a simple drive in a storm

Driving South to North in this winter storm this weekend I was struck by the differences just a couple hours can make.

 

Road crews in Maryland ‘battle’ 2 inches of winter mix vs. roads so clear in Pennsylvania you feel like you’re driving in a Currier & Ives print.

 

Just a couple degrees in temperature make that much difference in what falls. Local government experience and budgeted resources determine response. Driving skills do matter; spin outs and abandoned cars decrease as you drive north.

 

Even in winter storms flat tires happen. AAA sucks. Regardless of weather or geography good friends matter. … and thank goodness Patti was safe in a care facility (a year earlier she would have been probably confused, alone and unattended almost 10 hrs longer than planned) … a simple drive in a storm would have resulted in a debacle instead of an adventure.

get all the pieces get on the board at the same time

Mother/daughter traditions or bonds one might take for granted such as clothes shopping has been denied Patti and Megan since … well, forever. Necessity shifted this as many other traditions onto a father/daughter track, or able bodied parent role. Last night we were able to include Patti in dress shopping with our daughter for an upcoming dance.

 

No matter how accessible you try to make a clothing department, racks of dresses and clothing are a ‘forest’ when you are in a wheelchair. Visibility is next to zero.

 

On the other hand 100% visable from wheelchair height was an old fashioned candy counter where you could buy chocolate or candy by the pound or by the piece. <grin> With a live and accommodating sales clerk behind the counter, Patti was in heaven.

 

While I had hoped to create some fun mother-daughter time together, they both did have fun just in nearby departments. <grin> You can’t create ‘memories’ or ‘moments’. As a family caregiver I've learned, at best, I can try to get all the pieces get on the board at the same time.

doing ‘something’ is important to try

Sometimes, someone has to ‘stir the drink’.  A caregiver often has to be an advocate in principle and legally. Wednesday, Patti’s doctor and unit charge nurse after reviewing her Neurologist’s missing outpatient recommendation letter of July ’04 that I hand carried back from Patti’s appointment and my multiple “talking point” notes on specific issues made the first significant and aggressive changes in symptom treatment in almost a year.

 

I had hoped to be invited. I suspected that somehow would be logistically impractical. I was glad that I had learned to leave “talking point” notes. Paperwork fuels bureaucracy. However they did call afterwards and update me on care plan.

 

Zanaflex for spasticity (manifested primarily in legs) will be doubled as recommended as first stage in possible increases. This has a dual objective in that spasticity is a factor in fading ability to transfer. Progress will be monitored and a dosage increase plan is scheduled if necessary.

 

Ditropan XL will be started for bladder control overnight. This is first aggressive bladder control in over a year and unique this time in that it is time specific (overnight) in focus. Getting ready for bed and waking up will be accompanied eventually by a toileting program, here again transfer ability is a factor and spasticity control becomes a related aspect.

 

SEASONALE will replace LoEstrin which was creatively misused to reduce menstrual bleed cycle to 4 X a year. SEASONALE is designed for that purpose. As a male caregiver it took a while for me to figure this one out. <grin>  Fortunately a good family friend is a Nurse Practioner specializing in OBGYN and recommended controlling and reducing menstrual bleed cycle once Patti’s eye hand coordination and cognitive problems prevented her participation in her own care.

 

(Of course now a certain 16 year old is convinced that SEASONALE is the greatest advance in the history of medical science <grin>.) 

 

Individually and interrelated these will attempt to revive Patti’s level of participation in assisting in her own care. Most common side effects at first could be increased drowsiness - only further enhancing Patti’s appreciation of her naps. <grin> That in itself is not a bad thing. Rest is helpful, quality of rest is even better.

 

MS has a way of grinding you into just being happy you’re not going backwards. While there are no guarantees, doing ‘something’ is important to try. 

Would You Believe: Toad Outsmarts Medicare Reps?

After half a year of near daily trench warfare with Patti’s medical insurance including Medicare which ONLY absolutely befuddles any and every scenario. The following story comes as no surprise to me …

 

     Would You Believe: Toad Outsmarts Medicare Reps? 

