Looking through the window of the Human Experience

The stories our staff are a part of last a lifetime. For me, watching my Dad travel his last journey from the window was one I will continue to relive the rest of my life. It will be a memory I cherish and embody as I continue to teach, mentor, and empower our Healthcare Heroes to have the impact on the stories they are a part of that ultimately bring connection, joy and purpose to the journeys of self, staff, residents and families.

As we come up to the one year anniversary of my father’s passing I am reminded of how my families experience could have been a nightmare. No amount of personal or professional death experiences could have prepared me for what I saw from outside that window. Nothing has ever made me feel so close, yet so far away and heartbroken. What I have learned along this journey is that the "thing" that has the greatest impact on suffering is how we love each other through it. From outside the window, I couldn't reach them to hug them, and love them all through it. My heart was breaking. All I could do is trust and pray that the people inside the room were loving them through it like I couldn't.

There was nothing but high praise and appreciation for all the staff at the facility, as my Mom felt supported and loved by all. For all of us who couldn't get to the man we admired, cherished and loved, our nightmare changed when a nurse named Sara from Moments Hospice came to work with her whole heart and all the tools she had at her disposal and helped us make some amazing memories in a few short hours.

Monday morning Physical Therapy was able to get Dick out of bed and to the bathroom with great difficulty as he had declined over the weekend. The decision was made to put him on Hospice. We requested Moments Hospice, and just as promised they were there within 2 hours of the referral, when Sara got there, she explains to Mom that because Dick had therapy that morning they were not able to officially admit him that day and would come back the next day to make it official. There was no next day for Sara in our story, but what she left behind was magic. She opened the door for us, we all got to see him, touch him, hold him, and feel him love us one last time. We all got a piece of him that night, and the people who should have been there surrounding him when he passed were there. If Sara hadn't been invested in her job, we would have been at the window living our eternal nightmare.

I think about how many of our staff have been the only people in the room with the family standing on the outside. The tears, anger, grief and despair our staff had to support, feel, and digest in each room they entered. This is the human experience of what we do as professionals.

There are very few things on our checklist that we do "to" people, that we carry home with us, it's how we feel about what happened that we carry home. An accumulation of these experiences become the things I as a health care worker hurdle on the way into work if there is no place to debrief, refresh and refocus. I disengage, quit and leave the industry entirely for less "human experience". What human experiences do I create along the way if I am disengaged, do I honor the 2 hours that is the difference between magic and a nightmare?

I saw Sara a few weeks later when I dropped by the Moments Hospice Office in St. Cloud, MN. I had some things to drop off and wanted to talk to the nurse who met with my family, because at this point no one could remember her name, I just wanted to make sure she knew her impact on our family and our story. As fate would have it around the corner came a tired frazzled nurse who asked what my Dad's name was, when I told her she immediately started to apologize about not being able to get him on Hospice that day and how nice my family was, and I stopped her, as she looked defeated. It was clear it had been a long hard road with this conversation being way to familiar and disheartening.

I looked her square in the eye's and said "you don't really know what you did that day do you?" I said "If it wasn't for you, we would have never been allowed in that building, you opened the door. If it wasn't for you, I would have never gotten to know where the best fishing spot was, and smile every time I pass it. If it wasn't for you I would not have been able to hold him, tell him I loved him and say goodbye. Because of you, everyone of us kids got our time with him and leave with amazingly peaceful memories, and for that, my family is eternally grateful, so as much as you think you didn't do, know what you did do. With tears rolling down our cheeks, I hugged her and left.

As professional caregivers, little to no emphasis is put on our contribution to the human experience of our residents and families and even less on the impact it has on our human experience in the process. We don't always get to see or hear about the impact of our support, which is unfortunate because it is the fuel that keeps us motivated, engaged and present with each other.

I have been in this industry for over 30 years and as I reflect on the systems, processes and procedures that have driven our agencies, defined our routines and fulfill the healthcare needs of the people who have built our communities we have little to nothing to help them support their own and someone else’s human experience. I have never seen the burnout, intolerance of each other and the shear inability to see or hear each other, we need to help them find a way back to each other, and back to the thing that used to bring meaning to each day instead of overwhelm and burden.

In the last 12 years I have grown to understand that the easy things we do as Care Partners are the things we do "to" the people we support, such as dressing, bathing, and eating ect. The hard part of what we do as Care Partners, is how we must "be" with the humans we support. To be with people it requires us to support the sadness, anger, confusion, grief, loss and loneliness that comes from the loss of independence, loss of home and powerless over what is happening next.

For most this is their end of life journey. There is no process or procedure for supporting this part of the human experience, there is no guide that helps us to help someone else's heart from hurting. When we go to the humanness of someone else we are forced to go to a place in us that knows what it is like to feel sadness, anger, grief and loss. We not only want the pain to stop for them we want it to stop for us too, so we try to fix it, but there is not process, procedure or pill that fixes this. This means that I as part of the human operating system, is left feeling mentally and emotionally vulnerable and raw.

Our orientation processes within our healthcare systems do little to nothing to arm our staff with the tools to support the human experience of our residents and families, yet they are on the front line of all the emotions that come with someone losing life's battle.

We put little to no value on this part of our staff's checklist, evidence by the fact we are having the hardest time in history keeping our staff.

Think about the human experience of your staff through COVID, (think about yours)...

• Were you scared to go home and infect your family?

• Were you scared to come to work?

• Did you have to get to know your fellow staff and residents better than you ever had before?

• Did you have to fill the role of family?

• Did you have to support on a whole new level to include loneliness and anger of residents and family like never before?

• Did you sit with people when they were dying because their family couldn't be there?

• Did you have to do things that went against your value system? Did you have to make things ok, that weren't ok?

• Did you have to support the emotions, tears the loneliness on the other side of the window?

How have you supported your "Human Operating System"? Have you given them the understanding that their job is not to "fix", their job is to "be", and that's harder. We may have taken off the masks, but for some the residual affects of COVID are the things I continue to hurdle on my way into work. How many people have we lost because they can no longer figure out how to hurdle the humanness any longer.

Do you know who was standing at the window?

How did you support them?