Apologia for these journals:
They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
For an explanation of what these journals are about, click the link above.
For internet sources that are about caring for relatives with moderate to severe
Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
links section to the right.
Mom is returning to her old habit...
...of taking the oxygen cannula out of her nose when she's sleeping. This morning was the second morning I noticed she'd pushed it up into her hair while sleeping. As usual, I replaced it, which automatically rouses her, reminded her, in no uncertain terms, that she needs to keep it in. This after giving her the "subconscious and unconscious mind lecture" last night that she must keep it in her nose. Although I'm not pleased that she's returning to this habit, on a positive note, it indicates she is fully comfortable in her own home and with herself, once again. When she started to do this at the facility, that's when I knew it was time to get her out of there.
Despite awakening between 1400 and 1430, yesterday, she didn't spen her usual amount of time awake. At 0015 this morning she was ready for bed. I was pleased. This should help us turn our hours back so that she has fully alert awake times while we have company Monday through Thursday.
A sweet situation has developed. The Little Girl, our senior cat who considers herself Mom's protector, has adopted the wheel chair as her preferred bed when Mom's not using it. Over the last few days her presence in the chair when we're considering using it to move Mom around the house is one of the factors that mildly suggests to Mom that maybe she'd better not use the chair, maybe she can "make it on [her] own". I expect, of course, that there will be times (as there already have been), more as time goes on, when I'll need to insist on chair use and shoo The Little Girl out of the chair. In the meantime, though, this situation is an incentive for Mom mobilize on her feet.
I've just completed a new "Current Med & Supplement Schedule"...
...over at The Dailies. I've changed the link to the right. If you are interested, the immediately previous link will also take you to it.
Funny thing: By type, her prescribed medications and supplements have slightly decreased, even though we have a new one, the Albuterol/Ipratropium inhaler. This pleases me. Aside from not wanting her to become one of the overmedicated elderly, because her med/supplement schedule is spread liberally throughout the day we have an active joke between us that Mom "can't do anything without taking a pill first." I wouldn't, of course, deny her a medication that was necessary and indicated. I'm assuming that at sometime before her death there may be a need for, for instance, antibiotic regimens here and there, perhaps pain meds stronger than her current and occasional acetaminophen, there may even be other meds that will be added to her schedule in order to achieve the "comfort and palliative effects" that Hospice is designed to ensure. As these meds crop up I will try to keep the medication schedule up to date.
Spiritual Counseling has been postponed until July 21st...
...at 1500. Not a big deal. Because Mom's day yesterday was lethargic and mired in lots of day sleep, we had a good evening, lasting until around 0230 this morning, devouring episodes of Sex and the City, which we haven't done in awhile. We talked, on and off, about the appointment today. Mom felt sure that she'd not mind cutting into her 12-hour-night-sleep to be ready for the appointment. She's excited about it. After just spending a good 45 minutes just trying to coax her to the edge of the bed, though, it became apparent that today is not the day for spiritual counseling. She seems to feel okay, although I remain concerned about the yellow sputum she coughed up yesterday after her nap and mentioned in yesterday's Dailies post. Since she's had several days of clear or white sputum and she is supposedly still under the influence of the antibiotics I administered to her through last week and the beginning of this week, I'm hoping this will not continue. I'm going to simply observe, today. If it continues, I'll call the Hospice nurse tomorrow and mention it.
At any rate, she's not into getting up, right now, and I can live with that. At this point I'd rather not interrupt her sleep anymore. I remember mentioning to the Spiritual Counselor that even if she was eating her breakfast at 1400 a visit would be fine. But, you know, I have this feeling that breakfast will not even be on the table by 1400, today...although I'm sure it will be in the works.
The Spiritual Counselor mentioned that I should know that "she may get her days and nights mixed up." I chuckled and said, "Oh, yeah, I know. We've been doing this for at least a couple of years. I just go with it. This is my job so it makes sense that we follow her schedule."
The Spiritual Counselor's response was a gentle, approving silence.
Oh, my! I think I hear a reconnaissance cough! Better check it out!
I finally got around to checking out...
