When I got to the Hospice, John was sleeping. He spent most of the morning and early afternoon sleeping, although he roused easily and talked whenever the nurses did anything to him. Once or twice he started, tried to sit up and looked very frightened, but then he went back to sleep. I don't know if it is from his dreams, or pain. He was having a few hallucinations but nothing like the last few days.
It was just nice to see him at peace and pain free.
At about 3pm he woke up and asked for some ice cream. He only ate 4 teaspoons of it but seemed to enjoy it very much.
His speech was a little clearer and although it was still difficult, I could understand about 25% of what he was saying. I realized today how tiring it is for me to keep straining to try and hear and understand him.
He was good until 4pm when the muscle spasms began. I asked for some pain meds for him but they did not seem to help much. They went on until 5:30 when he had more pain meds and this time they took effect.
I finished reading him Michae J Foxes book and then he decided to sit up in bed and watch the TV.
He seemed quite lucid and able to think clearly and tell me what he wanted.
The legs spasms started up again at 7:00 pm but they gave him the pain killer right away and he was feeling good almost immediately. Soon he had a few more spoonfuls of ice cream.
In fact, he was doing well enough that I came home early tonight, before they even put him to bed. I am having a "respite".
The care was better today - they did provide the protein feed for me to give to him, and several volunteers were around to make sure we had everything we needed. One showed me how to make coffee in the coffee room. The major difficulty today was that they are still not giving John his Parkinson's meds on time and so for the second day in a row I have ended up "butting heads" with the nurse over the timing of the meds. While I was there, they only gave him his meds on time once. The rest were anywhere from 15 - 30 minutes late.
I tried very hard to just ask nicely for the meds to be given on time because it is so important - and because I cannot give him the protein feed at all when there is not 45 min. between the meds and the feed.
I reiterated that if they would just bring me the pills, I would gladly give him the meds at the proper time if they were too busy. I was told it was against Hospice policy to have drugs sitting out. So I told her if they would just have the pills ready, I would come to the desk and pick them up, crush them, dilute them, and give them to him without them ever just sitting out somehwere. So they are "thinking" on that.
The nurses at the hospital had no problem with just bringing me the pills when they knew they were going to be due at a busy time, and I would give them to John at the appropriate time.
The doctor did not come in today so I do not know what changes she has made in the meds to cause the improvement - but whatever it was, it is working.
We had a lovely Spring day today.
In spite of a few rough times, the day was so much better that I am giving it a one thumbs up.
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