Caregiving and paperwork

     Behind all the caregiving functions, whether home care or facility care, is always the responsibility for PAPERWORK. Pictured are Patti’s 2005 medical insurance records.   

     With four ringed binders and over 3 inches of files to go, this is how I annually spend my year end time. While organized all year long, the loose files are just November and December swamped this year by the “new” Medicare prescription plan. A significant percentage of those files also have also been scanned onto CD or DVD for easy carrying and enabling email and fax transmission.

     Patti's physical and cognitive challenges related to Multiple Sclerosis prevent her from even reading a page much less comprehending, remembering, and responding.

     The 2000+ hours I spent battling “the system” from October 2004 to September 2005 as Patti’s insurance attempted to retroactively cancel her was a valuable reinforcement in documentation. It may seem an embellishment but believe me missing documents or documents not responded to could land you on the loosing end of a medical insurance donnybrook. 

    A good friend of ours who teaches nursing at John Hopkins University and remains active in community nursing always reminds me that too many people “fall through the cracks” in the system every day because they are either unable or lack such support in dealing with logistics of health care and our health care insurance system.

     Please do not look at that picture and feel sorry for me. Feel for a neighbor, or friend, or family member who cannot keep pace with a health care insurance system melting down around us. Better yet, if you possess organizational skill or time then reach out and help someone from falling through the cracks.

Caregiving: bed alarms & falling

   Last night I received a call from Patti’s care facility advising me they were upgrading her bed alarm and informing me of the incident that prompted the change.  

     A passing attendant making rounds noticed her sitting on the edge of her bed. Patti had managed to deactivate her bed alarm, because she claimed she wanted to get up. Talking Patti into staying where she was, another attendant fetched the sit/stand lift and they transferred her into her wheelchair. … Once in her wheelchair, immediately Patti wanted to go back to bed. <grin>

     For year’s at home I’ve labeled one of Patti's MS sleep related behaviors, the “Jack-in-the-Box”. Patti will want to go to bed, often will even fall asleep and then pop right up and try to get out of bed.  Almost immediately she’ll want to go back to bed, and sometimes the process will repeat itself a couple times.

     Because Multiple Sclerosis involves basically short circuiting of communication to and from the brain and the body, strange things can happen.

     The major risk is a fall because she seems to ‘forget’ that she cannot stand nor walk, though she will demonstrate extraordinary clarity in thinking for some parts of the episode, as evidenced by her deactivation and disconnecting her bed alarm. Talking with her during a “Jack-In-The-Box” she is lucid and determined about ‘what’ she wants to do, but is stumped by any question relating to ‘why’.

     This is not a consistent behavior. Weeks can pass without such an occurrence, and then suddenly it can happen several times a day.

     Multiple Sclerosis can drive you nuts as a caregiver. This is not a symptom, or an exacerbation just a random reoccurring sequence of physical & cerebral short circuits. It can be more dangerous than any symptom or exacerbation because the end result if unattended is a fall.

     Years ago when Patti’s neurologist was encouraging us to look at 24/7 attended care facilities, he made a convincing point. While MS is not traditionally considered a fatal disease, that is a flawed “statistic” derived from death certificates and official cause of death. Too many people with Multiple Sclerosis are seriously injured or die from falls. “Accidents” can mask the real culprit, in his case - MS.

Caregiving: incontinence care

Incontinence care may be an awkward topic for some. Yet incontinence for a totally dependent person is just another caregiving reality. This is one of those reasons in our recent discussion about Christmas at home that Patti remarked about being ‘spoiled’ by the level of a professional care facility.

 

Wednesday I was in awe as two staff members with a “sit/stand lift” took literally just over one minute to change Patti, and she was rolling down the hall happy to begin the day’s outing.

 

The sit/stand lift is used for performing perineal care/changing incontinent briefs. At Patti’s care facility two attendants usually are used versus just one as pictured in the Just-Patient-Lifters.com advertisement.

