Ed and Carol Gulley are committed to sharing Ed’s illness – he has terminal brain cancer – with the wider world in the hopes people can learn from if it happens to them and their loved ones.  To that end, Carol and Ed have been blogginq quite openly and  honestly about Ed’s cancer, and sharing the daily ups and downs of such a traumatic change.

I am trying to do the same, with them and for them, at Ed’s  request. I also keep my distance when there are turning points, that is not the place for outsiders, in my view.

Ed and I are doing a series of videos together and Carol is writing powerfully and eloquently their blog, the Bejosh Farm Journal.

I believe the decisions surrounding a disease like Ed’s are sacred to him and to the people who are caring for him. I have no place in those decisions, other than to help out when I can and be available to talk to Ed in privacy and honesty. Today, Carol writes about a turning point, in this process – new and difficult decisions that must be made in light of new and difficult occurrences.

As Carol writes, Ed fell during the night on Thursday and again yesterday afternoon after he and Carol returned from a trip for some ice cream. Ed has been insisting – and he has no opinions that are not strong – that he can handle himself with a walker or a cane. He is trying to preserve both his dignity and independence at a time when both are gravely threatened.

I understand this very  well. No man, especially a man like Ed, wants to surrender his dignity and pride.

Carol, his primary caretaker, does not intend to let him fall in a more serious way and injured himself, not on her watch. Carol does not challenge Ed lightly – no one does – so she asked the family for help.

“..I see these trials as having no compromise…no more scurrying around like you are a superhero on a mission…no need to prove anything to any of us,” she wrote on her blog. It is interesting that sometimes Carol confronts Ed on the blog, and speaks to him directly there.

This is one of those very classic and common moments in the lives of the terminally ill and their families, when the freedom and rights of the patient collide head on with the freedom and rights and well-being of the caregivers. It is difficult to be terminally ill, it is difficult to see it happen. It is difficult to be responsible for the health care of someone you love.

Carol ask the family to weigh in the family did – some advocating for Ed, others for Carol. One son, who was severely injured in farming accident in 1997, remembers going through the same thing as his father is now – he was in an induced coma for 40 days.

And these decisions are complex. Ed suspects he is going to die anyway, and what does a bump or a bruise along the way matter? He also knows a broken leg or arm or hip would matter, and threaten  his and the family’s control of his illness. He and I have talked about this, and I’ve told him that if he ends up with a broken limb in rehab or a nursing home, it could be difficult for him to get back home, where he wants to  be.

He doesn’t wish to be in that system.

There are no easy decisions for the Gulleys, only ones that need to be faced. As Carol said, there was no compromise.

The family made a decision – in conjunction with Ed. They will hired a visiting nurse on some nights between the hours of 11 p.m. and 6 a.m. “we do need help,” wrote Carol, “he is getting up and falling through the night.” She doesn’t see this as a permanent solution, just as occasional relief.

I was planning to visit Ed this afternoon, but I think I’ll wait until tomorrow. Some moments belong to the family. In my therapy work, we learned to be sensitive about the dignity of the patient. They must not be ganged up on, or have their wishes dismissed. They must have the time and space to absorb moments like this.

We also learned from social workers and ministers  to be sensitive about the needs of the caregiver – they are in just as much need as the people they care for, they face enormous pressure, emotional turmoil, and great disruption and sacrifice in their lives. I have seen first hand that people need help when chronic illnesses advance.

Without help, the whole system can  fall apart.

Terminal illness is always a balancing act, everybody does the best they can for as long as they can.

“I hae a feeling that there will be more of these ‘interventions,” wrote Carol, “but hopefully they will become a bit less challenging. We have a strong  family…in ways I never thought about…but now we can all work together to make the journey a bit more bearable…”

Carol and Ed have passed through a seminal moment in their very wrenching journey. I believe they are helping people and  educating people, and prodding them to think about things we may all have to face in one way or another.

I am grateful to play a small part in that.

In this, Ed is getting his wish for his illness and possible death to have meaning behind just him, Carol, his family and his farm. It is a gift, perhaps one of his last.