Framing the Caregiver Journey!

My Mom Doris would often say “that photo needs a frame” about the thousands of photos I’d show her from my many travels or of our fun adventures with family and friends. I inherited my photography hobby from Mom who even did a photography project of developing her own photos in her senior year of high school in 1947. When Mom was diagnosed with dementia in 2006, I began writing down and photographing almost everything because I wanted to save (and in many cases, savor) all the steps along the journey.

Sixteen years is a long time, but I believed that each phase of our journey should be framed in some way, shape or form. Some of the photos I loved of me and Mom I did put in a frame, but for other phases, especially when there was a stressful event, I would build a LEGO model to represent it since LEGO building was our favorite activity. It was incredibly helpful not only to build the event itself, but I’d also build strategies of how to handle the situation we were facing. Using that process of building events and strategies not only helped me and mom lessen our stress it also brought us lots of joy!

When Mom died on January 31, 2022, I began searching for some of the best photos which characterized the different phases of our journey. One of the photos of significance was Mom standing in front of the group home called Mamie’s Loving Care on the day I moved her from her non-assisted living apartment. The photo was significant because it marked the end of her ability to live alone. I wanted to frame that as a milestone to ensure I did not to let Mom’s decline lessen my resiliency or perseverance in our fight against this disease, it simply became a reminder to pour more love and joy into Mom.

I was already using LEGO Serious Play with family and professional caregivers and I began wondering what types of situations and events they would “frame” along their journeys. I also researched how resiliency and perseverance impact caregiver’s journeys. I started developing a program called “Frame Your Journey” in memory of Mom that would focus on Joy, Resilience and Perseverance and would conclude with a LEGO building exercise where the caregiver would build a segment of their journey onto a LEGO plate that would serve as the frame. I also wanted to encourage caregivers to continue to build segments along their journey by taking the previous build apart and building the new segment. For me, taking a LEGO model apart and building something else has always felt like therapy to me. It not only was a calming activity, it also allowed me to plan and prepare to be a better caregiver.

A few months ago my partner at Johns Hopkins asked me to give a presentation that recognized the resilience and perseverance of caregivers in their ElderPlus and Called to Care programs. I happily agreed to do that, but also suggested that to make the presentation interactive I wanted to end the event with a LEGO building exercise where participants would build a model that “Framed Their Journey” from whatever portion of the journey they wanted to focus on.

This week on Thursday February 9th, five people gathered online and 15 people arrived in-person at Hopkins Bayview in Baltimore to Frame Their Journey. I was so excited because I’d been preparing for this day for weeks with my best friend Kris Lopez who worked tirelessly with me to assemble the kits and pack the little containers of assorted bricks. Each participant received a 10 x 10 inch LEGO plate, and those attending in person got to choose the color of their plate. Each in-person participant also received my Inspiration Kit with 47 LEGO pieces, a small container filled with bricks and there was a tub of  extra bricks on their tables to use to “frame their journey”. Those who registered to attend online were mailed a LEGO plate and my Inspiration kit in advance of the program.

After all my research, planning and preparation I had hoped that everyone would have a good time and feel supported. The day was extra special because Kris was going to be with me and would get to experience one of my presentations AND LEGO building for the very first time. She’s put together hundreds of my kits at this point but had never actually done any LEGO building!

Prior to the start of the event there were a few technical glitches in the conference room, but we didn’t let anything slow us down. We made quick adjustments and pressed on and the event was better than I could ever have imagined. Everyone said they loved the lecture portion of the event but then it was time for the interactive part of the session! For many in the room sitting in front of a LEGO plate in attempt to build something significant in their caregiving journey (good or bad) was a challenging task, BUT one that they embraced with great enthusiasm! During the 15 minutes they were given to build, participants looked at each other’s pieces, rummaged through the buckets of bricks on each table to find just that right piece and they traded pieces with each other too! Listening to those who were online working on their builds was really fun too and there was lots of laughter!!

When I announced that the building time had expired, the online participants were first to share their LEGO frames and the story of their journey. We all clapped and cheered as the stories were truly powerful. As those in the conference room began to share they were asked to stand near the camera to ensure those online would be able to see each Frame that was being shared! I’ve experienced great emotion in the rooms of my LEGO Serious Play sessions which typically has three rounds of building, but the Framing Your Journey session only has one building exercise about a significant part of someone’s life. There was lots of laughter and lots of tears too! The journeys that were framed included a young person who had cared for a sibling, caring for more than one parent or multiple relatives at the same time, those who had lost parents or a child and were finding their way without them, those who recognized the importance of meeting their loved one where they are in their dementia journey, those who built activities they do with their loved ones and even friends who were helping their friends care for family members. I loved the bricks they used – doors and windows to represent new opportunities and have doors opened to them to receive dementia education, flowers to represent love, growth and good times! They built bridges to illustrate how many people it takes to provide care for a loved one and the bridges they have to cross to get the services they need. Lots of people used the slanted LEGO pieces to represent the ups and downs of caregiving. Everyone clapped and supported each other as each participant went back to their seats. There were quite a few hugs exchanged too!

Almost everyone who participated mentioned how important the ElderPlus program was to them and those they care for, reinforcing for me in a huge way the importance of Support Groups and Programs and the role these programs play in allowing caregivers to persevere and find joy even under extremely challenging circumstances! Before the event was even half over I knew I was going to offer this program again! By yesterday afternoon I had already received requests for additional sessions!

The greatest joy of the day for me was having Kris with me on the ride to Baltimore, and to help with the room set up and for her to see what all her hard work of assembling LEGO kits actually results in! It was amazing listening to Kris explain her build since she’s the person in the room I know the best and I actually experienced with her much of the journey she shared!

If each of us had to Frame the Journey of our lives, I wonder what we’d each build. I’m so proud of this program because it’s one I built to honor my Mom and her love of family memories and photo frames! I unfortunately don’t have many pictures Mom took as she threw away thousands of photos as her dementia progressed because she no longer remembered who the people in the photos were, including me. Because of that experience I always encourage families to put treasured photos in a place where they will be safe so memories can be preserved. Even though I no longer have those photos, I can still build the important phases of our journey from my memory. So many people have supported me along my journey and as I continue on I will likely build a model that “frames” all of you and the love and support you’ve given me and the memories we’ve made along this journey through life! Sending you much love as you each continue along your journeys as well!