   "A toad -- just an ordinary toad, mind you -- provided more accurate responses to Medicare policy questions than Medicare customer service representatives, according to a new study by L.R. Huntoon, a practicing neurologist and editor-in-chief of the Journal of American Physicians and Surgeons. ..."

     “ …It found that 96% of the time (Medicare) customer service reps gave the wrong answer … By jumping right for "yes" and left for "no," the toad crushed the competition, answering correctly 50% of the time….”

doesn’t ‘gallows humor’ make the dark less scary?

Caregiving is no more or less frivolous, than an operation but neither is it a gathering of grim reapers. It IS part of life. Maybe what we need is a game not unlike 'operation'.

Forget to file form on time –

                                    LOOSE your turn.

Your family visits nursing home –

                                   GO AHEAD 5 spaces

Can’t remember if you gave RX ...............GO BACK 3 spaces

No insurance...............ACCESS Denied TAKE Poor House Rd

Didn’t set brakes, (Mom) rolls away...............START OVER

Maybe we need some type of good ol' fashioned family activity that plants the seed of the question “Who will take care of me?” “Can I take care of ____?”  People need to find a way to think and talk about it. ... and doesn’t ‘gallows humor’ make the dark less scary?

EVERY ONE will one day know or love someone who can no longer take care of themselves. That is a universal truth in the 21st Century. Yet how many ever give it a second thought until they have to?

bureaucracy is fueled by paper

Visiting Patti with a butterscotch milkshake this evening we discussed this following information. Knowing it will most likely be shortly forgotten by her, I make the effort anyway when possible. Additionally I wanted to leave written notes on the topic with the charge nurse for her unit to insure it is reviewed by her doctor for weekly rounds. Successful transition to the care facility era regrettably requires acceptance of the operating principal that bureaucracy is fueled by paper. ... At worse Patti enjoys the butterscotch milkshake and charming company. <grin>

caregiver can expedite most medical communication

Oversight is essential for a caregiver.

 

Reading Patti’s neurologist’s outpatient note to her physician I can’t help but shake my head at one particular line prefacing a proposed treatment for incontinence. “…I do not have a full list of the medications she as been on, but I assume it has been Ditropan and Detrol…”

 

The REAL Story and history ... is that IMIPRAMINE, DETROL and FLOMAX were all tried unsuccessfully over the years.

 

CATHETERIZATION was even experimented with before near catastrophe ended that trial.

 

DITROPAN was only tested for a couple weeks as a sample pack from our GP. All our attention was involved in admittance to a care facility. With admittance, Patti’s physician changed and DITROPAN was lost in the shuffle.

 

Her neurologist’s assumption, as you can see, could have wasted time, and maybe even sent the care plan down an unecessary detour. ... Of course, I will 'fill in the blanks'! A caregiver can expedite most medical communication. You just have to stick your nose in to it.

‘one horse sleigh’ of the neighborhood!

NOTHING can rival the embrace of a snow storm. With swirling snow falling around you whipped by wind chills of zero degrees Mother Nature hugs you as only a parent can hug a child. It is magical!

In such good spirits we headed out to visit Patti this morning. Unbelievably as picture of parking lot shows we were alone and Patti had the ONLY visitors of the day. She was in good spirits and enjoying watching the falling snow out her window. In her youth a skier, now Patti is happy watching snow.

It wasn’t that many years ago that in her scooter days she used to pull neighborhood kids around in their sleds behind her Rascal all terrain scooter until the snow became too deep. She was the ‘one horse sleigh’ of the neighborhood! <grin> MS was not going to stop her in those days.

People spend thousands to travel and play in snow for a vacation but when a forecasted foot of snow falls in their neighborhood it becomes an ‘excuse’. Go figure!

on the same page

It was beautiful morning for a drive with a couple inches of fresh snow on the ground and in Pennsylvania that is a non factor for traffic and roads. We were off to Patti’s Neurologist appointment at the Hershey Medical Center, the finest medical facility that the revenue from chocolate can build.

