Friday, November 25, 2005
The visiting part of our Thanksgiving trip was super-splendid.
Mom and I, separately and together, had a wonderful time with MCF and her extended family (and friends), who are marvelous hosts and know how to do a in-and-out door, watching-football-and-visiting Thanksgiving get together. As well, as you may remember, this was the family of MCF, who took care of her Ancient One father until his death. All their family, while still sometimes frustratingly unavailable for MCF, were much more available than my family is (not calling a fault, just stating the truth, mind you) for me, so everyone involved in the family who was present was auto-tuned to my mother as An Ancient One and, while I was also well tuned to her, I was able to relax. My mother shimmered and shone, as usual, made a new friend and spent the afternoon developing all kinds of plans for our yard based on what this family did with their yard. Today she continues to talk about various aspects of the get together in glowing terms.
A bizarre glitch occurred on our trips down and back which I almost allowed to take us out of the running for the gathering, but somehow MCF and her daughter came to my rescue lickety-split when we arrived, which I wasn't expecting, and saved my and my mother's day. I'll explain later. There is more to tell about the party, too, and some hard caregiver realizations I had, but I'll discuss those, as well...
...later.
A bizarre glitch occurred on our trips down and back which I almost allowed to take us out of the running for the gathering, but somehow MCF and her daughter came to my rescue lickety-split when we arrived, which I wasn't expecting, and saved my and my mother's day. I'll explain later. There is more to tell about the party, too, and some hard caregiver realizations I had, but I'll discuss those, as well...
...later.
Wednesday, November 23, 2005
Traveling with you in your Ancient Years is all about just-in-cases, Mom."
This was my reply this evening to her comment that the list of things to take on the trip tomorrow, which she insisted I read to her (as self-elected Trip Supervisor she demands that I keep her apprised of all activities and preparations leading up to trips) as we contemplated tomorrow's journey, had "an awful lot of just-in-case items on it."
She's having a little trouble remembering that it's Thanksgiving (which is fine with me, my preference is to forget holidays) and who we're visiting but becomes excited all over again when I remind her. If you don't like holidays and have to do them anyway, it's best to do them with someone who's resume includes a long stint as Mrs. Holiday.
When I confirmed that Ancients seem to specialize in "just-in-cases", she laughed and said, "Yes, that's part of the fun of getting old," without irony, I might add, which surprised me. My mother is nothing if not ironic and never passes up an opportunity to acknowledge genuine irony.
Gotta love that woman's spirit.
I'm pleased with the products of my baking, today. Everything came out of the oven without hitches. I won't be able to treat the cheesecake to it's preferred 24 hours of refrigeration before serving but I think it will be scrumptious anyway. The pecan pies were a breeze. Too bad I don't like the idea of pecan pie. Mom was so taken with the results that at one point this evening she arose from her rocker and headed into the kitchen.
As per my usual precaution, I asked, "Where are you going?"
"To get myself a piece of pie," she said.
"Whoa, whoa, whoa! No you're not!"
She took offense. "Why not?!?" she demanded.
"Mom, let me put it this way. If you take a piece out of either pie or the cheesecake before we deliver them to MCF tomorrow and I'm forced to either bake another or show up without everything requested, I'll never forgive you."
She did a double take. I rarely express myself this strongly to her. "Well!" she said. "I'll have to wait with the rest of them, is that it?!?"
"That's it, Mom. Said and done."
"Such a shame to let those pies go to waste."
"They won't be going to waste! You can have a piece of all three of them tomorrow after dinner! I promise!"
"You can be awfully snippy when you're baking, you know."
All I could do was laugh.
She headed back to her chair, still nursing a snit. The pies will be well hidden tonight before I go to bed. Not that I expect her to awaken in the middle of the night and rummage through the kitchen. But, you know, just in case...
...later.
She's having a little trouble remembering that it's Thanksgiving (which is fine with me, my preference is to forget holidays) and who we're visiting but becomes excited all over again when I remind her. If you don't like holidays and have to do them anyway, it's best to do them with someone who's resume includes a long stint as Mrs. Holiday.
When I confirmed that Ancients seem to specialize in "just-in-cases", she laughed and said, "Yes, that's part of the fun of getting old," without irony, I might add, which surprised me. My mother is nothing if not ironic and never passes up an opportunity to acknowledge genuine irony.
Gotta love that woman's spirit.
I'm pleased with the products of my baking, today. Everything came out of the oven without hitches. I won't be able to treat the cheesecake to it's preferred 24 hours of refrigeration before serving but I think it will be scrumptious anyway. The pecan pies were a breeze. Too bad I don't like the idea of pecan pie. Mom was so taken with the results that at one point this evening she arose from her rocker and headed into the kitchen.
As per my usual precaution, I asked, "Where are you going?"
"To get myself a piece of pie," she said.
"Whoa, whoa, whoa! No you're not!"
She took offense. "Why not?!?" she demanded.
"Mom, let me put it this way. If you take a piece out of either pie or the cheesecake before we deliver them to MCF tomorrow and I'm forced to either bake another or show up without everything requested, I'll never forgive you."
