Saturday, September 17, 2005

Caregiving and Medical Insurance donnybrook Pt II

What can you do? Preparation is the best lesson to be drawn because of the uniqueness of each caregiving situation and story.


Many if not most home caregiving scenarios may not even involve private medical insurance. I realize we were and am blessed with such insurance for maximum treatment options and medications for MS.


The 2000 hour donnybrook was necessitated because of the retroactive cancellation of medical insurance and impending family bankruptcy. Regardless of whether it was driven by malicious and conspiratorial accounting or institutionalized ineptness, as a caregiver I was blindsided and overwhelmed. All burden of proof and correction is placed on you. 


Find and secure original documents establishing medical ins policy and each change in carrier as far back as necessary prior to disability or disease. In our case this involved 4 corporate mergers and 13 years of documentation. With Patti's memory gone I had to back track through hours of phone calls, old and older friends of friends to find people who used to be personel office workers, etc.




COMPLETE and FILE ‘representative forms’ for each insurance co.


KEEP each and every medical claim and payment record


REVIEW and UPDATE medical provider’s contact information


SCAN above into your PC. COPY to separate CD or DVD, to keep in safety deposit box outside home. UPDATE regularly.


WRITE letters for inquiries, confirmations, etc. PRODUCE a paper trail.


If you must engage in conversations, ask for a confirmation letter. After any phone conversation write a memo to file including date, time of call, person you spoke to, details, outcome, etc.


As a fail safe, BUY a digital answering machine. RECORD critical phone conversations regarding medical insurance. TRANSFER to digital audio files on your PC, COPY to your storage CD or DVD. (Yes it is unprincipled and potentially illegal in some situations but so is ‘retroactive’ cancellation.)  People will 'say' things that they will not put in writing; however once you have a digital file it's all really the same in a doonybrook.


Transferring to PC, reduces storage dramatically and facilitates and simplifies organization. Your ability to access information and to “send” via email or fax becomes as fast, if not faster, than theirs. … COPY regularly to a CD or DVD is imperative. Your PC or hard drive is not something to ‘depend’ on. You’ve invested too much valuable time - independent back up storage is essential.


If you maintain vigilant records regularly you’ll never have to play catch up. If everything is just a click away you may never need to know the overwhelming suffocation of reconstructing 5 to 13 years of medical insurance records while bankruptcy pounds on the door.


BE PREPARED!  When the hammer falls FIGHT BACK! Predators always prefer “easy” prey.

Friday, September 16, 2005

Caregiving and Medical Insurance donnybrook Pt I

Time is an ever tightening screw that controls caregiving. Our transitional year and more has been dominated by the demands of Patti’s medical insurance debacle.



Patti’s private medical insurance and pharmacy plan through Long Term Disability (LTD) Benefits from previous employer is absolutely critical for care of Multiple Sclerosis. Many treatments and services and MS medications are not available through Medicare. 


In brief, 14 months ago Patti’s long term disability benefit medical insurance was suddenly cancelled (without warning or notice) . Not only was it cancelled it was ‘retroactively’ canceled for a period of time ranging from at least 5 years to 13 years.


Suddenly, hundreds of thousands of dollars in medical bills were past due and subject to collection. After visiting a couple lawyers the consensus was I was screwed. Bankruptcy was their best advice.


With Patti safely in long term care, my daughter and I faced whatever life bankruptcy left.



Beginning in the late 1980’s we became aware of conspiracy theories of insurance companies and employers doing just such things to families living with a chronic illness or chronic disability. Once you cross a certain cost line you are dumped ‘retroactively’. You can try to file a law suit however your legal bills will bankrupt you before you ever see a courtroom and medical providers will bury you in collections.


Over the years too few people have been noticing that medical expense related bankruptcies in the US are NOT from people without medical insurance but filed by people who HAVE or HAVE HAD medical insurance.



Lawyers explained the problem is basically “billable” hours. It takes staggering time to play ‘paper chase’ and for phone calls, ‘on hold time’, and to compile data to keep pace with the near infinite resources of a corporation. You can file for bankruptcy now or go bankrupt trying. The end result is the same.

Instead I just put my head down and charged ahead, minute by minute, hour by hour, week by week, month by month. Over the year the plot took several twists and turns as it began to straighten out or perhaps snake away. It all depends if you believe in the intrinsic good or evil of the medical insurance industry and corporate America.


After over a year of fighting, I’m supposed to believe it all began with “an unexplained computer glitch while files were being centralized…”. No apologies.


