Bless Uncle Jimmy’s heart. He and Carol grew up together and were more like brother and sister when they were young rather than uncle and niece. He is taking this all extremely hard and I think he feels a bit helpless. He calls almost every day. It is frustrating for him I know, but, I really don’t have anything new to tell him each day. Uncle Jimmy and Carol are about the same age, just six months difference. I feel he thinks I’m not telling him the truth when I say she can’t talk. She is having a difficult time talking for long periods of time and her voice is quiet which makes it difficult for people to hear her when she is on the phone. She doesn’t answer her phone any longer because it is just too much effort. When it rings she hands it to me, Krista or Kelly, whoever is in the room at the time. She wouldn’t even talk to the nurse today when she called! I know Uncle Jimmy wants to talk to her but it just can’t happen right now and he is frustrated. We are all frustrated. We all wish this wasn’t happening but it is and there isn’t a thing we can do about it.
Last night she refused to take meds before bed. She woke up with a terrible headache and was convinced it was because we had upped the morphine. She didn’t have any morphine before bed last night so I suggested she was having withdrawal symptoms. That did not go over very well! Basically it came down to telling her that it was her choice – to breath or not to breath – only she can decide. Today, she has had nothing so far and is doing OK but she is also feeling the effects of the Ambien which she took at 6:30 this morning. We shall see how the day progresses.
I think she realizes that if she starts taking more morphine she will be more out of it and that means that she is closer to death. Unfortunately, if she doesn’t take it she can’t breathe. It is a catch 22. She told me day before yesterday that she was tired of it all and that I wasn’t fair. I agreed. Yesterday she told the nurse that she is OK with dying, she just didn’t want to feel like she was suffocating.
I am beginning to feel frustrated not knowing how to help her especially when one minute she says one thing and another she says something else. Kelly and Krista don’t see that part of it as much as I do because I am with her more. I know if they saw it they would be frustrated as well. It is so hard to watch, hear and deal with it each day. The nurse tells me that it will only get worse. Her lung capacity is quite low in one lung and about half capacity in the other one. Honestly, I’d rather see her die than to watch her suffer. Kelly is very gracious and willing to do whatever he needs to do to help out, he just isn’t here much. Krista is a saint. She does the drains which I can’t stand. She said it is one thing she can do that she knows makes Carol feel better and so she likes to do it. I’m very glad!
I am tired, frustrated, and semi-angry and feeling isolated. I occasionally go downstairs just so I can cry for a bit. Although we have a TV and a computer upstairs, I feel very disconnected from everyone else. Carol does not like to be left alone. Even if she is sleeping and I go into the other room, she calls for me the second she wakes up. Just knowing someone is in the room with her is important. I understand her not wanting to be alone, it is scary but, it is hard to have someone with her 24-7, especially when she seems to only want Kelly, Krista or me. If family was closer and could help it would be nice, but, they aren’t so we deal. Sometimes she is hot and wants a fan, sometimes she wants meds, sometimes she wants to talk and sometimes she just wants to watch TV or a movie. She just wants someone there when she wants something, which I totally understand, and when she wants something she wants it five minutes ago!
Krista and I went to get a pedicure and manicure today. It was nice to be out for a while. We also went out to eat dinner along with Kelly. Stacey and Sadie came and sat with Carol while we went out to eat so she wouldn’t be alone. She was NOT happy about that at all and I paid for it with her grumpiness when we got back. We were only gone for about an hour!
My mind is a whirl with thoughts. Reading back over this entry, it seems really disjointed, of course I wrote it off and on throughout the day today. Oh well. Thoughts are thoughts. Sleep is looking very good to me tonight. I hope it happens.