Cunningham-Ramos AML & Stroke after TBI Journey

Bay, by Sam Gilliam, Acrylic on canvas

Painting displayed in the main entrance of the Weinberg Building

We just completed the first week of Kim’s 5th chemotherapy treatment. I was very excited to know that the week was going to shorter – Kim’s oncologist decreased taking Azacytidine from 7 to 5 days.

The first two days were smooth – appointments with the oncologist, nurses, and the length of the treatment were fairly fast and on time. And when we got to the room to wait to be called for treatment, a friendly tech was waiting for him.

Still, getting Kim out of bed, getting him dressed, preparing food to go, traveling, parking, and ‘managing’ Kim to move ‘faster’ and not to engage so many people once we are inside the hospital, takes at least 6 hours and often a lot more.

Unfortunately, on Wednesday, after I took him into the hospital, sat him down inside the waiting room, registered him, and asked him to wait to be called while I went downstairs to move the car from the main entrance to a parking spot (valet service is not working) as we had done so many times, there was a problem! Apparently, he touched the tech on her belly and the tech got very upset and complaint to her manager. When I got back to where he was a few minutes after parking the car, the floor manager came to talk to me with ‘wide open eyes’ and told me that I was not to leave him alone at any time! As if my being there at all times will prevent him from behaving this way?  Well, it does not! There could be many people around him and if he is not ‘managed’ properly he would do this in front of everyone, including me. In fact, he did it again that same day in front of me when he touched the arm of the young nurse helping. She also went to the nurse in charge to complaint because he touched her arm!

Kim’s TBIs rendered him with a cognitive disability that makes him flirt with women or behave inappropriately.  This behavior is the consequence of his disability – he cannot help himself. People with dementia also exhibit a similar behavior.

I was very upset not just because he did this, but because he was in a healthcare setting and the nurses and techs should be trained to deal with this. Or, at a minimum, Kim should be assigned staff who knows how to manage people with his disability.  I was also upset because there was no compassion toward me or understanding on their part about his disability and I was made to feel like “the mother of a child that needed to be castigated for not keeping his child under control!”

After a similar other incident happened the last day of the last treatment, I had talked to his appointed oncology nurse about having consistency, and nurses who could manage this. Unfortunately, nothing was done.

On Thursday, when we came back for his treatment, we were pulled off to the side by the head of nursing and 2 other managers who proceeded to tell me how I had to be with him AT ALL TIMES!  They did not offer any solutions that entailed their staff. Rather, all the solutions they came up with had to do with me taking care of the issue.

You can just imagine how upset I was at this! After 1.5 hours of them offering solutions that did not address the problem and that I “needed to do” like: “bring a third person”, or “why not change him to the treatment from home”, which I found outrageous, and they not recognizing that they needed trained personnel, I told them I would email them with literature on how to train nursing staff for people with TBIs or dementia (they exhibit the same characteristics.).  I did a lot of research that day after I came home and I sent them key articles with a request for them to train their nursing staff.

So far, I have not heard back! I did send a copy of my communication with the head of nursing to  Kim’s care team at John Hopkins, a group of wonderful doctors (GP, Psychiatrist) who have cared for him for the past 5 years, his wonderful therapist, his Oncologist, and nurse oncologist.