Welcome to our CaringBridge website for Tom Lee. Tom has touched so many people with his humor, selflessness, compassion and faith. We are using this site to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. ******************************************************************************************************************************************************* Our journey started some years back, but really turned us on our current path 2 years ago. Jo was set to retire January 2019 and then Tom was diagnosed with Lewy Body Dementia. It is a cruel disease that causes paranoia, hallucinations, anxiety, agitation, memory loss and changes in motor skills. Think Parkinson's meshed with Alzheimer's, and throw in hallucinations and paranoia. For a year, Tom was able to remain at home and Jo started her retirement as a caregiver. There was lots of learning and reading and support groups, for both the patient and family. Trying to understand this new cog in the wheel was a challenge, and the biggest thing we all learned was it is unpredictable, and in Tom's case, aggressive and fast moving.
About a year ago, and a year after diagnosis, Tom's condition had progressed to the point that he needed more care than could be given at home and he moved into the Memory Care facility at Cherrywood Pointe in Forest Lake, MN. He remained in the community he loved and was only a couple of miles from home. The family was able to visit him often, for about a month. Then COVID hit and everything changed again.
Like many Long Term Care facilities around the country, Cherrywood was shut down to outside visitors in the Spring of 2020. We were able to still see Tom through chats through his lower level room window and cell phone, as well as video chats often on an Alexa Show that Jo has set up in his room, but it really wasn't the same. We are forever grateful to the staff at Cherrywood for the care they provided Tom as we navigated these strange times together. They were amazing. As the months went on, the Lewy Body Dementia took its toll and we could see rapid changes in Tom's behavior. He wasn't able to focus well, the hallucinations were constant and his reality changed. We could also see the change in motor skills and his recognition of how things were to work together to do things. His brain just wasn't connecting the dots as they should.
At the beginning of December 2020, Tom was hospitalized as his condition had deteriorated and escalated dramatically. His doctors worked to understand his medication and needs. He wasn't able to speak clearly, or make sense of any conversation, was very aggressive due to his hallucinations, and at this point was unable to feed himself and confined to his bed. Our family had little, to no contact with Tom, as we weren't permitted to visit in the hospital, and talking with him on the phone was extremely difficult. After talking with his care team, we were told that Tom was in the final stage of Lewy Body Dementia and he was in end of life care. Jo was able to visit with him twice, and on the second visit, Christmas Day 2020, our family decided that there wasn't anything the hospital was doing for him that we couldn't do at home to help make his transition as comfortable as possible. For us, the most important thing was spending Tom's remaining days together as a family.
So as of today, New Year's Day 2021, Tom has been at home on Hospice care for the last week. Wife Jo, and Daughters Dani and Jess, are by his side and cherishing the life we've had together and all the things he loved - his family, going to any sporting event of his grandsons, a round of golf, telling a joke that only he got the punchline, traveling and lending a helping hand, just to name a few. Tom has enjoyed visits from his grandsons, sisters and pastor, as well as other family and friends. We have had wonderful nurses and aides to help keep him comfortable. We are so blessed to have many people reach out and share their thoughts and prayers with us. We encourage you to share your special memories of Tom on this page. We would love to see how he has touched so many other people's lives. Thank you also for respecting our time together as we say our goodbyes to an amazing man.
We will do our best to update this site daily with how Tom is doing, as well as service arrangements when the time comes.
**It was very important to Tom to see more research and resources put toward understanding Lewy Body Dementia better. One of his last wishes was to give himself to medical research to help others suffering from this disease. Tom's brain will be donated to The Brain Support Network, posthumously. We encourage anyone to visit their website (www.brainsupportnetwork.org) and donate on behalf of Tom, if your heart leads you to do so.
Thank you in advance and much love from the family of Tom Lee.
