Monday, April 11, 2011
Too many thoughts again. I want to take a break from writing sometimes but all that does is pile up the stories in my head. I have friends tell me that the blog makes them cry and I sometimes feel bad about that. This is not my intent. Yet, I have become addicted to shedding my tears and words on virtual paper… in a good way, for me, at least.
I wonder when someone goes from living with cancer, or surviving cancer, to dying of cancer. What is the tipping point? We are, as a family, in the waiting room: anticipating death, hoping for longer life, seeking comfort, gathering memories. Going on hospice service is a certain indicator, but emotionally speaking I believe there must be some other imaginary hurdle to cross.
Quality of Life. Those words that probably means something different to each of us. The important definition belongs to Dave, for we – family, friends, medical team – can only hope to deliver his end of life experience in the manner befitting him. Perhaps the actual end of life, of breath, is the only line to cross. We may be present for his last breath or not, but this will be his moment alone. Up until that time we must continue to talk and ask and redefine what quality of life relative to today.
I can’t help but think that lying in bed all day watching TV would be boring. I feel restless for Dave whether he does or not. I get stir crazy at times. I find myself walking the grocery or store aisle slowly and systematically for no particular reason other than just to have a change of venue, to converse more superficially in my head. I try to get away from the heavy emotional thoughts. Yet, even there I think in terms of me, then us, and the changes. I cannot predict what will taste good to Dave on any given day. I never know if I am making a meal for one or three or five, or if food will arrive at my doorstep neatly packaged in Gladware. I play the game of finding the best deal comparing the prices on everything, anything to distract my mind from the emotional to the logical. I am momentarily suspended in time.
Dave must be processing his time differently. He hasn’t been able to articulate it for me. He is not afraid of death. I know that comes from his having had a fulfilling life of work and love and play. He says so. That doesn’t mean he is ready to end his life. I’ve no doubt he would go on forever if he could. I project there is a change of his consciousness for he says he falls to sleep without knowing, only to awaken and see the clock has moved forward a couple of hours. There are times I look into his eyes and feel a distance between us. There is a quieting that I can’t explain. We are far from having said all we need to say. Regardless, silence prevails at odd moments.
Fortunately, this is not the same stage of impending death I have seen and felt as a volunteer visiting with some hospice patients. I believe we have significant time before we face that moment.
There is much in the positive column for the quality of his life right now. Pain is still minimal. He does not require oxygen. He is capable of all aspects of life: decisions, play, conversation, interaction. He can care for his personal needs. He can get out of bed. He is eating. He is himself.
His body is dying, and we can’t stop it.
I was struck by a thought given to us about life and death: rarely does one leave this earth with the body and mind completely in sync. Either the body gives out or the mind gives out first. Few truly have the body and mind ready to go at the same time. Clearly, this is Dave’s body going first. He is given warning to help his mind also get ready. Those of us who love him also get this opportunity.
I cry for those who live with and /or care for a family member whose mind goes first, the most difficult and obvious being Alzheimer’s Disease, but there are also brain cancers, stroke, and other dementias. I cry for those who are given word of an immediate loss when death suddenly jerks away a family member, often violently in a car crash, heart attack, natural disaster, and even murders. I cry for joy that we have foresight and the ability to celebrate Dave’s life as we watch for signs of his death.
With every day passing I wonder about that hospice time clock – six months. I know it is a medical protocol and not a sentence. Does the count begin with the doctor’s recommendation or the date of the paperwork? Can someone tell me if we get more time? How do we make the best of this time? Will parts of him begin to slip away when we aren’t paying attention? Am I the only one who doesn’t like waiting for the proverbial shoe to drop, but nowhere near ready for the alternative?
This waiting room is surreal. I suppose I can figuratively decorate it anyway I want, or how Dave requests. I hope to continue to fill it with love, laughter, music, colors. Coming through the door are family, friends and support. Paper cards bring wishes of wellness. I am sure this room will be as large and encompassing, or as small and intimate, as needed on any given day. I take comfort in knowing that I am not the only one standing here, waiting.