...a New York Times blog called The New Old Age, written by NYT writer Jane Gross. I spent a half hour with it. If you're a caregiver to an Ancient One and you want confirmation of the kind of life you are now leading due to your caregiving activities, check out the voluminous comments attached to many of Jane's posts. I won't be including this blog in my links section, as my preference is for homespun online journals: The ones that don't have huge numbers of visitors but contain gritty, in the moment detail. But, if you're looking for confirmation and are new to this online caregiver support game, the above mentioned blog is a good place to start.
It's funny, too, since I've been doing this awhile and have had contact with other caregivers, all kinds of contact including online journal reading, confirmation from other caregivers no longer does much of trick for me. That isn't to say that it isn't helpful nor that it feels anything but good to hear from others who share, or have shared, my situation, in parts or wholly. I think, though, as my life becomes more intensely involved in caregiving for my mother, the time for confirmation has evaporated and with the time, so has the value. As I was reading through Jane's most recent posts I began to understand that the most valuable caregiver-to-caregiver support is probably that which is offered from a "retired" caregiver to an in-the-thick-of-it caregiver. And, yet, I also understand how it is that once an elder caregiver has "graduated" from caregiving to an elderly relative, a graduation that only happens after the death of the relative, writing about the situation requires an interest in revisitation that the caregiver may prefer, justly, to refuse. Jane has done most of her writing about her caregiving to her mother since her mother's death. My salutations to all past elder caregivers who come to a point where they are able handle the revisitations that support for in-the-thick-of-it caregivers requires. I have been blessed with some of these people, some of whom are regular commenters on my journal and correspondents. Damn, I'm sorry I didn't get it sooner, people. Caregiving is no easy task. Neither is reaching out from one's past caregiving experience, enduring the memories, especially the ambivalent ones, and extending both hand and heart to the likes of me. Thank you. Thank you. Thank you.
Time to awaken the Ancient One. We've got a busy day ahead and I am in no way prepared for it, sleepwise or otherwise.
I've reinstated reporting at The Dailies
As usual, it's pretty dry and will remain that way. I discovered, to my surprise, that it's been a year to the day since I last reported there.
Wanted to mention, too, that, yesterday, the rehab facility made it's second call in a week to see how Mom is doing. The first one, last Tuesday, was a pleasant surprise and, I figured, a normally scheduled courtesy call. The one yesterday, though, surprised me. I wonder if it's because I wrote a lengthy, very detailed critique of how Mom's care had proceeded throughout her stay. I wonder, as well, if they will be calling me again. The call came while the Hospice nurse was here, so I was perfunctory and responded that Mom was "doing fine" and that we were in the middle of a Hospice visit, but thanked "them" for "their" interest and encouraged them to call again. It'll be interesting to see if they continue follow up. I wonder if they are concerned about that possibility that I might report them to "authorities". I have no such intentions at this time. I'm too damned busy handling our life here at home. If they are concerned about such a possibility, though, that's to the good. These facilities need to be kept on their toes. Considering the way they operate and their priorities, a little fear couldn't hurt.
Later today, when this day of ours starts, at 1400 the Hospice Spiritual Counselor will be dropping by to talk to Mom. Mom requested it. I reminded her of the appointment this evening before she settled into bed. She hadn't remembered and was surprised but pleased. I can't imagine what the two will talk about. I'm not sure how much I'll hang around for that one. I'll wait to see if my presence in intrusive. I'm curious, of course, but I suspect this particular meeting could be corrupted by my presence and I don't want that to happen. I figure, they'll need to feel one another out and determine, between themselves, exactly what Mom wishes to take from this service and exactly how the woman who will be visiting will decide to relate to Mom and adapt her services to Mom's interest and needs.
I'm very tired, tonight. I need to get a better grip on our schedule, I think. Although I perceived my caregiving, prior to this period, as intense, it was easier before 5/14/08 to handle Mom's late nights and my need to be up and operating in the morning. Mom's days now, though, take so much out of me. I'm hoping I'm in a period of adjustment and will be able to pack the needs of this particular period under my belt as neatly as I have previous periods. We'll see.
To bed, to bed, to buy a white horse...what a lovely dream that would be!
Late Afternoon Musings on More Than One Subject
Not sure how many will be included. Depends on how much time I have and how many of today's musings I recall.
- Today has been an extremely lethargic day for Mom. I think the monsoon is contributing, but of course, that's not the main reason. In the bathroom while we were bathing, right after her breathing treatment, she coughed quite a bit and quite productively, which is usual after these treatments. Today, though, the amount of coughing irritated her. She gave me a look that I think I read accurately as her conveying, "Once I get rid of this coughing, I'll be all right."