 

At home the process involves me physically pulling her up from her wheelchair to a standing position while she hangs on me, then pivoting her onto a bed, struggling to undress her and change Depends while she lays flat, then redressing and picking her up and again getting her back to a standing position while she clutches her arms around my neck, and finally pivoting her back to her wheelchair. Both Patti and I are at risk throughout all the associated transfers. … If lucky, it takes me 15 minutes.

 

If real lucky I don’t have to immediately start abusing ibuprofen until my back pain subsides. … Now if only I had a spare $2,500, I too could have such a machine <grin>

journal tag

From Christine’s “My Journey with MS” I was ‘tagged’ to list 5 weird habits” and in turn ‘tag’ 5 more journals.

 

Weird habits? While I personally may not find these weird, I must defer to how much they seem to surprise or annoy other people.

 

I MUST have a cup of coffee before a shower in the morning and a glass of chocolate milk before bed. This sequence of daily habits has obviously delayed the onset of the Apocalypse for all.

 

I despise watching TV. Our cable company when interviewing me to determine use and recommend the best package was so flabbergasted the customer service rep could only ask, “Why do you even own a TV?” <grin> (for Patti, Megan, and the cats of course)

 

Frequently I find myself in arguments with inanimate objects. They never actually talk back, so arm chair psychiatrists need not worry, yet I suspect there is more to inanimate objects than meets the eye.

 

When confronted with a choice of going left or right, I always go left. As the overwhelming majority of my companions want to go right, my habit must be odd.

 

It is amazing how few of my passengers are aware that the steering wheel and dashboard on a car is for drumming along to music while driving. Some songs may even involve the visor and rearview mirror. Based on passenger whining this must be strange.  

 

Email chain letters die on my PC. This habit concerns friends who live to ‘forward’. Ooops! That’s more than 5, so I guess “not listening” may be another but that also could be good. As much as I enjoy Christine’s “My Journey With MS”, I am such a ‘creature of habit’ that I cannot forward along the ‘tag’. <grin>

Drug May Slow Down Multiple Sclerosis

   Hurrah! Someone in research actually thinking about what medications cost those who use them.

Drug May Slow Down Multiple Sclerosis

"…If these findings are confirmed then we would have a less expensive oral medication that is of comparable benefit to the current treatments..." 

   My eyes had to blink at the date stamp on this story at first from WebMD with AOL Health as Patti’s neurologist had tried her on Immuran long ago before the astronomically expensive interferons were ever marketed for MS.

Christmas at home

     Bringing Patti “home” for the Christmas weekend a year ago was a quest, this year I found myself second guessing Christmas at home.

     As a caregiver/spouse of nearly 20 years I was still lost last Christmas in the mythology of John Henry vs the Steam Drill Engine, except it was me vs the 3 shifts of staff of a 24/7 care facility.

     Talking with Patti as the weekend wrapped up, we shared these thoughts in light of the mantra that "home had to be better". Patti simply reflected, “Why?” … There are times I wonder if it is MS cognitive problems or maybe she just sees clearer than I?

     I’ve learned to respect the care and teamwork of 3 shifts of professionals taking care of Patti. Even more important Patti has become somewhat “spoiled” by that level of care. Beyond the human factor are mechanical lifts to help with and improve the safety of caregiving plus facilities are 100% wheelchair accessible.

     Home is a one man show, 24 hrs a day.  Blessed with the insight of retrospect we should have worked out some hybrid. Perhaps sleeping there and spending all day and evening at home?

     Stupidly I pulled a muscle in my arm to kick off our “weekend at home” trying to push Patti’s wheelchair with one arm through a Mall while juggling packages in the other. Without lifts or teams, every remaining caregiving function was affected. Home caregivers have no safety nets.

     It was a White Christmas. No snow fall, but plenty of snow cover. Christmas Eve was beautiful and so easy to hear Bing Crosby crooning "White Christmas" from snow piles everywhere.

