My mother is 94 years old and was admitted to hospice care a month ago. Getting there was a huge life/medical milestone for her and our family involving multiple doctor visits, calls and meetings with staff from two assisted living facilities, calls to her HMO and the hospice organization, meetings with hospice staff, emails and meetings with family members, forms signed and sent, and endless scheduling. Mom ended up moving from one facility to a sister facility with a higher level of care, so I also organized packing, movers and family help within a compressed time period. It was a withering amount of logistics.
Reflecting upon this recent period, I glean three key learnings about how to navigate this transition into life’s last chapter.
- Prioritize Family Support & Self-Care
I accompanied my father through the end of his life. As an only child, trying to manage hospitalizations and his declining health while working full-time without other family nearby was barely survivable. This time my family is now living near me and we have been able to communicate regularly and easily, even holding a family meeting to get on the same page when her health declined. Family members visit Mom and help directly.
In addition, I’m now self-employed so I can flex my schedule rather than piling all of my care manager duties on top of a full-time job. This makes a huge difference. I can wade through all that needs to be done without worrying that I might collapse. I am also carving out time for self-care—spiritual support, rest, exercise and therapeutic massage—to help me sustain my energy.
- When in Doubt, Gather Around
My mom had many symptoms, including a near total loss of appetite and marked confusion, which were a challenge to navigate. We didn’t know what else to do, so we started gathering around her. Mom seemed to do better in a circle of family, so we continued to create, literally, circles that involved us sitting around her and sharing some of her favorite foods with her. Being around me, her grandchildren and her great-grandchildren helped her to stay grounded and connected to who she is.
Music is important to my mom, so we play her favorite music as she sings along, usually Andy Williams or Frank Sinatra. It’s simple and old-fashioned, she loves it, and it really seems to help her return to herself.
- Track Feelings and Reflections
At the encouragement of my family, I’ve been working on keeping track of how I’ve felt through this storm of events. When my mom was confused and asking strange questions over and over, I realized that I was mourning the loss of the Mom I knew just a few months ago. Some core part of her seemed to have slipped away, and I was just sad.
Yet in the last month she’s adjusted well to her new home and the strange questions have mostly disappeared. Miraculously, her unique ways have returned. Her appetite is much improved and we even go out to eat close-by on occasion. Her longtime interest in baseball has perked up and she is looking forward to when the new season starts. I’m perplexed yet grateful in the face of all the changes.
The family support has made me feel loved and connected, which in turn has helped me keep going as my mom’s care manager. With my dad I sometimes felt exhausted and desperate, but this time I just felt tired.
The family collaboration has made me think about this experience from a generational perspective. I have been keenly aware of the decisions I am making, and I can’t help imagining my grown children making such decisions for me at some time in the future. How will my kids and grandkids take care of my needs when I’m older? I have wondered what kind of model I am creating.
I have no idea how long my mom will live, but this journey has already been surprising and unpredictable. When I first started writing this piece I thought of the term “end of life,” but now I think the metaphor of a “last chapter” is more fitting. At 94 my mom is clearly in her last chapter, and my entire family is ready to accompany her in whatever way she needs as she completes her rich and unique life journey.
The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.