Depression

Most days, I win; Every once in a while, the depression wins.  Man, it's been hard recently.  Things that don't usually get me down have been hard to get through.  I know this will pass, but for the time being, I'm prone to irritation and impatience.  I just want to curl up and disappear.

Shoulder & Land

Finally got to the doctor today and had him take a look at my shoulder.  It's tendonitis in the bicep, so now I've got a plan to address the pain and get my range-of-motion back!

I also received a check in the mail for the sale of the land.  It took 5 years to sell, plus the buyers dragged the deal out for another 5 months.  When it gets closer to tax time, I'll take a look at what it was valued at when the estate was settled in 2004.  With the taxes, insurance and maintenance we had to pay over the years, it will approximately reimburse the expenses we paid/borrowed.  It will be nice to be done with the loans, expenses, responsibility, hard work and bad feelings that those parcels represent.

Mom

Mom wanted to attend the Iowa family reunion last weekend, so I asked that she go over her route with me (arranged to borrow a GPS if she wanted to try it), call before/after travel so I knew she was safe, etc.  She didn't remember any of these things, but did leave her hotel information, so I tried to confirm her safety that way.  The hotel was oversold, and had no record of her, and she never said anything about which other relatives might be attending, so I just kept calling her cell phone.  Eventually, she went to call her cousin Elizabeth and accidentally dialed me.  Once I knew she'd gotten to Iowa safely, though she said she did get lost on the way there, she slid on a gravel road and put her car into a ditch.  It's totalled, so I'm driving there today to bring her home.  It's hard to even recognize her any more, since so much has changed so quickly.

Some catching up

Boy, can I use a relaxing Holiday weekend!  The past 2 weeks have really worn me out.  Mom got lost on the way to our house.  Ruth and Julie each had their last orchestra concerts of the year, and we returned Julie's cello, since she won't be playing in 7th grade.  Ruth was confirmed last weekend, and I co-headed the brunch the day before, which was complicated by another ER visit for Raj - 16 passouts during lunch, and prolonged low blood pressure - but all checked out fine at the hospital.

Though we've been "about a week away" from closing on the sale of the Wauconda land since the offer in January, we're still having to jump through every hoop the sellers come up with, and it gets discouraging at times.  Tax penalties start to accrue June 6, so I wonder who gets to pay those?

We got Raj a Disabled Person State ID instead of a Drivers License when his expired on his birthday, and I've gotten approved for 4 savings programs with the manufacturers of prescription drugs that we probably couldn't afford otherwise.  We're in the "donut hole" with Raj's prescriptions now, so I've applied to programs that I never thought we'd qualify for.  Medical claims still take the majority of my time and patience.

Memory

The thing that sucks about memory disorders is that you have to walk on eggshells around people with them 24/7.  It's exhausting for the loved ones (I know), and I would imagine it's even more exhausting for those going through it.  It's typical for memory loss sufferers to lash out in anger and frustration, often the opposite of their natural personality/temperment.  My husband's progression has gone so slowly that he's adjusted, with the help of medication and assisted living, so most days he's pretty stable -  but it's taken 5 years.  Unfortunately, I'm not able to apply all this knowledge and experience to anyone else.  Raj's mom, for example, was typical - very angry and depressed, even violent at times - leading up to her diagnosis; but we didn't know that was common behavior back then for someone suffering memory loss.  My grandparents, from what I remember, were atypical - cooperative, calm, trusting - as they aged and their memories worsened.

So how do you deal with memory loss in another?  What if they can't see their changes in behavior or don't recognize their symptoms of depression?  What if they truly believe everyone else is wrong, and their paranoia gets projected back out at the world?  How do you express concern or love?  How do you explain it to children?  I really don't know.  All I can do is turn to my faith, pray for patience and discernment.

I try to see things through their eyes, so when my memory fails, I won't put my loved ones through the "walking on eggshells" that seems so cruel.