Retroactive cancellations have been corrected, long term disability insurance though modified has been restored, ‘retired’ employee status has been reactivated, and medical payments have been repaid.  


"Billable" hours = 2000 (give or take). That is IF I were a professional anything. <grin>


Last week while sitting at my desk preparing paperwork for court date over collection, the last unpaid provider contacts me that they have received payment from insurance and have cancelled legal action.  


Do I believe it is over? NO more than I believe in the alleged ‘computer glitch’. Patti & I rolled our eyes at conspiracy theories for nearly two decades. I’ve learned the hard way that 'the hammer will fall'. "When?" remains the variable.



Not just time but anxiety, a crises mentality, a constant focus on MS were pulled ever tighter by this battle. There are days I wonder if  I even personally experienced a "transitional year"? This focus has prevented any attempt to detach.


A hundred or more human beings were involved in this past year's conversations, letters, emails, etc. The overall picture was never really confusing as to what was happening and why. What saddens me is that about 10% can really be labeled "human" with a moral compass of right and wrong. For those few,  I am beyond grateful for their compassionate courage. The majority of the computer age workforce in the insurance industry, medical billing, and employee benefits are more infected with viruses of disinterest and plastic values than their computers ever will be. 


Have I won?  Adding up my day planner, what are 2000 hours (80 days & nights) of my life worth? Proving lawyers wrong is always nice. Yet somehow a Pyrrhic victory doesn't feel like a win. Too tired and too wary.

Wednesday, September 14, 2005

Caregiving and Headaches

“Headaches related to stress – and even migraine headaches – are not strangers to caregivers. Now, German scientists say … "

Caregivers Have a Better Tool to Deal with Migraines

Monday, September 12, 2005

Caregiving MS, Menopause, and a guy

Caregiving and gender can challenge more than can be imagined. MS progression both physically and cerebrally impaired and prevented Patti’s ability to 'manage' the personal related aspects of her menstrual cycle several years ago.


MS emotional lability inflamed by PMS is not conducive to rational ‘manly man’ problem solving and assistance. For example, it does no good to point out to a PMS enraged woman that you "have efficiently marked the calendar and it is not 28 days". They stare at you as if you have grown multiple heads and seem suddenly unable to understand English yet begin to curse you ‘in tongues’.


Shortly our daughter became of age and with Mom unable, this became another father daughter passage unique to “living with MS” in our family.


For a guy I’ve gotten to know more about the menstrual cycle than I ever wanted to know. Except now I find myself confounded by its logical extension - menopause.


The overwhelming majority of people with MS are women. How is the following and often dated and in conflict information acceptable?


“Multiple Sclerosis Basic Facts Series”

“…In a 1992 study of women with MS during menopause, women reported feeling worse with menopause and better with hormone replacement therapy. But these changes in subjective symptoms may or may not be related to MS…”

2005 National MS Society

Menstrual Cycle and Menopause

“…These findings have all come from small, uncontrolled studies, and much more research is needed to characterize the relationship between MS and the menstrual cycle….” 

MS Information Sourcebook, NMSS, March 2003

“Menopause and MS”  

“…No problem, said my neurologist, and for me, the advice was right. … Since we already have a chronic illness filled with vague symptoms, it can be difficult to separate out the menopausal ones ...When I became menopausal, I was unprepared and ignorant about it. I researched the topic for myself. My research revealed that there were not a lot of answers …there isn't any research yet on women with MS going through menopause"

from Inside MS Magazine, 1998


Over half the population of the earth is women. Why aren’t women kicking down doors and demanding answers?


Patti’s MS progression both physically and cerebrally prevents her managing and even properly communicating changes and needs. Recently noticing an unusual pattern of MS symptoms over the last half year and some probable menopause indicators, I’ve discussed this with her doctor and she has agreed with hormone level testing which will begin next week. This in turn has lead me to such above futile research on MS and menopause. Why as the ONLY male involved in Patti’s healthcare am I the one taking a proactive look at hormones? Am I risking getting cursed in tongues again? <grin>


Perhaps I should learn a lesson from this scientific insight:

“…studies of the MS model in male mice, whereby castration clearly makes the disease worse in males…”

OUCH! and DUH, what wouldn't castration make worse!!!! <grin>

Thursday, September 08, 2005

Caregiver 54 yr old auction virgin

Medical equipment and supplies are essential to caregiving. Professional labels such as “dealer” or “supplier” are often a euphemism for racketeer. Controlling costs is pressing.


Reading the newspaper last night, my attention was grabbed by a line in an ad for an auction barn - “homecare equipment and wheelchair”. Though the barn is less than 5 minutes away I was a 54 yr old auction virgin. Curiosity changed that forever.