 

We talked about Tysabri. Just is NO WAY that any insurer will approve Patti to even try at her level of MS. Neither is there any evidence nor reason to believe it would benefit someone at Patti’s progressed stage of disability.

 

As always (and in spite of increasing problems transferring) Patti tests well for leg strength. She baffles neurologists as it is her 'perception of falling' more than physical ability that affects her mobility. The acceleration of her cerebral related MS symptoms over her physical related MS symptoms over the last several years is a most rare progression of MS.

 

For once it was enlightening though frustrating. Some how between Patti’s Care Facility and associated physician group they never received, misplaced, or lost a fairly significant ‘outpatient letter’ from Patti’s July appointment.  …. Again one of those transitional glitches. As a home/caregiver you would know you were missing something or had not received something and would pursue it. Institutions do not have that simple check and balance because of all the staff and shifts involved. In this case the only check and balance is the next appointment, 6 months later.

 

For example, spasticity which had begun about 9 months ago and was first treated at an introductory level of Zanaflex of 2 MG at bedtime has continued and even worsened. However NO increase in dosage has occurred in the last 6 months.  … Yet specifically detailed in the outpatient letter is a program that could have increased that dosage 6X by now. Along with a couple other related programs aimed at bowel and bladder control.

 

This is not to say any of this would have worked. It’s just frustrating that it hasn’t been tried. It’s all about transition. ... at least we all can get back on track and on the same page.

"catlitter" cake

Where is a camera when you need one <grin>??

 

This email from Patti’s Mom about a visit with Patti today will just have to do. Visitors include Patti’s best friend Sharon and her "leftover" birthday cake from work.

 

“… It was made to look like a cat litter box, filled with cat litter...hilarious, bent tootsie rolls hanging off the side of the litter box. Patti truly enjoyed eating this very delicious "catlitter" cake...it was a very moist spice cake dough. Sharon then painted Patti's nails...when we departed to come home Patti was enjoying watching a soap opera on TV. …”

 

Mega-applause for warped but creative cake baking!

please start to think about it

Much like the Medicaid story out of Tennessee I highlighted several post ago this story is worth following. What is involved here is an existing financial safety net for people unable to continue working because of a disability. This safety net not only affects the people in need but those around them.

 

Bush Plan May Reduce Disability Benefits

Millions Wonder About Potential Impact of Bush Privatization Plan

 

YES, unquestionably our system is broken. Doing nothing is not an option … not any longer.

 

I would encourage everyone to begin to educate themselves and express your opinion to State and Federal representatives. A knee jerk decision to jump on one side or the other is tempting but not necessarily the best solution. Safety nets are not always for someone else, they could be your life line one day.

 

Please start to learn about it and think about it.

a no problem day

While the rest of the country continues to get real snow, we at least finally got enough to help my patio alligator stalk a dove. <grin>.

 

It was also a perfect amount for a snow driving lesson for a certain 16 year old.

 

… and it fell later yesterday AFTER we had taken Patti for a Sunday family outing to the movies and donuts. Seems simple but “Dunkin’ Donuts” are a delicacy where healthy institutional food is served. “Racing Stripes” fit the silly and simple comedy model that works perfectly for Patti’s attention span and memory.

 

Transferring in and out of a wheelchair to a vehicle in snow can be exponentially more difficult and a safety issue. Fortunately snow was not a factor in our activities. Additionally transferring was no problem for Patti as both her physical strength and mental focus were at peak levels.

 

The inconsistency of MS is so baffling. Just when Patti’s strength and mental confusion had been so poor that challenges in transferring were beginning to affect people even trying to take her anywhere, she suddenly has a “no problem” day.

get involved early

Neurologist appointments are always somewhat of a mixed bag from a caregiver’s perspective. Half of the time I think of them as next to useless the other half accepts that a neurologist is the key to other medical help. Physicians, nurses, etc. too often defer to “Patti’s Neurologist” before trying a new idea or treatment.

