Sunday, July 5, 2009

The rest of the weekend

On Saturday, once we got to the festival, we had decided I should call hospice and speak with the nurse on call and explain the problems we were having with the bi-pap and the portable concentrator, and ask whether, under the circumstances, it was better to go with just the oxygen or just the bi-pap. The first nurse I spoke to was very understanding, but, even better, she said that Lauren was the other nurse on call, and in a few minutes Lauren called me back. She asked whether I used the bi-pap because of snoring or sleep apnea, and I said that it was neither, but that when I slept in the lab they determined that my oxygen levels dropped very low when I was asleep. She said that in that case I should use just the oxygen.

After that, I turned the ringer on my phone off, since we were listening to live music, so it wasn't until several hours later when I turned it back on that I found a message from Lauren that she had called the oxygen company and arranged for them to deliver a full-size concentrator directly to the hotel (they have a branch office in or near New Bedford). I was just so impressed with her taking the initiative on this and making sure I had everything I need. We had to make a couple of calls back and forth to the woman from the oxygen company to work out the logistics, but when we got back to the room that evening the concentrator was all set up, and she had left a message about coming to pick it up in the morning.

Once we had gotten things recharged on Saturday, we went to listen to some more music, and Marty said that it was clear that we had to keep the charging cords with us, since we couldn't count on the batteries to last through a whole day's activities. We were able to listen to several performances, and when we headed back to the hotel it was pretty late in the evening. We parked, and I told Marty I had to go to the bathroom pretty badly, so he said to go ahead and he'd get some things together and come in after me. I got inside the door of the corridor where our room was, but after just a couple of steps it became very clear that I wasn't going to make it in time and I started to pee. It was such an awful, exasperating, and humiliating situation, and for some reason I decided it would make less of a mess if I lay down on the floor, which was carpeted. I knew it would scare Marty to see me lying on the floor but I figured as soon as I heard the door open I would quickly tell him that I was all right. But when he did come in I could hear him talking on his phone (obviously to Donna) and when he saw me he said "Oh my god" or words to that effect just as I was getting out "I'm all right, I'm all right." I guess it took him a few seconds to figure out that I really was all right, and he told Donna he'd call her later, helped me up, and got me into the room where I took off all my wet clothes and cleaned myself off. I guess the time has come to bite the bullet and start wearing adult diapers--apparently, when I exert and start gasping for breath this causes my urinary sphincter to release. I hate the idea of wearing diapers, but I guess it's preferable to the alternative.

Despite the bad start, we managed to have a very pleasant evening, with lots of cuddling and affection. Marty is such an amazing person and I feel so lucky to have him in my life. He just seems to take in stride all the various kinds of unpleasantness that come along with being so sick, and to let me know in so many ways that he still sees and loves the person I still am underneath it all.

For some reason, I didn't sleep well, waking up a number of times, and when I opened my eyes again at seven thirty Marty was already showered and dressed. He had realized that he had never charged the scooter battery, and couldn't find the charging cord. He went out to the car but it wasn't there, and then I remembered that it was in my suitcase, since when we were leaving the house Marty realized it wasn't packed and I had stuffed it into the top of my suitcase, so that was one little mystery solved. We went to breakfast, and I called Cindy, the woman from the oxygen company, who said she was just a few minutes away. I told her she could find us in the dining room, and said she'd recognize me because I was the person with a cannula in her nose!

We were hoping for equally good luck as on Saturday with parking near the festival site, but instead went around and around for probably an hour or so. We both think that a festival this size should pay some attention to the issue of handicapped parking, but they don't. There are a few handicapped spaces on the street, but all of them were taken. There is a municipal garage, so we checked that, but since the elevator was broken we were limited to spots on the lowest level, and there weren't any available. We even tried calling the New Bedford Police to see if they would be helpful, but they weren't. Finally, in exasperation, Marty parked at a hydrant, left me sitting in the car, and walked down to talk to the people selling wristbands, telling them either he wanted a refund for Sunday or they should find us a place to park. Fortunately, he found a very nice man who said that a nearby bank parking lot might be available, and that he personally would go stand in a spot until we arrived!

Marty had packed a portable cooler with drinks, which for some reason he decided not to take on Saturday, so we ended up buying some quite overpriced drinks. So today we decided to take it, although Marty was not looking forward to lugging it around, but when he set up the scooter I asked if it would fit on its platform, which it did, quite nicely, saving Marty quite a bit of heavy lifting and saving us lots of money on beverages.

By this time, we had missed one of the performers that Marty had wanted to see, but we did end up seeing a number of enjoyable performances, and I was able to time my bathroom breaks so that I didn't run into any problems in that department.

The first performance we attended was in an indoor auditorium (most of them were outdoors, in tents), and when my concentrator started beeping we turned out to be seated right near an outlet, so Marty plugged in both the concentrator and the battery pack, and that got us through the rest of the day. We're going to have to have a talk with the oxygen company about all of this equipment, as it doesn't meet all of our needs.

At another performance, held in a tent, we noticed a bunch of picnic tables just outside the tent, along with a Middle Eastern food vendor, so we could still hear the music while we ate some yummy giro sandwiches. Lucky for me, there were also porta-potties in the same general area.

We left for home around seven, tired but happy, and very glad not to run into any serious traffic, considering it was the end of a holiday weekend. When we pulled into the driveway, Marty told me to go straight in and see if I could corral the cats in the bedroom, so he could bring stuff in from the car without having to worry about doors being open and cats getting out. But the minute I got into the house I headed immediately for the bathroom, and wet my pants again! I cleaned myself up and got out the package of adult diapers that Lauren had left here weeks ago, so I guess I'm reconciled to this further descent into invalidism.

1 comment:

  1. Oh Judi, I feel your pain! Still, I imagine that on days when you're staying at home, you probably won't need the diapers, unless, that is, you are having an infection which leads to urgency.

    Glad you had a nice weekend filled with music, and happy for you that you're comfortably back home. Stay hydrated! It may help.