"Mom," I said, "normally, I know, coughing like this is something you expect to get over. This isn't normal coughing, anymore, though. It's because of the tumor in your lung. It's still good for you to cough, believe me, but the chances are excellent that you'll be coughing like this permanently, until the end of your life. I know it's troublesome but, when you can no longer cough, well, that'll be a signal that you're close to not being able to breathe, anymore. So, you know, all this coughing is something we've just got to accept. It's a good thing, now. We want you to be coughing daily as long as possible."
Mom was quiet and alert as she listened to me. She didn't respond immediately, so I returned to our bathing routine. As I was washing down her left leg she said, "Well, I guess we have to expect this sort of thing, don't we." She was looking at me intently.
"Yes, I guess we do. Life can sure throw some interesting curves, can't it."
"That's right," she said. Then, she surprised me by picking up on my baseball analogy and continued, "We'll just have to adjust and learn to bat them out of the park."
I remembered that she told me, a long time ago, that when she and my father were first married he was addicted to baseball. In the tradition of many thrilled young wives, then and now, she decided it would be interesting and fun to share his addiction. She learned everything she could about baseball and compiled charts of stats so they could discuss players and games with authority. When she told me about this, many, many years after the fact, some years after my father had died, she related it without shame or a sense of silliness. She seemed to remember this period with minor delight. "Yep," I said, "we'll just bat as many out of the park as we can."
"You bet," she said.
- I decided to do some weeding today. I encouraged Mom to join me in the chair, as it has been an overcast day and I thought she'd enjoy supervising me, but she declined, saying she'd watch me from the dinette window while she enjoyed her licorice tea. I promised her I'd check in with her every 10 minutes or so and I kept my promise.
While pulling weeds I thought about how she will probably die. Astrology came into play...a standard rule-of-thumb I learned when I was tutored by an astrologer: The only thing the 8th house (which is traditionally called "the house of death") has to do with the "native's" own death, usually, is that the planetary ruler of the 8th house often described the manner of the native's death, in a forensic sense. The ruler of Mom's 8th house is Neptune. This planet rules death by suffocation (a variety of types of suffocation, internal and external). How interesting, I thought. We're definitely on our way with that one. My thoughts continued, when she is no longer able to cough, I can probably take that as a sign that Death is sleeping in our house. I began rehearsing what sort of conversations I would initiate as we acknowledged the presence of Death...you know, the "It's okay, you can go" kind. Suddenly I realized that, considering Mom's character, I probably won't be initiating those conversations, she will, simply because it will surprise her that Death has become our house guest. I can't even imagine what we'll talk about when she becomes aware of the fact that she's no longer interested in immortality. I suspect that some, if not all, of those conversations will be wordless, mostly eye contact, sublingual understandings passed back and forth. At any rate, I decided, I'm going to give up on forecasting how her final days will unfold for us. I'll just live in the moment and see what occurs to and for us in those days. Why try to interpret by the rule book what may happen for us when I'm not even sure which rule book applies to us?
- Speaking of living in the moment, it seems, within the last week and a few days I've so perfected the technique that I'm not even remembering what may lie in a path I recently traversed and have caught myself almost falling over things, like my mother's wheelchair this morning, for instance, which is so prominent when it's sitting in the hall outside the bathroom you'd think I wouldn't be able to miss it or forget it. I think this refinement of living in the moment is good and helpful. I also think it has its dangers. I guess I need to negotiate the dangers without abandoning the refinement.
- I've been muddling through making sense of my mother's hospital chart that was copied for the various facilities and, somehow or another, made it into my hands between the "respite" stay and the rehab stay. Reading it is maddening because it was compiled out of order and putting it into order is close to a fool's task. I've discovered five interesting things, though.
- The first is that the Emergency Room actually got almost everything right, including her medication list. They also didn't classify her as "failure to thrive"; they did note a "failure of activities of daily living" but expanded on this by classifying it as an adjunct to her dementia and that this was being addressed by my "presence in the home". The ER also noted that she was "speaking in full sentences" upon arrival and in "no apparent distress". Her lungs were noted as "coarse bilaterally", so the ER was on the right track regarding the possibility of pneumonia, too. The only thing they got wrong was that she "no loss of...bladder function". I'm not sure why they came up with that because I was clear that she is incontinent, especially when I noted after a couple of hours in the ER that she wears paper briefs and probably needed to be changed because I was sure she wouldn't be able to make it to the bathroom. They noted that she was unable to "ambulate" to the bathroom. So, all the mistakes in treating her happened after she was transferred to the ward.