 

You can bang heads with the neurologist or you can work together. You CANNOT win banging heads. You have to find a way to work with the neurologist on their terms.

 

Neurology is too abstract and MS is too unique. The caregiver MUST become the bridge.

 

In retrospect it is NEVER too early to test that role. I admit I waited too long before I became involved in Patti's appointments.. 'Necessity' is too late. Currently progression of MS impairing Patti's cognitive and memory abilities prevent her from directing her own care. My role at appointments shifts more to Patti's advocate.

 

As you may have guessed Patti has a neurologist appointment this week. I prepare by spending several hours (maybe a day all total) in the immediate weeks before compiling notes, reviewing research, clinical trials, new meds, etc. Mainly now days working through websites for NMSS and MSSA. Then reduce it all into a half page summary of an agenda we want, with attached supporting documents. A neurologist may or may not agree. What is important is to go prepared and with a plan.

 

Learn from our mistakes. FIND a way to talk about it and get involved early.

Accessibility and convenience are concepts ...

Elevators are the ONLY means for people in wheel chairs, walkers, and electric scooters to get between floors in buildings. Usually they are boldly marked and designated with this logo / sign and supported with other such signs directing people with need to them.

 

Fixed framed strollers, wagons, carts, even able bodied shoppers with personal hand trucks increasingly jam elevators. None of which resemble the symbol boldly displayed. Lines waiting for limited elevators grow longer every time we go out.

 

Most recent example, Patti and I waited in a line of nearly 50 bodies, 20 strollers (all but two empty of bodies as children were either running around or had used escalators), 10 red wagons, and half a dozen hand trucks for almost 20 minutes to go between floors. ONLY two wheel chairs plus two attendants NEEDED the elevator for access between floors.  In reality the elevators were adequate for accessibility and there should have been no wait.

 

“Overhearing” parents “explain” to curious children why people are in wheel chairs while waiting in line, I was curious myself why no one offered to let Patti or the other person in a wheel chair go ahead of them and their able bodied family. Manners and courtesy are taught differently today.

Accessibility and convenience are concepts that ONLY can be confused by the totally able bodied and self absorbed.

Pennsylvania Farm Show.

Wednesday Patti and I attended “the largest indoor agricultural event in America”, the Pennsylvania Farm Show.

The Food Court alone is worth the trip. As an aficionado of milkshakes, the Pennsylvania Dairyman’s Association's 'milkshakes' border the surreal.

It was a mega version American Gothic kind of day. The comic talent of the farm animal is underestimated <grin>. We had an enchanting time (and MS accident free) !

Is it balanced or outweighed by intangibles? --- It depends <grin>.

Paperwork, at times, seems to dwarf any other aspect of caregiving, a modern David vs Goliath relationship to get anything accomplished. Bureaucrats outnumber you, work by the hour, and RARELY associate a person to a piece of paper.

 

… and trees were murdered for this madness? Say it ain’t so! <grin>

               __________

I was web surfin’ and found this site for a “Fearless Caregiving Conference”.  … there is obviously money to be made off caregiving. I HOPE for those buying there are answers. Of course, in our consumer driven society this may just be the better way to communicate.

                                           __________

Our national health care crises ONLY gets attention during Presidential debates, then goes on the back burner. Self preservation makes every one thankful they are OK (for the moment) and then go 'stick their head inthe sand'. ... It wouldn't hurt if we all start paying attention to warning signs:

               Tennessee Drops 323,000 Adults From Medicaid

NASHVILLE, Tenn. (Jan. 10) - Gov. Phil Bredesen announced Monday that he will drop 323,000 adults from the state's expanded Medicaid program to save about $1.7 billion a year, but will preserve health coverage for children. ...

                                          __________

 "Denial" was mentioned in a comment to a previous entry on memory.  Yes, denial of symptoms and progression through acceptance is a stage for ALL involved. ... It is a complicated time

 

Retrospection has shown me that denial of the consequences of caregiving on my own future became overwhelmed in a duet with caregiving. Home caregiving decisions are career and life changing. MS traditionally strikes in mid life. The American prime income earning years are sacrificed at best for zero income, more likely negative spending. There is an economic price for caregiving and more …  Is it balanced or outweighed by intangibles? --- It depends <grin>.

involvement with others.