She did a double take. I rarely express myself this strongly to her. "Well!" she said. "I'll have to wait with the rest of them, is that it?!?"
"That's it, Mom. Said and done."
"Such a shame to let those pies go to waste."
"They won't be going to waste! You can have a piece of all three of them tomorrow after dinner! I promise!"
"You can be awfully snippy when you're baking, you know."
All I could do was laugh.
She headed back to her chair, still nursing a snit. The pies will be well hidden tonight before I go to bed. Not that I expect her to awaken in the middle of the night and rummage through the kitchen. But, you know, just in case...
...later.
Tuesday, November 22, 2005
I feel as though I am, oh, say 9 or 10...
...and tomorrow is a holiday, which is synonymous with no school, so I can stay up as late as I want, relax, do whatever I want, sleep in tomorrow...I'm even drinking coffee tonight, at this late hour, so I can enjoy the evening and myself into the wee hours.
The two pies I'm making tomorrow are pecan; one is chocolate pecan. That's what was requested. I've purposely shied away from pecan pie: No fruit, seems like it's just pecans and sugar; I prefer my nuts straight and my sugar very light. Preceding the two recipes I found in Joy of Cooking, though, was the following blurb: "The filling of pecan pie is actually a sort of custard composed of sugar, butter and eggs..." Ah, I'm thinking, custard. I like the challenge of cooking an interesting custard. I also like the challenge of making food that I would not normally eat, just to see if I can do it well. The pumpkin cheesecake, of course, is something I love, so that will be fun to make. Mom will busy herself supervising, as she loves to do when cooking and baking are being pursued in the kitchen.
I think I'll put some more cataloguing under this journal's belt tonight.
Later.
The two pies I'm making tomorrow are pecan; one is chocolate pecan. That's what was requested. I've purposely shied away from pecan pie: No fruit, seems like it's just pecans and sugar; I prefer my nuts straight and my sugar very light. Preceding the two recipes I found in Joy of Cooking, though, was the following blurb: "The filling of pecan pie is actually a sort of custard composed of sugar, butter and eggs..." Ah, I'm thinking, custard. I like the challenge of cooking an interesting custard. I also like the challenge of making food that I would not normally eat, just to see if I can do it well. The pumpkin cheesecake, of course, is something I love, so that will be fun to make. Mom will busy herself supervising, as she loves to do when cooking and baking are being pursued in the kitchen.
I think I'll put some more cataloguing under this journal's belt tonight.
Later.
Although she was feeling good when she awoke...
...this morning and awoke on her own much earlier than the last few days, she wasn't up to a trip to the grocery for supplies for our pie baking spree tomorrow. This worked out well. The grocery was so crowded that aisles were regularly blocked and the deli area, where she would normally sit out a busy market, was chock full of companionated people with the same idea. She did, however, remain awake of her own accord while I shopped, looking through our selection of cooking magazines and watching Animal Planet.
I'm thinking, so we don't have to get an unusually early start on Thanksgiving, that we'll probably sack our first visit plan for Thanksgiving Day which involves visiting relatives for brunch. I think Mom's going to be moving slow. I talked to MPBIL early today about this and he understands. He's enduring a sinus infection and MPS has a stubborn cold. If we don't make it for brunch at their house I don't think it's going to be a problem. I think the day will be easier on both Mom and me if we don't try to hit the trail at 0700 and accomplish a lot in a short amount of time. MCF's family may as well consider themselves our family, anyway, so we'll definitely be celebrating with family.
On the holidays I much prefer visiting to hosting, now. The amount of work remains the same either way, really, although the type of work differs. When visiting, I hone my attention more acutely on Mom by a power of three; when we're hosting it's by a power of two. Juggling all the supplies with which we travel is worthy of a Las Vegas acrobatic act. Unfamiliar surroundings mean that I have to be aware of where she is at all times, what she's doing, be ready to help her negotiate her way around an unfamiliar environment and try to anticipate what she might do next. When we're hosting all the extra work involved causes my temper to wind tightly from trying to keep everyone from "helping" me into a lot more work than is normally necessary. When people (family, actually, related family) visit for the holidays there is a silent assumption, which I have to fight, that all the routines, restrictions and reminders that keep Mom in peak condition can be dispensed with. I end up countermanding everyone's else's assumptions about what Mom can/should and can't/shouldn't do. When we're visiting, hosts tend to step out of the way and ask me first if this or that is okay for Mom. I'm not sure why this happens but it does. Although either way it's a trick for me to relax for moments here and there and enjoy the company of others on holidays because of keeping my eye on Mom, it's definitely easier when we're visiting.
Truthfully, visiting MCFs is always easier on me than visiting related family. The reason, I believe, is because they took care of their elderly father in their home for some years up to his death. They get it. They get everything about it, including all the peculiar-to-holidays caregiving challenges. They've developed the eccentricities of the senses that caregiving for An Ancient One catalyzes. They understand that I'm going to have my primary sites constantly on my mother and they instinctively pitch in. I know that if I don't notice a possible haywire moment they will. Thus, I relax more around them.
As well, this holiday none of them is sick. This bodes well for Mom.
List of stuff to take:
Later.
