... and observation

Recent dosage changes in Zanaflex for symptoms of spasticity have had rather rapid and positive observed results. Twice in the last four days I’ve assisted and observed Patti during transfers in and out of vehicles and from wheelchair to bed and no spasticity has been noticeable in her legs. Her dosage was finally increased only a week ago from 2 MG to 6 MG daily.

 

Spasticity according to the Multiple Sclerosis Association of America is a common symptom of MS. However Patti who has had MS for 18 years never exhibited any spasticity until about 9 months ago.

 

Oddly though while now spasticity is not complicating transfers, for whatever reason Patti is recently unable to ‘direct’ her left leg to consistently respond. More often than not she has to use her hands to position it where she wants it to be (or whoever is helping her). … I have no idea if this is a new symptom or if it was previously masked by spasticity.

Reflection

Decision making is supposed to be one of those traits you perfect as a caregiver. Like a good manager you evaluate then decide and move on. You are not supposed to second guess yourself.

 

As a spousal caregiver I also hold ‘medical power of attorney’ and ‘durable general power of attorney’. These may make my decision making logistically smoother but increase the pressure on the personal ethics scale.

 

I have never found it easy. With progression of cognitive disability, the less Patti has been able to participate in the decision making the more difficult it has become. Answers may be logical or pragmatic or any of a thesaurus full of synonyms but it never gets easier. ...

Friends are extraordinary medicine

In spite of our weather prognosticating rodent, Wednesday was a marvelous day! I seized the opportunity and brought Patti home for dinner which also serves to force some family time with a busy 16 year old daughter.

 

Picking Patti up we learned there was a message that two friends were coming to visit. Messages are not the forte of care facility. ‘Sharon and Beth’ were the only clues left by the time the message had filtered through multiple staff and shifts. I was impressed as Patti began to logically match people to the names and then rule them out based on where she believed they last lived. I decided to leave my cell number at the desk just in case we did not get back in time.

 

That was fortunate, as they were able to reroute their visit with Patti at our home. Sharon and Beth are child hood friends and former classmates of Patti’s. Even Sharon’s Mom who likewise had known Patti her whole life tagged along. Sharon (who Patti had ruled out because of where she lived) had actually driven up from Philadelphia to visit. Patti absolutely enjoyed this surprise visit. Operating mostly in long term memory Patti conversed freely and effortlessly. Observing all this, one could find it hard to believe Patti even had cognitive or memory challenges. I myself found it hard to believe at times. The inconsistency of MS symptoms is so baffling.

 

Friends are extraordinary medicine; there are no ifs, ands, or buts about that.

We hope this all is of help

Why this journal? It’s easy to digress and drift so I ask myself this question often. Primarily it had a dual purpose to improve communication to Patti’s family and friends and to share the transition from homecaregiving to a care facility. Additionally it was to ‘not be silent’ to ‘not hide’ how progressive MS can be and how it affects the person with MS and their family, or ‘living with MS.’

 

Our primary goal is somewhat easy to stay on task because it is basically reporting. The additional motives are driven because we were denied a lot of information in the early years that frankly probably would have changed the way we approached things.

 

For example, sale of our home to buy or build a more accessible home for the future was consistently downplayed by Patti’s neurologists and NMSS support groups. People are quick to come up with optimistic statistics. (We have never understood the promoted statistics of MS. For example, NMSS informs you that only 25% of people with MS will need a wheelchair yet in a recent NMSS magazine the overwhelming majority of people pictured were in wheelchairs.)

 

As Patti got worse (and her onset and progression predates modern treatments), it wasn’t until the early Internet days and Prodigy bulletin boards that we first started to discover others like us, families struggling with severely disabling MS. Exploring ‘alternative treatments’ the percentages dramatically changed even further. We realized people like us were suddenly not in the mainstream and ‘invisible’ to NMSS and newly diagnosed. The attrition rate of spousal caregivers is astronomical further isolating severely disabled people with MS. And as evidenced by Patti’s level of disability she could not tell her own story.

 

This journal is not meant as a counter balance to the optimism and hope of NMSS and MSAA. We grasp onto hope MORE than any one.

 

This journal simply shares Patti’s story, told primarily from the caregiver’s perspective. Postings fluctuate depending on many variables. Please always feel free to comment or email me directly. Thank you to the new friends we’ve made in the last 10 months for your kind thoughts. We hope this all is of help to some one some where.

unable to connect

MS makes an unsolvable puzzle of Patti’s feelings. MS damage complicates her ability to connect a response to an emotion especially symptoms related to Pseudobulbar Affect. This in turn makes it extremely difficult to relate to Patti emotionally or share an emotional experience. Short term memory problems and mental confusion only blur the whole situation.

 

Patti’s cat, Teazer (pictured playing ‘on’ Patti Christmas Morning) and also our eldest at 19.5 years went into kidney failure. ‘Good byes’, euthanasia and all such decisions get complicated because of the transition to a care facility. Some days a genuinely NEW aspect of caregiving and living with MS pops into the day.

 

Bringing Patti home for some final time with her cat Patti seemed to just jump to the future skipping all the in between thoughts, more often than not referring to her cat as if she was deceased. Talking with staff at the care facility later she simply stated 'matter of fact' that her cat had died and she wanted to go to bed. (When at the time the cat was alive.)

 

MS damage challenges trying to reach out or others trying to reach in. I wish I knew for sure how Patti felt? Will she feel different in a couple hours when alone? Sure this is only about a pet, would it be different it was about people??? When an emotion cannot be connected to a response does that mean it just does not exist? Or does it drift lost inside you?

 

Outside looking in as a caregiver, or family, (or even neurologists) we can just ‘say’ MS creates a problem. Yet we do not LIVE the challenge. I can’t even imagine what it would be like to be ‘unable to connect’ that intangible emotional part of me to an expression or response to share.

Have some fun, visit the Commonwealth of Pennsylvania’s Official “Punxsutawney Phil” web site for live ground hog cams, replays of this morning's shadow sighting, and more. On this bright sunny morning in Pennsylvania, Phil saw his shadow and the forecast is 6 more weeks of winter. Happy Groundhogs Day!

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.