We did get Patti out for a family outing Sunday with a movie, family time, and dinner.

 

“Phantom Of The Opera” even though on a 30 ft tall screen couldn’t hold Patti’s attention. She had wanted to see the movie and we had seen it ‘live’ years ago, a memory she had recalled with conflicting results over two days. … You notice her increasingly spending more time looking around, mostly down at the floor for some reason, instead of ahead at the screen. … Though she claimed she enjoyed the movie.

 

Visiting with her folks and dinner rounded out the day. That social environment seemed more comfortable for her as nothing required attention span over a period of time.

 

Transferring in and out a vehicles continues to become more difficult. This in turn restricts who will even try to take her on outings. I can’t say it is solely a function of strength. Mental confusion is as much a factor if not more. Staff at care facility increasingly uses a Hoyer Lift Sling to transfer Patti because they are having problems transferring her from chair to bed.

 

Patti’s ability to assist in transferring so far has fluctuated which is not unusual with MS strength and fatigue. However it is a CRITICAL stage, as it is vital to levels of involvement with others.

memory should not be underestimated

Memory is spooky to watch malfunction. When memory is not dependable it can quickly become a risk when you must leave some one alone. Memory becomes a safety concern in home care and a question in the transition to 24/7 attended care.

 

MS Memory in Patti’s case seems to defy a formula. When I believe I see a pattern, it can blur into inconsistency. One day a memory is there and vivid for her the next it’s confused. Short term specifically is atrocious. …  But any given day is uniquely unpredictable.

 

Personally as a caregiver I found Patti’s inconsistent and unpredictable lapses more risky than a steady decline. You ‘want’ to believe the best. You ‘want’ to trust. Others ‘will’ believe and trust  … and just when you do let your guard down memory malfunctions …

 

An incident or lapse can seem so minor, and maybe it is, but memory should not be underestimated.

An interesting story

Here is an interesting story from our local paper of a caregiver / parent that took it all to the next level …

‘Silly book' may help ill kids

     “… At the urgings of friends and family who read her late-night, often frantic e-mails, Todaro compiled a book.

     "I wanted for people to know how this changed my marriage, my family, my whole life."

     The 190-page book contains letters, e-mails and entries from her journal as Todaro shares her life's struggles and surprises …”

 

For the full story click on the blue headline.

Perception

Caregiving has many perspectives. Starting to fill in the data for tax software and some Medicaid update forms frames the past year in yet a different point of view. ALL the financial factors ram their way to the front. It is an overdose of reflection and a gloomy and frustrating examination.

 

Patti’s cognitive abilities are too damaged to process or comprehend. As the caregiver the economics of care is a solitary task. … Looking outside, the dense ground fog seemed as if conjured by my mood.

 

I decided to pop over and visit with Patti. It is easy to loose balance, to forget there is a person behind the disease.

 

Interestingly I think you do have to forget there is a person behind the caregiver. Until caregiving is over that person IS the caregiver. However the person with the disease IS NOT the disease.

 

Those last two sentences do sound like you might find them in a healthcare fortune cookie; but there is truth there.

 

Anyway after sharing my experiences and thoughts with Patti, she asked, “Did you say it was REAL foggy out?” “On nights like that I always liked to pretend I was in London.” … Then of course, there is Patti’s perception. <grin> 

Recap

With the New Year, and new readers, a moment to recap makes sense.

 

Patti has a diagnosis of Multiple Sclerosis. -- In fact she’s been tested and retested over the years for other possible explanations, e.g. Lupus. The diagnosis of MS remains.

 

Patti was diagnosed as “probable MS” in 1986 at the age of 31. The diagnosis became definite with her first major exacerbation on Thanksgiving morning, 1989.