- The second is that the first social worker who visited us on Thursday, the day Mom was admitted to the ward, wrote a bizarre report. I want to note, here, that this is also the social worker who was going to discharge Mom to the rehab facility on Friday of that week without taking into account that Medicare requires a three "night" hospital stay before they will pay for rehab. When I questioned her decision on this she apologized profusely and that was the last we saw of her. I'm pleased about this because here's the curious item she wrote in her report after interviewing us and before setting Mom up for too early discharge: "Per chart, relatives dropped pt. at ER, unable to further care for pt." There is nothing in the chart that indicates this. In fact, there are several places in the chart where it is stated and obvious that I brought Mom in, we live together, I've been taking care of her, and I brought her to the ER for medical treatment of a specific problem. I have a clear memory of parts of our interview with her, as well, and there was nothing in the interview that would have indicated to this woman that my mother had been "dropped off" nor that I was "unable to further care for pt." However, since this interview took place very early in her stay, I suspect this woman's evaluation had a lot to do with the "failure to thrive" diagnosis, as well as the decision to put Mom on Effexor and Aricept without consulting me.
- Speaking of Effexor, the third item is that the first Hospitization doctor mentions in one of his reports that I told him that Mom had been on Effexor prior to coming to the hospital. Not only did I make no such assertion, when I was finally allowed to view my mother's chart, after a pitched battle, and discovered the Effexor, I didn't know what it was and asked after its nature. When I discovered it was for "depression" I clearly stated, "She's not depressed. She's never been depressed. I doubt she knows what depression is. She's never taken anything for depression. Take her off it. Now!" She was taken off it, as I checked her med routine as it was reported every day, but the orders for Effexor were transferred to the rehab facility, anyway.
- Regarding the Aricept, I had pretty much the same reaction to this as I did to the Effexor, for different reasons, but concluded that she was to be taken off it, "Now!" Although this happened, this medication also followed Mom on the medication list delivered to the rehab facility.
- On a particular night during Mom's hospital stay she had a respiratory crisis. I was contacted very late before the crew working on her medicated her with one of three different medications to "relax" her (one of which was morphine, one was Ativan and was was Xanax) because I had expressed a desire, that was noted in Mom's chart, that before she be administered any psycho-active pharmaceuticals, at all, I was to be consulted. I discovered as I was reading through the chart that she was apparently administered all three at one time or another prior to this respiratory crisis during her hospital stay without me being consulted. The curiousity about this is that after a protracted disagreement with the Hospitization doctor and the head nurse on the floor that night regarding using any of these on Mom, they demurred, I stayed in her room, held her hand, talked to her, and within minutes she had settled down, was breathing normally, stopped sweating, tossing and turning and fell comfortably asleep. All of this episode was noted, with admirable objectivity, in chart notes. The final "treatment" was described as a decision to follow a "conservative approach". In conclusion, all I can say is, damn, no wonder the woman had so much trouble verbalizing during her hospital stay! And, the people attending to her care, except for the neurologist and his speech evaluator, continued, throughout, to consider these verbal difficulties "normal", despite my protest that they were not normal and, as well, despite the ER's report that my mother, upon arrival at the hospital, was capable of speaking in complete sentences and, as well, answering all manner of questions! Jesus!
"I don't want to miss the chicken quesadillas," she said, "you've been promising those for the last few nights and we haven't had them, yet!"
"Don't worry," I assured her, "we are definitely having them tonight, I'm not too tired to cook. And, you won't miss them. I won't make them until you're up."
"Is that a promise?"
"Nope," I said, "it's a threat."
Time to check on her again, although I imagine she'll probably sleep for awhile longer.
Oh, a couple more urinalyses have been entered from the hospital. And, as a note to myself, there's a "Vitamin D 25 Hydroxy Level" test I'm missing from the hospital, too. I have no idea what that is, but it sounds interesting.
End of musings.
I think I'm finally beginning to get it.
