Supporting People as the Age
Living in Michael’s World
Michael and Crystal Janis
Michael is a man I support in his 50s who has Down Syndrome. I’ve enjoyed working with him as his direct support professional for over four years. Recently, he was diagnosed with dementia.
Before Michael started showing symptoms and was diagnosed, he had many interests. Mike really valued his spirituality. He attended his family's Catholic Church for decades. The church members always spoke to him and were happy to see him there. Mike would take his wallet and pull out a dollar for the offering tray every week. He enjoyed listening to the choir and would often move his hands like he was directing them. Mike always participated in communion. He looked forward to going out to eat every Sunday after mass and getting his favorite beverage Coke with a straw. Michael was quite a jokester. He would often joke with his staff and his peers. He loved saying “April Fools” then laughing. Regardless of whether or not it was April. Going to his day program at the Employment Option Center was very important to him. He enjoyed working on many clerical jobs, including stuffing and labeling envelopes, removing staples, and folding and shredding papers. Winter and Christmas was Mike's favorite time of the year. He loved Christmas music and Christmas movies. He would love to have snow all year round. He would laugh and joke with his staff about the roads being bad and that we were going to get stuck. Mike was such a pleasure to be around. You never knew what he was going to say or do. But he certainly brought so much joy and happiness to my days.
Even before the diagnosis, I noticed small changes in Michael’s usual behavior. One of the first things I noticed was that his questions became repetitive. He often asked, “What’s next?” or “What’s after that?” which was normal for him. But instead of asking once or twice as he used to, he began asking the same question 50 or even 100 times in a row. I could see him getting upset more easily, especially if he didn’t like my answers. Sometimes, my efforts to help him only seemed to make him more confused.
He would love to have snow all year round. He would laugh and joke with his staff about the roads being bad and that we were going to get stuck.
I reported the changes I saw to his support team. Because of these and other changes, his team scheduled a visit with a neurologist. The doctor confirmed that Michael had dementia. After the diagnosis, things started to change more quickly. Michael became more demanding. He would insist on things that didn’t make sense, like asking to go “upstairs to Mikey’s room,” even though he lived in a one-story house. He would sometimes get angry or hurt himself if we tried to explain.
He began to do completely new and different things. For example, he started sliding out of bed to lie on the floor on his stomach. None of his staff had seen him do that before, not even those who had worked with him for over 20 years. Later, I spoke with his sister, and she helped us understand. When Michael was a child, he lived in a house where his bedroom was upstairs, and he used to lie on the floor just like that. It was like he was going back in time.
That’s when our team realized something important: We needed to learn to live in Michael’s world and meet him where he was. If he said he wanted to go upstairs, we would pretend to take “BIG STEPS” as if we were going up. If he wanted to lie on the floor, we made sure we had soft mats, blankets, and pillows ready. These small changes made a big difference in helping Michael calm down and be less aggressive towards others.
Our team realized something important: We needed to learn to live in Michael’s world and meet him where he was.
The changes didn’t stop there. At the beginning of the year, Michael could still walk, feed himself, use the bathroom, and do most of his daily routine. By spring, he could no longer walk. He needed a special lift just to move from one place to another. At first, he could still eat with some help, but then he stopped eating completely. His confusion came and went. Things that used to matter to him didn’t seem important anymore. He used to ask me on a daily basis about the weather, TV, or what day it was. Then one day, he just stopped asking.
Thankfully, our team felt very supported during all of this. Michael’s sister and our management team made sure we had what we needed. When I suggested that Michael might need an adjustable bed, one arrived the next day. When he needed special dishes and a food processor to make eating easier, they showed up right away. Watching Michael change was very hard. I care deeply for him. He felt like part of my family. I made it my mission to help him feel safe and happy during this time in his life.
If you care for someone going through dementia, I want you to know this: you will need patience—lots of patience. If the person is confused or believes something that isn’t true, don’t argue. Just go along with them. If they think it’s Christmas, even if it’s July, let it be Christmas. Arguing will only upset or discourage them. Try to stay calm. Be kind. Be flexible. Follow a routine but allow the person’s independence to do what they are able to do for themselves. People with dementia, like Michael, and everyone else deserve to feel safe and supported. Finally, take care of yourself. Providing support can be exhausting, especially supporting people with dementia through changes.