 

In those early years like most people with, MS Patti’s type of MS or clinical course was 'Relapsing-Remitting' MS.  Multiple Sclerosis makes up its own rules and can and will change types and course. Patti has lived most of these years with the rarer 'Primary-Progressive' and the rarest 'Progressive-Relapsing' types of MS.

 

Patti was already in a wheel chair before the modern medications now available to slow progression of MS were even available. She did try Avonex for over two years when already advanced and during 'Primary-Progressive'stage to no effect.

 

On the EDSS Disabilities Scale from 1 – 10, Patti’s current average score is 8.25.  

 

Relentless progression, safety, and need for 24/7 attended and custodial care finally overwhelmed home care after 15 years and in March of 2004 Patti was admitted as a full time resident of a care facility/nursing home.

 

This journal began about 6 weeks later to share our transition for others both interested in Patti and those who may need to travel this path themselves.

 

Multiple Sclerosis IS confusing. I encourage you to browse through these informational pages of the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America. Click on the blue highlighted words or phrases for more detailed information.

a new level of boring

Had one of the oddest visits with Patti tonight. Right in middle of talking with her she just nodded off sitting in her chair.

That has NEVER happened before. And it wasn’t even late. Can’t decide if it’s MS fatigue or if I’ve progressed to a new level of boring! 

Parenting side of the coin

“… Is all that we see or seem

But a dream within a dream? …”

Edgar Allan Poe

This line of poetry has both soothed and challenged me through years of caregiving, serving almost like a mantra. So when an opportunity presented itself for a quest to the grave of ol’ Edgar near Baltimore's Inner Harbor, I was off!

 

In my case caregiving has always been counterbalanced with parenting. My crusade expanded to Megan and a classmate (and students of American Literature).

 

Soon the day also encompassed the National Aquarium and ended dinning on crab cakes and steamed clams while overlooking the USS Constellation.

 

Spouse / caregiving and resulting single parenting has meant in our case  -- also raising Megan to live and succeed in an able bodied world. It's an interesting duality. This kind of day could not have happened WITH Patti; only with her safely attended and resting. 

New Year's Day 2005

Trying to keep Patti ‘in touch’ is still important, I believe. Her care facility is of course critical. It represents safety, 24/7 attended care, regular and ongoing therapy, and three shifts of custodial care. Home care as a one person show cannot match that.

 

Yet home care is about ‘home’ and family and more. 2005 began with an outing to Patti’s parents’ home for traditional good luck pork dinner. A day with hopefully the best of both worlds for Patti.

New Year's Eve

Visiting at a care facility can have dual agendas. When possible I try to visit at times I’ve learned can be problematic for Patti.

 

Immediately following dinner is such a time. Patti's Dysphagia can trigger emesis. Or additionally Patti could be feeling nauseous for unrelated reasons, but is unable to properly associate that she should not eat or eat lightly (or forget to even tell staff that she is feeling ill).

 

In her room alone, she cannot think through how to use the call button. And obviously when wheel chair confined rushing to a commode or even a trash can is not an option. …

 

Last night's New Year’s Eve visit served just such a dual purpose <grin> I wanted to stop by and wish Patti “Happy New Year’s” early because Patti has not made it to Midnight in years.

 

Patti and her stomach were not in harmony. Even though staff had done the janitorial work Patti was frustrated, confused, etc.  … I changed her into a lighter shirt (I personally believe half the world’s health problems are related to being tooooo warm.) and got her some peppermint hard candy to suck on. Then spent some time talking her into a calmer state. Shortly she was as good as she was going to get… and complaining about wanting MORE peppermint candy to suck on. <GRIN>...A true party animal!

New Year's WRENCH DROP

Central Pennsylvania has a history of dropping ‘weird stuff’ for New Year’s Eve, from pickles to bologna. Even “Access Hollywood” headlined the debut of our WRENCH DROP into this unique pocket of Americana.

 

The town was named for the “mechanics” that worked on the pioneer wagons heading West through the Cumberland Valley. If only those mechanics and pioneer customers could see it now … <GRIN>