Although my Ancient One, my mother is back home, and according to most appearances she seems to be "back", as well," she's back in a somewhat altered manner, a manner that probably began to take hold of her some months previous to her legs collapsing on the evening of 5/14/08. She wasn't coughing before, except during her cold, but, after the interview today with the Hospice Nurse who is substituting for the Hospice Nurse who has been assigned to us who is on vacation at the moment, pertinent aspects of her condition, now, and what I am convinced can legitimately be labeled her "decline" are apparent to me.
She wasn't coughing before her hospital admission because she wasn't being provoked to cough. She is, now, with the breathing treatments, and she coughs a lot every day, especially after the breathing treatments. It's good, full phlegmy coughing...and, I realized, today, it isn't going to go away. Her lungs are not going to dry out, nor are they going to become stronger. Chances are, from what I'm understanding, if she'd had the breathing treatments before she may not have developed pneumonia. Then again...
Anyway, what lead to my consideration of this was that the Hospice Nurse listened to her lungs today and mentioned, later when she and I were discussing Mom's coughing schedule, that, even though Mom had partaken of a breathing treatment about two and a half hours prior to the nurse listening to her lungs, Mom's lungs were fairly well blocked. There were other details, too, that dropped into place, like a discovery I've made over the last year which the nurse mentioned without me prompting her, that I usually dial up the oxygen when she sleeps to the same point it's at when she's moving around the house. I start her out at 3/lpm, then, about an hour or so later, when I'm sure she's asleep, I check in on her and something about her breathing always causes me to dial her up to 4/lpm. The nurse pretty much described what I've been observing and to what I've been responding.
So, Mom's coughing will be a part of our life, now. This is definitely a decline...but, at least she's coughing, which is good.
Mom took significant part in the interview. In some cases she described things I didn't think she'd noticed: The color of her sputum (when she doesn't swallow it); she also knew when she'd had her last bowel movement (yesterday). Today she wasn't sure where we lived, so the nurse prompted her. I mentioned that we spend a lot of time in Iowa, but I guess Mom wasn't even sure we were there, today.
I learned that I can give my mother the Ipratroprium part of her breathing treatment three times a day, if necessary. I didn't know I had a choice...I'd just been doing it, anyway. I can also give her the Albuterol part for times a day if her breathing appears to be unusually labored. I learned, as well, that I don't need to give her the zinc, anymore. I wasn't sure why the rehab facility was giving it to her and never remembered to ask. It seems it is given to promote general "healing", but there isn't evidence for or against it's utility, so I'm not restarting it.
I think I'll restart the Mom's Daily Tests & Meds area, although without as much of the explanation as I used to include. I think this is a good time to record her stats, again, as this may also help me describe decline, or lack thereof, to Hospice and keep me aware of what's going on with Mom, as well. I probably won't include what she eats unless it is significant in some way or explains stats I'm recording. I'll also be including her temperature, which I take regularly in the morning, now, before we head into the bathroom for bathing.
Today, when I asked Mom is there was anything in particular she wanted to do, she immediately mentioned, "I haven't seen any good movies for a long time. I've missed that." This isn't completely true, as we've attempted to watch a few movies but I'm adjusting to her new movie viewing schedule, which doesn't seem to include her "mornings" anymore. So, today, we managed a full movie and it looks like we'll be doing that for awhile. I'm having a little trouble, at the moment, getting her outside, as I'd planned, because the weather isn't cooperating with her up times, but as soon as the monsoon is over (to which I, personally, am not looking forward), I'm sure we'll be getting outside, more. She is no longer hesitant to use assists, including the wheelchair, in public, which is a nice change. That, I suppose, could also be indicative of "decline", but I prefer to think of it as a necessary, long needed and very welcome adjustment.
Think I'll head over to the Movement Journal. Nothing spectacular, just the detail, to report. Then, I've got to get to bed. I've got a couple of errands I need to run before Mom arises tomorrow, so I guess it'll be an alarm clock day.
Technical Ketchup, Mostly
I'm staying on point, so far (only two days to judge, though), with the new movement journal. There is a new entry for yesterday, if anyone's interested. To summarize, yesterday was Mom's first legitimate "sleep day" since she arrived home last Monday. I was mildly surprised but not caught off guard. I was wondering when we were going to have one. It's to her credit that it took so long for one to kick in. I was tired, too, body tired...all the increased intensity finally caught up with me. I'm still recovering, today, although I don't feel as though movement is as much of an effort as it was yesterday. Despite having a sleep day, Mom moved well during the first part of her day. The "sleep day" kicked in right after breakfast, though.
