Tuesday, November 25, 2008

I Don't Think Elder Care Was Ever Considered When The Concept Of Work/Life Balance Was Created

Some of you may know that ever since mid-August, I have been trying with varying levels of success and failure to oversee the care given to my Mother-In-Law, who is in declining health. On top of working from home full-time, on top of being a wife, on top of being a mother to G and S. I have been able to take this on for B and his older brother because my work thankfully has been flexible in allowing me to do what is needful. That, and I'm the only one who has the PTO to do it. As of yesterday, I have reached my personal breaking point in regards to this. I have screamed and cried my heart out to the point of making myself sick. Twice. In one day. I have slept all of 3 hours in the past 24. The system thinks she is faking a lot of her external symptoms and no longer wants to care for her in a nursing facility setting, like she needs. So they want to move her "home." Which, since we terminated the lease on her apartment, is our home. I am beside myself right now. MIL is truly sick and truly needs 24/7 care. Anyone who interacts with her one-on-one will tell you. Me and B both work to keep a roof over our heads; if one of us were forced to quit working to care for MIL, we would lose our house and become a sy and I cannot bear the thought of G watching her beloved Grandma Ancy waste away in front of her eyes. I have tried to be pragmatic and proactive, but it seems like no matter what I try to do to help MIL, it turns to shit somehow. I spent between 1:15 and 2:30 AM this morning typing up the following document, to help me get some of my frustrations out and my thoughts together for the upcoming care plan meetings and to help appeal the state decision. She has been at 2 different facilities, and there are multiple state-based Agencies involved too, hence the multitude of references to them.

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It seems we are at an impasse as to what to do with Nancy. I think we are all in general agreement that her current state is not one of a rehab-type patient. As her family, we feel that we cannot care for her medically in the way that she needs, despite what the PAS agency and Aging and In-Home Services would like; that is to say, using THEIR providers of in-home care so THEY get the state money instead of a long-term facility. Everything seems to root back to the initial assessment carried out at Kingston. In the beginning, we went in on good faith that she would indeed rehabilitate and the dialysis would help her and she would be able to return to independent living. The 90-day admission was approved. As Kingston advised us her 100% Medicare coverage would run out on day 21 of her rehab stay, we made the decision to look for a long-term placement and based on availability, went with Miller’s. We were promised by the staff at Miller’s that “yes, she is considered a long-term care patient here even though she will be staying in the rehab unit.” Based on their verbal assurances, we trusted that this was the case and that the proper paperwork had been filed by the staff that handled such things to switch her with the state from “rehab” status to “long-term care” status, and that Medicaid, once it kicked in, would cover her expenditures, minus her liability after Medicaid was factored in. As we have found out recently from the PAS agency, that is not the case, and needless to say we are distraught. We as the family feel we have been misled and uninformed about all facets of the course of treatment and how the Medicare reimbursements worked. If we had been made fully aware of the ramifications, we can assure everyone that we would not be in the predicament we are now. I know that pleading ignorance is not the greatest of excuses, but we have been flying by the seat of our pants since Nancy first got sick in August and have probably placed more trust than we should have in the people who are in this business. After all, they’re the experts and they’re the ones who not only need to take care of Nancy but us as well to make sure we are kept up to date on the Medicare billing and reimbursement process. Miller’s claims they always had someone from the business office or MDS in the care plan meetings I attended; THEY DID NOT!! The typical attendees were Social Services, Nursing, Dietary, and OT/PT. To my knowledge, there was never anyone from General Administration or the Business Office in attendance. I never spoke to anyone in the business office until 11/10, when the second Medicaid application was submitted. The first one we did in August was denied because I was unable to get all of the income verifications before the submission deadline, and was advised to refile when I had everything.

