“On Tuesday, my sweet doctor made the call we didn’t want to make – she called hospice. Within a few hours of returning home, hospice was calling us. We scheduled the admission for Thursday. My case nurse and an administrator arrived at our home with sweet smiles and soft spirits. At the kitchen table – where all important discussions are required to take place – we talked about the ins and outs of all things hospice.” – Mandy Smith, from her blog post on August 19th, 2016
Merriam-Webster defines hospice as:
: a place that provides care for people who are dying
: a place where travelers can stay; especially : an inn kept by people in a religious organization
- : a facility or program designed to provide a caring environment for meeting the physical and emotional needs of the terminally ill
The word “travelers” is truly sacred here as I am reminded we are on a journey, and Earth is one of the stops on the itinerary. Personally, my experience with hospice caregivers is, if they aren’t angels among us, they are indeed miracle workers who somehow breathe life and nurture love into end of life situations. The depth of emotional care hospice caregivers provide is so profound, it’s not just for the patient but for all who are affected by the death of their loved one, too. I wonder why health care in America doesn’t first start out with them (maybe under an alias title without the premise of nearing death), solely for the miraculous nurturing they offer rather than all the scary tests and what if’s most people face in routine medicine?
Obviously, though, without any experience knowing people in hospice care or having been through it with a loved one, the word “hospice” can be scary with all the details and unknowns. I asked Mandy about her experience leading up to the call, and so far, with hospice…she shares:
“I had a lot of fear about hospice. I think just hearing that word as a patient, makes the end of your journey seem so much more real. In my heart, I knew the call would have to be made at some point, however, I continued to put it off and was happy living in my little land of denial. I could shove hospice to the background and just focus on everything else. Thankfully my palliative care doctor, who has been an amazing spiritual, medical and emotional mentor for us helped us talk through the decision. She told us hospice would be there for us night or day when needed (anything) and that establishing a relationship with these people is very important. So I agreed. My doctor contacted hospice and within hours they called us.
The initial meeting and first few days were a little overwhelming for me. Jay and I are used to cancer care happening very slowly. Hospice is the complete opposite. Within 1 day, we’d seen several nurses and had all manner of medical equipment delivered. For the first week or so I was in a bit of an emotional funk. Sleeping in a hospital bed and dealing with all the equipment made the situation in-your-face real. Denial was no longer an option. After the first week, we settled into a very comfortable routine. My nurse visits weekly. She is tender and kind. They handle all meds and supplies, which is great…less things for Jay and I to have to deal with. My wound care nurse is beyond amazing. She’s the first person we’ve dealt with that understands the tumor wound and will be here in a moments notice if needed.
Hospice offers counseling, pastoral care, volunteers to help around the house; walk dogs; (they’ll) even just sit with me if Jay needs to be away. Their goal is my comfort and ensuring that Jay and I have the time we need together to focus on the important things.
Now that we are with hospice, I can’t imagine trying to do this without them. I know they will be open and honest with us throughout this process. It takes very special people to work with hospice patients and I’m so grateful for them.
Jay and I first wondered if we made the call too early. We’ve talked about it and feel that establishing the baseline with our care team was a great choice. As my condition progresses, we know the people who will be here with us and we know that we can count on them.”
So, back to that place where “all the important discussions are required to take place”…if all your closest family and friends were gathered around your kitchen table, whether the topic was cancer or mountains or Hawaii or hospice or flower gardens or laughing so hard your muscles hurt, what would you share and what things would you long to know about them?
- I long to know how cancer has affected/changed my loves. Family and friends don’t like to discuss this – they think they have to put on a brave smile for me and make sure I’m ok. I know they are hurting and I want to discuss it. You don’t have to put on a façade for me. I can see through it. I see the hurt and I feel a tremendous amount of guilt for putting that hurt in your heart and on your face. I am so sorry that your wife, daughter, sister has cancer – I never wanted this to be your story or mine. I desperately want to make your pain go away and I know that I can’t.
- I can definitely tell you that cancer would be at the bottom of the list for discussion topics. We would talk about past adventures and experiences. I would want to hear about Mandy’s childhood one more time and laugh about the times we made fools of ourselves or did something so stupid we should have been arrested. We would talk about relationships, good and bad, and how we grew from them and how we will continue to “mature” from our time experiencing life. I love to tell stories and I really like to listen to people who are good storytellers. Tell me about the past, about your experiences and what you liked and didn’t like about a place or a person. Be real and be vulnerable. If you’re in front of the right people, you should be able to express yourself without fear of condemnation or ridicule, and that makes for the best conversations. Unfortunately, more often than not, we hold back a little something for fear of being judged, and therefore we can’t tell the “whole” story.