I'm thinking, so we don't have to get an unusually early start on Thanksgiving, that we'll probably sack our first visit plan for Thanksgiving Day which involves visiting relatives for brunch. I think Mom's going to be moving slow. I talked to MPBIL early today about this and he understands. He's enduring a sinus infection and MPS has a stubborn cold. If we don't make it for brunch at their house I don't think it's going to be a problem. I think the day will be easier on both Mom and me if we don't try to hit the trail at 0700 and accomplish a lot in a short amount of time. MCF's family may as well consider themselves our family, anyway, so we'll definitely be celebrating with family.
On the holidays I much prefer visiting to hosting, now. The amount of work remains the same either way, really, although the type of work differs. When visiting, I hone my attention more acutely on Mom by a power of three; when we're hosting it's by a power of two. Juggling all the supplies with which we travel is worthy of a Las Vegas acrobatic act. Unfamiliar surroundings mean that I have to be aware of where she is at all times, what she's doing, be ready to help her negotiate her way around an unfamiliar environment and try to anticipate what she might do next. When we're hosting all the extra work involved causes my temper to wind tightly from trying to keep everyone from "helping" me into a lot more work than is normally necessary. When people (family, actually, related family) visit for the holidays there is a silent assumption, which I have to fight, that all the routines, restrictions and reminders that keep Mom in peak condition can be dispensed with. I end up countermanding everyone's else's assumptions about what Mom can/should and can't/shouldn't do. When we're visiting, hosts tend to step out of the way and ask me first if this or that is okay for Mom. I'm not sure why this happens but it does. Although either way it's a trick for me to relax for moments here and there and enjoy the company of others on holidays because of keeping my eye on Mom, it's definitely easier when we're visiting.
Truthfully, visiting MCFs is always easier on me than visiting related family. The reason, I believe, is because they took care of their elderly father in their home for some years up to his death. They get it. They get everything about it, including all the peculiar-to-holidays caregiving challenges. They've developed the eccentricities of the senses that caregiving for An Ancient One catalyzes. They understand that I'm going to have my primary sites constantly on my mother and they instinctively pitch in. I know that if I don't notice a possible haywire moment they will. Thus, I relax more around them.
As well, this holiday none of them is sick. This bodes well for Mom.
List of stuff to take:
- Plastic sheet in case Mom decides to nap (unlikely but it's a good idea to be prepared).
- Lots of paper underwear, both sizes.
- Mom's favorite brand of diet rootbeer.
- My bubble water.
- The flavored faux creamer that I contiually forget to give to MCF when she's here.
- The pies and cheesecake.
- The whipping cream for the pies (check with MCF on this).
- Two gallons of water just in case (always a good idea in the desert).
- Change of clothes for Mom, just in case.
- Mom's meds.
- Baby wipes, just in case.
- The back dated gossip tabloids we've collected for MCF and family.
- Two M-6 canisters and one C-4 canister of oxygen, just in case. She probably won't need oxygen down there but you never know.
- The walker. I think we'll be able to do without the wheelchair. If we take the cane Mom won't use it. She hasn't gotten used to it yet.
- A can of V-8 juice and maybe some yoghurt for Mom to snack on, just in case there is a long time between major feeds and she gets hungry.
- Big ice chest for the water and spoilable food. Oh, yeah. Gotta remember to get ice. Maybe we'll do that on the way out.
Later.
Monday, November 21, 2005
Speaking of blood pressure...
...I decided to establish a permanent link to the Blood Pressure Average post I put up over at Mom & Me Daily Tests & Meds on November 3, 2005. Because Mom's lisinopril dosage was doubled at her last doctor's appointment (11/1/05) I was curious to see how her average since that date compares with the last few months, when I'd been freaking about her blood pressure. The results assured me that doubling her lisinopril dose was a good idea. I realized that averaging Mom's BP readings is a helpful tool, so I'm going to continue to calculate it every time I write up a health review for her PCP and add each period's averages to the list. The permanent link will remain over the right in the list of links.
The adult buffered aspirin I gave her tonight (read about it over at tonight's Dinner Stats post) seems to have done the trick. She arose about 15 minutes ago wanting some coffee and "to sit up for awhile". She's watching Animal Planet, not doing any mouth breathing, she is coughing a little here and there but she feels good.
Tomorrow is a No Excuses Day. We've got to pick up the ingredients for the pies I'll be providing for the Thanksgiving Feast to which we've been invited. I don't know if Mom will be up to going along, but she might. It'll be warm and sunny tomorrow and the weathercast mentioned nothing about wind. We'll see. Although I wondered if we'd make our Thanksgiving plans when I posted her Dinner Stats tonight, I'm more optimistic, now.
Later.
The adult buffered aspirin I gave her tonight (read about it over at tonight's Dinner Stats post) seems to have done the trick. She arose about 15 minutes ago wanting some coffee and "to sit up for awhile". She's watching Animal Planet, not doing any mouth breathing, she is coughing a little here and there but she feels good.
Tomorrow is a No Excuses Day. We've got to pick up the ingredients for the pies I'll be providing for the Thanksgiving Feast to which we've been invited. I don't know if Mom will be up to going along, but she might. It'll be warm and sunny tomorrow and the weathercast mentioned nothing about wind. We'll see. Although I wondered if we'd make our Thanksgiving plans when I posted her Dinner Stats tonight, I'm more optimistic, now.
