CB #25
July 3, 2008
“It is so good to have the office come to life again! It felt like a house with a clogged drain on holiday with a lot of visitors, when you were gone… ” My wonderful boss’ email to me upon my return.
So I’ve been home now for about a week. Closed on the house, back to work, packing, strategizing, planning, checking in on Dave and Hudson and on and on. Overwhelm doesn’t even seem descriptive enough to describe the pressure I feel at different points in the day. Sometimes, being at work, walking the dog, chatting with a friend is a respite from all that is occurring. Sometimes, it just adds to it all. I’ve noticed I’m sighing a lot. Its been hard for me to catch up with Dave and Hudson with the 3 hour time difference on a regular basis.
Hudson has been taking Dave to his radiation treatments to help reduce the lesions on his T8, ribs and shoulder and thus give him a bit of relief from the pain. He has no fractures in the ribs which is good. We aren’t totally sure he has lesions there either though. We’re still struggling with what to ask. Its all so new and difficult to figure out. Its amazing how different and new this all is. And now with me in Maryland I’m not there to ask the questions when things come up. I hear about it all AFTER the fact. Sometimes I lose it and get really frustrated. Poor Hudson, doesn’t know what to ask, its not really his job. Dave doesn’t know what to ask or sometimes even how to assimilate all the information he does get. This is a whole new experience for him. And not a fun one.
I took care of my mother, Chris Hudson, who had had 5 cancers over 12 years. Each one was a fairly straight forward until the last cancer which was in her liver and then there was nothing presented to us to resolve it that was worth undertaking. She made the decision not do anything as it would afford her some decent quality of life for the months she had left. It was very hard for me, and even harder for my sister, to know that she had made this choice. It was the right choice, but it was still hard. I remember lying in bed the night I knew she was “done” and crying myself to sleep. I woke up with the resolve that it was “her journey”. My role was to help her to have whatever experience she determined was best for her. THE HARDEST question I had to ask her in the car on the way home was where she wanted to die. I couldn’t quite get it out like that, not that direct. Funny how that is. When I was in a class in college for my humanities credit, “Death and Dying”, there was chapter I remember vividly entitled “Death Has Become Pornographic”. What it was alluding to was the difficulty we had as a society to discuss death. We give it names, like “passed away”, “kicked the bucket”, etc. That in the old days when death was more commonplace, we didn’t hide it away like we do now. The pornographic analogy was that we don’t discuss that either. We know its there, we know its a part of people’s lives, but we simply don’t have conversations about it. It is a taboo subject for many. Even “knowing” this, it was profoundly difficult to open this line of discussion with my mother without completely falling apart. But I was brave, and with tears trickling down my face as I was driving her home, I asked, “Mom? What do you want to do? I mean, where do you want to be… in the hospital, at your house, my house, hospice?” We had a very tentative and cautious, but open, conversation about it. She wanted to be with me, but she was worried about the children who were 11 & 13 at the time. Then she recounted a personal story that just floored me and that I never knew…
When she was about 5 or 6, her grandmother was dying. They all piled in the car and went to her house. Adults were milling around in and out of the grandmother’s bedroom, waiting, keeping vigil. The grandmother dies, they get her body removed from the house by the funeral home and then they put my mother in the grandmother’s bed, alone, turn out the light and they all go to bed! My mother had tears running down her face as she was, with great difficulty, telling me this incident in her very young life. I said, “Ohhhhh Mom! That’s horrible! You must have been absolutely terrified and frightened!” She only nodded. Then again, with difficulty she expressed her concern for my children and not wanting them to have any kind of experience like that connected to her or to death. I was even more resolved now that she would be with me. “Mom, first of all they aren’t that young and secondly, I would never allow them to have an experience like that, you know that right?” She nodded. “Then its settled, you will be with us.” (In case you’re wondering… my children had an unbelievably enriching experience caring for my mother. For them, now, its as natural as the air you breathe, to care for someone you love.)
So my experience with her was a slow decline physically until she died. With Dave, it’s one minute he’s working, driving to and fro, taking business trips and so on – to WHAM! In the hospital, unable to move without great effort and pain, almost crippled beyond words. I have to help him up, help him put on his clothes, in and out of the bathroom, pretty much everything. With my mother, it was helping her to die, gracefully, painlessly and dignified. With Dave it’s about SURVIVAL! Bringing him back from the brink instead of helping to go toward it. Its frightening to see him so profoundly impacted in an instant, much I guess like someone who has had a terrible accident or stroke. Its so abrupt and life changing, it sends you spinning.
Of course, now, I realize just how frightening all of this must have been for Dave. (I had a sense of it when it was occurring, but honestly, it was a luxury I didn’t feel I could afford.) He can’t get out of bed, he is in tremendous pain, he goes to the hospital by ambulance and he’s told he has cancer. I’m sure right at that moment, he thought this is it, its all over, I’m a goner. I can totally appreciate how one could view it that way. My job became more about his mental game than the physical one. I knew he would get treatment, though I had no real idea what that would entail just yet. So for me it was, how do I get Dave from a posture of succumb to one of survive? How do I do this while being understanding and compassionate. How do I say, “COME ON BUCKO! GET WITH THE PROGRAM HERE!” in a soft, quiet, caring way. I’m thinking all of this and I’m torn between being angry AT him, scared FOR him and not even wanting to think about what this could all mean for me and our family. Our future, our lives… and feeling guilty for having ANY of these kinds of thoughts at all! The emotional pressure was incredibly profound.