  

Meh

Today, I was assigned a Patient Advocate from Allstate/Hewitt to work on the now year-long battle with Rush University Medical Center & United Healthcare.  After such a long time of fighting to have the claims for Raj's stay processed properly, I gave up and found other insurance - Medicare with various supplements for Raj, and a separate plan I found on the open market for the kids and myself.  Once our new coverage was in force, I called Hewitt to cancel the oxymoron medical coverage I was paying 3x more for.  My request was DENIED, and they explained that the only way to end the medical coverage is for non-payment of premium (even though they still haven't processed November 2010's benefit election to charge the correct amount for said premium)!  The benefits representative had a hard time communicating their "decision" and I stayed on the phone an extra hour to provide enough information for him to appeal on our behalf.

After similar experiences with Raj's Humana plan for June - December of 2011, I was assigned a Patient Advocate from Humana, and I'm keeping him very busy.

The issues are pretty much the same, regardless of Medicare vs non-Medicare coverage, PPO vs POS, prescriptions included or not:  They promise the world when you elect/buy the coverage, provide documentation to support this to "comply" with Healthcare Reform and other laws; and I suppose everything would be going well, if it were not for claims.  When I submit claims for covered expenses - prescription drugs, doctor visits, hospital services, durable medical equipment - both sides panic.  The billers don't even want to try, and the insurance company won't process anything to be paid, even if it DOES get submitted.  The folks answering the phones either hang up on me, or tell me the providers have no intention of honoring their contracts.  I've never seen anything like this BEFORE Healthcare Reform.

Example:
A line item for one of Raj's hospital stays (the first line, unfortunately) got submitted as "out of network" instead of "in network" so all subsequent line items and claims were processed incorrectly.  Endless calls, emails, and faxes resulted in backing out an invalid deductible (good) but they resubmitted it with ME as the patient (bad).

We've already lost several of Raj's doctors, due to issues they've experienced under Healthcare Reform, and we lost another one - his psychiatrist - last week.  Anyone know of a psychiatrist in the area that is accepting new patients?  How about one that is still in business?

Lookin' up

I'm in a much better place, now that disability has been reinstated, I've cashed out my VUL and replaced it with term life insurance (at a preferred rate!), and we have a REAL offer on the Wauconda land!  The BIL, Dave, came out of woodwork with demands for some legal proceedings, which I haven't heard any more about since the initial threats; But at least we know he's alive (as of 1/24/2012), and that's something!  I even fought off a cold (or whatever it was).  And today was supposed to be 60 degrees - the sun feels great!

Sometimes, it's hard

So I wake up early this morning to check on our disability EFT, which didn't happen yesterday.  I'm told they stopped paying the claim, since they didn't receive our doctor's forms.  This has happened before, which is another reason why we switched some of Raj's providers, but other times, the disability payments kept coming while the insurance company worked with the doctors on what they wanted; then we'd receive a letter warning that benefits could cease in a month, and I'd remind the doctors to submit their paperwork.  This time, no warning - they didn't even TELL us - but our income has disappeared.  The bills, however, still need to be paid.

Add to this several other irksome issues with health insurance, our dental cleanings being denied, the bank's website missing transactions, an empty refridgerator, and multiple dashboard indicators lit on my car, and I've had a truly rotten day.

Hopefully, I'll be able to get our income source reinstated; If not, I'll figure something out.  God always provides; But for tonight, I need some rest.

Medicare & other

Got Raj signed up for a different set of Medicare benefits for 2012.  Instead of Parts A & B with Humana Medicare Advantage in 2011, I'm going with Parts A, B, D and F.  So far, the prescription plan (D) got processed, we've received the Member ID & card, and they've even processed my POA so I can communicate with the Community CCRx on Raj's behalf.  With Humana, these processes took 3 months!  We'll see what happens when I try to fill the first prescription, which is waiting for me at Osco.

Hopefully, BCBS-IL will be a good choice for a High-Deductible Plan F.  Since the first set of expenses just go toward the deductible, parallel to base Medicare, I'm not worried that this coverage isn't in place immediately. 