Later.
It's that time of month, again...
...for Mom's health review on the occasion of her monthly blood draw:
Blood Pressure:
Doing okay, as you can see by the chart. Splitting the 10 mg lisinopril tablets in half and giving them to her in the morning and evening seems to work best for her. Last week her BP took a slow climb up until, on Saturday evening, I noticed that she was retaining some (not a huge amount) of abdominal fluid (although her feet weren’t swelling). I gave her 20 mg furosemide and an extra 5 mg lisinopril that night. She shed all excess water over the next 24 hours and her BP has settled down, although I’m keeping my eye on her.
Blood Sugar:
Very good control. See attached numbers.
Urinary Issues:
No change. Macrodantin continues to keep her UTI free.
Hydration:
No change from last month.
Energy Level:
After a long surge of active (for her) days, the last two weeks she’s been slow and tired, sleeping a bit more than usual. Her blood draw tells me it might be because her hemoglobin was falling a bit. It goes up and down, though, and her hemoglobin isn’t out of her normal range so we’ll just go with it.
Skin & Circulation:
Both continue to be excellent. No changes.
Appetite & Diet:
Both remain excellent. No changes.
Dementia:
Remains unchanged.
Will & Spirit:
Remain strong and high, respectively.
Medication & Supplements:
I’ve boosted her to 1 tablespoon Benefiber a day just recently as her body gets used to it. Other than this, on 11/18/05 I gave her one 200 mg ibuprofen because she was complaining about her knees. On 11/19/05 I gave her an extra 5 mg lisinopril in the evening besides her usual evening dose and 20 mg furosemide to rid her of some fluid retention. Other than these there have been no changes in her medication since her appointment on 11/01/05. I haven’t yet located a flu shot for her. Still working on that.
CHF:
Apparent CHF episodes and wild BP have both calmed down since last report.
COPD:
No changes from last report.
Bowel Movements:
No constipation or diarrhea this period. Continues to eliminate every 24-72 hrs; usually every 48 hrs. Fecal consistency, volume and ease of elimination remain excellent overall.
ADDITIONAL NOTES:
Blood Pressure:
Doing okay, as you can see by the chart. Splitting the 10 mg lisinopril tablets in half and giving them to her in the morning and evening seems to work best for her. Last week her BP took a slow climb up until, on Saturday evening, I noticed that she was retaining some (not a huge amount) of abdominal fluid (although her feet weren’t swelling). I gave her 20 mg furosemide and an extra 5 mg lisinopril that night. She shed all excess water over the next 24 hours and her BP has settled down, although I’m keeping my eye on her.
Blood Sugar:
Very good control. See attached numbers.
Urinary Issues:
No change. Macrodantin continues to keep her UTI free.
Hydration:
No change from last month.
Energy Level:
After a long surge of active (for her) days, the last two weeks she’s been slow and tired, sleeping a bit more than usual. Her blood draw tells me it might be because her hemoglobin was falling a bit. It goes up and down, though, and her hemoglobin isn’t out of her normal range so we’ll just go with it.
Skin & Circulation:
Both continue to be excellent. No changes.
Appetite & Diet:
Both remain excellent. No changes.
Dementia:
Remains unchanged.
Will & Spirit:
Remain strong and high, respectively.
Medication & Supplements:
I’ve boosted her to 1 tablespoon Benefiber a day just recently as her body gets used to it. Other than this, on 11/18/05 I gave her one 200 mg ibuprofen because she was complaining about her knees. On 11/19/05 I gave her an extra 5 mg lisinopril in the evening besides her usual evening dose and 20 mg furosemide to rid her of some fluid retention. Other than these there have been no changes in her medication since her appointment on 11/01/05. I haven’t yet located a flu shot for her. Still working on that.
CHF:
Apparent CHF episodes and wild BP have both calmed down since last report.
COPD:
No changes from last report.
Bowel Movements:
No constipation or diarrhea this period. Continues to eliminate every 24-72 hrs; usually every 48 hrs. Fecal consistency, volume and ease of elimination remain excellent overall.
ADDITIONAL NOTES:
- In retrospect over the last five days or so, I think her body’s been fighting a cold but it’s been handling it so well I didn’t pick up on it. I took her temperature tonight (11/21/05) because she felt warm. Arterially on the forehead it was 100.9°F, which is .7 degrees above the cut-off for normal range. I gave her a buffered adult aspirin with water while she still had food on her stomach and before she retired. I’m not worried, I think her body is fit to handle this.
- Also, just for fun because of your mention of BP averages at Mom’s last appointment, I set up a spreadsheet to calculate average BPs by month and time taken for as far back as I have BP numbers. I thought you might find the following interesting:
- November breakfast BP average: 121/65
- November dinner BP average: 128/59
- October breakfast BP average: 131/64
- October dinner BP average: 139/66
- September brakfast BP average: 125/63
- September dinner BP average: 131/63
Well, I did it.
