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Background..... Arlene has been struggling with oxygen deficiency for several years, having been diagnosed with Idiopathic Pulmonary Fibrosis (IPF). For some time she had been stable using oxygen concentrators to enhance her blood oxygen levels. Over time, the disease has progressed making it more difficult for Arlene to walk and accomplish the tasks of daily life. Being the persistent soul that she is, she continued to push herself but had begun to diminish her excursions outside their apartment. At Thanksgiving, she purchased a fancy red electric scooter to help her get around the apartment complex and was able to drive herself to get her hair cut, go to dinner and play in the ukulele group. In the past several weeks, the disease has progressed making it very difficult for her to perform basic activities at home.
Timeline 12/27/17 - Arlene had a regularly scheduled doctor visit with her Pulmonologist to discuss her recent downturn and possible equipment changes to improve her oxygen intake. Walking into the office and around to an exam room really exhausted her. The office staff was concerned with her saturation levels and tried various treatments to help her oxygen levels improve. When she did not recover fully and the readings seemed to be bouncing around, they recommend calling the EMT's and having her transported to an emergency room.
She was taken to St. Joseph's hospital in Tucson. They were able to stabilize her but wanted to hold her for observation. They initially thought she might have pneumonia but that was ruled out. New tests indicated that her IPF had progressed in the last year. They held her overnight and we were in hopes of her being released on Thursday, 12/28.
12/28/17 - We called to inquire about her condition early that morning and they said she had another episode and her saturation levels dropped very low. They treated her again and ask that we come to the hospital for consultation. She was in pretty good spirts when we got there but she was more confused than usual. The medical team recommended she be intubated with a tube for breathing. She was not interested in this and it was not consistent with her wishes for non-heroic means. Arlene is a mouth breather and it was difficult for her to consistently breath in oxygen through her nose. The staff put a mask on her to improve her intake but she hated it and was fighting to get it off. She was given some anti-anxiety medication and calmed down. At that point the staff said there was really not much more they could do if we did not want to utilize the more extreme measures.
The staff, Jack, Chris, and Jan had a discussion and decided it best to provide "comfort care" to keep her in a good place as she declines. This is consistent with the wishes Arlene had expressed over the last month as her condition worsened. She did not want this to drag out and was tired of gasping for breath at the slightest exertion. She said she had begun to dread getting up every morning the last two weeks and thinking about the effort to get out of bed, get dressed, and face the day.
Dave drove over from Albuquerque and joined us that evening. The family stayed by her side to monitor her and work with the staff to keep her comfortable. Not knowing how long this would last, we also inquired about Hospice service. Arlene was pretty unconscious for the better part of the night, but as some of the medications wore off she became more coherent, recognized Dave, and was able to engage. Her funny sense of humor resurfaced and we have all enjoyed the family bonding and sharing end of life conversations. We have found a balance of medication, a period of quiet, and then a conciseness that we can all appreciate and enjoy.
12/29/17 - This morning continues about the same as last night. Jack, Chris, Dave and Jan are in the room with Arlene. We are waiting for visit from the hospital physician and the Hospice folks. There is a chance she might be discharged to an inpatient Hospice later this afternoon. Today mom said that she's comfortable and that we don't need to be afraid to die.