May I Have This Dance...

Saturday, August 27 was Megan's first full day home. A smile-inducing breakfast of assorted fruits and an electrolyte-heavy juice drink started the day off well. These would be the staples of Megan's diet for the next several days. Although frequently tired and not very talkative, Megan was responsive, eating and in good spirits.

The weekend hospice nurse came to see Megan to admit her and establish her medical file with the hospice care team. She explained that we could expect to see her regular nurse 1-3 times per week, depending on how symptoms progress. Additionally, a nurse would be available 24 hours a day to answer our questions by phone should anything arise. If necessary, as determined on the phone, a visiting nurse would be just a moment's notice away to come to the home.

She went on to clarify that ultimately, we, Megan's caregivers, would be the ones to handle the majority of Megan's needs, and the hospice team was there to assist in making that possible.

She also described the other members of the care team that were available to help us support and keep Megan comfortable. In addition to the regularly visiting nurse, we could expect assistance from each of the following:

- Physical Therapist: available to assess Megan's ability to move around the house, and suggest potential movements or exercises Megan could do to make such movement easier.

- Social worker: available for support and counseling needs for both Megan and her family members.

- Chaplain: available for prayer, and religious or spiritual counsel for both Megan and her family. Nancy would ultimately preside over Megan's interment ceremony and was a wonderful source of comfort throughout these final days.

- Home Health Aid: available to assist in giving Megan a sponge bath or shampoo, help with light cooking or cleaning and perform other, similar tasks around the house. We received a visit from an aid later that day, and Megan received a sponge bath. This was especially welcome because Hurricane Irene would be here tomorrow and could disrupt visits early in the week.

The inter-disciplinary hospice team sounded very thorough and the support, help and knowledge was welcome and needed.

After completing paper work, our attention turned to Megan. The nurse asked how Megan's diet had been today. We described a quantity of strawberries, watermelon and honeydew melon that Megan had enjoyed earlier that day. The nurse asked about fluids. On the glass in front of me, I gestured to a point on the full-side of the glass.

"That's great. That's more than most of my patients eat and drink in a week."

I was elated. While I certainly knew Megan's diet was greatly diminished, I had no concept of what a reasonable amount of food and drink would consist of. The nurse just told us Megan was eating and drinking well, and with the help of the soon-to-start-working Lactulose, I was sure there would be more good days ahead of us. I was sure.

While the Lactulose had yet to start working, the Lasix, intended to exercise Megan's kidneys and potentially draw some of the excess fluid in her abdomen out of her, was working overtime.

With assistance, Megan was able to get out of the hospice bed and walk to the bathroom for the first few days at home. I would stand in front of and facing her, and Megan would wrap her hands around my neck while I steadied her with both of my hands on her hips or waste. Together we would shuffle around the house like a couple of kids at a Junior High dance, just much slower.

These "last dances" we engaged in are among my most cherished memories of these days. Facing each other, I could look into her eyes and we'd smile at each other. When a break was needed, I'd take her full weight in a hugging embrace and let her catch her feet or breath. As we moved in tandem, I'd offer words of encouragement, tell her how much I loved her, and promise I had her, and that we were almost there.

On one such trip, Megan wanted to stop and sit on the couch. I helped her down and then sat down next to her and put my arm around her. Exhausted, she collapsed into my embrace and leaned her head on my shoulder. I didn't know it at the time, but this would be the last time we would hold each other in this familiar and regularly occurring expression of love that often accompanied watching TV or a movie.

While on the couch, Father Tom, a family friend and priest that ultimately presided over Megan's funeral, came to visit. We all prayed together and after performing the sacrament of the Anointing of the Sick, Fr Tom asked for a few minutes alone with Megan that he later shared with us.

Among other things, he told Megan that she was on her way to a beautiful place where she would be safe and loved and out of pain - Heaven. God would care for her, and have a place for her ready and waiting, when the time was right. She nodded and confidently whispered "Yes, I know."

There were many other visitors that day that Megan enjoyed, although each visit made her more tired than the one before. For the latter part of the day, Megan was very quiet and slept for much of it.

When nightfall came, I kissed Megan and went to spend the night in our bed for the first time in over a week. Mom Lally would sleep on the couch next to her tonight, as I had done the night before, and so I wished Megan all my love and told her I would see her in the morning.