Thursday February 2, 2012
It’s already 9:30 am. It feels like most of the morning has passed. I spend more time waking Dave, getting his pills, Ensure, tidying up than needed in past months… our new routine. I find myself in more of a decision mode, “do this” or “that” rather than “do you want?” Like taking over the divvying out of pills, it perhaps is better for us both to have a leader. I guess that’d be me! Dave is apparently in agreement to hand over the reins.
I have several narratives in my head piling up, indicative of the amount of changes going on in both Dave and me. Sticky notes dot my desktop and notepads reminding me of statements, ideas or things I think I don’t want to forget about this journey in its profoundly personal way and/or in consideration of the generically human experience of life and death.
Here’s some highlights from the last couple of weeks for which I could probably write an entire post on each:
- Dave did not want to be left alone last night. Leah was here for her regular visit and to catch up on a lost episode of Real Housewives. Seems the DVR, which is in the family room, skipped the recording this week so we didn’t have it on Monday. It happened to be repeated last night while she was here. Dave offered that we could watch it upstairs in the bedroom with him. He just wanted us near. We did. I, too, have had distinct moments of not wanting to be alone recently. I haven’t quite been able to express the need and place from which this derives, but it seems more primal than just having someone nearby. It’s a desire to not be alone or to witness the time together. Visits and sitting together is increasingly more important – to all of us family members I think.
- Anxiety is a new vocabulary word for Dave. In the past month he has discovered that an anti-anxiety pill can be very helpful in some of the circumstances and procedures we find ourselves. It came in handy to name and respond to having anxiety during the snow storm. He knew anxiety when he had Hodgkins cancer in anticipation of the chemo treatments actually, although I don’t recall addressing it that way. It takes some adjustment on my part to realize that Dave just might be fearful in the face of these times, and in spite of him saying he is not afraid of death per se. (Who wouldn’t be afraid of dying?) Nonetheless, having anxiety isn’t a term I would normally associate to his demeanor and surprises me in some ways. (Understandably, anti-anxiety medicine is one of the items found in the hospice “welcome” kit .)
- I need laughter and exercise and self-care. We all know this but having missed a few weeks and now managing to return to my scheduled work-outs and friends this last week, I am revitalized for the extra duties of care. I especially look forward to watching TRU-TV’s Wipeout on Fridays, a dumb show of adults willingly subjecting themselves to a padded obstacle course guaranteed that participants will bounce off big balls, or be swept into an oversized dish of soapsuds or punched in the face by automated boxing gloves and go ass over teakettle along the route. But for some sadistic reason it makes me giggle aloud for a couple of mindless hours every time. Laughter is a breath of fresh air. Plus, it gives me notice that it is the weekend and we’ve made it through another seven days of life.
- After we broke the ice in the conversation specifically about Dave’s end of life, we have carried on a couple more deep talks these recent days. In our second dialogue, I asked Dave directly about if he had envisioned what his last minutes might look like, if he could describe his thoughts, fears or best scenario. I suppose I want to know how to fulfill the ideal end of life moment for him, if possible. I also want to know how a dying person thinks, in a strange curiosity. His answer was “I don’t know,” a very common answer lately. “That’s how far away I am and how close I don’t want to be.” I think of this moment as pivotal in us confronting his death aloud, and perhaps the start of Dave’s search internally. The unintended result of the conversations are his having some feelings of depression (one conversations began as his “feeling pitiful for himself.”) but also some significant talks about relationships.
- Our conversations led me to one morning’s thoughts on being prepared to die. Dave, of course, reiterates that he is not ready to die yet. Then, I had an insight that I was prepared for Dave to have died but not for him to die. (In parallel fashion to one of my favorite quotes from Pearl S. Buck “I hate to write; I love to have written.”) I can see my way to envision my life a few months after Dave’s death, but I am not prepared for his actual dying and death. Nor is Dave. I believe that is what we are doing at this moment. For him. For me. For his kids and extended family. (It’s odd to think this is taking place a full year after the obvious threats to his life began.) There are the logistical, the emotional, and the actual physical aspects to consider. Interestingly to me, when I shared this insight with Leah she offered the perspective of feeling prepared for him to die, yet unprepared for how she may cope after he is gone.
- The will to live. Such an amazing thing is the brain. Dave’s sense of curiosity and desire for life still prevails, and I’ve no doubt the reason he is still with us now. After watching the documentary on the 1930’s Riding the Rails with Denise and Chuck, Dave’s wheels began turning for a new lecture. You can take the man out of the classroom but you can’t take “Teacherman” out of Dave. Sadly, it was clear he was tired and the brilliant lecture did not burst forth as it would have in bygone days.
- We’ve officially requested two visits a week from the nurse. Yes, my in-between calls have increased. There are many more smaller things to attend to and ask questions about on Dave’s care. I so appreciate the access our nurse and support hospice provides. It’s a comfort thing for us both. Nurses and doctors and medical persons still talk to Dave in terms of seeing him next month or in a couple of months. What I make of this use of language is that there is still no impending sense of immediacy in his demise. And though Dave doesn’t appear to be in a stage of approaching death soon, his health changes and slowing body warrant the additional attention. How confusing is that?
- I get these ideas in my head that this journey, and the last moments in particular, are suppose to be played out in a certain way – the idealist, peaceful, family gathered around his own bed, kumbaya moment of last breath and statements of love, befitting for a setting sun. I really have to come to terms with the fact that we may all have to stay fluid in the last weeks, days and even hours, whenever they arrive. Can we have the perfect ending? Perhaps, and I certainly won’t dismiss the possibility. But I must also allow that we might need to bring in a hospital bed, his last breath could occur in the middle of the night as I sleep next to him or that anything could interfere medically or physically to change the dynamics of the perfect story. We could linger in a state of dying for a long time, or find he has left us suddenly. Really, we just won’t know until we get there.
We have now clearly moved into a changed state of Dave’s health as he loses the ability to function independently. The dominoes of Dave’s health continue to fall in ever-so-slow motion as he described his journey last April. Sometimes it seems like the edge of one domino just barely pushes the next over, followed by a quick downing of the subsequent bricks on a rapid run. I don’t know which way the set up will take us or if something will get in the way to change how the remaining dominoes fall. But for now, at least there are dominoes still lined up.