     Attending Christmas Eve church services a hillside community can be a challenge when dealing with a wheelchair. Eventually we had to park blocks away and use the middle of the street as sidewalk curb cuts were blocked by plowed snow that the able bodied could step over.  Viewed from the perspective of Patti staying up until midnight (considering her normal bedtime is 7:30 PM) enjoying visiting with her parents and relatives following Christmas Eve services obviously being pushed up and down the streets in the Christmas Eve air was good for her. <grin>

     Home caregiving for Patti is intense with a level of disability of 8.25 out of 10 on the Kurtzke Expanded Disability Status Scale (EDSS). 'Activities of daily living' (ADL) or bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are totally dependent activities for Patti. On the Barthel Index of ADL, Patti scores only 2 out of 20. Beyond taking care of her ADL and administering multiple medications several times a day, I had totally forgotten the extent of related laundry and housekeeping chores. Support time seems to never stop and outings often needed to wait for transfer of loads from washer to dryer. 

     Christmas day intermittent mist fell on snow cover and as temperatures slid I would find myself driving through pockets of thick fog. I often wonder when passing in and out of fog if it isn’t similar to the mental confusion and cerebral symptoms that impair Patti’s thinking when MS flares.

     Sleep and bed rest dominates Patti’s MS day. Yet able bodied holiday time tends to be activity driven “go here, go there”, eventually, the ‘best of possible’ times works out for all.

     It wasn't a Normal Rockwell or Charles Dickens Christmas but there was laughter and family and too much food and sweets ... (Patti particularly enjoyed the absolute lack of dietary discipline <grin>) and it was "WHITE" and how many times have we dreamed of those.

     A dear friend and fellow MS caregiver spouse sent me this article from her hometown paper on the Mississippi Gulf Coast.

“… Our plea to newspapers and television and radio and Web sites across the land ... Please, tell our story. … We are here. Do not forsake us. … We are no footnote. …”

MISSISSIPPI'S INVISIBLE COAST

ChristmasCard 2005

 

   In this 21st Century sometimes I get lost between the 'real world' and cyberspace. Here’s to sharing this scan of our ‘real world’ Christmas Card with our cyber friends and family … The oldest pictures of Christmas "past" even preceed Al Gore's invention of the Internet, or Dan Qualye inventing Spell-Check.<grin>

Caregiving: sentinels for sanity

       At last, the winter solstice! Welcome Winter!

 

     Yes, the holiday season is such a supercharged time of emotions and stress for everyone.

 

     Thank God for cats! As pictured, “Stardust” keeps it all in perspective. There are times I’m convinced that the eyes of cats are sentinels for sanity checks. <grin>

             

MS & geography

Geographic location and multiple sclerosis 

“The number of people who have multiple sclerosis (MS) increases the farther away they are from the equator. …”

     While this snippet gets attention frequently during boring media cycles, it never ceases to intrigue me. Clicking the blue headline will open the full story from WebMD AOL Health. Of all the pieces of the MS puzzle, this strikes me as the strangest.

     Also I can’t help but wonder how medical diagnosis and reporting or even life expectancy in equatorial nations, e.g. Indonesia, Ecuador, Congo, and Kenya wouldn’t skew such research.

Ice storms and coffee

     Stepping onto the patio for a morning cup of coffee after an overnight coating of ice always has a special luster. Especially since WINTER has not even officially started yet <grin>!!

     Three "Fall" snow storms have left behind a total of 14 inches of snow plus sleet and ice. These are all bonus views! ... or complimentary holiday decorating. <grin>

MS & Menopause

     Four months ago I encouraged experimenting with abandonment of Seasonale and/or LoEstrin which had been used for years for Patti's menstrual bleed control. Observations and conclusions seemed to point toward Patti being in Menopause and hormonal variations might be causing some dramatic inconsistency in symptoms.

     That Patti’s natural hormone levels where menopausal was confirmed by blood testing following suspension of these medications.

