Karen has been a registered nurse (RN) for more than 40 years. Her father passed away in 2001 from a catastrophic event, and she remembers frantically working with her mother to fill out her dad’s advance care plan (ACP) the night before he passed. Using this as a learning experience, Karen and her two sisters were able to have meaningful conversations with their mother, Margaret, about her advance care plan and end-of-life wishes over the next five years. This allowed them to put a plan in place and communicate the kind of care that Margaret wanted to receive.
Margaret was diagnosed with diabetes when she was 35, which led to multiple health issues as her age advanced. During the last year of her life Margaret had been in and out of the hospital five or more times – a key indicator to start conversations about palliative and/or hospice care.
After Margaret had a massive stroke in 2005, she made the choice to move into a nursing home and begin dialysis. This course of treatment caused her to have repeated mini strokes. During a visit with Karen one Thursday morning she said, “I’m just not getting any better am I?” Karen agreed with her and explained the progression of her disease and that her body was winding down. She asked her, “Mom what would you really like to have happen? What is most important to you?” Margaret said, “I want to go home.”
Within a day, Margaret was headed home for the first time in more than six months. The first thing she did was have her family take her room by room so she could enjoy just being in her own house. That night all of Margaret’s immediate family came to visit. For the next two to three weeks it was a true celebration of life with friends and family visiting. Games were played, stories were shared, food and drinks were prepared and served, and love and laughter filled Margaret’s home. “As caregivers, we were exhausted trying to take care of Mom and all of her visitors,” laughs Karen. “Every day she would ask me, 'What’s going to happen?’ I would simply tell her that I didn’t know and ask her if she had any pain.”
Margaret lived for five weeks in the comfort of her home, surrounded by her friends and family. The night before she died she told her daughters, “Now if I die tonight you can call Father Mason, and he’ll know exactly what to do. Let’s pray together and then let’s remember all the good times.”
They spent that evening together sharing great memories and stories and, later that night Margaret passed peacefully in her sleep. “It was the most beautiful experience,” remembers Karen. “She taught us how to die with grace, with dignity, and how to be in control – she got to call all of the shots until the very end.”
Margaret had an advance care plan in place that helped her family and loved ones know exactly how she wanted to be cared for, and what was important to her at the end of her life. She spoke openly and freely with Karen about the progression of her disease and about her death. Having this in place made her exit from this world a positive experience for all those involved.
The community-based project Speak for Yourself, Plan Your Care is a collaboration of Caring Circle, Lakeland Health, and PACE (Program of All-Inclusive Care for the Elderly) that offers the opportunity for individuals in southwest Michigan to request and receive a detailed conversation regarding their healthcare wishes. Sessions are free and open to the community.
For a complete list of sessions visit our events calendar.
For additional information visit