Caregiving and voting

Tuesday was Election Day and we continued our unbroken streak of exercising our voting rights in spite of the obstacles and progression of MS.

 

We discovered that our "coroner" is an elected position. Fortunately he was running unopposed.

 

Of course municipal elections tend to lack the voting day intensity of Federal or State campaigns. Regardless, Patti has a knack at turning voting into an entertaining experience.

 

We get to choose to keep or repeal judges. MS symptoms can impair Patti's ability to control volume when speaking. While helping Patti with her ballot, I softly asked her if she wanted "to keep or get rid of XXX". I do believe everyone in the room jumped as Patti yelled "KEEP HER" as if she was at a football game! This got us both laughing and wondering why.

 

Fortunately up here the election officials just enjoy the break from the monotony unlike Patti's infamous voting experience in Maryland shared in VOTING & MS from last November.

National Family Caregiver's Month

A Proclamation by the President of the United States of America

 

"Each November, as Americans reflect on our many blessings, we observe National Family Caregivers Month and give thanks for the selfless service of family caregivers on behalf of their loved ones in need. The tireless devotion of these Americans brings comfort and peace of mind to our Nation's elderly and to those who are chronically ill or disabled. ..." George W Bush

 

http://www.whitehouse.gov/news/releases/2005/11/20051102-15.html

Caregiving ... and playing in Fall leaves

Zooming around the field in her scooter Patti somehow manages to run aground on the only boulder in the field. Perhaps reenacting the Pilgrims landing on Plymouth Rock? (Picture 1)

 

A pile of leaves simply MUST be thrown into the air no matter what your situation in life <GRIN> ...  (Picture 2) 

         

A 72 degree day in Fall is Heaven! (Pictured below) An all terrain scooter only helps you get there.

 

                        

Caregiving: one morning in November

Pictured is Tuesday afternoon’s cook out, we brought Patti home for that Shangri-La afternoon. Grilling Delmonico steaks under a November sunset, north of the Mason-Dixon line, is weird but I could learn to like this. <grin>

 

It gets better with two seasons in one. I get my winter with an early morning kiss of frost, and a cup of steaming Italian Roast coffee while walking and crunching over the frosted grass blades. On the other hand, reality is trivial to the rest of the household. The cat demands me to flick on the gas fireplace in front of which she hypnotizes herself deep into the feline center of the universe. Also enjoying the gas fireplace, our teen age daughter needs to check her email and IM her friends who she will see ‘live’ in only a few minutes when she drives the 2 miles to school as soon as I have scraped the windshield or warmed up the car. (After all I ENJOY winter.)

 

Looking at Patti’s schedule, she is waking up in a toasty room with 2 to 3 attendants who will get her up out of bed with the assistance of a mechanical lift. She will be bathed, again with so many high tech devices and lifts our homecare method seems almost medieval. As Patti needs 100% assistance with all Activities of Daily Living including dressing, personal hygiene, etc., I know how long even one of these activities took to accomplish when it was just me trying to help her. With at least 2 attendants and lifts she breezes through such activities. Getting up in the morning is no longer a function of hours.

 

She is then taken to the assisted dinning room for breakfast. I see that today’s menu is scrambled eggs, cereal, English muffin, coffee, and OJ. Home care breakfast was ‘catch as catch can’ and frankly was often brunch as it could take that long to get her up.

 

For Thursday morning Patti has wheel chair exercises and then “corn pitching” for a morning activity. Tossing ears of field corn into baskets for a fun exercise and group activity/game.

 

By afternoon it’s back to 70 degrees! Depending on how I can juggle my day either I will pick Patti up and bring her back for a cook out or swing by with her scooter and take her for a scooter excursion through the park or on an adventure before sunset.

 

Weather certainly has disrupted and destroyed so many lives this year. We may as well celebrate 'kind and gentle' weather and not take it for granted.

A paean to those who came ...

A fellow MS caregiver spouse and resident of the Mississippi Gulf Coast forwarded me this beautiful editorial from South Mississippi’s SunHerald Newspaper: 

A paean to those who came

“… This is for all of those who cared and who responded.

     It is for everyone who helped us, however they expressed that concern.

     These words are our heartfelt words and thoughts of appreciation. They are redeemable in handshakes, hugs and in indelible memories that will be just as real as far into the future as can be seen. Our debt will be owed to the children of all of those who came, and to their children. …” 

Click the headline for the full Oct 28th editorial …

Caregiving Halloween

As pictured, fortunately there was “Trick or Treat” at Patti’s care facility on Halloween night!  Patti was able to enjoy an evening of costumed characters parading before her. It’s a rare holiday she can participate in and enjoy where a wheel chair isn’t a factor.

Last Thursday was “designated” Trick-Or-Treat evening and I brought Patti home for an afternoon & evening of family time.

 

Halloween has always been a MAJOR Holiday for this family. At our previous home we would average 200+ trick or treat visitors on Halloween and host a neighborhood family party immediately afterwards.

 

Over the years, it was ideal for Patti as she ruled like a queen from her wheel chair on the deck while all paraded to her for treats. <grin>

 

Music, lighting, theatrical fog, and extensive decorations added to the allure. We never gave out candy, usually glow necklaces.

