During Juliette’s last days, it helped us a lot to have information about dying; it reassured us to know that what was happening to Juliette was a normal part of the dying process. For this information we turned to our hospice nurse, Arlene Case, and various books on dying, especially a self-published book called ” Dying: A Natural Process” by Denys Cope.
In the spirit of helping others who might have to care for a dying person, we are providing this overview of what we experienced during Juliette’s dying process. We understand that this process is unique for everyone, but thought it might provide comfort if you saw your loved one experience something similar to Juliette’s experience, much of which agreed with our books on dying, and some of which didn’t.
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Friday, November 20, was the day Juliette picked to stop eating and drinking. Her loved ones were supportive, but many were worried about this decision. However, Juliette cutting herself off from food and water was nothing like a healthy person doing the same thing. Juliette’s body was already well into the dying process, and she had long since stopped enjoying food. Giving up food was not a hardship for her. She decided to cut out liquids to speed up the process, which turned out to be harder.
Once Juliette decided stopped eating and drinking, she moved very quickly through the dying process. After a couple of days, she was no longer able to get up and walk to the bathroom. Exertion often caused her to become nauseated. Her brief time with a Fentanyl patch caused her loads of nausea, so we took it off. Ativan helped control her nausea (which persisted even after removing the Fentanyl patch).
After three days of of no food or drink, she decided to drink again and thoroughly enjoyed a little water (usually in the form of ice chips) and milk.
During this time she began to talk to people who were not present, both living and dead. She was conscious of this and was concerned that she was going crazy. As we had read to expect this, we let her know that she was fine and to go ahead and have her conversations and we would do our best to figure out when she was taking to us. We often responded, even if it was clear that she was talking to Grandtar or someone else, since it seemed to comfort her. It was almost as if she was both awake and dreaming at the same time.
Staring the night of November 26, she experienced about 18 hours of “terminal restlessness”. She wanted to sit up and leave her bed but was unable to do so. She pulled at her clothes and covers, was very uncomfortable, and thrashed around a lot. We had read about “terminal restlessness” in the dying process book so we were able to understand and deal with this. During this time we did help her to sit up for a half-an-hour or so, which seemed to comfort her greatly.
At the end of the period of restlessness she seemed content and proceeded to sleep, and sleep, and sleep (for about two days). During these two sleeping days, she was almost completely unresponsive, but did become more aware if a new person entered the room or stood by her bed. However, she no longer spoke. At the start of this period, her breathing was deep and regular with lots of snoring like Juliette in her prime. After about a day, her breath became shallower and more forced, breathing with her mouth wide open. In her final hours, her breath would stop for a while then resume, sometimes for 30 seconds or more. She also demonstrated the “death rattle” for about two hours, as she breathed through a layer of phlem that had accumulated.
At the very end (the last hour), we had expected a peaceful time with her breathe slowly leaving her– this did not happen. We had expected her pulse to increase to tell us of her imminent death– this also didn’t happen. We were taken by surprise by the amount of vocalizations… lots of softs “ahs!” concluding with a loud intense “aahhhhh” and her eyes opening wide, which hadn’t happened in a couple of days. Finally, with her eyes closed again, her body went into mouthing small, unproductive, breaths. After a minute of this, receiving no oxygen, she stopped moving. We checked and found no pulse.