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Today was, well, interesting. The day started with Carol being difficult to deal with and agitated. She accused us of being mean and hurting her. She spent most of the day on the edge of the bed, bent over with her head lying on her legs. She came close to falling off several times. We took turns sitting in a chair right next to the bed so we could prevent this from happening. Each time we tried to move her back into the bed she would argue, tell us to stop, tell us we were hurting her, etc. She kept pulling the oxygen tubes off and we would try to put them back on again. She was VERY agitated and we were VERY frustrated!!!

I called Hospice at 9:00AM and talked to one of the nurses. The suggestion was to increase the morphine and lorazepam, have a fan blowing on her and play soft music, all of which we were doing with the exception of the increased drugs. We increased the drugs but it did not help at all. At 6:30ish tonight Krista called them again. They gave a great suggestion to use the bedside table to prop her up and to put pillows at all the joints and under her head for support. As soon as Kelly and Krista did this she relaxed and went to sleep. She stayed like this the rest of the night.

A new nurse, Sasha, came by the house at about 8:30pm or so. She listened to Carol’s lungs and looked at her feet and hands. She explained to us what was happening. The yellow or jaundiced skin indicated that her liver had begun to stop functioning. The bluish feet and hands meant that her circulation was beginning to slow down. Sasha could hear fluid in her lungs and explained that as the fluid began to fill her lungs she would make a raspy, rattling sound as she breathed; some call it “the death rattle.” She then explained what would happen if she awakened again and what would happen if she did not. Every Hospice patient gets a kit that is to be opened only by a nurse when it has been determined that death is close at hand. She opened it and explained all of the contents of it to us. If Carol becomes extremely agitated again there is a drug to give her that will help her to calm down. If it is administered we are to call Hospice and let them know we gave it to her. We have to use our own judgment as to when to administer it.

It was refreshing to have someone be so honest and forthright with us, a relief really, although, I’m not sure had we been told all of this two weeks ago we would have believed or even listened to it. Two weeks ago we were in the throes of celebrating Carol’s birthday. She was talking, walking to the bathroom, eating decent meals and other than being on oxygen she looked fairly well. Sasha told us we were all doing the right things and should be proud of ourselves. I cried because I don’t feel I’ve done that great of a job, especially the last few days.

Before Sasha left, she held Carol’s hand, rubbed it very gently and very softly said “it’s OK for you to leave us. You don’t need to wake up again. Everything will be alright. Just sleep and relax and know it is OK.” More tears. One other thing she mentioned to us was that she could send someone to the house to play the harp for Carol. She said that some people seem to relax when they hear the harp music and it often will make the transition from life to death easier. We thought that sounded like a neat idea. She said she would make arrangements for someone to come tomorrow. Sasha was wonderful. She explained everything to us and was so very gentle and kind. I will forever be grateful to her for her kindness.

We have soft music playing, one of her favorites which is Baroque, and the room is fairly dark. It is hard not to relax. I have noticed that we all tend to talk softly now that the room is darker and the music is playing softly in the background. Her breathing is very slow and methodical, not labored like it has been for the past week. She has pulled the oxygen off and does not even appear to miss it. Sasha said that it was OK for her not to have it because at this point it appeared to be causing her more aggravation than relief.

I am slowly feeling such a peace, almost a relaxation, although it comes and goes, often, very often . . . maybe it is just the music and darkness. It is hard to know.

            So, this thing called death – it is not easy.  It is laborious – it is difficult – it takes time.  After a certain point, we wait anxiously for its arrival.