Unfortunately, the most recent PAS report, which was filed 11/14, now states that Nancy is no longer considered a reasonable candidate for nursing home placement and is recommending that she be returned to her family, to live with us while receiving the “cost-saving benefit” of in-home services. From what was relayed to me by the person that did her assessment, Nancy was upset at the visit and did not allow the assessor to speak with her. Instead, the assessor went to look at her chart and spoke to a couple of staff members, who told her that she had been refusing her PT and had refused to go to dialysis one time. Based on this assessment, the PAS report states what it does. As the family, our concern is that this assessment was unannounced, and that neither Aging and In-Home, nor the nursing home staff, alerted us to when the assessor would be there. We could have defused the situation and at least allowed the assessor to get a more accurate picture of Nancy’s current state of health. We feel that she needs 24/7 custodial care in a nursing facility because she simply cannot take care of herself anymore, and we cannot take her in because we cannot give her the proper care she requires and perform the duties that nursing staffs are trained to do. WHAT DO WE HAVE TO DO, OR HAVE DONE, TO GET HER TO BE ADMITTED TO ANY FACILITY AS A PERMANENT PLACEMENT/CUSTODIAL CARE PATIENT? WHAT NEEDS TO OCCUR FOR HER TO GO FROM “REHAB” PATIENT TO “LONG-TERM CARE” PATIENT? No one seems to know or they don’t want to give us an answer.

Because of our lack of understanding about the Medicare reimbursements on the PT, and the fact that we had verbal assurances that she was not a rehab patient, we no longer felt she was getting benefit from PT and spoke to the head of the PT/OT department and asked for it to be discontinued, as it was clear that Nancy was not faring well between it and the dialysis. If the PT/OT staff had taken the time to proactively call the family and explain to us that Medicare would no longer cover Nancy if she stopped it, rather than wait for the family to call and inquire about why Nancy felt pressured and intimidated by the staff and forced to do it, again, things would be a lot different now.

We are also tired of hearing reports that Nancy is “faking” certain symptoms for attention or sympathy or what-have-you depending on the time of day. She is tired of trying to convince you otherwise, and quite frankly so are we. It’s insulting and degrading to her and is detracting from the level of care she is getting. Yes, we are aware Nancy is prone to dramatics. Yes, we know there are psychiatric issues exacerbating things. But we are taking steps to further investigate her issues with tremors and swallowing and slurring speech. If the neurology evaluation she is scheduled for on 12/11 comes back with nothing, fine, so be it. We can accept that it is all psychiatric/psychosomatic because of the PTSD. But if the evaluation comes back with a diagnosis, we expect that the staff takes it seriously and affords Nancy the dignity she deserves. And by the way, I specifically asked Laurie Barnes to reach out to Dr VanDenDrische on the day we switched Nancy’s in-house physician for a neurology referral, which she promised to get next day. We are STILL waiting to hear about that. I’m glad we contacted her non-facility Primary Care Physician for one.

Since I, as Nancy’s daughter-in-law, happen to have a work situation that is flexible to family needs, I have been primarily overseeing things as best I can, all the while continuing to work full-time and care for a three year old and an infant. I am so tired of hearing things like, “Oh that’s not my area but I’ll find out whose it is”, “Gosh that’s always communicated to us, I don’t know why it wasn’t this time,” and many other clich├ęs that mask the fact that the communication between some or all of the doctors and facilities involved in Nancy’s care has broken down somewhere along the way. I have been doing my best to pick up the slack on this, but I expected to not have to be quite so proactive. I can’t help but wonder if it’s because she does not have private insurance, or is not a private-pay patient. We know Nancy is destitute. We realize that she is going to be dependent on Medicare and Medicaid for her health needs. Why does the medical community feel the need to treat the less fortunate, and their need of government funded programs, like gum on the bottom of one’s shoe?

As time has passed, we as Nancy’s family have watched as one negative health issue, the uncontrolled HTN which had made her chronically ill with flu-like symptoms, was traded for another, worse condition, the end-stage renal disease. The dialysis, having gone on for three months now, is only wearing her down and is not improving her quality of life that we can see. There are also the previously mentioned psych and neuro issues that have been exacerbated. We seek guidance on long-term care and even hospice options for her. Nancy knows she is dying from the renal disease. We didn’t expect her to go downhill so fast; we truly had every intention of seeing her bounce back and return to independent living. We are now confronting quality-of-life issues and, yet again, are learning via the “trial by fire” method. And yet again, we are asking the very system that was set up for people in situations like Nancy for help. And help, for what appears to be an arbitrary reason in our eyes, is not coming. It’s simply no longer acceptable to us.

Tuesday, November 11, 2008

Alex, I'd like "Potpourri" for $1000 please...

I feel the need to blog but don't have a specific topic to blog about today, so here are some random mutterings and mini-rants and raves.

