circles

The last two days of hospice were deeply marked by the kind gestures of the caring circles of folks who surround us.

Carl came by and lovingly made meals while Tad and I chatted separately with folks. Richard picked me up and shared with me his secret path down to a gorge and an incredible series of river rapids and tide pools where we soak in the San Lorenzo. Paula offered us some amazing Mexican food with a yummy apple cobbler. Ana dropped a little basket of organic vegetables on the front porch. Ron set himself up in the garden trimming, weeding and pruning for a couple hours. Lyse called from Quebec and let me blow off steam - then promised she'd call back each morning just in case.

The hospice social worker sat down with me for a generous two hours helping me devise some kind of work schedule for paid and volunteer workers so that I can let go of many tasks and simply be with Tad. The process alone was a painful one since it meant embracing our painful near-death reality with fresh eyes. Not surprisingly it also had me looking at some of my oldest, most deeply-rooted neurotic habits and how they're coming up like daisies in springtime.

In essence Tad and I spend our time in one of four different modes:

1 - Doing - Making meals, eating, getting meds, running to the store, answering the phone. This mostly keeps me going since Tad has developed a new overwhelming pain in his left leg that keeps him from being able to move around without wincing and moaning. Though - Tad being Tad he still insists on walking from one end of the house to the other rather than use a wheelchair.

2 - Talking about the situation - This is close to the above topic. We spend time talking about visitors, what time to do things, about pain, poop, pee, more pain and pills. We discuss whether or not to call hospice for help, what TV show to watch, what to make for dinner. This also includes talking about things like the "Transfer on death" order for the DMV, the unpaid bills or what to do with something after Tad dies.

Both of the above tend to happen easily and without a lot of thought. We're aware that Tad is dying but the focus is mainly on the little things of living.

3 - Checking out - This is generally done through some kind of electronic means. TV and DVD are the easiest for Tad. Internet black holes seem to work better for me (How many times can you research something new on wikipedia in a day?). Films are a great way to plunge into other people's story of tragedy and loss, joy and victory over evil. They take us out of our own thoughts.

4 - Talking about the big picture - We generally really take the time to talk about the big picture, the deeper look at what is really happening to us in two different modes.

4A - Positive - We find ourselves lying side by side, holding hands or caressing an arm and remembering how lucky we are to be alive. We kiss and feel the incredible love that has brought us this far. We talk about some amazing moment that moved us to tears from the day before or a phone conversation from someone who just found it. Curiously in the Positive department I would also add the tearful discussions about the unfairness of the disease or the fact that we will be apart.

4B - Negative - Once in a while we find ourselves in a dark place of anger or resentment - Tad can't seem to make meaning out of what's happening to him and begins to ask "why". Not in a way that calls for an answer but more to the world, to the gods as in "why me?!" or rather "WHY ME GODDAMMIT!!!"

The role of physical pain: what I've noticed is that when Tad is in physical pain it is much more difficult for us to be in 4A. We're grateful for hospice for finally having the courage to give him the level of narcotics he actually needs - instead of the dose that makes the doctor comfortable. But sadly after having one the war against a shoulder pain that has been dogging him for months, he developed an incredible pain in his lower left leg and the pain meds don't seem to get it.

As of this morning he is starting on a new medication that functions on the "neural pain pathways" (though I'm not sure what the other pathways are....seems to me all pain is neural at some point in its pain lifespan). He was beginning to get some relief already this evening.

He really would like to be more mobile before he starts to really go downhill. We've been told by several people that he will most likely get more and more tired, lose his appetite and energy then slowly just fall asleep til he dies. He seems quite determined to not do that yet. He still has about 80% of his usual appetite. He still gets up to go to the bathroom on his own. But today, unlike yesterday, his pain was so severe as to keep him from walking in the garden - despite the very attractive heat that has finally wound its way to Santa Cruz.

And one last thing....he IS eager to have a little pro-funeral fiesta. Doing anything on Saturday Sept 10? You may want to be in Santa Cruz for a little celebration. Tad and I figured we should do it sooner than later so that he is sure to attend.

PS There is one other way in which we manage our time - a fifth mode. It is often brief but it has to do with the arrival of beloved members of our circles. As soon as someone shows up and offers love or to do something loving we both start to cry. The mostly unsolicited demonstrations of love and concern almost always take us to a place of deep vulnerability and gratitude. What else could make us go so quickly to precious tears??