Robin is Home - in Hospice Again -- 05-26-2012

 
My last message was on Tuesday, 5-22-12, when Robin finally returned home from the hospital. Robin slept through the night that night. We have been through quite a roller coaster ride since that night. It has been surprising how much energy that the emotions and the stress have taken. When compounded by the lack of sleep, I think we have all felt total exhaustion.

I have had great difficulty finding an opportunity to write and send an update. Robin had a fairly constant stream of visitors this week, even though she has been unable to talk most of the time. Sometimes, when there are no visitors, Robin would awaken and want to talk. I have taken advantage of these moments, knowing there will be fewer each day. When there are no visitors and Robin is “sleeping,” I have tried to catch a few winks. In a nutshell, that is how the past few days have gone.

Our good friend from graduate school, Terry, arrived on Tuesday for a visit that was planned weeks before Robin got sick. He came directly to the hospital, visited through the afternoon, and helped us move Robin back home that night. The hospital loaded Robin up pretty well with pain medications for the ride home, so she slept through the night. A nurse from hospice came to complete the “intake” paperwork, admitting Robin back into the program, so I was fairly busy that night answering questions and signing papers. After the nurse and our visitors left, I slept in the living room with Robin, sitting up on the couch, but I did not rest well. Terry stayed with us in the living room that night, too.

Earlier in the week, I had planned to go to work on Wednesday, which would leave Robin with her mother, Johnnie, and her attendant, Connie. However, Robin’s hospice nurse said she was coming to evaluate Robin’s condition and determine what we needed to provide her comfort. So I decided that I needed to stay home to understand how to handle her medications and take care of her wounds. After the nurse left, I took a nap from about noon to 2:00 PM. When I got up, I found that Robin had awakened shortly before me, and she was talking and more alert than she ever was in the hospital. Although her conversation was fairly lucid, she clearly had some major deficits from her illness. Mom told me that when she first awakened, Robin asked her to get me so she could get up and walk. When they told Robin that I was asleep, she said, “Get Terry. He’ll help me!” Clearly, she knew through the fog of the previous day, that Terry was visiting and that he would help her, but she did not know that she had not walked for several years. After I got up, she confided to me that she did not recognize where she was; the house; the bed in which she spent the last few years; even the city or the year. It didn’t matter, though. Her speech was very slow, and sometimes she lost her train of thought, but it was great to be able to talk with her!

The “bath lady” from hospice came very late in the afternoon, but I had no idea the bath would be so painful for Robin. Due to all the movement, Robin required major help for her pain. Soon after medication, Robin fell into a deep sleep for the rest of the night.

Thursday morning, Terry left and I went to work. But before I left for work, Robin made me promise that she would not have to take another bath. When the hospice bath lady arrived early in the morning, Mom explained that Robin could not tolerate another bath, so Connie helped her clean and change Robin, but spared Robin the bath. Robin was awake most of the day. She continued to talk fairly well, but she was still very confused. After eating dinner, Robin went to sleep for a while.

Robin’s Mom was going to sleep in the room with Robin Thursday night, so she made up the couch and laid down. But at about 10 PM, as I was about to go to bed, Robin woke up and wanted to talk, so I stayed up with her. We stayed up and talked until 3:30 AM on Friday. Since it was just the two of us (maybe for the first time in days), I talked to Robin about how sick she was, and that we chose to take her home to make her comfortable because the alternative was surgery. Robin understood that she came home to die, and she told me that she appreciated my candor. The night’s discussion vacillated between tears and laughter. We discussed things she wanted me to do, music that she wanted (and did NOT want) at her funeral, people I needed to contact, where she wanted to be interred (in North Carolina, where her father is buried), etc. It was a long, very personal talk. I told Robin that the last time we stayed up and talked all night like this was many years ago while we were dating!

Since that night, (Friday, May 25th through Monday, May 28th), each day has been very similar. John, Johnnie, and I have been working together to keep Robin as comfortable as possible. The tasks required to take care of Robin are well beyond what I ever imagined I would need to do for her, and far beyond what I could put in this blog. Suffice it to say that I am glad that John and Johnnie are here with me. When Robin has waves of lucidity, we are able to feed her a bit and talk to her. I thought she might forget our long discussion from Thursday night, but she has not. Robin’s pain appears to be increasing as the infections worsen, and that means we must give her medications to alleviate the pain. Currently, it seems that the dosage required to manage the pain also puts her to sleep. Thus, our opportunities to talk to Robin are shorter than they were earlier in the week.

As I said earlier, Robin had a steady stream of welcome visitors earlier in the week, but (fortunately) the stream has reduced to a trickle of very close friends that we call “Our Texas Family.” I think folks have realized that that we needed a break, and have backed off. I thought about opening a “Care Page” for Robin so that folks can share their stories and thoughts with us (and everyone else) in a less-intrusive way. I will send information as soon as I figure it out. If you have suggestions, email me. (SOON)

That’s it for now. I still have so many things to do, including catching up on sleep.

As we usually do, we thank you all for your love, prayers, support. It is a great comfort to us to know you are there, even when we are separated by great distances. The signs of your continuing love and encouragement are helping us to get through this difficult time.

Please pray for God’s mercy for Robin and for strength for us, who are caring for her.

Love,
                  --- Larry, Robin, John & Johnnie