Our decision to move into hospice came slowly, after gentle discussions over the course of days.
You can go into hospice when they determine that you have 6 months to live. It means that your health care team changes to folks who are specially trained to care for terminally ill patients. Friends who have experienced these services tell you things like, "It's wonderful." "They do everything." Everyone knows about hospice, right?
Well, no, not everyone. Not the health care workers in the hospital. As we were getting ready to leave the hospital, the nurse came to disconnect this cumbersome two-box unit, handing from a pole on wheels, that beeped and blinked at times. Mike said something about being tied to a bed. "Oh no," she said, trying to be helpful. "As long as you can wheel this around, you can move around your house, you can go outside." We knew that this box was our life-line to the pain-management drugs that would make the next chapter tolerable.
The several days in the hospital had worn us out. Mike looked tired and drawn. He was really blue and with our decision, he started saying goodbye to everybody and anybody. "I want a few days with my son and then I'm ready to go." And, to be honest, from the way he looked, I thought he might be on to something.
When we got home...hospice was supposed to already be there but someone at the hospital had not yet told them we were discharged...we waited for the workers to come. The RN Hospice nurse entered, breezed around the room, retrieving this and that from a brown paper bag. Black marker BOLINGER branded the bag as ours. The last thing she took out was a small box about the size of a Walkman (google it) with tubes and wires sprouting out of it.
"Where's the pump?" Mike asked.
"This is it," said the nurse.
"You're kidding, that's it?" he asked.
"Yes, it's a nice, little compact unit."
The hub began to see that he could be mobile, go outside, go for a drive, go to the lake.
His mood began to rise. We got our instructions. We practiced. We settled in for the evening.
He has the main pump and a little emergency pump operated by a button. This give him one blast every 15 minutes, no matter how many times he presses the button. Our goal is to not need the button. BUT we should use it as we need. If the nurse finds that he is accessing it a lot, she will increase the level of the main unit
About 7, his pain began to spike. Even with button pushes, the pain increased. So, we called the on-call nurse who drove from Wabash (60 miles) to our home. She floated over to the bed, checked, charted, explained, called, and worked her magic. She increased the main pump.
Then, she reviewed with me what we need to do. A repeated part of instructions is some version of this: Call us, any time. We will come. Any time. We want you to be comfortable and to enjoy life.
To bed at 10 PM; perchance to sleep?
3:30 AM.....the hub awakened, for the first time. 5 1/2 hours of uninterrupted sleep. He has not slept like that for 2 years. He was so excited he woke me up, I who was also enjoying a longer sleep. I rolled over and grabbed several more hours. And so did he.
Today, it's like we've been new baptized. Refreshed. Full of energy.
I guess an up side of feeling miserable is that the contrast is so startling.
We've had many visitors, including one of my international students with his mother. He wanted to say good bye, and give me a gift and a hug. Mom thanked me for taking her son into my heart. (What a job I have!)
The Hub and the Son went shooting and then they took the car out for a spin. Today, life is as sunny as the sky.
We know that so many of you pray for us. Today, God gave us a wonderful day.