Summary of our meeting with the hospice group.
Mom, Dad, Justin and I met with a couple of nurses from Lake Norman Hospice yesterday. Prior to the meeting, as you know, mom had heard from her doctors that a shift in focus to more of quality of life focus was probably in order. Further, on Wednesday during mom’s weekly bloodwork appointment, in a conversation with Cathy (we need to do something special for Cathy down the road - she really has been a godsend for mom) we addressed the fact that the meeting on Thursday was with a hospice group, but mom seemed receptive to it after Cathy did a good job characterizing it as largely a frame of mind focusing on symptom management.
So yesterday’s meeting came to pass. Two very nice nurses walked us through the program. Nurses, nurses aids come to the house, visiting on average three times per week as we need them. They would bathe mom, check the wound to see how it’s doing (and how well we’re keeping it clean), prescribe pain medication and other medication that would fit under the “palliative” program (think comfort versus treatment). They would help us procure medical equipment that would better enable us move mom safely around the house (becoming very important at this point). Bandages, dressings, etc. would all come standard with the program. In all, it’s very much what you’d expect if nurses ran the medical establishment (in other words, a big step forward from a caring perspective, less technical, more hokie, though not necessarily in a bad way, etc.).
The rub is that mom can not be on a program that is designated by the medical establishment as “curative” or “aggressive” treatment. By the end of the meeting, it had become clear that this is a discussion we still need to pursue with mom - that for her to get the benefits of hospice, she‘ll probably need to decide she no longer needs to be taking the chemo. I say “probably“ because the nurses indicated that in some cases in which a treatment is more palliative than curative, which is clearly where the Temodar is for mom, it can run concurrent with hospice care. The nurses are pursuing with mom's doctor to see what she says. And we may need to try to make a case to this effect as well. But given the somewhat black and white nature of medicare funding, I‘d not be surprised if they don’t get to this point. Regardless, it remains that mom, while much further along the “quality of life” curve, doesn’t yet get it in its entirety (given the recency of this line of thought for her, this is by no means a surprise).
So that’s where we are. Good informative meeting. Nice nurses. Mom no longer rejecting everything conceptually affiliated with the hospice label, but still wood to chop before we‘re ready to enter the program.
I think this is the website. http://www.hpccr.org/lake-norman.cfm.
Love to all. Ted
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Jane, Ed and the rest of the family,
ReplyDeleteJane, I will always remember you as you walked off the plane to meet Ed in the Ivory Coast those many years ago. The strong willed but soft hearted woman who did not recognize that young man from the small boy from Washington D.C. and even farther back bouncing on the bed in Sri Lanka would someday become “all grown up.” My heart goes out to those you are leaving behind but know that you are in a happy place that I have seen so many go to before. I have seen the grieving and the vigil that you must now be doing beside your wife, best friend and mother. Perhaps one positive thing that can come from such an ordeal that you have gone through as well as your family and friends are experiencing now is a “gathering of the clan.” Those who have drifted apart over the years are gathered now at your bed side from all corners of the world to wish you farewell. The pain will soon be a distant memory as well as the pull of earthy bonds. Know that you were my second mother in my early years, respected later and a role model now.
Grant Fraser