Fraying Bits of Twine

It was now Wednesday. Daisy came to check on Megan again that morning. After examining her and asking many questions of us, Daisy now indicated that Megan's time was nearing an end. Although Megan was still eating and drinking some, her blood pressure was lowering and heart-rate was increasing. The splotching in her feet was now accompanied by cold finger tips and toes. She was still swallowing OK, but admittedly this had gotten more difficult for Megan, too.

When pressed to clarify, Daisy said she thought it would happen in the next couple days. We agreed to halt all other drugs except those intended to aid in comfort. Pain medications, anti-anxiety and similar would be continued, the remaining antibiotics had been discontinued earlier in the week, and the lactulose and lasix would be halted immediately. They offered no perceivable benefit at this time, and were difficult for Megan to consume and even harmful to her body and level of comfort.

When Daisy left she reiterated some instructions that we'd received earlier in the week: Be aware of some of the medicines in the 'comfort pack' provided by the hospice team. Don't hesitate to call for anything, especially if new symptoms arise. She then told us all that we were doing a great job and went on her way.

I would imagine in her training, Daisy was encouraged to offer this exact kind of feedback and encouragement she had been sharing with us. I was very thankful for that because I had never been more scared in my entire life and needed to hear and cling to any bit of encouragement that I could. Any indication that this was going "well", whatever-the-hell-that means, was exactly what I needed to hear as she went on her way.


At one point that day when only immediate family were around, Bill suddenly rounded everyone up and decided they should all go for some ice-cream. For the first time since before Megan's stay at the hospital, we found ourselves all alone in our home. I was immediately brought back to our serious conversation in the hospital. There was so much more that I wanted to say, but this time things were so different. Our conversation was labored, but Megan and I had each others undivided attention, and Megan was able to respond with perfectly placed nods, smiles and "I Love You, too" replies. I knew we were still communicating even if I was the one doing most of the talking. I crawled into the hospice bed with Megan and we held each other and continued to talk until the ice-cream trip was complete.

Many friends and family members came to visit that day and into the night. As had been the trend, it seemed with each visit that Megan got a little more inactive or even slept. Still, many loved ones were able to share time with her again and I know Megan appreciated that. There were still many smiles that made that obvious.

Later that night Megan stirred and sat forward. Exasperated, though with seemingly complete lucidity, she exclaimed "I Just want to be normal!"

Of course, we were all immediately on the edge of our seats or next to Megan to figure out exactly what she wanted.

"What can we do to make you feel normal?"

Megan was quiet again, and so we offered some suggestions. "What is more normal than watching some TV?"

Megan nodded and then Jocelyn suggested Jersey Shore and Megan nodded again, even more excitedly. And so, Mom Gray, Mom Lally, Joceyln, Megan and I all sat down and watched an episode of Jersey Shore. After we shared some much-needed laughs at the expense of those guidos and guidettes (and who wouldn't feel normal after watching that?), we agreed that I would spend the night with Megan from midnight onward, and in the meantime should retire to my bed for the next couple hours.

Once again, I kissed Megan, wished her all my love and retreated to our bedroom for what was probably some overdue sleep.