Sharing the journey: How one caregiver is lifting others through loss 

Linda and Paul Rode had been enjoying a vacation in Sedona, Arizona, when Paul began seeing things that weren’t there. Frightened by what was happening, the couple cut their trip short and returned home. After several tests and meetings with doctors, the couple learned that Paul had Lewy body dementia and Parkinson’s disease.   

Determined to give Paul the best quality of life possible, Linda began arming herself with knowledge. She learned about Duet’s programs for caregivers and participated in Finding Meaning and Hope, a 10-week discussion series that helps lower stress and build resilience. 

Finding Meaning and Hope is based on the work of Dr. Pauline Boss, PhD, a family therapist who coined the term “ambiguous loss.” This complex grief takes many forms, but for dementia caregivers it manifests in the difficult emotions that arise when the person you love is still physically present but is becoming psychologically absent. Each session in the series offers practical tools and opportunities to shift perspectives.   

Finding Meaning and Hope “was a game-changer for me,” Linda said. She had read many books about Paul’s condition, “but none made me feel truly understood the way Pauline Boss’s book and Duet’s program did.  When I read about and began to understand the term ‘ambiguous loss’ I felt like I had found home, found someone who truly understood what caregivers of those living with dementia experience.” 

Linda and Paul had decided to share their story, to help people struggling with a similar diagnosis cope and change how society views dementia. Linda became a facilitator for two Duet programs — Finding Meaning and Hope and The Next Chapter in My Life, for people who are no longer immersed in daily caregiving duties.  

“Finding Meaning and Hope was so powerful in teaching me how to cope with the ongoing loss and grief, learn how to build resilience and find hope along the way, I just knew I wanted to become a facilitator,” Linda says. “I feel honored and blessed to have an opportunity to meet people in various phases of their dementia caregiver journey, and through this program I am able to support them.” 

Paul currently lives in a memory care facility; after a sudden and steep decline this year, his care team now includes hospice. Though she remains a caregiver, Linda has also completed Duet’s Next Chapter in My Life workshop series, which helped her come to terms with what life might look like beyond caregiving. She is a facilitator for that as well.  

The Next Chapter in My Life was created by Dr. Robert Waldinger, M.D., Professor of Psychiatry at Harvard Medical School, director of the Harvard Study of Adult Development, and author of The Good Life.  It is based on studies from the Lifespan Research Foundation, the focus of which is a multi-generational study on how to live a happier, healthier, and longer life. Next Chapter offers insights from the research and creates an environment to reflect, talk with others, and begin to shape the next chapter of your life. Duet is currently the only organization offering this program to family caregivers. 

“Caregivers who have lost their loved ones to dementia are unique in that they have been grieving for a long time,” Linda says. “By the time their loved one dies, they are exhausted and, quite often, have no more tears to shed.  That said, they are still fragile, hurting and grieving their final good-byes as anyone else does. As a facilitator, I believe my role is that of a guide who presents information from the research and supports and encourages participants to find their own truth and path.” 

Linda’s advice for caregivers: 

• Meet your loved one where they are.  They are doing the best they can.  Arguing and continually trying to bring them back to your reality is a fruitless effort.  It’s not about being right, it’s about being kind. 

• Offer yourself grace and love when you don’t get it right.  You will lose your patience, you will feel frustrated.  It’s OK.  You’re human.  You’re doing the best you can, too.   

• Each and every day, find a way to appreciate and love your person with dementia.  Relationships are never perfect and with a disease that has no cure, it’s much better to cherish what Pauline Boss calls ‘the good enough relationship’ than hope for things to return to the way they used to be. 

• Last, but certainly not least, enroll in Finding Meaning and Hope.  It will be your guiding light through every phase of your journey. 

What began as a personal battle with dementia has evolved into a powerful mission to support others. Through programs like Finding Meaning and Hope and Next Chapter in My Life, Linda has found healing, and the strength to help others do the same.  

About Sandra Pedicini

Sandra Pedicini is a Duet volunteer caregiver mentor and writes about aging and caregiving issues. She is a former newspaper journalist and works as a corporate communications manager.