I sought out the proper contact at Revolution and sent a lengthy email detailing my thoughts about Medical Advocation and what I would seek from such a professional. I cited my experience as my mother's avocational medical advocate as proof of my knowledge of the subject. I included the text of three posts, the beginnings of which are listed below and labeled as they were in the email:
In less than an hour I had a preliminary response from the woman to whom I directed my message. She assured me that she had passed my message on to someone in charge of that area of Revolution and would leave it up to that person whether to contact me further.
It was, of course, a polite, perfunctory response. I hadn't expected any response except maybe an auto-e acknowledging receipt of my message, so I was encouraged. Neither am I hanging on the possibility of further contact. As I explained to my mother when I told her what I did, considering the detail and coverage of my message, further contact is moot to the reality that anyone who is involved in the establishment of Professional Medical Advocates, whether they have personally advocated medically on behalf of someone either professionally or avocationally, will not be able to forget what I wrote. It can be consigned to a back file, a circular file, whatever. It will not leave their mind as they proceed in their creation. This is the most important aspect of what I did. I hope it will help. There is no reason why it shouldn't.
I will, of course, mention here any further correspondence if it occurs.
Later.
- My first mention of Medical Advocacy as a possible profession:
- My first mention of the NYT article about "Case's new venture, Revolution":
- Today's post, in which I voice my specific fears about commercial medical advocacy and what I, as an avocational medical advocate who would continue this advocacy, would want in a commercial medical advocate:
In less than an hour I had a preliminary response from the woman to whom I directed my message. She assured me that she had passed my message on to someone in charge of that area of Revolution and would leave it up to that person whether to contact me further.
It was, of course, a polite, perfunctory response. I hadn't expected any response except maybe an auto-e acknowledging receipt of my message, so I was encouraged. Neither am I hanging on the possibility of further contact. As I explained to my mother when I told her what I did, considering the detail and coverage of my message, further contact is moot to the reality that anyone who is involved in the establishment of Professional Medical Advocates, whether they have personally advocated medically on behalf of someone either professionally or avocationally, will not be able to forget what I wrote. It can be consigned to a back file, a circular file, whatever. It will not leave their mind as they proceed in their creation. This is the most important aspect of what I did. I hope it will help. There is no reason why it shouldn't.
I will, of course, mention here any further correspondence if it occurs.
Later.
Blood Draw Test Results are up...
...for 11/18/05. Her hemoglobin is lower than I expected but still within her range. Although there aren't any tests for this period of time last year, her test for 9/02/04, while still in "the nines", is even lower than Friday's draw results, so I'm okay with her readings.
I ran into a laboratory glitch this morning. It seems that they still have the old prescription from her old office and The Shiny New Doctor who dismissed us in their computer and faxed "the doctor" off that old prescription. I faxed her current (and constant) PCP this morning with the lab results, as they hadn't received a copy, and called the lab to change that information. They were swamped. "The front desk" didn't answer the phone so I was told to call back in the afternoon. Yet another medical administration disappointment. If you readers think you can get away with Medical Advocate-Lite status if you are managing the health of a loved one, think again. At this time, chaos reigns in in every corner of the medical-industrial complex.
Which reminds me...a few days ago I ran across my posting about Steve Case's Revolution venture into medicine, including his desire to create a company of medical advocates. In that post I mentioned that I planned to comment on his commercialization of medical advocacy. I never did. This seems a good time to do it.
Although I think commercial medical advocacy is an excellent idea, I worry that commericializing medical advocates for patients may devolve into medical advocates being curried by doctors to the point of actually advocating for the medical-industrial complex instead of patients. I have visions of a professional medical advocate for my mother, for instance, responding to me much the way MPBIL, who is a social worker as a patient liaison in the transplant field, did when I was in a quandry about whether to allow my mother to be colonoscopized: "It's standard, now. Everyone gets one just for history. Trust the doctors regarding her risk assessment." I was both surprised by and suspicious of his advice but, as you know, several months later I was finally beaten into agreeing to the colonoscopy. As it turned out, the gastro-enterologist who performed the procedure (and who I was supposed to trust regarding risk assessment) admitted that the procedure had been a bad idea and Mom should never again be scoped, she was too old and frail and the procedure had been "torture" for her.
Obviously, medical advocates are going to need to be trained (hopefully highly trained). Commercializing medical advocacy will probably and inevitably mean that their training will be institutionalized through the medical-industrial establishment; including doctors, nurses, facilities, drug, insurance and equipment companies. I shudder to think what this could mean for their ability to advocate on behalf of their clients.
In my ideal world medical advocates would be not only highly trained but highly aware of the constant, myriad blunders the medical-industrial complex stumbles through on behalf of patients and the reasons for such blunders. Although it would be important for some of their training to be directed by the medical-industrial establishment so they were thoroughly familiar with this section of medicine, another part would involve alternative training which would make them aware of such problems as:
...later.
I ran into a laboratory glitch this morning. It seems that they still have the old prescription from her old office and The Shiny New Doctor who dismissed us in their computer and faxed "the doctor" off that old prescription. I faxed her current (and constant) PCP this morning with the lab results, as they hadn't received a copy, and called the lab to change that information. They were swamped. "The front desk" didn't answer the phone so I was told to call back in the afternoon. Yet another medical administration disappointment. If you readers think you can get away with Medical Advocate-Lite status if you are managing the health of a loved one, think again. At this time, chaos reigns in in every corner of the medical-industrial complex.