 

Lost in the display was the symbolism of a party of 6 ft skeletons sitting in chairs around a patio table I dragged into the front yard. There was always one open chair at the table. I’d begin my own ritual each Halloween evening by having a drink and spending some private time reminiscing with the skeletons.… In almost 15 years only one neighbor ever noticed that the number of skeletons changed or asked about the eccentric minutes.

 

Each skeleton represented a friend who had died too young. It was the only time we all could ever spend together.

 

Probably some dormant Druid gene in my DNA has always made my Halloween ‘edgier’ than Hallmark’s. In Irish mythology, the shield of Scathach is lowered for one night and the barriers fade between the world of the living and the spirits of the dead. Honored with food and entertainment the dead are welcomed for their brief visit home for one night during the ancient Celtic festival of Samhain to celebrate the end of summer and coming of winter.

 

As a big fan of Winter, I’ve always been intrigued by this ancient three day bash to welcome Winter and what a long strange trip through history it has been to copy cats like Christianity’s All Soul’s Day to today’s costumed Trick-Or-Treat kids gorging on candy. <grin>

 

However here they have “designated” Trick Or Treat nights. Of course, that cannot be Halloween night because bad things might happen. The ultimate in local government fascism. <grin> The end result is we have hosted exactly three (3) trick or treat visitors in 4 years.

 

Patti remarked several times about being confused. Her observations however were quite correct, such as “Where is everyone?” Or, “are you sure it is the right night.”

 

For once I found myself trying to explain it had nothing to do with MS but the outside world was screwed up. Talk about challenging information to process. <grin> ... What we need is more Druids and less local government paranoid interference in the world. <GRIN>

 

HAPPY HALLOWEEN!

Glancing back at Sunday's entry on reflections about transition from visiting ...

 

As an example, take the concept of “lost”. I know people who freak out if they leave the path when walking in the woods. I, on the other hand, personally enjoy wandering in the woods. Within an hour my companions could be experiencing anxiety and “be lost”. However, I’m not “lost” because I wasn’t going anywhere in particular.

 

At the risk of oversimplification, Patti’s MS symptoms may cause her perspective on daily life to be somewhat the same.

Caregiving change in seasons

 With weather seemingly gone berserk everywhere else, just last Wednesday Patti was out enjoying a scooter ride in the park in sunny 72 degree temps. Untouched by a year of weather madness or even reality, I was wondering if the Cumberland Valley had become Shangri-La.  

 

Finally, even though late in the season, Jack Frost may find his way tonight.

URGENT WEATHER MESSAGE - NATIONAL WEATHER SERVICE ... FIRST FROST OF THE SEASON FOR MANY SPOTS ACROSS THE VALLEY TONIGHT. ...

Seasons of the year certainly do affect caregiving. In our particular case, Winter is my favorite season of the year. Any seasonal challenges are more than counterbalanced by the renewal of spirit and passion that I wolf down from Winter.

Caregiving: transition from visiting

As MS expands its assault on the brain, MS becomes a lost world of mental confusion and memories disconnected from time. The ‘well world’ however, remains the real world. I, as a spouse and caregiver, have to try and move between the two.

 

Planning demands that I anticipate Patti’s needs. Beyond the physical symptoms of MS there is memory loss, erosion of cognitive and reasoning abilities, erosion of the more intangibles such as inability to attach ‘proper’ reactions to emotions, or even levels of reaction. Much work goes into even the simplest of outings to improve its success. ... Yet, if asked, Patti cannot recall, most of the time, what any outing was about. 

 

Transition from visiting, for me, is about shifting from that world of shadows, where pieces of dreams are dead but not dead, and then back into light. I always find it difficult to switch caregiving on and off. Pieces of me get stuck. Some days I’m so lost in thought, I find myself sitting in my car before driving away and suddenly its several minutes later. I often drive on back roads home to avoid traffic and any attention related driving decisions. The transformation back to interacting with the ‘well world’ is more challenging some days than others.

Caregiving: scooter for "legally blind"?

As a caregiver there are periods of time I feel more like one who tries to herd cats. Yet sometimes one of those exercises in futility actually appears to work.

 

Recently through a team effort of Patti’s family we brought her scooter out of mothballs. So far it’s been a success. Obviously its use is certainly different in this era with Patti “legally blind”. There is therapy in fun and empowerment. Sometimes trying to put the square peg in the round hole is the better solution.

 

P.S Yes, it was a 72 degree, gorgeous day on Oct 19th in Pennsylvania for the outing pictured.

Caregiving CareBots

“They don’t get tired, they don’t get stressed, they don’t have emotions …  -- caregiver robots are on their way…”

 

Make Way for CareBots -- the Newest Caregiver?

 

Click the above headline from Caregiver’s Home Companion for the full story.  

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.

 

DURABLE POWER OF ATTORNEY on file

 

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.

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.

 

BACKGROUND

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.

 

CONSPIRACY THEORIES

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.

 

2000 HOUR DONNYBROOK

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.

END RESULT

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.

 

REFLECTION

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.

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

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>

September 11, 2001

                    http://www.tcdesign.net/solidarity_graphics.htm

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!

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.

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.