Thursday, April 29, 2010


I need more blogs to read.

No, not more blogs, just more posts of blogs that I already know and love.

Tonight is a very hard night and reading blogs is one of my coping mechanisms (which I've been wanting to write a post on).

Yesterday I had a wonderful birthday. But when I came home at the end of the night, I knew Dorothy had had a very rough day. I read the notes from the caregivers and the nurse and I talked with the caregiver who was here (who is also a friend of mine). The short version of the story is that Dorothy was just EXHAUSTED yesterday, and part of this is because of respiratory distress. It takes SO much energy for her to do anything at all. She had had her oxygen turned off most of the day, at her own request, and when the evening caregiver checked her numbers her O2 saturations were 78%.

Today was another rough day for her. She was awake this morning at 7:30 (I know this because I was still home because I slept through my alarm) and she did not sleep all day long. This is incredibly unusual for her - she usually sleeps in until about 10am and takes at least one or two naps during the day (some of them several hours long).

At 4:30 she said she felt like she had rattling in her chest and she asked her daytime caregiver to call Hospice. Amazingly (which I later decided was COMPLETELY God), her regular nurse was still on the clock and was able to come over. She listened to Dorothy's chest and said she didn't hear any rattling at all, just the grunting she's been having for several days (again, respiratory distress). Her nurse asked her some questions and Dorothy indicated that she wanted to write on her board. Between the two of us it took us no less than thirty minutes to decipher what she was writing. She wrote a couple of fairly disturbing things but she was DETERMINED to write them. We eventually made an alphabet board and by pointing to each letter we were finally able to figure out what she was trying to say. I was in tears by about halfway through because we were having SUCH a hard time figuring anything out. And I honestly think that her lack of oxygen today was making her a little loopy. I would ask two different yes/no questions, ONE of which had to be yes and the other which had to be no, and she would say no to both. Example: Is what you need on this picture board? Yes. I would point to every. single. picture. and none of them were the right one. But I would ask again if what she needed was on the board and she would answer yes. People, we did this four times until I completely lost it.

The nurse called Heather tonight (even after Dorothy adamantly said she did NOT want Heather to be called tonight - we made that executive decision) and she is contemplating coming down tonight.

Dorothy's nurse said the bottom line is that Dorothy is now suffering. We have all thought for several weeks that she has seemed like she is suffering (her quality of life seems low to me) but DOROTHY has not felt like she is suffering and she is the best judge of that. However, after tonight's conversation between Dorothy and her nurse and several physical indicators (mostly the resp. distress), it is clear that she IS suffering, whether she will admit it or not.

It's hard to write this because it's the Internet so I want to be vague, but at the same time, my friends and my journal so I want to give details.

Long story short, I am kind of an anxious mess, but am starting to feel a little better. At Dorothy's approval her nurse gave every-three-hour instructions for Morphine and an anti-anxiety med in hopes that this would help her to relax and ease some of her pain (pressure sores and tense body). She FINALLY fell asleep around 7 and I am tiptoeing around to avoid waking her because I know she desperately needs this sleep. And I desperately need for her to not ring her bells every 15 minutes.

Overall, I'm ok. I know this because I felt ok with telling the neighbor that I was alright to be alone and that I would call him if I needed anything. It's comforting to know that he's right across the street. I also know this because Steve will be here any minute. He was planning to spend the evening with Jordan when he got off work because we are going away for my birthday celebration this weekend, but after hearing how the last two hours went, he quickly decided that he needed to come over. I will probably send him home after an hour or so because Jordan should have some Daddy time before we take off for a day and a half.

There's no closing for this post. Heather might come down tonight. Dorothy is finally asleep. I am hungry but don't feel like eating (I did eat a half pint of raspberries in one sitting so I'm not going to starve). I would love to pull out my favorite quilt and curl up with a chick flick on TV but I don't want to turn the TV on because I don't want to not hear her if she needs me.