Adjust

Sometimes, the universe lifts away the curtain and shows you a glimpse of the future, or of the unthinkable. Then the curtain falls back and you adjust your vision once again to that which *is* rather than that which *could be*.

Things with mom have taken a turn in a better direction. Her nephrologist did get her in sooner (although not before I took a turn with her at the ER the day before); I went to the appointment with her and the information was  both eye-opening and heart-rending.  Her treatment plan of choice up until now was medical management of her disease "until the lethargy becomes so great you have Hospice care at home until you pass away naturally"...in the words of her doctor.  I was gobsmacked.  When we mentioned peritoneal dialysis to him, his head popped up and he asked her, "This is new? This is a change in plan?" and she just nodded.  He was ready to book her with a surgeon for catheterization then and there, but we held him at bay.

We want her treated closer to us and not in New London. We want a second opinion. Yes, we will take the information offered and my brother and I will read it and then we will discuss it with her...because regardless of how inconceivable to us her original plan, it is ultimately her decision.But she doesn't want a second opinion, she tells us.  "I just need to get that port put in" so they can start the treatment.

Now it's come to a matter of helping her manage her health. We know someone needs to attend each appointment with her, in order to keep track of the disease. We now know that her current doctor estimates that she has about 11% kidney function and we will see what her new doctor says.  She doesn't have only 3 months to live, she has been told she should start treatment before the end of the year.  The prognosis, while not great is better.

The advance health care planning workbooks we took down to them have been completed...another glimpse into those things that they hold dear, and that which gives them purpose.  I helped Dad complete his, talking about each question and helping him understand, brushing away the confusion until he was able to give me insight into what mattered to him. I felt as an archeologist must, delicately brushing away the inconsequential in order to reach, preserve and not contaminate that which is sought.  Mom completed most of hers ahead of time, and I asked only a couple of clarifying questions.  When I went over them with my brother, we grappled with the emotions of reading that my mother's life is given purpose by her family, and her greatest fear is leaving that family.

This will not be an easy road, nor a long one...but it will be longer than we once thought. It has shaken us all out of our complacency and made us realize that we can no longer pretend that the inevitable end isn't coming. It just doesn't seem to be coming quite as soon as we thought it would a couple of weeks ago.