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
Monday, November 15, 2010
Tuesday, November 9, 2010
11/09/10 - Update
After a couple of full days in Charlotte, and having visited with mom's neurosurgeon yesterday, I figured an update is in order. At the risk of being overly blunt, I will try to keep my thoughts as brief as possible.
Mom's appointment yesterday was the last in a series of meetings with her primary doctors. While each of the previous meetings was to specifically address the condition of the wound and whether it could be fixed, in every instance the message was consistent: that there was little she could reasonably expect to gain from continuing with intense medical intervention.
Yesterday's meeting with the neurosurgeon (who is also affiliated with the plastic surgeon and hence had a role in the management of the wound), while originally intended to be simply a follow up to close the loop on the wound management program, ultimately became much more. The very short of it is that by the end of the meeting, mom believed the doctor had (a) confirmed what the other doctors had told her insofar as it not being worth further aggressively treating the wound, but also (b) that at this point there was little upside to trying new approaches to treating the tumor (whose presumed progression has recently led to mom's losing a significant amount of her physical skills and "independence"). In short, in mom's mind (and I would not disagree), the doctor was gently suggesting to her that it would likely be a good time to shift to the next phase of the battle - one that focuses on maximizing the quality of the remaining life she has left.
And so it is in the final phase of mom's fight that we now find ourselves entering . . . a place towards which, as much as we wanted to believe in our hearts and minds that we would be the very rare exception that would be able to beat this nasty disease, we have been moving for the past 15 months.
We will be meeting with folks from hospice on Thursday to learn more about this palliative program, one that mom has for obvious reasons had little or no interest in discussing since the onset of treatment (and, of course, one which we had little desire to press upon her). The meeting has been framed so far as one that will help us learn to better manage her quality of life through the final weeks, and, hopefully, months of her life, but that has not yet been labeled (to her) as "hospice". This being because its underlying premise and framework, while very acceptable and comforting in our minds, are currently at odds with mom's preconceived and uninformed notions of what hospice is about. We feel it better to have prepared her to receive folks who want to help her live well over her remaining time, regardless of its label, and hope that she will, after having heard the spiel, be able to put her preconceived notions about hospice to bed once and for all and embrace it as have the rest of us. We shall see.
So, I hope that this (I imagine distressing) post has allowed you - whose demonstrated love for mom is the one true clearly wonderful thing that we gained as a result of all of this horribleness - to understand where we are and to allow you to prepare to move with mom through this final phase of her life. One that will, we trust, give us enough time to allow us to communicate to her just how wonderful and influential she has been in our lives, and how much she is and will be forever loved.
Love to all,
Ted
Mom's appointment yesterday was the last in a series of meetings with her primary doctors. While each of the previous meetings was to specifically address the condition of the wound and whether it could be fixed, in every instance the message was consistent: that there was little she could reasonably expect to gain from continuing with intense medical intervention.
Yesterday's meeting with the neurosurgeon (who is also affiliated with the plastic surgeon and hence had a role in the management of the wound), while originally intended to be simply a follow up to close the loop on the wound management program, ultimately became much more. The very short of it is that by the end of the meeting, mom believed the doctor had (a) confirmed what the other doctors had told her insofar as it not being worth further aggressively treating the wound, but also (b) that at this point there was little upside to trying new approaches to treating the tumor (whose presumed progression has recently led to mom's losing a significant amount of her physical skills and "independence"). In short, in mom's mind (and I would not disagree), the doctor was gently suggesting to her that it would likely be a good time to shift to the next phase of the battle - one that focuses on maximizing the quality of the remaining life she has left.
And so it is in the final phase of mom's fight that we now find ourselves entering . . . a place towards which, as much as we wanted to believe in our hearts and minds that we would be the very rare exception that would be able to beat this nasty disease, we have been moving for the past 15 months.
We will be meeting with folks from hospice on Thursday to learn more about this palliative program, one that mom has for obvious reasons had little or no interest in discussing since the onset of treatment (and, of course, one which we had little desire to press upon her). The meeting has been framed so far as one that will help us learn to better manage her quality of life through the final weeks, and, hopefully, months of her life, but that has not yet been labeled (to her) as "hospice". This being because its underlying premise and framework, while very acceptable and comforting in our minds, are currently at odds with mom's preconceived and uninformed notions of what hospice is about. We feel it better to have prepared her to receive folks who want to help her live well over her remaining time, regardless of its label, and hope that she will, after having heard the spiel, be able to put her preconceived notions about hospice to bed once and for all and embrace it as have the rest of us. We shall see.
