VSED in 9 1/2 Days

April 9, 2013

Phyllis asked: “Is there anything else we need to say to each other?” Alan replied, “No.” Then I said, “We showed our gratitude every day in the way we treated each other.”

This was the night before Alan was going to start the VSED process. The hospital bed was going to be delivered the following morning. The caregivers would be better able to take care of Alan’s physical well-being in a single bed that could be adjusted as his needs changed. On this evening, I was sitting on Alan’s double-size bed. It was elevated and had built in drawers under the bed. I was literally cleaning out the drawers and putting his clothes in piles that would soon be given away. The situation was so absurd that we broke out in hysterical laughter. Laughter was the trademark of our relationship, and it felt so good to laugh together. We hadn’t laughed in months.

I had invited a friend to stay in my house and support me during the first week of Alan’s VSED process. On the evening of April 9th, my friend and I set up a beautiful altar in the living room. This was adjacent to Alan’s bedroom. We lit candles and had special photos and memorabilia from Alan’s life.

Alan’s last meal is today, and he chose two small scoops of vanilla ice cream. He had eaten no more than 500 calories for the previous five days because the doctor told him that it would make the VSED process easier.

On this evening, Alan went to bed. Other than going into his adjoining bathroom for as long as he could, he stayed in bed for the duration of the VSED process. I put away all visible food in the kitchen.

Wednesday, April 10, 2013 – Day 1

Up until the fourth day, when he was getting more uncomfortable from dehydration, he was quite alert.

On the first day, Alan stopped the Ritalin medication that had been prescribed to give him short bursts of energy. He had been taking Ritalin three times per day and still slept at least sixteen hours of the twenty-four. This amount of sleep had been going on for the previous 18 – 24 months. He had stopped all medications a couple of days earlier. We expected Alan to sleep a lot right from the beginning of the VSED process. That did not occur during the first few days. Up until the fourth day, he was quite alert.

He was more alert because his body was going into ketosis. Simply stated, he had ketones in his blood. Ketosis occurs when all of the body’s ready reserves of glucose are exhausted. It means that the body is metabolizing fat. During ketosis the person is burning ketones in the brain instead of glucose, and this shifts the way the brain is fueled. It also gives the patient a distinct breath odor.

In the early days of the VSED process, and while he was in ketosis, Alan was awake more hours and more engaged with his surroundings and a little more talkative than previously. Until we understood what was happening physiologically, his sudden clarity was confusing to those of us who were around him.

Our doctor visited Alan at home today. He told the doctor he wanted to be as alert as possible throughout the process. He was taking some hydrocodone at the time due to jaw pain from previous dental work. On the first day, he stopped the hydrocodone and started with .1ml of liquid morphine. This was less potent than the hydrocodone that he had been using for about ten days for jaw pain.

We had two caregivers throughout the process, each working twelve hour shifts. Our first caregiver started at 8pm on April 10th. Alan was in the bathroom when she arrived, and he went through his teeth cleaning routine thoroughly on his own. He was conversant and alert. He didn’t complain about hunger or thirst. He went to sleep at 9:15pm.

We had a baby monitor set up so the caregiver could hear him. At 2:30am, he used the urinal while he was in bed. He was moving his mouth/jaw so the caregiver asked him about his comfort level, and he said he wanted a small dose of the liquid morphine (.1 ml). Then the caregiver swabbed his mouth to give him a little moisture.

Not eating did not cause Alan any discomfort. He never complained of being hungry.

Not eating did not cause Alan any discomfort. He never complained of being hungry. The dehydration did cause discomfort. Throughout the VSED process, the caregivers and I routinely did many things to provide comfort to minimize the effects of dehydration. This included routine swabbing or spraying mists of water into his mouth, continual use of a humidifier in the room, frequent lotion on his skin and salve on the lips, as well as drops for his eyes. His bedroom window remained opened a few inches for fresh air.

Throughout the process, the caregivers changed Alan’s clothing as needed, kept his bed fresh, turned him when he could no longer do this himself and kept him clean and washed.

Continue to Next Page