Thursday, February 24, 2011
I feel more refreshed today than in past weeks. Some routine may be implemented now. The POLST* was signed, the hospice assessment nurse conducted her intake, there is oxygen on standby. The healthcare plan is now in place. Our outside world is covered in snow this morning. The streets are peaceful.
Tuesday was our “family meeting.” All of Dave’s kids were present: four in person plus two spouses; one on Skype video (note- Skype is really for one to one – had to call on phone to support audio!); one – then the second patched in – on speaker phone. Most important was that everyone could hear the same conversation, understand the same challenges and decisions about their dad’s health. I was proud of how well everyone pulled together in support of each other.
Dave hesitantly went downstairs for the meeting. I had to insist. Yesterday, he told me he had wanted to whine, but didn’t. He is way too comfortable in his own little bedroom domain. Yes, he does have legitimate fears of dizziness, stairs and fatigue. What I mean is staying in bed is the path of least resistance. Is there much reason to get up and move around?
Dr. Slack graciously gave us his time and expertise again for this meeting. I would recommend having someone who can discuss both health and healthcare perspective to the entire family. What a gift to be able to openly discuss end of life. How great for us that we had a compassionate voice to help us through this tough conversation.
Several times there was no doubt in my mind that these people in the room are really a reflection of the man they gather around. Dave’s choices for his end of life care are not the important detail right now. It is that the family laughed and cried together. There is support and understanding. There are diverse reactions but all of them are OK. Questions could be posed and answered.
In the midst of a moment a strong voice came over the cordless phone sitting on the floor in the middle of the family room. Dave’s son’s voice rang out, “Hey, what Dad wants, Dad gets.” Laughter of consent followed. Wishes stated can be wishes fulfilled. And now, with a door open to all of us, there will be a true quality of life for solidifying relationships and their development over whatever time remains. I couldn’t be more pleased for us.
People are always telling me “take care of yourself.” I’ve often given this advice myself. I like how this statement is right up there with “get your affairs in order.” I have a gist of what it means but I think I have to walk through it to really know.
I sincerely began taking care of myself a few years back with a dedication to exercise, continued education, regular massage, and just being good to myself daily. Dave is part of that scenario; he is my emotional support, my cheerleader, my partner. Even now through sickness, he takes that role and his eyes twinkle sincerity. We’ve held some very intimate conversations on life and death and love recently. The real question will be how to take care of myself without him. What will stay the same, what will need attending?
Several years back, as I traversed a very rocky road at a job I held then, Dave asked me during one of my nightly transgression sessions in his home office, “Do you want me to fix this or just listen?” That was a life-saving and marriage-saving question! Of course when you love someone you want to fix the problems. But most often I just needed to talk aloud and vent. That became our key phrase for intense and even not so intense discussions. That took the pressure off one to fix the other, or confuse what the other needed. Here, today, I just need to vent. That’s what good cathartic, purposeful writing can do. The paper listens. It doesn’t try to fix anything.
As I take care of others, especially Dave, I will and do take care of myself. I‘ve always liked the analogy of placing the oxygen mask on myself first if the plane starts going down. This family conversation has been hugely important to talking care of myself. I no longer have to worry about who is hearing what. The onus is now on each person to carry forth in a way that takes care of his or herself while supporting each other. A family net has been created for this tightrope we walk together.
*POLST is the Physician’s Order for Life Sustaining Treatment used in WA and other states to provide health directives to emergency responders. This one page sheet kept in the home and signed by both patient and doctor are the standing orders on patient chosen levels of care for resuscitation, medical interventions, antibiotic use and artificial nutrition.