So, I hope that this (I imagine distressing) post has allowed you - whose demonstrated love for mom is the one true clearly wonderful thing that we gained as a result of all of this horribleness - to understand where we are and to allow you to prepare to move with mom through this final phase of her life. One that will, we trust, give us enough time to allow us to communicate to her just how wonderful and influential she has been in our lives, and how much she is and will be forever loved.
Love to all,
Ted
Monday, November 8, 2010
11/08/10 - Update
The past month has seen a continued progression for the worse, with the wound's stubborn refusal to heal essentially preventing mom from resuming the high-dose anti-tumor regime. As a result, it appears that the tumor has regained the upper hand. We remain (even more so) focused on doing our best to give mom as good as quality of life as possible under the circumstances, and continue to be extremely thankful for all the love and support we receive from friends and family. I will provide a little color (in the form of an email from Dad over the weekend) to help put things in perspective. Love, Ted
Justin and I have been monitoring Mom's increasing invalid condition during the last twenty four to forty eight hours. We have both spoken to some of you already. From my optic these are the portents that seem to be the most worrisome: 1) Mom has no repeat no use of her left leg. She cannot move it, stand on it. The leg is considerably colder than the rest of her body. As a result she is really unable to walk even a step without full support, and she cannot move the left leg forward - we have to move it forward for her. This has developed during the last 24 hours; 2) Mom is mentally acute for short periods, but does not seem to respond to even simple guidance for almost all items: moving her right arm; looking at something; etc.; 3) Mom has frequent instances of incontinence; this is no longer simply a night time phenomenon; 4) Mom is no longer reading more than for a few minutes at a time. She is immersed in some of the VHS films and opera, but even here she drifts in and out; she sits for long periods apparently oblivious to what is going on around her and cannot sit upright unless propped with pillows, etc.
Balancing this: 5) her appetite remains good; 6) for brief periods she is very focused and articulate and her speech shows no signs of slurring; 7) she responded to the idea of shifting Thanksgiving here by saying that she could not possibly do the cooking, thus suggesting that she is still very sensitive to the way things should be done; 8) she does fairly well on the phone, if the conversation is fairly brief; 9) she is sleeping very well and longer and longer (this may or may not be a positive sign); 10) she is as appalled as ever that anyone would vote Republican; 11) she is still very keen on her pills schedule; 12) her toilet routine is good; 12) Mom is not in pain, nor does she seem to suffer any stomach upsetness from the daily chemo regime.
We have decided that Thanksgiving away from Charlotte is now simply not feasible. The participants are willing to come this way, and I am convinced it is for the best.
Love, Dad
Justin and I have been monitoring Mom's increasing invalid condition during the last twenty four to forty eight hours. We have both spoken to some of you already. From my optic these are the portents that seem to be the most worrisome: 1) Mom has no repeat no use of her left leg. She cannot move it, stand on it. The leg is considerably colder than the rest of her body. As a result she is really unable to walk even a step without full support, and she cannot move the left leg forward - we have to move it forward for her. This has developed during the last 24 hours; 2) Mom is mentally acute for short periods, but does not seem to respond to even simple guidance for almost all items: moving her right arm; looking at something; etc.; 3) Mom has frequent instances of incontinence; this is no longer simply a night time phenomenon; 4) Mom is no longer reading more than for a few minutes at a time. She is immersed in some of the VHS films and opera, but even here she drifts in and out; she sits for long periods apparently oblivious to what is going on around her and cannot sit upright unless propped with pillows, etc.
Balancing this: 5) her appetite remains good; 6) for brief periods she is very focused and articulate and her speech shows no signs of slurring; 7) she responded to the idea of shifting Thanksgiving here by saying that she could not possibly do the cooking, thus suggesting that she is still very sensitive to the way things should be done; 8) she does fairly well on the phone, if the conversation is fairly brief; 9) she is sleeping very well and longer and longer (this may or may not be a positive sign); 10) she is as appalled as ever that anyone would vote Republican; 11) she is still very keen on her pills schedule; 12) her toilet routine is good; 12) Mom is not in pain, nor does she seem to suffer any stomach upsetness from the daily chemo regime.
We have decided that Thanksgiving away from Charlotte is now simply not feasible. The participants are willing to come this way, and I am convinced it is for the best.
Love, Dad
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