     Two Wednesdays ago I attended Patti’s Care Plan Review. In discussions, I learned some interesting observations since abandoning these unintentional hormone treatments.  Dysphasia related vomiting has been non-existent for the last four months. There is even some evidence of stabilization in memory loss that has been noted by facility staff. I certainly can confirm stabilization in her physical ability and mental focus needed to transfer to and from a wheelchair and car.

     Obviously this is only anecdotal evidence and doesn’t prove anything. So little is known or even being scientifically researched about the effect of Menopause on MS, and MS can and will change at will.

     At best it is simply interesting that letting Patti’s body go through its natural passage has been associated now for almost 4 months with stabilization of particular physical and cerebral symptoms.

MS & TV

    Our daughter enjoys a Tuesday evening, Fox TV program “House”, an off the wall medical mystery show. Catching snippets and overhearing dialogue while doing chores this evening I could follow that the plot involved a diagnosis of Munchausen Syndrome. Give or take some other twists.

     I learned that Munchausen Syndrome is a type of factitious disorder, or mental illness. A person repeatedly acts as if he or she has a physical or mental disorder when, in truth, they have caused the symptoms. People act this way because of an inner need to be seen as ill or injured.

     Now comes the clincher. The show’s script writers gave the patient the “excuse” that while she was growing up her mother had Multiple Sclerosis. People were always doing things for her Mom, and taking care of her Mom, getting her things, brushing her hair …  Her Mother died when she was 16 and the show's patient had learned to associate attention with illness.

     I just sat there with my mouth open. It may mean nothing to 99 out of 100 people. Yet, we have lived with MS in our family and that includes a daughter raised by a Mother with MS.

     I tried to rationalize that script writers were writing for the reasoning of a mentally ill patient. However, I couldn’t help but wonder what misinformation a viewer with no real knowledge of living with MS could walk away with.

     In all these years I have never heard or read of any family member developing Munchausen Syndrome because another family member had MS.

specialty / biotech medicines

     Opening “Annual Health Care Enrollment Material” for 2006 I was surprised and also not surprised to see a special cover page, with bold type headline:

IMPORTANT PRESCRIPTION DRUG BENEFIT

INFORMATION FOR 2006

     The piece masterfully identifies the alarming cost of “specialty / biotech” medicines with “annual costs ranging from $10,000 to $500,000 per patient” and how this new category and increases in these special co-pays keeps the overall cost of a prescription drug benefit down and co-pays low for rank and file participants and their families using traditional prescription medication. (In other words basically pigeonholing those who use them from the plans’ rank and file participants.)

     Patti’s level of disability has made MS specific medicines a non-factor and this does not affect her directly. However, I can’t help but wonder how it would have impacted our lives if she was still taking Avonnex. (a "specialty medicine") Could we afford to continue with dramatically higher co-pays? Or increased reviews to determine effectiveness of arbitrarily changing levels of expected results?

     Sadly nowhere does the logic attempt to look at why the “specialty/biotech” manufacturers charge so much for their product. It just accepts the cost and works out from there placing the “problem” on the people who need the medicine.

     Our health care insurance system is so broken that one stop gap brick at a time is not going to fix it. The 2005 hurricane season obviously will have a catastrophic ripple effect through the insurance industry for years to come.   

     The many heads of the insurance industry hydra will be sniffing for every opportunity to save itself and its stock holders. Economic self preservation is understandable to me and millions of Americans have their retirement funds invested in portfolios that contain insurance industry stock. The hunt just seems unfairly focused on the consumer end and not the manufacturer side of the equation.

... suddenly stepped into the car

     Continuing to use the transfer board as an incline we seem to discover new ways of transferring Patti between wheelchair and our car. 

     Sunday, Patti suddenly and without hesitation stepped into the car laterally while sitting inclined on the transfer board one foot following the other. I watched in stunned surprise as she safely completed her slide into the car seat. It’s been over 3 years, or more, since Patti has stepped into a car! This motion would be the equivalent of how an able bodied person would enter a car seat.

     Talking with her she had no idea what she had just done. You normally have to lift her legs in and out of a car.