Me and B are loving the new bedroom furniture. Especially the new bed and all the "possibilities" that come with it, since it's higher off the ground than the old one. Merry Christmas to us indeed!

I've decided to host Thxgvg for my dad's side of the family this year. Since we're doing it the Saturday following the big day, I will be doing pork loin instead of turkey. Everyone gets turkey'd out over that long weekend, so I figure change it up a bit.

I'm still in limbo over my job. I'm tired of having the sword of Damocles over my head. That string it's been hanging from for a year now is looking pretty sketchy. Of course I want to stay on permanently and work from home with the occasional jaunt to the Boston-area, and don't get me wrong, I am beyond grateful for not being let go right away when the old office closed, but being in this state of perpetual temporariness has certainly tested my patience. I feel like I'm getting rusty since all I've done has been more of an advisory and support role rather than doing what I love, talking to my clients. And I am getting bored with the limited role. So make a decision already.

I still have a shit-ton of last year's Christmas family picture cards that never got sent out or given out. It looks really dorky if you try to send them out with "and Baby" on them in the family names, and that "baby" has now since been born...

And stop telling me what a good daughter-in-law I am for doing what any family member would (or should) do for an aging parent that they are on good terms with. No, wait, scratch that. Keep telling me that. Some days it's the only thing that keeps me from throwing my hands up and curling into a ball because it's such a monumental task.

I think that's all I got right now.

Sunday, October 12, 2008

Obligatory Political Blog, 'Tis The Season After All...

"Save Time...See It My Way!" (or something like it) - Lucy Van Pelt

I wish if I were to ever run for the Presidency that she'd be my running mate. Then again, she'd probably want the job herself. So much for that.

It never fails to amaze me how the claws come out for Presidential campaigns. Heaven forbid this be a dignified and emotionally Vulcan-ish process. It can bring out the best and the worst in people who are running the campaigns. And the candidates get caught up too...

(insert failed rimshot here)

Things like this turn decent, hard-working, singularly intelligent people into stark-raving lunatics, be they blustering neocons or bleeding heart left wingers, all pleading their candidate's case and not even beginning to try and comprehend another's (gasp!) differing point of view. Mainly because they are too busy shoving ideology and dogma down the seemingly unable-to-decide-block's collective gullet. Well, just because I consider myself a political mutt (3/4 Libertarian, 1/4 Democrat who is pro-death penalty and with an "if guns are outlawed only outlaws will have guns" outlook on firearms) and have not declared a political affiliation on my voter registration card does NOT mean I am undecided and therefore am in need of your regurgitation of the party line. Pardon me if I don't identify myself in terms of black and white, or red and blue as the case may be. I am not the wishy-washy fencesitter you would like for me to be so you can proselytize and evangelize while fully enraptured on my front porch. Quite frankly, I am sick of it and am so over you. And don't give me that shit about how the First Amendment guarantees you your right to do it. It also guarantees my right to free speech by slamming the door in your face (and with any luck damaging some toes or a nose that got a little too far in the doorway - screw you, you had it coming anyway).

And the internet has only served to exacerbate this even more. I cannot log on to a personal-interest forum of any sort without seeing a thread or five dedicated to the sycophants of the two-party system, and then watch from my PC screen those that were the best of internet friends rip each other to shreds over the fact that one supports the opposite candidate from the other and spews political opinion that is 180 degrees away from the other. Why can't you understand what I'm saying?, Why can't you see what I see, Why can't you just save time and see it my way?

It sickens me. Unfortunately, it's not as easy to tune it out on the internet. Sure I could just turn my machine off or stop frequenting my web favorites, but that's like cutting off your nose to spite your face. There's a proper time, place, and context for these types of things. It's just not in my Yahoo or Myspace groups that pertain to being a mom and commiserating with other moms about 3-year-old tantrums and 8-month-old diaper disaster war stories, or in my Star Wars BB forum, or my e-mail box attached to yet another edition of those utterly addictive LOLcats. And if I felt the need to educate myself on all viable candidates, I would do so myself. You know, without the help of a narrow-minded zealot. No, really, I'm fine, I don't need your assistance to figure this out.

"Read between the lines/criticize the words they're selling/
Think for yourself/and feel the walls/become sand beneath your feet."
- Queensryche, Anybody Listening?

