I am finding out moment by moment that I am capable of handling just about anything. That no matter how bad the crisis seems, we will get through it okay. It has been one whole day since dad came home. It has been a strange and trying twenty-four hours. For the most part dad is sleeping, but I will talk about a couple of things that have occurred since he came home that have been particularly stressful.
I must start with a disclaimer that my intentions for this blog is not simply to hang our laundry out for all to see, but to be true to the history of events. So pardon me if I seem to get too personal about things.
Another disclaimer of sorts, yesterday I wrote a rather lengthy blog post about hospice. I realize after looking back at it, that I might have come off as being upset with hospice or against hospice. I am not! They have helped a great many families in their direst times of need and I know that when all this is over, I will look back and have nothing but nice things to say about hospice. What I was trying to do was show that what we, as concerned loved ones, see this process differently than the more objective point of view that hospice has. I am human and I need to keep reminding myself that my emotions can get the better of me at times. I am going to relate something that happened today in my emotional way that again may come off as being hard on hospice. My expectations were not at the same level as their level of care.
Last night went reasonably well. Dad was awake for only about 10 minutes between 4 pm yesterday and 9 am this morning. When he awoke this morning, he started to panic. I don’t think he expected (or hoped) he would wake up, so it was a bit of a shock as the realization that he was still with us set in. He asked for some ice because his mouth had become really dry from his mouth breathing and because he is becoming dehydrated. I got some crushed ice and put a small piece on a spoon and put it in his mouth. He started to choke on it. I can’t recall ever seeing anyone really choke before, but his eyes got wide and he got that panicked look in them. It scared me to death. I thought, ‘Shit.. I just killed dad.” Fortunately it was ice and melted pretty quickly and he was able to recover, but that event shook me up. I was afraid of doing anything (and still am) that would cause that to happen again. Which pretty much sucks because all his medications right now are pills. Even though we are crushing them, we still have to put it in his mouth and it just scares me. Mom helped me get the sedative and morphine in him and after a couple more pieces of ice, some sips of water and a couple sips of Boost, he was back asleep.
A few minutes after 10 am this morning he woke back up and said he was in terrible pain. He was pushing his hand to his right lung and wincing. I got him another dose of morphine and he really started to become distressed. His pain level was at max. Now one thing you have to keep in mind is that through this entire ordeal with cancer, blood clots, pneumonia and all, dad has never experienced pain and has taken no medicines for pain. So when this pain happened it scared him and us. He wanted to know if he was having a heart attack. I told him no, that his pain was probably muscle spasms in his chest and that his legs had been twitching for a while now so he is having little spasms. I think he was relieved it wasn’t his heart, but it was still very painful and for the next 50 minutes he cried and begged us to make the pain stop. I had no way to do that, quickly anyway. I called hospice at 10:13 am and was on hold (“All agents are busy at the moment” sort of thing) for about 5 minutes. I finally got someone on the line and they said they would contact a nurse and call me back (“Ughhh… really?”) so I said thank you and hung up. Every minute or so I would tell dad I am working as fast as I can to get rid of his pain. That the nurse is going to call me back in a minute. Meanwhile, I am thinking how long am I going to have to watch my father be in pain. The damn pills aren’t kicking in fast enough. About ten minutes later someone calls from hospice and says he is a chaplain and my thought is “I need a nurse not a chaplain”. He explained that he wanted to check up on us and see how we are doing. Perfect timing. I told him we are having a problem and I needed a nurse right away. He said that he had some direct numbers he would call and we hung up. 40 minutes after my initial call, a nurse called and said go ahead a give him another dose of morphine. Gee thanks. That is going to help. I was being impatient and flippant, when I should have been more level-headed. She said a nurse was en route and should be there in just a few minutes. Finally after 50 minutes of distress, the three doses of morphine I had given him kicked in and he started to calm down and go back to sleep. You could tell by the wincing in his face that even though he was a sleep, he was still in pain. The nurse got there and she did some nurse type stuff. I explained what we had done and that I was very concerned about this event. Then she said something that really irritated me. She said, you should have been giving him pain medication before there was pain. Now, level-headed me would have said, “Yes, you are right. We goofed up there.” I was still being emotional though and had to go cool off.
Once I was more rational, we talked about things. We explained that he had not had any pain and that we didn’t foresee this event happening. She explained that now that he is having pain, we would need to switch from ‘as needed’ to a more strict regiment regarding his medication. She said that even if he is sleeping, we can crush up the pills and just put it in his mouth. That the medication would be absorbed that way. That seems creepy to me, but logical. We got through that little crisis and things are better now. She ordered an additional medication (methadone) that we will give him twice a day to help keep the pain in check if we are not Johnny on the Spot with his meds. He has been sleeping fairly well, but wakes up for a few moments at a time more frequently than he had been.
Mom is doing the best she can under the circumstances. She is holding up well and I am proud of her. She is trying to remain as positive as she can for herself. Both of us have to keep reminding ourselves that everything we are doing for dad now is not to make him better, but to make him comfortable. We are not doing anything that will prolong his life and that seems foreign. That is the reality of the situation though. It is important for us to remember this because we need to keep our expectations in check and realize that the care hospice is instructing is the proper care for dad right now.
I mentioned in my post last night that I had more thoughts. I have written up a post on that and may post it at some point, but I wanted to touch on one thing here in this post.
The time to talk with dad has passed. Realistically he will not be talking on the phone anymore. Even if you called when he was awake, it would be very difficult for you to understand what he is saying and would be difficult for dad to say it. If you are planning to visit, it will be with the rest of us. You are welcome to watch him sleep I suppose. If you are lucky he might wake up long enough to recognize that you are there before he goes back to sleep. I have disabled the door bell because that dang thing is just too loud 🙂 You are more than welcome to call me and get a personal update. I will listen if you want to talk about dad. If I am tending to him, I probably wont answer, but I will call you back. I hope that everyone who wanted to speak with him before this happened, was able to. If not, I am sorry.
Well I think that sums up the day. We shall see what fun stuff tomorrow brings!