I'm beginning to enter tests. I'm not going to bother to mention them individually, since there are so many. There is no pattern to their entry. Last night I entered three blood tests and a urinalysis which varied from before she went into the hospital to the last week of her rehab stay.
I noticed, yesterday, as well, that from the top of Mom's head to the tip of her toes she's looking "normal" again. Good color, not dehydrated nor over hydrated, no edema, arms and tips of fingers losing all the bruising that appeared through her facility stays, alert countenance. I guess I slowed down yesterday enough to notice that Mom's really back. I also reflected that indications of her internal state are as they were before everything began to fall apart: Boweling as before, healthy appetite (which never lagged except when she was in the grip of pneumonia), her ability to cut meat has returned (it was a little iffy even on the day we left the rehab facility), her willingness to report minor itches and aches without prompting if she happens to be experiencing them.
So, overall, we're doing well, even though we've hit a small wall that, although somewhat smaller than yesterday, appears to still be in our way today.
I hear Mom's reconnaissance cough, at the 10-hour-sleep-mark. I wonder how she's doing today.
Oxylated: Part 6
Deep, cleansing breath, here. The situation has been handled and Mom's oxygen delivery system will remain the same as it has been in the past.
- Regarding our Hospice company's status as a TriCare Provider: Under my mother's TriCare program, which is TriCare for Life, the "hospice pot" kicks in as long as the Hospice company is Medicare certified and the Medicare "hospice pot" is kicking in. Our company is Medicare certified and the Medicare "hospice pot" is kicking in. TriCare for Life does not require a separate TriCare Provider Status. Sigh of relief.
- IHNTL was appreciative of my figures for our oxygen company's insurance billing. She asked me to repeat them, so, apparently, she wrote them down, then mentioned that the figures she'd been given were "off hand" from "someone who doesn't handle [the oxygen company's] billing". Ba-da-boom.
- I gave her my two suggestions for tweaking the billing in our oxygen company's favor, namely:
- Again I mentioned declassifying Mom's oxygen as a lung cancer related medication, which is completely possible and would ensure that our oxygen company's insurance payments would not drop (in case they are under Mom's "hospice" designation, although I'm not sure that this is happening, can't actually find out whether it is, yet, and rather expect that compensation for like services under the "hospice pot" would not be any different than they are outside of the "hospice pot"). About half of my mother's medications could be classified, or not, as such, and;
- Having the Hospice doctor rewrite the prescription for a higher level of oxygen, thus, I'm sure, kicking in a higher level claimed billing for our oxygen company which would go further to cover whatever the oxygen company claims they're eating. IHNTL neither confirmed nor denied these as possibilities, but she promised she would work with our oxygen company to wrangle a better billing status for both. I reminded her, as well, that during Mom's first couple of years with this company she was using so little oxygen off the same prescription that they were probably making money on her.
- She thanked me for all my work, calls and effort on behalf of this billing problem and asserted that, while grateful, their company didn't want to create for us this sort of situation wherein I was stressing about billing problems on the hospice company's behalf. I was very grateful to hear this. I was hoping, prior to calling IHNTL, that I would hear this because it occurred to me, this weekend, while I was researching all this stuff and thinking about it, that this is crazy...shouldn't Hospice be making my life easier rather than harder??? It is good to know that our Hospice company feels the same way.
- I am relieved to know that we won't have to switch Hospice companies. This company has, as I've mentioned before, performed minor miracles on our behalf. They can't completely control the problems we've had with Durable Medical Equipment, but, you know, there aren't very many companies in this area that are reliable enough for any hospice company, here, to work with, so this is something I can deal with myself without heartache. Although she assured me that receiving defective equipment was not something their company was happy to hear about and, as well, something they can and will address, I countered that I don't have the inclination to go through successive deliveries of defective equipment that needs returning and the excuses from the equipment company with which I've had to deal so far just to get something that works, so, if I can find reasonably priced, sturdy equipment, I'll just outright buy it and save myself the trouble of multiple botched deliveries. She understood.
