VSED in 9 1/2 Days

Monday, April 15, 2013 – Day 6

Alan’s daughter has been calling daily, and we put the speaker phone to his ear. He blows kisses.

Throughout the entire process, I am with Alan on and off throughout each day. Starting on Day 6, I spend more and more time with him, laying next to him in his small hospital bed. I was aware that he was in the last days of his life. I wanted him to be comforted by my presence. And I wanted to be as close to him as possible without disturbing him.

At 4:00 a.m., Alan is peaceful and sleeping. At this point, as a means to monitor the medication, the caregivers count his breaths per minute and report this information to the doctor. The doctor seeks to find the right balance in keeping Alan comfortable and yet keeping him somewhat present as this has been his request.

Note: Over these 9 ½ days, the doctor visited Alan at the house three times. She was on 24 hour call. As the process progressed, the caregivers and I were in more frequent contact with her, even during the middle of the night when necessary.

The doctor arrives in the morning to do the first neurological exam, check his vitals, and do a skin exam. Alan is propped appropriately to prevent any skin breakdown. His pupils are still reactive, and his lungs are still clear.

At 7:15 a.m., Alan’s eyes are open. He tries to speak, but it’s gibberish. He is able to swallow his liquid morphine with some prompting.

Alan needs to be moved in bed with assistance. His position now needs to be changed from time to time to prevent skin break down.

Because Alan cannot move himself, his tee-shirt is removed, and a new tee-shirt is put on him. The back is cut open so it can be easily removed without causing him discomfort.

Alan is turned onto his side and he is able to go back to sleep.

Tuesday, April 16, 2013 – Day 7

The caregivers continue to give Alan suppositories as another means to keep him comfortable.

Even when dying, a person continues to release waste and produce stool. Without drinking or eating, normal movement of the large intestine diminishes. Pain medication also slows the movement of the intestine, so a person can easily become constipated with hard stool. This causes abdominal pain. Suppositories help clear the colon of stool so the person can remain comfortable.

His legs are also getting stiffer. The doctor thinks this is from the Parkinson’s symptoms that he also has.

In the afternoon, Alan is able to open his eyes and purse his lips and give little kisses in the air.

I continue to feel comforted and share my love with Alan by being in bed with him and present.  He is responsive. He points to his mouth to indicate that he needs some moisture. Once he receives it, he whispers, “Better.”

In the afternoon, while I am in bed with him, he begins to talk in metaphorical language. “The show is going to start. Time to go.” He then looks at the imaginary watch on his wrist. His voice is weak and hoarse.

Alan begins to “rally.” This is often common a few days before death. A person will appear to be declining and nearing death, and then they suddenly seem more alive and with a burst of mystifying energy, and they become interactive and observant. For those who have not experienced this with other dying people, it’s a mystery.

He continues metaphorical language, “I’ve got to get the milk.” The people are at the party.” What time is it? Keeps looking at wrist. Then he says he needs to make a list.

“I’m at the beach.” I ask him, “Is it Cape Cod from when you were a little boy?” He doesn’t answer. He very slowly raises his left arm and opens his left hand. He looks at it, or he may be looking at the three photos on the wall next to him from his younger years.

He now wants someone with him all the time.

The doctor is here in late afternoon and Alan communicates that he is uncomfortable from thirst. The doctor adjusts the medication.

His lungs are starting to crackle. His heart rate is 90 beats per minutes.

Wednesday, April 17, 2013 – Day 8

In the early hours of the morning, Alan is sleeping soundly and shows no sign of discomfort. He opens his eyes and he responds to questions with facial gestures, but he is mostly “out of it.”

It is now necessary to move Alan every two hours to prevent bed sores and to change his wet pads. He continues to urinate on his “diaper.” He still has some kidney function. His feet are put on top of pillows and his heels float in the air so there is no pressure on them.

I am back in bed with Alan and say, “I love you.” He can pucker his lips and mouth, “I love you” back.

Alan’s eyes are closed. I ask him to blink (with his eyes closed) if he is comfortable, and he is able to do this. He moves and squeezes his eye lids.  Alan’s eyes are closed, and it seems he may be getting closer to going into an end of life coma.

I am now the only person to communicate with him. This is most appropriate at this time because of the intimate nature of our relationship.

Tonight, Alan’s lungs sound full of fluid. He is coughing more. The bed is propped higher. He snores with his mouth open.

I had been doing frequent water sprays and swabs up to this point. The swab could hold 1 tsp. of water. I begin to make the swabs less watery so he won’t choke on the fluid.

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