November 12, 2024

One of my absolutely favorite jobs was a camp Program Director.  The job was all about fun and games, engaging the campers and counselors, and creating and facilitating meaningful experiences.  I carried the skills I gained into motherhood, using my experience as a program director to create activities to keep my kids busy and learning.  Little did I know, I would need to draw on those skills again when my mom became ill with ALSP.

I come from a very active family.  We enjoy being on the move, learning new things, and making memories together.  My parents were this way, and they definitely passed this love of adventure on to me and my kids.  It was a challenging adjustment for my mom as her body and mind started failing her.  She lost her independence, and along with that she lost her ability to participate in so many activities that had filled her time and brought her, and others, happiness.  

Before ALSP, mom was a mentor with Big Brother Big Sister.  She played organ for church and accompanied the church choir on the piano.  She gave presentations at conferences for work.  She was physically active, participating in a wide variety of exercises from yoga to swimming.  She read to be part of book clubs.  She was a reliable friend, always ready to lend a helping hand, a listening ear, a shoulder to cry, or share a good laugh.  

After ALSP, she could do none of these things.  Her life was confined to the four walls of her house, sitting in her wheelchair in front of the TV.

It was important to me and to my mother that she continued to engage in life as much as she was able.  She wanted more from her life than just wasting away in front of the TV.  Despite her disabilities, we found activities that she was able to do.  It took creativity and the help of family and friends, but our determination ensured that mom was engaged and active throughout her illness.

I wish I could give a checklist of activities to set up for you all to follow.  With the variability of symptoms and available resources, there isn’t a one size fits all solution.  I am happy to share some basic “rules” of engagement that I filled when setting up activities for my mom, and Sisters’ Hope Foundation is always available for support – even brainstorming ways to actively engage your loved one.

1. Passion is energy – Take their passion and build activities around that.

Music was deeply rooted in my mom’s heart.  Even though she could no longer make music with her hands, we incorporated music into daily life.  We sang or listened to songs as often as we could  – sometimes she sang with us; other times she just listened and smiled.

We had friends come over and give her mini piano “concerts.”

At Christmas, a group of her friends brought Christmas treats and Santa hats and had a Christmas party, complete with Christmas carols.

2. Movement is life – Keep their body going.

Mom was always an active person, and even though her body no longer cooperated well, we found ways to keep her moving.  We hired a personal trainer who came by two times a week for nearly 2 years to give her a workout.  Over those two years, he modified the exercises many, many times to accommodate the disease progression.  Mom and this trained developed a friendship, and her exercise time was a highlight of her week.

We taught the caregivers how to gently stretch mom when she was no longer able to stretch her muscles herself.  With the increasing muscle rigidity, this was important for her physical health, but it also uplifted her mental health because she felt like she was doing something beneficial.

3. Play is happiness – Keep their minds working with play!

We turned every day tasks into games to keep smiles on our faces.  We played catch with socks before putting them on her feet each morning.  While driving in the car, we would say the first line of a song or a chorus to see if the other could guess the rest of the line.  We put together simple 12 piece puzzles.  We pulled out old childhood games like “Go Fish” or “Candy Land.”  We even went fishing with the “Let’ Go Fishing” game.  Playdough became a fun activity to pass the time.  Whether or not we made anything recognizable wasn’t the point; she enjoyed the tactile exercise.

4. Community is strength – Surround them with those whom they love and trust.

A huge piece of mom’s activity calendar were visits from friends and family.  We were blessed with a community that showered us, and especially mom, with friendship.  We created a free online sign up with SignUp Genius and shared the calendar far and wide.  Folks could sign up for pre-chosen dates to come for a visit and bring lunch to share with mom.  Words cannot express what a blessing this was to mom and our family during her illness.  Our community rallied and individuals reliably visited mom once a week for over two years.  My mom looked forward to these visits, and the time with her friends strengthened her spirit.

While this is not an exhaustive list of all the activities we developed to entertain mom to improve her quality of life, I hope it inspires you to think about beneficial activities for your loved one.  When wearing so many other hats and juggling so many other responsibilities, the activities piece is one of the first to fall by the wayside.  However, I also believe the extra energy is to actively engage your loved one benefits YOU, too!  Activity gives you and your loved one precious moments of connection.  Activity fills your well of memories.  Activity brings laughter and joy even on the darkest of days.  Activity brings energy, strength, happiness, and life.