My Hospice Journey as a Son
“I just can’t imagine what this would have been like if she didn’t have hospice care. Yeah, I can; it would have been hell.”
I have always known that our staff at Hospice & Community Care were amazing at providing care and comfort to patients and their families, but when I heard my dad tell me what it meant to him there were no words to describe how much pride I felt in our team. Thank you to everyone on staff and our volunteers who provided care and comfort to my family at one of the most challenging times in our lives.
Four months ago, I was no longer just the President & CEO of Hospice & Community Care, I was a son helping my parents navigate a journey that I had only talked about, but never experienced. While each patient and family’s Hospice experience is different; one thing remains the same – at each stage in a patient’s level of care they are given the utmost respect, treated with dignity and comforted. And, my family’s was no different.
Here are a few moments that stand out on our Hospice journey…
The Referral: Having the Tough Conversation
My mom had been diagnosed with breast cancer and after a long and courageous fight she lost her battle. Sadly, her cancer metastasized and things began to change very rapidly. Mom’s journey with Hospice & Community Care began with a referral from her oncologist to Palliative Medicine Consultants, our Palliative Care team in the hospital, who was amazing. They took the time to get to know Mom and learn what was important to her and our family. They quickly came up with a plan to get her discharged from the hospital.
They also brought up the possibility of using our Supportive Care program when she went home. Any of you who have had to have this conversation with your loved ones knows exactly how I was feeling. While I had conversations with my parents, it’s never easy to accept that the end may be near. I took great comfort in having the Palliative Care team know how to bring up the hard things with my parents, gently.
Supportive Care: Keeping Her Home
When my mom was discharged from the hospital, the next step was bringing in Hospice & Community Care’s in home Supportive Care team. We experienced firsthand what Hospice’s Supportive Care program is supposed to do. One of the program’s primary goals is to keep people out of the Emergency Room. And, thanks to the evening and weekend staff who took my dad’s calls, my mom was spared an ER visit and probably another hospital stay.
In addition to that, I saw our Supportive Care staff take my mom’s pain level from an eight to zero in just hours, something I never thought was possible. They provided such peace of mind for our entire family. Throughout the entire process they kept my family informed and answered all of our questions honestly and with tact. Mom and Dad both loved all of the Supportive Care staff.
Hospice Care: The Transition
Though my mom’s days were limited, she was able to utilize many of Hospice & Community Care’s services. This allowed for a seamless transition when she began receiving hospice care.
I will never forget the day when my dad asked me if it was time for hospice. I’ve worked for Hospice & Community Care for 21 years but that question sounds different when it’s about your mom. I was actually sitting in the opening plenary of the National Hospice & Palliative Care Organization’s Management & Leadership conference when my dad called me. The same conference I have sat in for the last 21 years feels different after that conversation.
I spoke with Mom’s Supportive Care nurse after that call and once again she knew exactly what to say and what to do. Our access team jumped into action quickly—making things easy for our family. They worked with the clinical support staff to set up the delivery of medical equipment so that we had time to rearrange my parent’s house and take down her current bed. It’s amazing how those little things made all of the difference!
After my mom was transitioned into hospice care, my dad shared that “it’s so much easier now that they are taking care of all of her meds and bills.” He then wanted to know who was paying for all of it. When I told him Medicare was paying for part of it, he said “wow, something good for a change.” Support from Hospice & Community Care’s donors pays for the costs that Medicare doesn’t cover.
Compassionate Care: Meeting Her (and Our) Needs
Like so many of our patients, we would have loved for Mom to be able to stay at home. But it quickly became apparent that this was not going to be possible so we began talking with her team about transitioning her to our Inpatient Center, another very difficult conversation.
Once again I was reminded of all of the things that were going on behind the scenes to make this happen. But as the son, and not a Hospice employee, everything sure seemed seamless. In just a couple hours everything was completed and the ambulance was there to pick up Mom and take her to the Center.
The ambulance transport staff were so caring and compassionate. My dad rode along in the ambulance with Mom and my wife and I followed. We did get a nice laugh when they mistakenly turned into the Sheetz parking lot. We thought my mom must have asked for a cappuccino.
I know I have walked through the doors of our Inpatient Center hundreds of times but none quite like this one. I can still remember walking through fields nearly 15 years ago envisioning what this land could become. I can remember so many conversations in the designing and building process about creating a place where you would want to take care of your mom. And now I was!
It was one of those beautiful April days in the 70’s that allowed our family to have dinner together in the Center’s screened-in porch. To all be together in a beautiful setting only a few feet away from Mom was truly special. It enabled us to de-stress for a brief moment and reminisce.
I stayed with Mom at the Center that night and it was one that I will certainly never forget. As many people know I am a Baltimore sports fan and that includes even very bad Orioles teams. And, yes I got that from my mom and dad. That night Mom and I watched something very rare this year—an Orioles victory. This is something that I will treasure always. But, I have to admit during the entire game I kept thinking we should have gone with bigger televisions.
Waking up in the Inpatient Center to the smell of bacon and eggs definitely helps to brighten your day. And having unlimited access to coffee, brownies, Rice Krispie treats and four
kinds of cupcakes was pretty nice too. These comfort foods definitely hit the spot and re-energized all of us.
And, when we needed it the most, Hospice’s chaplain shared the perfect prayer with us—giving us all peace and comfort as we held hands with Mom.
My dad summed it up best, “Boy, this isn’t like the hospital. It’s nice and peaceful; hospitals are noisy,” as he was holding and rubbing Mom’s arm while she took her final breaths.
I’ve said it time and again that our staff are special and I wasn’t kidding. I’m just one of 400 employees but I recognize taking care of the President & CEO’s mom wasn’t easy for anyone, but everyone was amazing to our family. It is because of them, our patients, families and community receive exceptional end-of-life care daily.
My dad shared with me that, “Hospice & Community Care went above and beyond anything I could have imagined. I am eternally grateful.”
From my entire family, thank you to everyone for treating my mom like you would have treated yours.
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