Which reminds me...a few days ago I ran across my posting about Steve Case's Revolution venture into medicine, including his desire to create a company of medical advocates. In that post I mentioned that I planned to comment on his commercialization of medical advocacy. I never did. This seems a good time to do it.
Although I think commercial medical advocacy is an excellent idea, I worry that commericializing medical advocates for patients may devolve into medical advocates being curried by doctors to the point of actually advocating for the medical-industrial complex instead of patients. I have visions of a professional medical advocate for my mother, for instance, responding to me much the way MPBIL, who is a social worker as a patient liaison in the transplant field, did when I was in a quandry about whether to allow my mother to be colonoscopized: "It's standard, now. Everyone gets one just for history. Trust the doctors regarding her risk assessment." I was both surprised by and suspicious of his advice but, as you know, several months later I was finally beaten into agreeing to the colonoscopy. As it turned out, the gastro-enterologist who performed the procedure (and who I was supposed to trust regarding risk assessment) admitted that the procedure had been a bad idea and Mom should never again be scoped, she was too old and frail and the procedure had been "torture" for her.
Obviously, medical advocates are going to need to be trained (hopefully highly trained). Commercializing medical advocacy will probably and inevitably mean that their training will be institutionalized through the medical-industrial establishment; including doctors, nurses, facilities, drug, insurance and equipment companies. I shudder to think what this could mean for their ability to advocate on behalf of their clients.
In my ideal world medical advocates would be not only highly trained but highly aware of the constant, myriad blunders the medical-industrial complex stumbles through on behalf of patients and the reasons for such blunders. Although it would be important for some of their training to be directed by the medical-industrial establishment so they were thoroughly familiar with this section of medicine, another part would involve alternative training which would make them aware of such problems as:
- The tendency for doctors to support one another's diagnoses rather than their patients;
- The likelihood that drugs and procedures might be encouraged on the basis of the vociferous lobbying of drug and medical equipment companies rather than the needs of their patients;
- The certainty that, with the current "get 'em through and get 'em billed, as many as possible" climate infecting medicine right now, many doctors, even those of long standing patients, are not making accurate diagnostic, prognostic and prescriptive decisions based on a patient's history because they don't have the time or motivation to check those voluminous histories they collect on their patients;
- The fact that understaffing in both hospitals and clinics increases the likelihood that any particular patient will not receive top-notch treatment in any medical facility and mistakes will be made regularly in such areas (all areas of which my mother has experienced medical mistakes) as:
- diet prescribed for a hospital stay;
- inattention to skin tears from the attachment of IV supplements;
- extreme bruising of diabetics' fingers when blood glucose levels are taken;
- misreading or ignoring of prescribed treatments;
- prescribed treatments being abandoned after a discussion with medical advocates then represcribed by an ignorant staff doctor who disdains medical advocacy;
- lists of medications that are solicited from the patient and/or medical advocate being ignored;
- Lack of attempt at reasonable risk assessment being passed off as adequate risk assessment;
- Physicians and nurses being unprepared for visits with patients;
- Physicians taking offense at a patient's or medical advocate's questioning of and/or denial of prescribed treatment and dumping patients rather than considering and respecting the patient's/medical advocate's research and opinion.
- I would use the professional to back me up with the ability to perform and produce all-inclusive, up-to-the-minute research on all my medical (including alternative medical) questions and problems. My expectation would be that the professional would have this access and know how to hone research to specifics quickly and with little fuss.
- In disputes with physicians and other medical personnel I would want my professional to support me with reasonable back-up, which includes being able to trust that professional to determine, with complete information, when I was misguided or wrong.
- I would want my professional to be up-to-the-minute on all medical facilities and personnel appropriate to my mother's care in our area and available specialists-of-interest in other areas in case I need an unbiased second physician's opinion or need to hire a medical and/or therapeutic specialist, etc.
- I would want my professional to be familiar with the eccentricities of my mother's medical profile, including my own difficulties with the medical-industrial complex, and have this information finger-tip available so that I knew I could trust their personnel refreshment from patient to patient.
- I would want my professional to be able to translate technical medical language, including test results, for me into terms I can understand and use.
- I would expect my professional to have alternate ideas on diagnosis, prognosis, treatment and the handling of my mother's medical care and be responsive to my requests for such.
- I would expect my professional to advocate on my behalf in the tug-of-war to have access to as much medical information about my mother as I deem necessary at any particular time.
- I would expect my professional to be thoroughly aware of the ins and outs of all my mother's insurance plans and be able to answer questions about coverage and availability almost as quickly as I asked them. I would also want my professional to act as a reminder when I need to perform insurance recertification procedures for my mother.
- I would want my medical advocate to be familiar with the down side of her insurance plans (i.e., when doctors give me lectures about "Medicare in rural communities") and have suggestions on how to affirm and/or counter such down sides.
