Craig’s Physical World Narrows – June 20, 2009

Craig has spent almost a week now exclusively in bed and in his room. Each day we have asked if he wants to get up, but we will now probably stop asking. His wheelchair is now folded up in a corner, and the parts of our home that were moved to accommodate it are moving gradually back into place. The TV is now outside his doorway so we can watch a movie with him in the bed. It’s a weird transition—not wanting to assume he’ll never get up again, and yet seeing that he just doesn’t have the energy to do so either. The nurse and I yesterday moved his bed so he has a better view out the window and all of us have better access to care for him from both sides of the bed (it was against the wall). I’m beginning to give the caregiver some days off, because there just is not enough to do.

Craig’s vital signs are constantly changing. Heart rate, blood pressure, and temperature are all ranging above and below normal daily. His lungs are more congested, so I’m doing breathing treatments more often and occasionally cough syrup when the coughing is making sleep impossible. He’s generally eating two small meals daily. It’s clear that Craig just wants to sleep and wander in spiritual space, so having physical interventions (bathing, breathing treatments, pills, etc. etc.) are a test. I often simply sit at his bedside and hold his hand…or simply let him sleep (and keep checking whether he’s breathing!).

Craig’s mother and sister drove over from Pennsylvania yesterday for a lovely visit. They had not been able to be here since Easter/late April, so it was good to see them. Betsy, Craig’s support group leader at The Gathering Place, also came for a visit with him yesterday. Music and Art therapies were both canceled this week, but he’s still open to them happening next week…we’ll see.

It’s becoming harder for me to leave Craig for any length of time. I’m wondering too much what is happening in my absence, and he seems to need me close by. I am still taking occasional breaks though – got to the grocery (he’s enjoying the cornmeal mush again), dentist (no cavities), and massage therapist (lovely) this week.

Love,

Susanne