by Andrea Powell, HPCCR Electronic Communications Manager
Lori Williamson and her husband, Michael
Knowing about hospice is (in a weird, messed up way) kind of a curse. Because once you understand the benefits and you see first-hand how comprehensively amazing hospice clinicians are, you get even more frustrated that there are so many misconceptions about it. Hospice hastens death. It’s only for the last days and hours of life. Your loved one will sink away in a drug-induced haze the minute they come under hospice care. No. Wrong. False.
When you see what a monumental difference hospice makes, you feel an urgent need to share everything about it. You want everyone who has a seriously ill loved one to look into hospice immediately, even when you know they aren’t yet ready. Even when you know they’re scared. And you want to yell from the rooftops about how no one should be scared because hospice care can actually extend life, and that it supports the entire family, and the hospice team will help everyone feel prepared, and it will make what could be a terrible experience actually wonderful and peaceful, and, and, and. . . .
I could go on for days.
I myself knew very little about hospice care when I joined Hospice & Palliative Care Charlotte Region. But in the five years I’ve worked here, I’ve seen a wedding at one of our hospice houses, met veterans, interviewed widows, heard testimonies, and cried buckets of tears. I’ve cried because the stories are, yes, devastatingly sad, but also because, in their own way, they are excruciatingly beautiful. The people I talk to could not be more passionate about the experiences they’ve had with hospice. They could not be more appreciative of the sacred time they had with their loved ones. They now know what I know. And they have become our staunchest advocates.
Below is an email that we received last fall from Lori Williamson, whose husband, Michael, was under the care of Hospice & Palliative Care Lake Norman.
We give life with a chemotherapy schedule (days 1-7 were chemo with side effects, followed by days 8-14 in isolation because of low blood cell count) a score of ZERO.
We give life without chemo (which included five holes of golf, a ride in Cobra Sports Car, and a huge family party that included five sons, some wives, and some grandkids, even watching football and baseball games at a crowded sports bar as a family) a score of TEN.
I just want everyone to know that hospice care doesn’t mean I am sitting besides Michael’s bed all day long, holding his hand. He is up and moving, walking stairs, going on outings, and enjoying life with his family every day. It just means that we can call and have hospice professionals available 24/7 to help us with everything we need. The nurses and social workers from Hospice & Palliative Care Lake Norman come to check on us, prescription drugs arrive in the mail, and someone is constantly refining the game plan to improve pain management. I am so grateful we had so many friends who understood about the benefits of hospice and encouraged us to begin immediately. What a gift it has been!
Michael eventually moved to Levine & Dickson Hospice House – Huntersville and spent his last days there. The transition of his care was seamless and Lori maintains that without the support of her hospice team early on, she wouldn’t have had the courage to fight for comfort care over curative care. She would have missed out on some of the most wonderful moments she ever had with her husband – namely slow-dancing with him in their newly-renovated kitchen, a project Michael undertook during the months he was under hospice care. He died exactly a week after that last dance.
So do you see what I mean? How frustrating this is? Hospice care is not meant to be a “best kept secret”. We don’t want it to be some sort of exclusive “club” where more members reduce its appeal. We want everyone to benefit from this exceptional service.
If you know what I’m talking about, I hope you’ll join us on our conceptual roof. Maybe we can shatter those misconceptions about hospice at last. Maybe, just maybe, if we all shout loud enough, we can finally be heard. I’m willing to get a little hoarse. Are you?