There’s a kind of tiredness that sets in when you’re living at the hospital, trying to understand what’s happening to someone you love. The clock on the wall blends with the incessant beeping from various machines that your loved one is surrounded with. You listen to doctors coming and going, each bringing a new piece of news, a different plan, and before you know it, you feel overwhelmed with only bits and pieces of what your loved ones' care plan is. Along with mental exhaustion, it can often leave you feeling empty and confused, often like you are on the outside of their circle, waiting for someone to help you make sense of it all.
A family recently shared how, during a long hospital stay, every doctor spoke at a different time and none of it quite fit together. The frustration of feeling left piecing things together from hurried hallway conversations, and trying to remember who said what, made them feel more lost each passing day. The sensation of their world shrinking down to a hospital chair and scraps of information. On top of the worry of their loved ones' illness, was also the fear of missing some important information or making decisions without knowing the full picture.
That’s when a palliative care team can make all the difference. Many people hear the words “palliative care” and think it means giving up, or that it’s only for a very specific group of patients. But that’s not what it really is. Palliative care teams act as advocates and translators. They aren’t there to replace your doctors, rather, they slow everything down, gather everyone together, and help you gain understanding of medical terms, care plans, and a chance to ask your questions in a less hurried environment. One family remembered the palliative care team rolling chairs into the room, sitting beside them, and talking honestly. Everyone heard the same thing at the same time, including their loved one. There’s a quiet relief that comes when someone takes the time to listen, to connect the dots, and to say, “Let’s make sure you understand, and you’re not alone in this.”
Palliative care isn’t only for the final days or the most critical cases. These teams can help at any point in a serious illness. Sometimes it’s right after a diagnosis, or during an unexpected complication after surgery, or when a family finds themselves in a hospital for the very first time. One family shared that after their first palliative care meeting, they gathered in the hallway to talk about what just happened. Much of their confusion had lifted, and the overwhelm had eased. Someone finally asked, "Did that help? Do we understand what's going on now?" Everyone nodded. Then one family member said softly, "Isn't this something that all families need?" It wasn’t just about their own situation. It was about anyone feeling overwhelmed by medical talk and uncertainty. Most hospital stays are overwhelming enough, especially for long extended stays and complex care plans. The wish in that question was clear. Every family, no matter the diagnosis or age, deserves this kind of space to ask, to feel included and to understand.
You might find it helps to ask the hospital staff if a palliative care team is available, even early on in a serious illness or after a sudden change. It’s okay to say, “We’re overwhelmed. Can someone help us understand and walk us through what is happening?” These teams aren’t just for the most critical moments. They are there whenever things feel heavy and confusing. If you ever feel lost in the swirl of medical words, you can ask for a meeting to include doctors, nurses, and your family, where you can talk together and gain understanding. Sometimes just knowing you have someone on your side, helping you find your way through, helps lift some of the fear, uncertainty and anxiety you may have.
We hope this information helps during a difficult time. If even one family feels a little less alone or a little more prepared to ask for what they need, that matters. Thank you for reading our blog. At Wheelan-Pressly Funeral Home and Crematory, you can reach us at (309) 786-5421 or visit our website.
Resource:
https://getpalliativecare.org/whatis/
https://www.caringinfo.org/types-of-care/palliative-care/
