Today, fear and depression at the Gulley farm. Carol reports on their blog that Ed had a very difficult night, and is suffering from severe anxiety and depression. A hospice nurse is coming to the farm this afternoon, hospice is bring a hospital bed for Ed, a wheelchair and some other equipment he will need.

Ed is saying he doesn’t want to be bed bound, Carol says, and he is crying and she sees the fear in his face. This is not uncommon for patients to react sharply when Hospice appears, they do wonderful work but it is never really good news.

I was supposed to bring lunch to Ed, but he asked me instead to come to a hurriedly called family meeting tonight. He wants me to be present as an observer, not a participant to take notes and keep a record of any major decisions made by the family.

I scrupulously avoid injecting myself into family decisions, and this is the first time Ed has asked me to do this. And I agreed. He asks me for very little.

If appropriate and he requests it, I will write about it. Otherwise, not. it is a very closely knit family and I will respect their privacy as much as they want me to.

Carol says Ed was not able to sketch today, and can’t sit at the computer at all. She is hoping the hospital bed will permit him to sit up and draw and sketch as much as he wants.

It feels like something has changed since yesterday. He seemed serious, but calm and reflective in our video talk.

I notice Ed is losing weight and retreating from walking and moving around unless necessary. He can laugh when prompted but much less than before, all of which is understandable.

Carol wrote on her blog that the hospice nurses are providing medication for fear and anxiety.

Carol wrote another angry post this morning, “My Farmer and Me…Not Just Me…” She is under a great deal of pressure. She is still struggling with the role of the caregiver versus the role of the wife and partner. Anyone would be.

Hospice is making its presence felt, they will work hard to get Ed comfortable and keep him comfortable and also keep him at home, where he wants to be.  Contrary to some popular opinion, hospice is not about death, but about independence and quality of life. They will faithfully carry out Ed’s wishes.

This often takes a great deal of pressure off of the family. I hope that is the case with the Gulley’s.  I will be there tonight to listen and observe and otherwise be silent.

I am relieved that they have trained nurses and social workers to call, I know hospice will get them ready for what is coming, whatever it is. The equipment they are bring in is very necessary.

I look forward to seeing Ed tonight and getting a better understanding of what is happening.