CAREGIVING: I am losing track of the days. But, about a week ago Kathy’s nurse, Shannon returned for a follow-up on her blood pressure. It turned out to be the same day that Rebekah, the hospice spiritual advisor was visiting me too. I wanted her advice on some of the brain and body donation forms I had. Kathy’s blood pressure was still low and I had cut her Propranolol down to one tablet (from three). About five in the morning she had a typical coughing fit, and I decided to try the Atropine for the first time. (see the previous post). The little bottle seemed hard to squeeze, but it was kind of dark in the room. I felt pretty sure that I must have squeezed a drop or two into her mouth.
Declining: When Shannon checked Kathy, her oxygen levels were low; and her pulse was fairly high. For the first time in a while, her blood pressure was elevated; and it sounded like the raspy death rattle was back in her lungs. I think she said her eyes looked “sunken.”
She said , “I think she is declining.”
She paused, “I know it isn’t what you want to hear, but I have to be honest.” She talked about putting her on oxygen if her levels continue to be low. But for the moment, “She seems to be breathing okay and she looks comfortable.” I asked whether giving oxygen is considered life support. She said no, it is for comfort. I mentioned that I had tried the Atropine and was worried about squeezing the correct number of drops. I checked the bottle again (now that it was daylight) and realized I squirted her with Atropine instead of giving her the 2 drops. She said Atropine could cause some of today’s symptoms. In the meanwhile we decided to up the blood pressure medicine to 1 1/2 tablets. And go easy on the Atropine.
Rebekah: Shannon was finishing up with Kathy when Rebekah arrived. I told her about the latest verdict: “Declining.”
We talked in the kitchen. Since Kathy can no longer speak, it is hard to know, what she knows. I just assume she hears and knows everything. Who knows? Rebekah put on her therapist hat and asked, “How did it make you feel… when you heard that she was declining?” I said, “Of course, I didn’t want to hear that.” But I’ve expected it at some point.
“This is hospice after all,” I said.
I also told her today’s setback could be from my slip-up with the drops. I told her that sometimes I worry that Kathy’s health is so compromised that just doing one thing or not could make a lot of difference. Her remaining life is in my hands. She said “There is a fine line. Just deciding when to stop the feeding is a decision like that.” I could hear Kathy coughing over the baby monitor. So, I went in and did some vacuuming.
Doctor in the house? Back in the kitchen I brought up that Doctor Jackson is leaving to “pursue other career opportunities.” We might need a new doctor for Kathy. Since nothing happens until September, I might not need to worry about it. “This is hospice after all.”
I asked Rebekah if she knew any doctors that did house calls. I’ve heard there are a few now. She said she would ask Doctor Rosen, the medical director at the hospice. He might accept a new patient.
M.O.L.S.T.: Rebekah noticed Kathy had a “MOLST form on the refrigerator.”
I said “Moist?”
It is a new type of DNR (Do Not Resuscitate) form used in Massachusetts and a few other states. It stands for Medical Orders for Life-Sustaining Treatment. It is like a DNR form, but it has other options for artificial feeding and hydration and ventilation. And whether to be transported to a hospital. As we looked it over I realized there were a few parts like taking her to a hospital that need to be changed. A new one will have to be done with the new doctor anyway.
We went over the body and brain donation forms. I was just confused over who the donor was. The donor is Kathy and I’m just her representative. There is a bunch of other family health information they ask for. I know who has Huntington’s Disease and a few other health issues, but I need to ask one of Kathy’s sisters to fill in some blanks.
Rebekah said she felt I was in an “Okay place” and I seemed to be doing okay. We looked in on Kathy and Rebekah said goodbye to her. Then she gave me a hug that made my bluetooth earpiece redial Shannon’s number by accident. Oops!