Remembering Mr. B.

On July 15th, 2025 Brad Barnes peacefully “slipped away” from this earth to his heavenly home.  He has been a part of our Hope & A Future Family of Friends since October 2016.  Our grief has been palpable. We share a long history together. But more importantly we share love for Brad and his family.

I met Brad’s parents in 2005 after a friend of theirs moved into our first Adult Family Home on Branch Street in Middleton.  I took their friend to senior luncheons at Blackhawk Church. Their friend, Ruth Scheel was part of a pilot project we worked on with state government. My family’s home became the first Adult Family Home serving people of advanced age in the state of Wisconsin. Ruth explained to Brad’s parents how she now lived in a family home instead of an institution.  Brad’s parents were very interested in this. They explained to me that they had a son with Down Syndrome that would need continued care when they were gone and they thought an Adult Family Home could be a great option for them.  I was in the midst of getting Hope & A Future set up as a non-profit business and we talked about my intergenerational vision.  We prayed together before leaving that day and life moved on.

Nine years after beginning work on Hope & A Future’s business plan, we finally found a perfect spot and enough support to begin the first phase of our intergenerational neighborhood vision.  Another friend of Brad’s parents moved their Mother to Hope & A Future and they all began talking.  By the time I reconnected with the Barnes family, Brad’s Father had passed away and Brad’s Mother was having significant  health problems.  One day, Brad’s sister came to see what we were doing at Hope & A Future.  At the time there was not a sense of immediate need for Brad or his Mother.  We had finished our accessible addition and were working to complete a staff suit and guest room for family and friends to use above our new addition.  This was being done with donations and lots of volunteer support.  Brad’s family decided to give us enough money to finish that project, because they saw what we were doing as a loving project that was different than what was available anywhere else.  They loved the idea of providing a real home for people needing care where staff live with them.

Years later, Brad’s Mother began having more serious health problems and she went on our waiting list.  When she moved in, there was much concern about where Brad should live. His siblings all lived out of state and Brad wanted to stay in Madison where his friends were. He was very involved with the Wisconsin Special Olympics and Doin’ R Thing.  He was involved in swimming, bowling and Bocci Ball and went to monthly dances with themes and costumes.  Brad was a great swimmer, bowler and bocci ball player. And he was an amazing dancer who loved music, musicals and costumes! Brad’s bowling team was made up of his dearest friends who hugged with joy and excitement every time they got together!  Their joy was infectious and a blessing to be around.  

Rather suddenly it became apparent that we would have a room available at Hope & A Future right across the hall from Brad’s Mother. I called the state and told them that although Brad was not quite a person of advanced age, he was older for a person with Down Syndrome and his Mother lived in our facility.  Brad had never lived anywhere else but with his parents and now he wanted to stay in Madison. If they would let us move him in now, he would have time to get to know all of us and we could become supportive friends by the time he would be grieving the loss of his Mother. State officials rather quickly gave us permission to do this.  I was told I was being given the first dual license because they agreed with my thinking.  The license came with cautions aimed at everyone’s safety and happiness.  

When Brad’s sister Becky told Brad that he could move in he exclaimed that he had “Won the Jackpot”.  She told him to pack his things and a friend would bring him over. She would be able to help move more of his belongings when she got to town. I helped him unpack.  He had brought a lot of amazing costumes, his bowling bag and a small Christmas Tree with ornaments.  I called his sister and said he would likely need a change of clothes!  She laughed and said she was not surprised by what he packed–his most important belongings.

We worked with his family and his wonderful physician Dr. Schwab on a number of health issues that needed attention. There were lots of fun stories as we got to know each other and overcame a variety of issues. Brad had skin conditions that benefited from frequent showers but he did not care to have frequent showers. He started coming out of the bathroom with soaked towels, and dry unclean hair that he said dried fast.  We found our way to an agreeable approach and a sometimes slightly annoyed Brad. As he started to feel better, he was more agreeable to the changes we started. We did have to put desserts out of reach for the night and come to a reckoning on serving sizes and food groups. He agreed to things like eating bananas as long as he could dip them in mustard.  And he loved exercise like swimming laps–as long as I let him stay at least a few inches ahead of me.  If I got ahead of him, we were done.  He was a competitor.  He could bowl far better than any of us.  And if he was having arthritic issues with his elbow or shoulder, he could do just as well with either arm!  We are grateful to have had the privilege of getting to know Brad’s friends and the many wonderful people involved in Brad’s life. Seeing the joy involved in the Doin’ R Thing dances and dropping him off for bowling and bocci ball practice was a wonder.  We are so grateful to the people that made these events happen.  These opportunities provided friendship, joy, challenge, accomplishment and discipline in the lives of participants and their caregivers. They were not just activities, they created meaningful support and community for all of us.

By the time Brad’s Mother was nearing the end of her life, we were a close family of friends.  Brad was the house hugger.  If he noticed someone was having a hard day, he would say “it looks like someone needs a hug!” and proceed to give you a long hug that made a person come away with a smile and laugh.  My daughter, Ruth, later read that it takes six seconds for the release of hormones that make us feel better from a hug.  She started counting how many seconds Brad’s hugs lasted and they all lasted at least six seconds.  He was a professional hugger and earlier in Brad’s life, his family put together a book called “Do you need a hug today?”  Brad was also our house mailman.  He walked out daily to pick up the mail and bring it back in his mailbag.  He also collected eggs from the chicken coop and  introduced the performers at our monthly house concerts.  He loved music so much that he was often crying by the end of the introduction.  He would often say, “Here come the waterworks!” and then try to squeak out the name of the band. He loved to dance and sing.  He was an amazing dancer and he knew all of the words to most popular songs from the 70s and 80s.  He was a true monotone but did not know it.  He sang with the right rhythm to everything.  If he didn’t have the rhythm right he would say he was out of tune.  Brad spent many hours exercising on our Nu Step and singing with an IPad. Shortly before Brand’s Mother died, I told her that I hoped she wasn’t worried about Brad, because we planned to care for and love him.  She said, “I’m not worried. I know you will. And just watch, he will take care of you too.” And he did.  With hugs on hard days and morning greetings of “Somebody is looking maaaarvelous today!” There are so many Bradism’s that we all love and many we have acquired!  “Somebody needs to get with the program!” “I did not know that. Until now!” Always followed with a laugh.  

His love for Leon was epic.  He considered himself a big brother.  When Leon was active enough to spread toys all over the floor, Brad would pick them up. When this happened multiple times a day he would mutter, “It is starting to feel like a broken record around here!”  They played, talked and laughed. Their brotherly love is treasured in our hearts and minds.

Then came dementia.  And we grieved as we supported him and each other through it.  Days before Brad passed, I asked him if he was going to slip away.  He smiled at me, nodded and said yes. He was a big presence in our lives and we are fortunate to have shared life with him.  My grief has been big–even though I know it was his time and believe he is in a far better place. I am thankful that his Father said no to the doctors when Brad was born and they suggested he be sent to an institution. I am thankful Brad was so well loved by his family and friends.  And I am thankful to have been loved by Brad. All of our lives are better for it.  Thankfully, relationships live on in our hearts.

Please feel welcome to join us at the celebration of Brad’s life on August 31st at 1PM.  There will be a short program at 2 PM.  Until then, give somebody a hug!