Monday, August 18, 2008

Embracing My Inner Gaming Wench

So, me and B dropped the kids off with Grandma and Grandpa and took a long weekend in Indy, attending GenCon. For those of you unfamiliar with it, GC is the biggest gaming convention in the world. Gaming as in Dungeons & Dragons, Magic: The Gathering, and anything else that would appeal to a predominantly (but certainly not exclusive) male audience that isn't, shall we say, athletically and/or socially inclined but very intelligent. In short, a geek. Contrary to popular belief, geeks come in all shapes, sizes, genders, colors, ages, and backgrounds, and are quite friendly once you get to know them. However, the stereotypical socially awkward physically unattractive young man who still lives at home is still quite prevalent.

I decided to start out by easing into things with a couple of seminars that piqued my interest, Gender in Gaming and Women in Gaming. I learned a great deal and was able to share my experiences with those present and it just energized me to the point I decided to take the plunge, going from "the gal that played because her significant other plays" and find my own inner girl geek and open her eyes to what B has known for a long time.

As I hinted at earlier, the main demographic for this kind of thing is male. And strange things can happen when (gasp!) a girl comes to the male-dominated table for the first time, especially if she's not just the GameMaster's Flavor of the Week (these guys actually DATE? Gee who knew?) and actually has an idea of what she's doing. We ladies can be treated with curiosity, annoyance, even downright hostility. It is not too often that the guys will treat a first-time gal at the table with respect and look at her as an equal. But that is changing. Just as the Women's Lib movement started change in the realms of working outside the home and reshaping women's role in society, the winds of change are beginning to blow in the gaming world. At GenCon this year, approximately one in five attendees were of the female gender. I remember a time around 2000 when I used to go to the MTG prerelease tournaments in Indy, with B and our group of hubby and wife friends. Me and the other two gals from our group would be the ONLY women in a sea of about 300 or so guys. And we felt like we were a sideshow act on display with those brave enough to even come up to us (they're pretty timid to begin with) and marvel at our mere presence there.

Then there's not only the matter of a lack of girl power in the player community. The way that female characters are portrayed is a whole 'nother issue. As much as I can identify with a female character I have created, the only type of woman portrayed in artist illustrations is one with a body that could have leapt off the pages of Playboy or straight out of WWE Monday Night Raw. We ladies understand that yes, it's the nature of the beast if you will, but how's about some variety? How's about some more beefcake to go with the cheesecake? Or a more prominent portrayal of women in full plate armor rather than chainmail bikinis?

Anyhoo, I managed to have a great time at GC with B. There's much more to it than just the games I mentioned. We picked up some new games that are more tilted to the "beer and pretzels" set that we both enjoyed while down there. And I learned more about my own gaming preferences as I opened myself up to what was there. Most importantly, I have a newfound sense of pride in being a girl gamer.

Monday, August 4, 2008

Good Mamas Go To Heaven, Drama Mamas Go Everywhere

I have enjoyed getting to know the gals in my moms groups, and all of the differing personalities therein. It's probably the most I've ever used that degree in psychology I picked up while on the 10 year plan in college. But the one thing I've noticed is that the gals who have things of interest in their lives, be it some sort of custodial drama or frequent travel or money's tight or great stories of college escapades, those gals have made for some of the absolute funnest times I've had. I certainly hope I've not been a stick in the mud, given my own soap opera of a job sitch. But those whose lives are thankfully very status quo, hangouts are definitely more mellow and low-key. Not that that's a bad thing at all, one most certainly needs some mellow to balance things out. If everyone were the same, that would just make life boring. But I just can't help but size up how us mamas do things, and I realize that I'm a fairly odd duck.

As if you couldn't already tell from the blog's title, I'm just not an average soccer mom; no McMansion in the burbs, no upwardly mobile six figure income, and I sure as hell cannot afford to send the kids to the Ritz Carlton/Harvard U. daycare while I plan the monthly book club dinner party/charity event for the hubby's professional association. I don't even own a minivan fer christs sake. Nope, I haul my kids around in a red Pontiac Vibe (ok ok so it's a station wagon, sue me) with the Lacuna Coil or Queensryche or White Zombie wafting out of the CD player instead of The Wiggles or Kidz Bop (I'd like to Bop them alright, multiple times over the head with a blunt object...). And I work full-time for a paycheck, as does the hubby. And our home is a small ranch on a slab. And it's MESSY!!!! The maid never made it across the border I'm afraid, all that pesky Border Patrol and such. And the kids go to the cheaper in-home daycare but are loved and nurtured just the same as they would be in the expensive ones. And I am gleeful about all of it.

