Patient Spotlight:  Keeping an Active and Enriching Life Through Volunteering

As a “graduate” of the HABIT program, Dr. Chandler asked me to share how I balance my caregiving for my husband and my volunteering in the community.

My volunteering started many years ago during my IBM career.  IBM rewards retirees and employees for volunteering with matching financial grants, community grants and financial donations.  Living in Orlando, my first true volunteer experience back in the 1990’s was at Walt Disney World. It helped me create not only a WDW Grandma Job, but also taught me how to volunteer OUTSIDE of my comfort zone.  I learned that I enjoyed volunteering challenges that made me think, learn and change.

Change has been a constant companion in my life. Experiencing family members with epilepsy, traumatic brain injury, dementia and now MCI are reminders of the fragility of life and the gifts we have been given as humans! How can I fully live with the gifts of life and the challenges?

Steve was diagnosed with MCI in 2014. As with any new health issue, my starting point with MCI and Steve was denial.  Preparing to see my friend, companion and husband, a brilliant Mensan,slowly lose his rational engineering edge is one thing I must remind myself every day of our lives. There are days where I miss what he was, but I am grateful for what he teaches me every day.  Steve respects my independence.  My brain and personality need stimulation, change, and a social dynamic with which he is not always comfortable.

Throughout my life I have juggled family, education, career, social needs and volunteering. I volunteered in areas of my expertise from my IBM days:  technical projects involving public/private sector, International, Federal, State and local government.  I was very active with the League of Women Voters (not for women only) in Orange County and Florida.  I have served on many boards of directors of corporations and ultimately my activism with the League progressed to many leadership projects.  After Steve was diagnosed, I had to face the fact, that I could not actively work and volunteer at the same level.

Changing my role with the LWV to an active member, but no longer an intense leader, was my first change after his diagnosis.  I was also volunteering in surgery at Nemours Children’s Hospital and Treasurer of my national sorority alumnae association in Central Florida.  Gradually, I divested of all my volunteering except for Nemours.  Working in surgery at Nemours was completely outside of my comfort zone.  I am not a natural caregiver, just ask my kids!    I knew that after Steve’s diagnosis, I needed to strengthen those caregiver skills. I also knew I had to actively find a way to support change in the area of brain research.

Throughout our MCI journey, and my previous experience with epilepsy and TBI,  I have sought out innovative clinical trials and research projects to see if we could slow down, stabilize or participate in clinical trials that might help others if not ourselves. As a long-time patient at Mayo, I knew that this was a place to reach out and find something new.  Mayo had helped us in the past with various surgeries and issues and driving back and forth from Orlando to Jacksonville had just become part of our lives.  It was through our visits with the neurology clinical research team, Dr. Graff-Radford that we learned of HABIT.

When we made the Orlando to Jacksonville move in 2019, we continued to find a way to balance the MCI process, family, my work and volunteering. I preface all my volunteering with organizations that there might be a last-minute change in my schedule because our life can be very predictable, and then BAM, it’s not.

I am still an active member of the League of Women Voters Jacksonville First Coast, my sorority here in the Northeast Florida, and my church, St. Paul’s By The Sea. I volunteer at Mayo Surgery as a substitute, the incredible Jacksonville Symphony (AM coffee concerts are wonderful) and now the HABIT program, especially during the YOGA sessions😊.

Believe it or not, I have reduced my volunteering as I observe Steve’s slow mental and gradual physical decline. I restrict my volunteering and activities to the morning time frame because as an early bird married to a night owl, I can frequently volunteer in the mornings and be home before Steve has even awakened. Yes, this is a non-traditional way of living, but it works for us.

Steve and I review our calendars daily, including where I will be volunteering, for the next 24 hours. We verify what we will be doing independently and together.  That independence for Steve is critical for his happiness. We are prepared to not be independent, and realize that should something happen to me, life will change dramatically for us both. HABIT and the support groups taught us that to be prepared, but acknowledge that we are not ready yet for the next stage of our journey.

Volunteering is an important part of my life.  I bring an external world home to Steve that provides conversation and creation of new memories! Through my volunteering I learn how to care for others and learn. When I come home we care for each other! When things get a little chaotic, we remind each other that there are things in life we cannot change.  Together, we must face, accept and adjust.  Until something changes, and we know it will, Steve and my journey will be living life as fully as possible.