High on the list of what's needed is a hospital bed for Raj.  With his knees so rigid, he literally crashes into the single bed we have there for him, and it can't handle the impact.  Because of the reflux, he should sleep with his head elevated anyway, and this bed will address that, as well.

The patient advocate assigned to help me with the backlog of 2011 Humana claims is working on the first one; We'll see if someone internal to that organization can make any progress!

Raj was home for Christmas-gift opening several days ago, and he was cooperative.  His coughing was almost constant, though, so he's not remembering what the speech therapist taught him.

I heard back from one of the two life insurance companies I applied with today.  I need the cash, so I'm planning to surrender my VUL and replace it with basic term insurance.  I haven't seen how my physical exam turned out, but I was surprised to be quoted at the "Standard" rate.  I have no chronic conditions or diagnoses, am experiencing pretty normal "female" stuff through a long peri-menopause, and take one prescription to manage those symptoms.  I keep up with regular massage and all shots/tests/labs/maintenance/dental/eye stuff, and take supplements for optimal health .  I haven't had a cold or flu in years, BP is great, and my only ER visits were 7/2009 (bad headache after cushioning one of Raj's falls with my whole body on a concrete floor) and 9/2011 (tripped while walking the dog & had sore wrist X-rayed).  Hopefully, the other insurance company will come through with a better rating.

Contact Made!

I finally heard back from the new psychiatrist at Raj's facility, and he's making the necessary med changes to (hopefully) avert mania.  Apparently, Dr. G reduced the main mood stabilizer due to his liver counts.  Raj had mixed up this information, and requested dropping one med while starting another.  Now I think we're on the right track with those meds and liver counts are OK at the moment.  Also, I followed up with his PCP on the new cholesterol med & reminded her to run labs on that.  I even had an initial conversation with Dr. G's billing rep, and was assigned a "Humana Cares" representative to help me with the backlog of claims that they keep denying!  Merry Christmas to me!

Mania?

Raj's mood has been stable for so long, I know I should be grateful.  But his new psychiatrist hasn't ever spoken to me directly, so when he asks the "kid" about the "candy store", the kid certainly isn't going to tip his hand.  For the past couple of weeks, Raj has been increasingly irritable and demanding.  I don't know how long it's been, but my only medical contact for his care at the assisted living facility (Nurse Judy) lost her job.  All I have for the on-site psychiatrist is an email address, so I sent him a message tonight regarding Raj's symptoms and clarifying various med changes.  I hope it's not too late to prevent a full-blown manic attack and/or hospitalization . . .

Maybe he's right.  I do the best I can as his caregiver and Power of Attorney, but he's saying (again) that I'm just not doing well enough.  He's miserable and wants out of that facility right now.  The grass is always greener (blah, blah).  We've gone through this more times than I can count; Each time, I wonder if I can endure yet another round.  I tell myself that there's no one else to take this responsibility, that he doesn't intend to lash out at the kids and me, that this phase of aggression/lying/complaining will eventually pass . . . but it takes a lot of energy and constant vigilance to erect and enforce the necessary boundaries to protect my sanity and safety.

Lord, help me to focus more on the good that is all around me, and less on everything else.

Hopeless

I'm sorry.  I just don't have words.

Catching up on medical stuff

At this facility since late May, it took a while for me to have an official first meeting (last week) to coordinate Raj's care with the onsite nurse, Judy. I'm relieved to finally have contact info for her. And I'm not the only one getting bossed around by Raj's new friend, Don - During our meeting, a resident died, so Judy needed to step out and speak briefly with hospice; Don was furious that he couldn't discuss getting a new cell phone with Judy at that moment; Apparently, in Don's work life, he was CEO of some big company and he's never experienced waiting. He doesn't like it.

