Journey of Discovery

Even in this cocoon where we can talk about dying, and in which we interact with people who work in the field of actively helping patients come to term with their deaths, the information sometimes still seems scarce. Sometimes it's because we haven't read all the materials. I'm sure sometimes it's because we don't actively ask all the questions that we could. Other times I think it's because our helpers are not here to pump us full of knowledge, but rather to hold our hands and wait to answer our questions when we're ready to ask them.

We do have an excellent booklet from Hospice entitled "Gone From My Sight, The Dying Experience" which details the variety of changes which a person may go through in the final stages of their journey - well, I guess the slow protracted journeys in which the person doesn’t simply die without warning!

What I had gathered the last few days is that rapidly escalating pain and increasingly high temperatures (which don't appear to be infection related) can both be signposts along the way. This morning Robin's temperature was 103.9, the highest yet! I reviewed the most recent observations with Robin's nurse and we discussed these two escalating symptoms. The nurse described other things for me to watch for in the future, e.g. swelling of the extremities. As we talked, I decided that we should move out onto the back porch (into frigid temperatures) where I felt like I could ask questions more freely.

When I re-entered the house Robin wanted to know the result of our conversation. My old self wanted to hesitate, it wanted to say everything was fine and we've got things under control. My new self doesn't know how to do that with Robin anymore.

I told her what I'd learned about these escalating symptoms and that the nurse described them as signs that the disease is progressing.

For the first time in six months we cried together but without our characteristic laughing and joking. This time it really shook us to the core. The rest of the day there hasn't been any talk about bicycles.