticks. He adored us — and he made sure we knew it. 

When doubt, anxiety or feelings of failure crept in, he wrapped us in reassuring words, a warm hug and unconditional love. In times of joy, accomplishment or new opportunities, he beamed with pride and provided endless encouragement. And quite incredibly, his fatherly love and adoration wasn’t limited by blood. He was always “Pops” to those who we’d chosen to be our closest friends.

Despite being burdened with frontotemporal lobe dementia (FTD) and primary progressive aphasia (PPA) in the final years of his life, Tom’s warm and captivating smile and sense of humor never faded. And of course, he captured the hearts of every one of the incredible aides who helped care for him.

Losing him so soon is excruciating. But we’re so thankful his disease is gone and he’s at rest. We’re truly blessed we got to keep him as long as we did.

Tom is survived by his daughters Sarah Schweitzer (Rob) and Caitlin Williams (Derrick); grandchildren Grant and Cora Schweitzer; former life partners Mary Burgess and Judy Cassetti; and sisters Rosemary Sullivan (Fred Fiterman) and Susan Olson (Bruce).

A private family memorial will be held now, and a public celebration of life will occur at a later date when we can safely gather again.

***

Once it's safer for us to come together, we plan to update this page with information on a celebration of life. In the meantime, please leave your favorite memory of Dad. Your stories will bring us comfort -- and probably laughter, too. ❤️

Read More of the journal titled "Thank you and next steps"
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