Raj saw the neurologist yesterday & the lung/sleep specialist today.  Though we still don't have a diagnosis or hope for recovery, he hasn't gotten worse; This is both good (not requiring higher level care) and bad (no movement toward specific diagnosis or treatment).  His sleep study yielded helpful info, C-PAP adjustments have been made, and he hasn't been to the ER for falling since June.  I also received contact info for the psychiatrist Raj has been treated by at the assisted living facility, so I can try to catch up on his 2 med changes and maybe half-dozen labs.  I also stopped by the new PCP for samples so Raj can try one new cholesterol med instead of the 3 he currently takes.  Got a copy of the medical records from his Rush stay (only had a few pages before), but haven't had a chance to read through.

Ponderings on Retirement

Since I only taught for one year ($8K salary with minimum contributions to retirement), my North Dakota teacher's retirement paid out as a lump sum in 1991.  I worked in IT (programmer, Business Analyst, etc.) for 16 years, with annual salary ranging from $40K to $100K+ depending on overtime, where I always contributed the maximum to my 401K.  I've kept both in separate IRAs over the years, though they've been invested in the same market with the same funds, just out of curiosity:  Public vs private retirement benefits.  I wondered if there was a difference regarding what one "put in" (contributions and years of service) vs the benefit received.  I have several years before official retirement, but I've noticed a great disparity - $11K+ in my account for the teaching year and about $85K for my IT years; Granted, in today's economy, my totals are down 30-40% from a few years ago, but these numbers still drive home the point:

For 1 year of teaching and about $200 in contributions, I now have $11K
For 16 years of IT and about $80K (avg of $5K ea year) in contributions, I now have $85K

So return on investment, in years:  $11K/year vs $5,312.50/year
                        and in % increase:  5500% vs 6.25%

Interesting, huh?

Mornings

Every morning, for as long as I remember, I've gotten up with a song in my head.  It's not the alarm clock, since I use an annoying buzzer!  Sometimes, it's inspirational or uplifting to set the tone for the day.  Other times, it's some rockin' party dance music.  It might be an old hymn, an unfamiliar phrase (that I should probably write down), a drum cadence, even a nursery rhyme!  I wake every so often to commercial jingles that I've heard before on radio or TV, to recent iTunes downloads, 80s hair-band ballads . . .  I've never questioned why this happens, but recently experienced mild panic in a passing thought that this could disappear.  Maybe some morning I'll wake up to silence - no melody in my heart.

That's when I decided it might be a portal, of sorts, for the Holy Spirit.  You recognize a source by its fruit, right?  Sometimes, I wake up with a particular song I associate with an old friend, and I may reach out to that person, prompted by my morning thoughts.  Sometimes I feel the need to pray for a particular person, whoever is brought to mind by the music.  Other times, I'm awash with gratitude;  The dance beats and Big Band sounds energize me; Jazz can be bluesy and sad; But I'm never unaffected.

I can't be sure God's sending me messages daily, but I hope I can always feel this connection, and be open to its possibilities.

Anger

What can a woman do about anger?  Our society has us suppress it (until it explodes at an inconvient time/place) or express it as frustration.  Sorry, but that's not working for me.

Whatever

As of yesterday, the official word from Rush University Cardiology and Pulmonology Billing Departments is that they "don't like the signature" on the Gap Exception letter that was used by the hospital and all other providers to process Raj's March stay. That's funny, because they honored the same "signature" on the CHECKS they cashed from UHC.

Raj came back from his sleep study with a new mask to try, since he has a beard and mustache now, so maybe this will help him to keep it on enough to help with the apnea while we wait for the full report from his overnight.

An older gentleman, recently released from the psych ward at NW Community Hospital, has been at Raj's assisted living for a few days, since they didn't know where to put him while awaiting his court appearance.  Apparently, he was removed from a domestic disturbance with his wife, and will learn Monday what happens next.  Raj insists we must help him, and has been calling several times over the past few days with various requests on behalf of "Don":

"Come and take Don and me to Walgreens.  He needs deodorant and Poligrip." 3x
"What is our family lawyer's contact info?  Don needs representation Monday in court." 2x
"Bring a printer and a USB drive over here.  Don needs to print a letter." 5x

Also:
"Dr. Gardineer says to decrease by Depakote - It's messing up my liver."