     Patti’s leg strength always tests just fine; her problem is that MS related myelin damage has short circuited her brain’s ability to communicate with the muscles. I can only guess that Patti’s increasing comfort with the transfer board as a tool, and the variables of MS symptoms and fatigue just happened to all hit the optimum zone at the right time.

     Dinner at home with veal parmesan and ziti plus a ritual yearly viewing of Christmas Vacation with the Griswolds was of more interest to Patti <grin>. Feats of transferring are just the means to an end.

Richard Pryor RIP

Statement regarding the passing of Richard Pryor

from the National MS Society, December 10, 2005

 

     On behalf of the National Multiple Sclerosis Society, we want to express our sincere condolences to the Pryor family. We are all saddened by this loss as Mr. Pryor will be remembered as a ground-breaking comedian and world-class talent. "Mr. Pryor struggled with the devastating effects of multiple sclerosis for many years and he will be remembered for his courage and dignity," said Joyce Nelson, President and CEO of the National MS Society. "The Society was honored to work directly with Richard Pryor and is pleased to currently have his daughter Rain as an ambassador for the MS cause."

December mornings keep getting better

... with eight inches of snow to start Saturday morning.

December mornings SHOULD look like this ...

Outmaneuvering my lawn cannon aimed north, the snow sneaked in from the South. With just the right mix of ice it painted all it touched with a high gloss.

 

A peak of sun cleared the roads and it created an ideal opportunity to take Patti for a ride to view holiday home light displays with that high gloss snowy backdrop. CONTRAST is beneficial to her visual challenges.

 

Sometimes in “living with MS”, as the caregiver, you have to seize the moment. High gloss snow, clear roads, twilight, holiday lighting, and such factors do not always align. Riding in a car, Patti is also no longer different than anyone else. Follow it all with a hearty Italian dinner at home with the fireplace going (if you can dislodge the cat from in front of it without getting clawed) and December Sunday's can't get much better.

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Caregiving: an observation

Recently reading the WebMD interview with Meredith Vieira, I was struck with an observation that MONEY certainly affects options.

 

It seems to me that over the decades a formula has been developing that those with more money have more options. Those with more options have more hope.

 

A person or family able to afford current MS medications is going to have a different future view of "living with MS" than a person or family without prescription coverage or who cannot afford their plan's high monthly co-pay.  Or considering divorce in excess of 90% in such situations how is hope impacted when the insured spouse leaves and the prescription plan terminates?

 

Our media and culture tends to be drawn toward celebrities and anecdotal success stories. That is understandable. Yet there is a risk that truth may be in the silence of those not seen and heard.

 

Escalating co-pays, decimation of family finances, divorce, and unemployment are just a few of the more common challenges, beyond health issues, faced by any person "living with MS" or a spouse/caregiver.

 

Our health care insurance system is broken and "we the people" only hear about it every four years when someone wants to be President. Yet some more than others have to struggle with it every day.

HOPE is so critical to "living with MS". Yet for some, correct that, too many, money is becoming a cage for hope.

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Caregiving errands in the rain

     Tuesday, nature was an illusionist; it was a March day yet late November. Rain and wind seemed to sense and thwart our intention to try and transfer Patti to and from our car. Patti was enjoying the outing, so I shifted plans to running multiple brief errands in the rain. She stayed dry in the car and listened to the radio bemused with it all while I popped back in and out between our different stops.

      It was FUNctional for me. Normally caregiving time accomplishes little. Yet because of nature's mischief, Patti was happy just to be around the 'hustle and bustle' without the effort to directly include her in the wet Spring weather. 

     I've never met a puddle that doesn't inspire a Gene Kelly "Singin' In The Rain" impression and tend to splash her wheelchair anyway. That left me an umbrella, a parking lot full of puddles, and maybe I'll grow up tomorrow. <grin>

 

     As we talked between errands I realized this was her first taste of a slice of reality (of a normal night of being a parent and homemaker) that she's observed in a long time versus what she sees when I can include her. All in all it provided for some interesting conversation.

 

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