Story Time

Last week, I convened our monthly State Liaisons call.  We had a long discussion about what works best for NHDD activities.  The group agreed that stories are among the most powerful tools to spur people to engage in advance care planning.  Stories can take all sorts of shapes and sizes.  They can be happy, sad, frustrating, and rewarding.  No matter what, telling stories is likely to engage people and help them understand the benefits of advance care planning.

People repeatedly ask me how and why I founded NHDD.  Of course, I respond with my story.  My story is that I’m lucky.  I haven’t really had to deal with a complex healthcare decision-making situation in my immediate family, although we’ve been sharing our wishes for decades.  Yet, in serving on several hospital ethics committees, I’ve repeatedly seen the agony that comes as families try to make decision on behalf a loved one who never talked about his/her wishes (and, in most cases, was never asked).  I’ve been humbled, however, by countless stories from NHDD participants about how helpful NHDD has been to prevent some of those situations from happening.  Thus, stories lead to more stories.

 All of us have some story to tell about advance care planning.  Don’t be shy.  Making the topic personal makes it real.  Whether your NHDD event involves a crowd or an intimate group, please consider telling your own story (or even someone else’s).  You’ll be amazed how effective it is.  And, then, when you’ve got an NHDD success story to tell, share it with us and we can amplify it with this blog!

Comments

[DOLORES]

The story I have is personal and emotional. my Mother was a victim of Alzheimer's disease for more than 20 years. I was her caregiver. Hospice for such illnesses was available, however having been in healthcare for over 34 years at the time of her demise I did not choose this added support. The time came and an acute treatable infection presented itself. I was alone as a daughter, considering treatment of the acute illness or comfort measures and allowing this acute process to take its course and end this torment to me, my mother and others who loved her yet no longer had the pleasure of conversation with her as such basic skills had been stolen by this disease many years before. I stood at her side and made the decision to allow this acute process to lead the way in what events were to come over the next few hours or days. I got up into the bed with my mother and I whispered to her that I was there and she was sick. I sang to her, held her close in my arms, I kissed her, rubbed her arms,and gently stroked her cheek and brushed her hair from her face. The comfort measures given brought down her fever and her heart rate and slowed her breathing to a normal rate. Comfort was on her face as it peacefully relaxed from the grimace of before. In about two hours she opened her eyes, looked to the ceiling and her face seemed to glow. I again laid with her, whispered to her, Mother, that is God you see and He is ready for you and it is okay with me for you to go. Mamma, her mother, is waiting for you. I will not be far behind. I love you. She took two more breathes and she was relieved of her tormentor, Alzheimer's Disease, and her sweet spirit was on the other side at peace. I was sad that I could no longer touch her again but letting her go was my gift to her for peace and rest and my gift to myself of selfless surrender to the inevitable, death. This choice was neither easy nor without spiritual direction to realize that death is not and end, it is an opportunity for the new beginning in a place where Alzheimer's Disease does not nor will never exist. i am thankful for groups like NHDD.