Needing a break from Raj's constant wants and needs, the kids and I had a "Girls Night In" last night & blew off some steam. Took me all morning to recover, but it felt good to laugh with my kids!

More of the same

Since I was on with Humana most of yesterday, I spent a good 4 hours with United Healthcare and Rush University Medical Center claims specialists today.  Equal time and all that.  Instead of measuring progress on getting claims processed and paid, I'm considering measuring by the number of contact points I have within each "inner sanctum" departments at the insurance companies, hospitals & medical facilities.  Raj's claims from March 2011 are no closer to being correctly paid; however, today, I got through to both Kiya and Micah within their respective specialists' departments at Rush (through their supervisor), learned both their last names, got their fax number, and Micah's direct email address.  I also learned the name of the super-duper secret department at UHC that has no outside phone lines, but is the only way to work claims there - the Rapid Resolution Team.  My contacts there grew to both Kimberly (in September) and Robert (in October), no last names are allowed, and they have no fax or email that they'll admit to.  Robert made the mistake of asking whether he could help with anything ELSE today, so I even tossed him the Kiya/Micah issues to see if he can work 'em from the UHC side, even though the error lies with Rush Cardiology and Pulmology not honoring their contracts.

Scoring using the new system, I gained 2 in-network providers today for durable medical equipment, including their step-by-step guidance on how these type of claims work (and coverage level) under Medicare Advantage (Humana, which I have for Raj now) vs. straight Medicare.  I have their direct phone lines, and the fax number for Raj's PCP to send his prescription.

Regarding outpatient procedures (completely different from doctors, inpatient, DME or anything else), I learned that process from my new buddy, Roxanne, and the Alexian Sleep Health Center.  So I'll bring Raj there tomorrow night for another sleep study & pick him up early the next morning before the kids get ready for school.  Since his bed is broken, I figure he'll at least get to sleep on a real bed that night!

Raj said the phlebotomist took his blood this morning, ordered by the new PCP, but I don't get any measurable contact-point progress on this, because nobody knows what entity drew/tested the blood, whether they're in-network, who/what they'll charge, whether it's considered inpatient, outpatient, etc.

Our landline caller ID shows more than 50 outbound calls so far today, and 25 inbound, um - make that 26 . . . .

Yes, it can get worse

So Raj calls me late last night - some doctor who said he was a psychiatrist saw him.  No name, no card, no change to meds (even though one of his blood levels is too high), and he figures I'll probably get a bill from this dude.  In the meantime, I've been calling every psychiatrist in the Humana Choice Advantage network, leaving messages & begging for ANYONE to see him.  I receive one of the following answers - not taking new patients, refuse to work with Humana, or they ignore me.  I call the nurse at his facility today to get a name on the mystery nighttime visitor, and try to figure a few other things out (e.g. why they gave him another chest X-ray, ignoring the one from June, etc.).  The next thing I know I'm on speaker phone, with Raj, several doctors and nurses.  In between all their beepers & cell phones going off, I hear various questions & answers, but none of them can tell me whether the "new" psychiatrist is taking Raj as a patient (or if he's in our network) or if I should keep the appointment I finally made for him tomorrow with the only psychiatrist I could find.  What DOES happen is that Raj is put on 1 new med, discontinuing 3 others that I just paid thousands of dollars to fill.  They've also ordered a blood draw, but don't know what entity is doing it, when, or whether they're in network.

This, all during dinner, while the dog decides she must defend me from the evil phone receiver by barking and peeing on the leg of my chair, the timer is going off, some random delivery is at the door, kids screaming to smash the HUGE spider, and every pre-teen in IL is texting my daughter about homework.