I hear my mother's reconnaissance cough, right on time, 12-hour-sleep-mark minus about a half hour. Obviously, she's reverting back to her normal hours. Hallelujah. Life is returning to a recognizable version of normal.
I just began...
...Part Two of =>Moving =>Mom. It's called Life after Death Sentencing. The link will take you to the first post, which is a review of today's (actually yesterday's, considering that we've passed midnight,I guess I should make that clear, over there) movement. I was flush with the excitement of starting this journal section so it's a bit detailed and wordy. As time goes on, though, I expect it will be more technically descriptive and concise.
In case you're wondering, I decided to set up a new section for it because it would take too much template wrangling effort to distinguish the difference between the former moving journal and the new reports.
I haven't yet added it to any of the links sections and I'm too tired to do that tonight, but I will.
I'm feeling very calm and directed about tomorrow. I even intend to sleep in, since Mom's and my day started and ended late, today. I'm unplugging the phone to make sure I am allowed to start the day when I'm ready. If anyone ignores my messages and decides to show up without announcing their arrival ahead of time, well, they deserve whatever they get when I answer the door.
Today is the first day in seven...
...in which I haven't thought that I'm not going to make it through this last leg of Mom's and my journey together. I'm not sure why I'm feeling better about being able to hang in here. There's nothing different, today, in what Mom is requiring in the way of care; in other words, no let up, but no appreciable ramping up, either, unless you consider that doing her hair, which happens every other day, a minimal ramp up. From a medical business point of view we're actually in a slightly worse position, since I expect we'll be switching Hospice services this week, and I hate switching. From a purely business point of view, I went through a couple of boxes in which I'd been filing mail and discovered some past business to which I forgot to attend during the several weeks of living in two places, although nothing unforgivable. But, finally, I guess, my caregiving muscles stopped aching during all the extra moves this period is requiring and are working smoothly and easily.
So, why do I record the horrible episodes when my soul is shaking with fear and pain when, if I would just look back, I'd discover that I've had similar episodes before and made it through? I record them because it's all a part of the flow of caregiver-think. I imagine there will be more episodes of caregiving muscle protest before Mom and I have come to the end of our journey. I hope I have the hindsight to remember that, so far, I've always made it through, but it's not in my nature to do this so I doubt that I will. Every episode will seem as though I've reached the end of my endurance. Every episode will trigger depth grief that seems to prophecy a tragic end. And, I am absolutely certain I am not the only lone (in the sense of doing All This alone) caregiver who experiences these episodes of impending tragedy; nor am I the only one who makes it through them, rather, who has made it through them so far. My educated guess is that there are also many caregivers who have a final episode and drop out. I record my episodes, successfully endured (or, who knows, perhaps not, in the future) for all of us who are overwhelmed, whether we sink or swim. They need to be brought to the light, no matter how enervating and shameful they are, because, I believe, they are so common and so potentially destructive...and, because, right now, we as a society have few legitimate, life affirming methods of dealing with these episodes. Respite? Sure, if you want, as happened in Mom's and my case, to have your care recipient develop a bed sore, teeter on the edge of "failure to thrive", have medicines administered in a method that severely undercuts their effectiveness and have yourself end up scurrying about to reverse both of these, neither of which would have happened, you know, if your care recipient had been at home, no matter how tired and overwhelmed you are. Spiritual Counseling? Please! Don't "grace" me with yet another version of the oxygen in the airplane analogy; or a "your reward will be great" suggestion. Practical counseling? Sometimes that actually helps...as long as it is to the situation, a situation which has been acutely observed by the adviser. Often, it is not. Sympathy? The best sympathy comes from the street, I've discovered: Overheard conversations between caregivers and their friends and relatives; recognition of status when one's "care-dar" kicks in and caregivers silently acknowledge one another eye to eye; a hand on the shoulder when someone comes up to Mom and me in public and says, "I did that for my mom; thank you for reminding me; it was hard, but I wouldn't change a second of it."
So, you know, I'm not asking you to bear with me when I describe the dregs of these caregiving days. I'm just describing. Sometimes it's holy. Sometimes it's a holy terror. It's all caregiving, though. All of it. It all deserves to be recorded.
