(This was posted just a week or two before Jill died.)As you know Jill has been very ill for a long time. She was hospitalized several weeks ago and spent two weeks in ICU and Critical Care. She went back to the nursing home on a Tuesday and returned to the hospital the following Sunday evening. She is still in the hospital but may be released today to the nursing home. So that is another 9 days or so.
I have recently been named Jill’s medical power or attorney and signed a DNR at the hospital. Jill’s friend John gave up the position – I guess there was a lot going on in his life and he couldn’t make the appropriate decisions or didn’t want to anymore. The palliative care nurse at the hospital recommended that Jill be put on palliative care at the nursing home once she returns. After reading articles on Catholic ethical decisions on end of life care, I decided to follow the nurse’s recommendation. When Jill is released I will visit the nursing home again just to make sure that all is in readiness for Jill. I was told that the home would have necessary medications on hand to do a lot of what the hospital would do, but the necessity for transport to the hospital with the attendant anxiety for the patient and often unnecessary testing once at the hospital would be avoided. I have prayed that I was making the correct decision, but now that the time has come for Jill to return to the nursing home, I am filled with anxiety and grief.
I know what this means – even though the nursing home will do all in their power to make Jill comfortable; they do not have the facilities or equipment necessary to do what the hospital might have done. Jill is dying and has been for some time. Not only the kidney failure, but COPD, arrhythmia, low blood pressure, vascular disease just about everywhere, gout and dementia – all this makes it pretty obvious to me that Jill’s time left is short. I have been told that after dialysis Jill’s blood pressure drops and she becomes very sleepy. Her lack of movement, exercise and deep breathing eventually leads to pneumonia – that was the reason for last week’s hospitalization. Had Jill not been sent to the hospital, the likelihood is that she would have passed away in a day or so. Jill occasionally misses dialysis. I am told that is not uncommon with dialysis patients, but it only makes the condition worse as fluid builds up in the chest and the lungs and heart cannot function under those conditions.
What I have read has assured me that God does not require extraordinary means to keep a person alive. Dialysis is considered one of those extraordinary means. To my mind returning Jill to the hospital each time she has one of these “episodes” could be called an “extraordinary means”. Without the hospital’s intervention with IV fluids, IV antibiotics, lung treatments and the like, Jill would have died. Some of the interventions could be done at the nursing home, but I doubt that the level of care would be the same. Jill will still be taken to dialysis unless she declines going. Cedarpointe nursing facility, Jill’s current rehab, is qualified for palliative care. If Jill continues to refuse dialysis, eventually she will be qualified for hospice care.
I have to see how palliative care is done before I can be satisfied that the decision is the correct one. I was scheduled to attend an end of the year small group luncheon from the Bible study today, but I just couldn’t go. I know that I would have cried, that my concerns would have overtaken the group’s rejoicing and I couldn’t do that. And I am tired – tired of taking care of all this, worrying about her, praying for her, not knowing from day to day what will be next for Jill.
I have gotten over the anger and hurt I have had toward Jill. I could not watch her suffering and still remain without compassion. She is in a lot of pain and she is scared. I am scared too. I am grateful that some of my prayers have been answered. I asked the Lord to give Jill peace, comfort, healing and joy. I know that Jill has had joy, for she has loved and been loved by another outside her family. The healing of her body is impossible for anyone but God. The comfort she has been given by me and by all those who have cared for her. Peace will be, in the end, the gift from God. I have prayed that Jill would pass quietly without fear into the arms of our Blessed Savior – that is all that is left. May the God of peace and joy bring my sister quietly into Paradise.