I even spent 3 hours on the phone with Humana this morning, working through error after error, one claim at a time, reciting Medicare and healthcare reform law to "Larry" who must be the only customer service agent who is old enough to understand my questions and concerns - he sounds at least 90, and I don't think he has teeth.

As if all the above drama isn't bad enough, there's a lawsuit now involving my kids' school/district alleging misuse of authority, sexual harrassment, cover-up, . . .  which brings up all kinds of horrible memories of my experience as a teacher, and the garbage my mom went through for so many years.  I can't believe how fresh it all seems in my mind.  I guess I have a lot more to work through from that time of my life.

At least today, the pain in my wrist lessened enough so I could change the burned-out lightbulbs (the CFLs, of course), so I have lights in the entryway and kitchen again!

I'm continuing to heal from my unfortunate up-close-and-personal-meeting with the sidewalk, and can use my wrist for many things, but neck pain has been really bad; So it appears the impact to my neck was a secondary (and longer lasting) injury.  The outside bruises have healed on elbow & knee, but I must have internal bruises - is this possible? - since they are still very tender.

I've been having a difficult time securing doctors for Raj's care.  Thank goodness we found a good PCP, but finding a psychiatrist in his network AND accepting new patients is taking a lot of work.  One of his blood levels indicates problems, but I can't find a doc to address it!  Today, the lung/sleep specialist said his apnea looks much worse, but symptoms are confusing, so we need to get him in for another sleep study.

The slats on Raj's bed at Emeritus fell through,  so I fixed them with a staple gun; then replaced them with new slats from Ikea.  Each of these solutions lasted about 5 minutes.  I can't afford a new twin bed, much less deliver/assemble it with my bum wrist & neck, so I'm not sure what I'll do next.

I've applied to several programs for financial assistance, with a wide variety of results:  Working with charitable groups, schools and churches is pretty straightforward and fair.  We don't qualify for anything that is income-based for our housing, since Raj is on the mortgage - no loan modifications, Illinois Hardest Hit, HUD, federal programs, . . . I can't even refinance!  We don't qualify for Medicaid or Extra Help on prescription costs or even AARP/Senior programs.  Bankruptcy wouldn't even offset the medical/housing costs compared to our income.

Even though we've met the out-of-pocket maximum to satisfy the infamous "donut hole" with Raj's Medicare prescription coverage, all meds continue to be processed with me paying the full cost!  We're supposed to be into "catastrophic" coverage or the final stage of the plan year, but I've had to appeal (sometimes several rounds) to get basic things covered, much less the latest "benefits" of healthcare reform.

The following is a vent - don't read if you're a wimp:

Why are people so naive to believe that just because laws were passed on healthcare reform, the changes will actually take place?!  I'm working both private insurance and Medicare Advantage claims, both before and after reform was enacted, and it's nothing short of a nightmare.  The only entities holding up their end of the bargain, in my experience so far, is the drug companies.  During the donut hole, the drug companies must subsidize half the cost for name-brand prescription drugs, or they can't be a Medicare-participating pharmacy.  There are new departments at insurance companies now, simply to add another level of hoops for the insured to jump through to get any claims paid properly (in my opinion).  When reform went through, no time limits were adjusted to allow for all the extra processing that claims need to go through under the new rules, so it's relatively easy for the insurance company to tell you that your doctor/hospital didn't submit their claim (or resubmit it with new or corrected info) in time.  Another tactic I've run into is no published contact info for the new departments that can actually work the claim.  I've had to "work my way" through the phone tree, customer service hierarchy, appeal process, etc. to GET to the new department; In my case, I have the additional step of providing HIPAA doc (POA or whatever each entity requires) to allow me access to Raj's medical info for each department of each hospital/doctor/insurance company I contact; Then it's a race against the clock to reach these folks before time runs out on getting the claim "fixed".  The premiums paid for the benefits of this coverage?  300% increase with healthcare reform, whereas it used to increase 10-25% annually.