Viva la difference!!

I also no longer believe in such a thing a "drama free mama." If you claim you have no drama in your life, and that things are hunky-dory, you are lying through those perfectly straightened and laser-whitened teeth of yours. Even if it's just the dog barfing on the berber in the front room, or you forgot to replace the amateur sex film you and hubby shot that was still in the DVD player and hit play thinking it was your kid's Barbie movie, it still counts as drama.

Thursday, July 24, 2008

Payback's a Bitch and She's Covered in Cheese

So, the whole trying to get G to eat her veggies thing isn't working. Me and B are fairly picky eaters, him moreso than me. He had an infamous run-in with peas when he was about 7. His mom said he couldn't get up from the table til he ate them. He slept at the table that night, peas still untouched. Next morning his mom says, get up it's time for school. "But mom I still didn't finish my peas so I can't leave the table to go to school..." I think there was a spanking involved afterward.

We all happened to go to the grocery store together and talked about them with her. She indicated she would eat veggies if they had shakey cheese (parmesan) on them. GREAT!!! We pick up two cans of it and tons of veggies. I was making S's baby food anyway so it was a good excuse.

Fast forward to last night. Sausage and bell peppers/onions for dinner with a bit of rice. We put a small piece of red bell on G's plate. Put the shakey cheese on it. She takes it to her mouth...and proceeds to suck the cheese off of it while somehow avoiding actually chewing and swallowing the pepper itself. We try everything to get her to digest it. Bribery, removal of privileges, time-outs, you name it. Nope, not happening. Fer cryin' out loud it's not like it's a bitter vegetable. I intentionally picked a sweeter veg so she wouldn't be so stubborn in fighting us. This went on for the better part of an hour. Finally we gave up but told here nothing else for the rest of the night (she got a fruit bar and a bit of milk at bedtime, we're not that heartless just yet).
Of course, when either me or B talk to our moms about this, all they do is smile and laugh. And remind us of how picky we were at that age, and older. Yeah, thanks, whole lotta good you two are for sympathy...sheesh...

It drives me nuts to hear about kids not being picky and eating whatever is put in front of them, and happily I might add, and how fucking SMUG their parents are over it. You don't hear them going "Oh we had such a struggle with her not eating her organically grown free range babymicroarugulasprouts." These people obviously don't live with the rest of us regular Joes who have nightly battles at the dinner table over carrots. It took forever for G just to eat frikin mac n cheese, the staple of toddlers everywhere!! She loves fruit, meat, and dairy but oh the travails when a green bean enters her field of vision. And there's nothing we as parents can say about it, because we inflicted the same thing on our moms and their cooking.

Wednesday, July 16, 2008

Sex, Motherhood, and Rock-n-Roll

Welcome to the inaugural installment of SMR!! I'm going to try this out and see if this is something I can keep up with. Always wanted to blog but never felt I had much to say so let's throw this on the wall and see if it sticks.

I will do my best to stay on point with the blog title but I'm not making any further promises. Whatever I want to blog about's going here. And I'm not promising to keep on a schedule but I will do my best to post something at least 1-2x a month.

My intro: N, 33 yo, happily married for 10 years to B, and we have 2 girls. G is 3 and S is almost 6 months old. Most likely my blogs will contain them in some shape or form.

Currently my working situation is what I'd always hoped for. I'm working from home full-time for a publishing company. However, that situation is only temporary, as I've been downsized as of last year when the office I was working in shuttered and relocated halfway across the country, and opted to consolidate my duties into another position. So be careful what you wish for, you just might get it! I will most likely bitch about that as well, along with my search for a new employer. Oh yes, I am a heathenous working mom who puts her kids in daycare for someone else to raise. You'll hear about that too.

But what about the sex and rock-n-roll? Well, how do you think I got the kids? LOL

Yep, I'll blog about that stuff too. My musical tastes for the most part run to the more hard rock/metal spectrum (but aren't limited there), and when it comes to S-E-X, just because I'm married with kids doesn't mean that I don't enjoy the occasional trip to the local adult novelty shop to add to my boudoir collection.

Gotta get back to life now so I can get some more fodder for this thing.