Saturday, May 30, 2009

Getting even weaker

I can't remember the names of the two people from the Arlington program that we met with on Thursday afternoon, but we had a good discussion about the program and what they could offer us. Julie has been feeling that we haven't been getting the level of service that Daddy got from his hospice program, but I'm not sure if I agree with her. I do think, though, that if I get services from this program there will definitely be a more personal relationship, as they will be serving a maximum of five clients (and right now they have only one). Julie thought it would be a good idea if I could get my nursing visit first thing in the morning, which is usually my worst time of day, so that maybe they could come up with some ideas of how to deal with some of the symptoms. Julie, Marty, and I will have to discuss whether to make the switch, and we told them we'd let them know next week.

Earlier in the day, Judy had helped me to pack, and once they left we got the car loaded up and went to the hotel, which is near MIT. We had a little while to rest and relax and then went down to the lobby and found the HSRI people, who were having some wine before dinner. Both Marty and I had steak, and when dinner was over I was quite tired. I lay down on the bed and fell asleep while Marty got things set up. Amazingly, even though I thought I'd been quite careful to pack all the right equipment, I still didn't have one of the little plastic connectors that connect two pieces of tubing--I had something that I thought was one of them, but it wasn't. We were able to manage without it, but it was quite annoying! The next time the oxygen guy comes I'm going to ask him for about a dozen of them.

Unfortunately, when I woke up in the morning, I was having a terrible day, and ended up falling back to sleep and sleeping most of the morning. I didn't feel up to getting dressed until about lunchtime, so it wasn't till then that Marty and I went downstairs and found the group, which was in the middle of lunch, and they got us some menus so we could eat too. Valerie announced that they had decided to give me a Board Leadership Award, and I was presented with a lovely glass plaque.

After the meeting got started again I lasted only a little while before getting very tired, and asked Marty to get us checked out of the room and get our stuff into the car, which took a ridiculous amount of time, so that when we got home we were both exhausted.

Again, I slept most of the evening and then in the morning. Marty is out with Donna helping her with some errands. I made a sandwich for lunch, and being out of bed just long enough to get the plate, the bread, and the chicken salad out of the refrigerator was exhausting.

I don't like being alone; he called a little while ago and said he's on his way home. Meanwhile, I've developed a very distressing new symptom, and have peed in the bed a couple of times (fortunately mostly on the pad, but still emotionally difficult). It may be time to start using adult diapers, and I don't like that idea at all!

1 comment:

  1. Most of us have to deal with that Judi. It is perfectly normal under the circumstances and in NO WAY reflects on your value as a human being. It gives us more dignity to deal with the reality of it than to try to ignore it. I often think we tend to return to the way we were at the beginning of our life.