- If I have legal questions or concerns about my mother's medical care I would expect my professional to pay attention, inform her/himself of the possibilities, speak to me about such contingencies from our point of view as well as medicine's point of view and, in the final analysis, be able to advise me wisely and from the patient's perspective on whether to initiate legal action.
...later.
Sunday, November 20, 2005
Forgot to mention...
...blood draw results will be up tomorrow, so will her monthly (or so) health review that I'll be faxing to her PCP.
Also, she and I watched TCM's presentation of Sense and Sensibility. Although I expected that my mother would shun it because of the English accents and my suspicion was further endorsed because the station forgot the Closed Captioning until half way through the movie, my mother was as taken with the production as I was. By the time the toward-the-end scene occurs when Elinor breaks down crying and laughing at the return of Edward we were both laughing and crying, and thoroughly satisfied.
Before I could saying anything, Mom said, "If you see that movie anywhere, get it. I'd love to see it again."
Funny, they've had it at Costco regularly, it is now much reduced in price there, but since I hadn't seen it and am careful about Jane Austen adaptations I hadn't picked it up. I will, now.
Maybe she's ready for some of the more flourescent productions of Shakespeare, like Branagh's production of Othello with Laurence Fishburne or Polanski's MacBeth. She tends to find the BBC productions too hard to follow, but some of the "made for the popular theater" productions might appeal to her. I know, I was blown away that she enjoyed BBC's Pride and Prejudice.
Later.
Also, she and I watched TCM's presentation of Sense and Sensibility. Although I expected that my mother would shun it because of the English accents and my suspicion was further endorsed because the station forgot the Closed Captioning until half way through the movie, my mother was as taken with the production as I was. By the time the toward-the-end scene occurs when Elinor breaks down crying and laughing at the return of Edward we were both laughing and crying, and thoroughly satisfied.
Before I could saying anything, Mom said, "If you see that movie anywhere, get it. I'd love to see it again."
Funny, they've had it at Costco regularly, it is now much reduced in price there, but since I hadn't seen it and am careful about Jane Austen adaptations I hadn't picked it up. I will, now.
Maybe she's ready for some of the more flourescent productions of Shakespeare, like Branagh's production of Othello with Laurence Fishburne or Polanski's MacBeth. She tends to find the BBC productions too hard to follow, but some of the "made for the popular theater" productions might appeal to her. I know, I was blown away that she enjoyed BBC's Pride and Prejudice.
Later.
Much of Mom's day...
...centered around her body's recovery from the furosemide flushing that I initiated last night. Those details can be accessed at yesterday's and today's posts at Mom's Daily Tests & Meds. The flushing and replenishment of fluids, along with some extra Benefiber®, caused her to go through a typical wrung-out-rag to moderately-moisturized-rag episode that happens when I flush excess fluid off her. It was hard, this time, to tell that she was retaining water. The process happened slowly, over the last week. I'd examine her every morning and every night and she would seem fine to me in the context of what I'd seen the day before, so it sneaked up on me. I'm hoping this is an isolated episode. I don't want to be administering furosemide to her on a regular basis unless the alternative is much worse. As I mentioned to her this morning, furosemide really takes the stuffing out of her.
Yesterday was dominated by Mr. Everything's first visit of the season. There was a lot of yard clean-up for him, some electrical work inside the house, and he worked like a Mr. Clean demon. He finds it hard to accept that I don't want the yard whistle clean, that I want dying weeds and stuff left where they are and that I appreciate the large, unruly kindling pile in the back as what it's become this fall, an "apartment house" for a large number of Gambel's Quail, wood squirrels (which used to take up residence in our crawl space and between the walls of our house, harvesting insulation for their nests) and grey squirrels. Our property is a happy home for hundreds of small creatures, earthbound, airbound and inbetween, and I like keeping it this way. In order to do this properly, I think, the best way is to allow some "mess" (not as much as usually piles up in our yard) and a distinct lack of strict domestication. I explained all this to Mr. Everything yesterday and he's beginning to get it. I know it's hard for him: His father-in-law owns a local landscaping company, from which he learned this particular trade, so it's hard for him to accept a wild yard.
Mom awoke early (for her) yesterday because she was excited about watching Mr. Everything work. As he moved his work into and out of the house she chatted with him. The big event was the removal of the dying ornamental plum tree directly in front of our house. Although he decided to leave the roots in because he noticed that the tree, as he was cutting it away, was disintegrating from the inside out, thus the roots are not bound to revive, he cut it off deep below the soil line and restored the retained area so that you can't even tell a tree was there.
Today was a slow day for Mom, recuperating, as she was, from flushing. It went well, though, and she was in an excellent mood. I started her out on oxygen, as she's been using it a lot through the day lately (which is a change from about a week and a half ago). She became irritated with it, though, and took the cannula off. I waited to see if she was going to mouth breathe, as she's been doing this a lot lately. She was fine, breathing normally through her nose all of the afternoon and evening that she was up. I let her sleep in today, as she was up at least twice in the night peeing (because of the furosemide, I'm sure), and was resting nicely this morning. I became nervous, though, around 1300 and awoke her. She had slept herself into a stupor but once we got her going she was fine, and thirsty.