What good ol’ fashioned down home fun! (…and the least expensive dinning out in a long time) Imagine the Dukes of Hazzard meets the Home Shopping Network. <grin>  eBay, yard sales, whatever … they cannot hold a candle to this atmosphere.  I am digressing, forgive me, back to the topic.


The wheelchair was an Invacare. My guess would be the original racketeer sold it for around $500. Condition was excellent. Bidding started at a $1 and sold for $14. !!!!!


Homecare equipment was sold as a ‘lot’ which included a free-standing portable commode, walker, and exercise peddling machine. Again everything was in excellent condition and the complete ‘lot’ sold for a total winning bid of $11. !!! 


Now old toys were another story - selling for hundreds. A 4” long metal Greyhound bus sold for $235 yet all that homecare equipment and wheelchair combined went for $25. Go figure.


I never realized this resource existed before. Obviously it’s hit or miss, but if you ‘hit’, it’s a jackpot!

Wednesday, September 07, 2005

caregiver car wash

Even a wheel chair needs a periodic trip to the car wash. <grin>


With Patti home Tuesday afternoon and evening for some family time and low carb spaghetti & meat ball dinner it was easy to switch her to back-up wheel chair, referenced in ‘emergency planning’ entry, and give her main machine a spiffy wash and shine as pictured.

Sunday, September 04, 2005

long term care facility location trumps everything

Location, location, location is the mantra of real estate sales. Location trumps everything when living with a disability.


Proximity of an easy roll and the route of that roll was a factor in care facility selection. 15 – 20 minutes of rolling and strolling from her room, through the park and we are at a mall, with Patti’s recent personnel favorites, a movie theatre, Dairy Queen, and Wal-Mart.


Saturday was the first taste of Fall and I seized the opportunity to roll Patti to the movies, “40 Year Old Virgin” and Dairy Queen. Returning through the park the amphitheatre was empty … so we borrowed the stage for some play time. as pictured.

Saturday, September 03, 2005

September is National Preparedness Month?

September is National Preparedness Month

Creating A Family Plan “Your family may not be together when disaster strikes, so plan how you will contact one another and review what you will do in different situations…”,1082,0_601_,00.html


“Some of the things you can do to prepare for the unexpected, …

Friday, September 02, 2005

caregiving must include emergency planning

Caregiving demands a Stoic indifference to your own existence as a way of life. I must be slipping because I find myself overpowered trying to absorb the aftermath of Hurricane Katrina.


New Orleans stands now as if a death's-head. I’m grateful to perpetuate memories of another New Orleans, treasured and safe forever.  


Unique disaster challenges faced by people who can no longer care for themselves were dramatically emphasized to us with a one-two punch as our home was 10 miles from the Pentagon during the Sept 11th terrorist attacks and then an F3 tornado tore a path through our community, miraculously jumping over our block, only two weeks later.


ANYTHING can happen at ANYTIME. Lessons from September of 2001 influenced caregiving and eventually care facility selection.


Do you have copies of medical and legal records? Are they safe? How long a supply of medicine? Water? Food? Batteries? Back-up wheel chair? How would you move someone if you couldn’t use a wheelchair? Are your emergency needs electricity dependent – is a generator appropriate? Not every question may apply to every situation. What ARE your plans?


Hurricane Katrina has added another crucial lesson - in a significant city in the numero uno advanced nation in the history of civilization, help can take a long, long time to reach you.

Thursday, September 01, 2005

Sign in / calendar

(The following excerpt is reprinted from a recent “Hints From Heloise” column: )


Handy Calendar

     Dear Heloise: Writing out phone numbers in large letters and numerals for a friend or relative in a nursing home is a good idea.

     Here is another one: Use a calendar and have visitors sign in on the date they visit. For residents who forget and think no one visits, you can show them, “See, I was here on Monday.”

          The calendar also provides topics for conversation, since visitors can see who else has visited and ask about them. These ideas were helpful when my grandmother was in a nursing home. ---   Patty in Minneapolis


     An oversized (20” wide by 29” high) hanging wall calendar has faithfully served in Patti’s room. An identical sized calendar was (and remains) the focal point of our kitchen at home, tracking appointments, school activities, practices, and so on.

     Originally Patti’s calendar was intended as a visual link with daily life at home. Colored markers help keep it both visually functional and fun. “Sign in” on the calendar simply evolved. 

     Patti’s friend, Sharon, refreshed the idea with an in-room log book enabling additional notes, thoughts, and ideas from visitors.

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