I'm thinking, by the way, and I'm just putting this out there, as my time is even more limited, now, than it was prior to the evening of 5/14/08, that I will be resurrecting the =>Moving => Mom journal. Today it occurred to me that it would help if I record her movement, day to day, to help me watch for increasing strengths and weaknesses. This would put me in a better position to accurately answer the oft asked Hospice question, "Are you noticing any decline?". Exercise sessions, when they happen, will be included, but mostly I think I'll be describing, bluntly, how and how much Mom moved on any particular day. We'll see. I still have loads of tests to record (I finally found most of them, today, and have a list of those of which I still need to obtain copies, like, for instance, the final Chest CT used to identify Mom's lung tumor); I still have to set aside some time to restore my Mac files; I still have a load of other items on my steadily increasing mental list of Things to Do. So, you know, it's another item.
Oxylated: Part 5
I just did a little checking.
- For the month of January of this year, which was a heavy use oxygen month, our oxygen company billed Medicare/TriCare almost exactly half of what they supposedly told IHNTL they "lose" on my mother.
Medicare/TriCare paid our oxygen company 58% of what our oxygen company billed them.
- For the month of February of this year, also a heavy use oxygen month, our oxygen company bill Medicare/Tricare a little more than half of what they told IHNTL they "lose" on my mother. Medicare/TriCare paid our oxygen company 56% of what our oxygen company billed them.
- In addition, Medicare, alone, paid a little over 100% more than our oxygen company told IHNTL they receive from Medicare every month.
Last night I received yet another call from yet another Hospice nurse who wants to visit with my mother and me. She asked if we had any needs. I stuttered a bit, then related the entire story of IHNTL's Thursday phone call. I also covered what I'd been thinking since the call and the research I will be doing tomorrow regarding finding out if our Hospice company is a TriCare provider. I concluded by telling this Hospice nurse that our "need" is that we do not "need" this sort of billing problem thrown in our laps and negotiated in such a way as to make our lives harder than they already are.
This new Hospice nurse was obviously clueless about TriCare and its policies regarding Hospice providers. She explained to me that "Medicare Hospice" is a completely different system than "Medicare" and involves a "pot" out of which Medicare pays Hospice bills. No other insurances come into play (which is actually different than other information I've been given about this Hospice provider and private insurers). I responded by telling her that TriCare also has a "Hospice pot", but a Hospice company can only dip into that pot if they have been approved as a TriCare Hospice provider and my research tells me that this company may not have sought this approval, which I find astonishing, considering that its administrative umbrella, the local hospital, is listed as a TriCare provider. I told her that I don't understand how this Hospice company is "excuse my French, kicking itself in the ass regarding funding" by not being an approved TriCare provider. I told her that I downloaded and printed a section of the TriCare Reimbursement Manual involving Hospice and discovered a section that lays out the process of applying for TriCare approved Hospice status and that it seems not only straighforward but is simply a matter of being Medicare approved (which our company is) and filing paperwork. I concluded by telling her, at this point, it looks as though there are three ways to solve this oxygen billing problem:
- Our Hospice quickly become a TriCare approved Hospice provider;
- Our Hospice declassify my mother's oxygen as connected to her lung cancer so that her normal Medicare/TriCare coverage can subsidize it as before, which should satisfy our oxygen company;
- Mom and I switch Hospice providers.
- Our hospice should do everything they can not to be held hostage by our oxygen company's creative bookkeeping;
- My mother and I would prefer not to have to make a switch, but if we have to, we will.
You may wonder why I bothered to go through this with a member of our Hospice team who isn't directly involved in finances, especially since I knew, ahead of time, that I was speaking with such a member. Well, you know, she asked what our "needs" are. So, I told her.
At this point, I can't wait until tomorrow. I am sure that I will find, bright and early, that our Hospice company is, indeed, not, a TriCare provider. I expect I will also find out that, for some reason to which I may not be privy, our Hospice company will be reluctant to apply for TriCare provider approval. If this happens, I will, of course, immediately be on the phone with the two TriCare approved Hospice providers serving our area. I will, among other questions, ask who their oxygen/medical equipment provider is.
In the end, it looks as though both our current Hospice provider and our oxygen/medical equipment provider will lose about a week's worth of adequate payment for their services, including medications and durable medical equipment. I'm concerned about this, but it isn't something I can prevent.
I should have researched our current Hospice provider; however, I believe I made a reasonable assumption that since their administrator is TriCare approved, they were, too. At least I'm catching the error of my assumption before too much havoc has been created.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson