The Blog to Transform Advanced Care
Advancing Care through Innovation, Observation and Collaboration.
“Norma, there is a chance what the doctor has to say at your appointment will not be good news,” Ramie calmly said as we ate lunch together.
It truly was the eleventh hour in our minds: Leo was dying in a dimly lit hospice suite and Norma was scheduled to receive her test results from the OB/GYN in three days. It was time to ask some important questions.
Talking to a loved one about their mortality — no matter their current health status — might be a fairly easy proposition for some; for most, however, it can prove to be daunting.
Every visit over fifteen summers we struggled to have “the conversation” with Tim’s parents about how they would like their last years and days to play out. Despite our best intentions, Leo died before we could ever have this essential discussion with the two of them.
There were so many unanswered questions. What was important to them? What was unresolved? What still gave them joy? What if one of them died before the other? How did they want to be cared for in their last days? How did they want to be remembered?
As their ninth decade of life creeped closer, these questions became the proverbial elephants in the room. As the conversation was put off for yet another year, it became even more difficult to summon the courage to bring it up the next time — until we could no longer avoid it.
“I know one thing, if they tell me I have cancer I don’t want any of that chemo, no poking and prodding — no treatment. I’ll just leave it be. What do you think about that, Timmy?” The clarity in Norma’s voice was heartening, and we finally felt like the door had cracked open for further discussion.
The ongoing conversations during Norma’s next fourteen months served as our compass as we navigated through her inspiring end-of-life journey. We were sure to also have the supportive legal documents for absolute clarity of her wishes.
Now, our greatest hope is that Miss Norma’s story will help other families have an easier time broaching this difficult subject. Although we know that driving your loved one around in a motor home at the end of their life is not the answer for everyone, we have to ask, “How would you like to be walked home?”
The following links provide support for this important conversation. The user-friendly legal documents will help avoid ambiguity for you and your loved ones during a serious illness.
Helpful ways to start the conversation –
The Conversation Project – This site is packed with information, inspiration and a free conversation starter kit available in several languages.
There are also special kits for seriously ill children and for loved ones of people with Alzheimer’s disease or another form of dementia who want guidance about “having the conversation.”
“The Conversation Project emphasizes having a conversation on values — what matters to you, not what‘s the matter with you.”
– Ellen Goodman, Co-Founder & Director
Hello: The Conversation Game for Living and Dying Well – Would your loved ones rather play a game than have a talk? “Hello” might be the way to start. As the conversation is normalized more people will have a chance to die well. “Hello” was developed by Common Practice, a company designs practical tools that make it easier to communicate about what matters most to families.
Driving Miss Norma Many people have told us that they have used our story to organically begin this conversation with loved ones. Seeing images of Miss Norma on her epic end-of-life journey made the subject more relatable and less threatening to talk about. You can find our book at your local library, buy a copy for your family or scroll through the hundreds of photos and stories on our Facebook page for a conversation starter that resonates with you and your loved ones. We would love to hear how it goes!
Turning the conversation into a legal directive – it isn’t a complicated as we assumed it would be.
Understanding the Confusing Language Around Advanced Care – Do you get overwhelmed with the alphabet Soup of advanced care? What is an AD, DNR, POLST? C-TAC breaks it down in this informative post.
Five Wishes This living will/advance directive is legal in most states, is user friendly, and speaks to all of a person’s needs: medical, personal, emotional and spiritual. Once we filled these out together with Norma, a sense of total peace fell over our family.
POLST – A POLST form is intended to be used by individuals with a serious illness or frailty toward the end of life. Printed on bright colored paper we kept Norma’s on the refrigerator of our motorhome so anyone who was caring for her in her last days would clearly know her final wishes.
National Healthcare Decision Day This day exists to inspire, educate and empower families about the importance of advance-care planning. The link provides many resources to accomplish this, and we believe that interest in this subject should not to be limited to just one day.