Diary of a Brain Tumor Patient's Wife

Mar. 3, 1999

Renette Davis

The Hospice nurse seemed to be quite concerned about Paul this morning. She listened to his heart and said it was bounding. I asked her if she said pounding or bounding, and she said bounding is the medical term, and it basically means pounding. She said to put him on the oxygen right away and leave him on it as much as possible.

His feet seem to be swollen more than usual today and the nurse said that his nail beds look bluish. Mom asked what color they were supposed to be and she said sort of pink. Then Mom asked her what caused them to be bluish, and she said lack of oxygen.

She called Dr. Will from here and I heard her use the words dyspnea and tachypnea. I asked her afterwards what they meant, and she said dyspnea means difficulty breathing and tachypnea means fast respiration. She suggested to Dr. Will that we may need a nurse or nurse's aide here 24-hours to monitor the situation, and he agreed.

Hospice has crisis care in the home, but our HMO doesn't cover that. They only cover crisis care at the hospital, and I don't want to send Paul there unless we absolutely have to for safety reasons. Hospice has us down for Medicare as our secondary insurance plan, and they do cover crisis care in the home. However, when I called Social Security last week to see whether Medicare would cover some at-home health care, I was told that we aren't covered under Medicare. They said (and the book from Social Security also says) that Paul has to receive disability benefits for 24 months before he's covered under Medicare.

Darlene (the Hospice nurse) said they would figure it out, so we may or may not be getting some at-home care from Hospice for a few days. I asked Darlene privately if she thinks this is a major step downward for Paul and she said she thinks it is. I was already pretty concerned because Paul seemed so much worse to me this morning. His speech was slurred and a lot of his words didn't make sense. However, he is more alert now than he was earlier. Maybe the oxygen helped. I don't know how long he'll keep the oxygen on, however, because he doesn't like it very much.

The Hospice social worker is coming out this afternoon. I had talked to her last week about getting some home health, and she said we might be able to get some help from the Department of Rehabilitation, which I believe is a state agency. They don't send people out at night, but we may be able to get someone for a few hours during the day. She said she would put through the referral and then someone would come out and do an assessment. I guess they have a sliding scale, so it might not cost us as much as someone from a regular home health care agency.

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Created: June 12, 1999
Last updated: July 21, 2010