When I mentioned, tonight, that I need to buy supplies for pie-making for our Thanksgiving visits she expressed interest in going along. This, in itself, is the best sign. We'll see, of course, but she's excited about Thanksgiving and the trip. I'll keep my eye on her to make sure that we nip any signs of continuing torso fluid retention in the bud and she enjoys an alert, energetic holiday.
When she retired, tonight, I mentioned to her how good she was looking and that I thought we'd negotiated the fluid retention problem well.
"I was retaining fluid?" she asked.
"Yeah, but I didn't understand what was going on until yesterday, because it happened so slowly this time. I gave you a 'water pill' for it last night and that's why you were so tired today; I flushed you out. That's also why you had a meal so high in sodium and potassium things tonight."
She shook her head in amazement. "You mean you actually take all that into consideration when you feed me."
"Oh, yeah, Mom. With every meal. Nothing goes into your mouth that I haven't already calculated from a nutrition and body effect standpoint. I've been doing that for at least half the time I've been with you, so that would be, hmm, about five and a half years."
She thought for a moment. "You've been with me for eleven years?!?"
"Yeah. That's right."
"Goodness! It doesn't seem possible!"
"Well, it is."
"Well, I hope you plan to stay around. You know how I am about meals on my own, I just eat whatever's handy, whether it's good for me or not, whether I like it or not."
"Well, that hasn't been necessary for a long time, and it won't ever be necessary again."
"So, you've decided to stay?"
"Yeah, Mom. I'm staying. I'll be here for the rest of your life."
"Well, good. I've never eaten better."
It's the little things...
Later.
Yesterday was dominated by Mr. Everything's first visit of the season. There was a lot of yard clean-up for him, some electrical work inside the house, and he worked like a Mr. Clean demon. He finds it hard to accept that I don't want the yard whistle clean, that I want dying weeds and stuff left where they are and that I appreciate the large, unruly kindling pile in the back as what it's become this fall, an "apartment house" for a large number of Gambel's Quail, wood squirrels (which used to take up residence in our crawl space and between the walls of our house, harvesting insulation for their nests) and grey squirrels. Our property is a happy home for hundreds of small creatures, earthbound, airbound and inbetween, and I like keeping it this way. In order to do this properly, I think, the best way is to allow some "mess" (not as much as usually piles up in our yard) and a distinct lack of strict domestication. I explained all this to Mr. Everything yesterday and he's beginning to get it. I know it's hard for him: His father-in-law owns a local landscaping company, from which he learned this particular trade, so it's hard for him to accept a wild yard.
Mom awoke early (for her) yesterday because she was excited about watching Mr. Everything work. As he moved his work into and out of the house she chatted with him. The big event was the removal of the dying ornamental plum tree directly in front of our house. Although he decided to leave the roots in because he noticed that the tree, as he was cutting it away, was disintegrating from the inside out, thus the roots are not bound to revive, he cut it off deep below the soil line and restored the retained area so that you can't even tell a tree was there.
Today was a slow day for Mom, recuperating, as she was, from flushing. It went well, though, and she was in an excellent mood. I started her out on oxygen, as she's been using it a lot through the day lately (which is a change from about a week and a half ago). She became irritated with it, though, and took the cannula off. I waited to see if she was going to mouth breathe, as she's been doing this a lot lately. She was fine, breathing normally through her nose all of the afternoon and evening that she was up. I let her sleep in today, as she was up at least twice in the night peeing (because of the furosemide, I'm sure), and was resting nicely this morning. I became nervous, though, around 1300 and awoke her. She had slept herself into a stupor but once we got her going she was fine, and thirsty.
When I mentioned, tonight, that I need to buy supplies for pie-making for our Thanksgiving visits she expressed interest in going along. This, in itself, is the best sign. We'll see, of course, but she's excited about Thanksgiving and the trip. I'll keep my eye on her to make sure that we nip any signs of continuing torso fluid retention in the bud and she enjoys an alert, energetic holiday.
When she retired, tonight, I mentioned to her how good she was looking and that I thought we'd negotiated the fluid retention problem well.
"I was retaining fluid?" she asked.
"Yeah, but I didn't understand what was going on until yesterday, because it happened so slowly this time. I gave you a 'water pill' for it last night and that's why you were so tired today; I flushed you out. That's also why you had a meal so high in sodium and potassium things tonight."
She shook her head in amazement. "You mean you actually take all that into consideration when you feed me."
"Oh, yeah, Mom. With every meal. Nothing goes into your mouth that I haven't already calculated from a nutrition and body effect standpoint. I've been doing that for at least half the time I've been with you, so that would be, hmm, about five and a half years."
She thought for a moment. "You've been with me for eleven years?!?"
"Yeah. That's right."
"Goodness! It doesn't seem possible!"
"Well, it is."
"Well, I hope you plan to stay around. You know how I am about meals on my own, I just eat whatever's handy, whether it's good for me or not, whether I like it or not."
"Well, that hasn't been necessary for a long time, and it won't ever be necessary again."
"So, you've decided to stay?"
"Yeah, Mom. I'm staying. I'll be here for the rest of your life."
"Well, good. I've never eaten better."
It's the little things...
Later.