Misunderstood Care

As I sit in my step dad's hospital room at 11 pm, I'm In a daze. While my family & I struggle to accept the inevitable loss, we also struggle with the battle of being misunderstood.

Our family is very close & caring. During times when family members are not well & in the hospital, much time is spent caring for that person. We automatically expect to stay at the family member's bedside until that person passes away or is well enough to leave.

This is just our way. In our hometown of Hazelton, hospital staff would be more familiar with the hands on support family provides. But here in the big city, hospital staff are both in awe & seemingly annoyed with our constant vigil. Most staff comment about how much family support & love we show to the person who is unwell & to each other. However, as visiting hours end, these comments soon turn to hints of how late it is, and asking us if we are going home soon. When they realize we aren't leaving easy, they remind us that it is past visiting hours.

This is also combined with other patients who do not understand why there is so many family members visiting.

As Ron's condition seemed to worsen today, our concern rose at the prospect of him spending the night alone. For myself, terrifying images raced through my head of struggling to breathe & nobody there to comfort him. With a bit of insistence, we were allowed to have one family member stay the night.

So as I sit at Ron's bedside I feel the pull of love for my dad & the push of 'policy'. When we asked if we could stay, they were a bit reluctant, but gave permission. Permission was caveated with a reiteration about hospital policy, that only one person can stay.

While I fully understand the need & purpose of policy, having it used as a way to push families out the door is incredibly isolating for family members. Then the person who is 'permitted' to stay is left to feel grateful, but does not want to be a 'burden' on staff.

Being here, is helping me to process, which will hopefully help to reach some level of closure.

Now it's 12:30 am. I feel better getting out some of those thoughts. Now I'm gonna make myself comfortable, listen to Ron's breathing, & let my mind take a wander down memory lane....

Update:
Later hat evening I spent with Ron, his breathing became increasingly worse and his pain unbearable.  About 3:30 am he became super agitated, and I had to run to get the nurses to check on him.  That is when they began to realize he was more than just a post - op patient. 

I expressed my fear to the nurse on duty and how my family needed to see him, and she got the message clear as a bell. Shift change happens at 7 am. By 8am the on-call orthepedic surgeon was in the room.  It was again clear from her questions and body language she realized the severity of Ron's condition. Physiotherapy tried to come in to do some exercises for Ron's hip at about 8:30.  I flatly refused them.  I made it very clear they weren't doing anything until Ron gets a shot for pain and it takes effect. They were surprised, and tried to push the issue  I said, the nurse is bringing a pain shot, I could find out when Ron was getting the shot or they could go find out so they would know when to come back. The backed out of the room.

By 9:30 am the Internal medicine doctor was in the room, with a tech doing an EKG.  The doctor was very clear that Ron could pass away at any moment due to his lungs or his heart. Our family again expressed concern about only one person being allowed to stay at night.  The doctor quickly reassured us that as many of us that wanted to stay would be allowed.

Throughout that day, there was over 30 family members that came to the hospital to say their good byes to Ron.  The private room Ron had, and the patient lounge was full.

So in the beginning, the attitude of the hospital staff was a bit  frustrating, but i now realize they were going based on the information and instructions they had from the surgeon that did the hip surgery.  But as soon as the Internal Medicine doctor was there to change the instructions, the nursing staff were amazing!

I dont think our family can say enough positive things about the nursing staff at the Richmond General Hospital.  Their compassion and support through the last two days of Ron's life was outstanding. 

But this whole experience just reinforced to me about how family must advocate for their loved ones.