CARER & Quality of Life

“My mother was 35 when she was diagnosed with MS. … It was not only the rapid progression of the illness that affected my mother – and us, her family. It was the rapid deterioration of the quality of her life, her self-esteem, her independence….” 

                                                       J.K. Rowling

 

As a daughter who has known what it is like to grow up with MS in her family, and the best selling author of the Harry Potter series, J K Rowling pens the foreword to the “Principles To Promote Quality Of Life For People With MS” on the Multiple Sclerosis International Federation (MSIF) web site.

 

As Rowling reflects, “…There never seemed to be quite enough money to provide services for people with MS; the only option was to be hospitalised. … Quality of life is something we must all fight for in every country around the world, and to fight we need tools that are appropriate to the battle ahead.”

 

“… internet communication will allow a sharing of experiences…”

 

-- it was kind of cool recently to find my own AOL Journal Caregivingly Yours “suggested” in two Australian caregiver publications or “carer” publications as they call it down under.

 

I found the PRINCIPLES enlightening to read and consider. As a ‘carer’ you get hammered into your immediate space, situation, and time. The bigger picture of at least 2 and a half million people with MS around the world, plus their CARERS’ and families is perspective.

 

None of this ever helps immediately or tangibly. However, from the earliest desperate days as a CARER, it was a breakthrough when I learned the simple truth that I was not alone. We were not alone. Internet communication was indeed one of the “tools” I needed for the “battle ahead”.

                                  

entry from another member’s journal

Following up on yesterday’s a New American Gothic entry I wanted to share a recent entry from another AOL journal:  

 

talking about my MS  

 

“…We do not become sudden lepers who need to live on the outskirts of town.  We do not want to be untouchable. … “ , says so much – please take the time to read and think.

 

TO CARE, I look at in this journal from the caregiver perspective. Patti can no longer take care of herself. Christina’s entry about her feelings and MS is a rare insight.

 

‘On our patio’ as a caregiving pair our feelings are really no different. MS progression has simply robbed Patti of ability to hold or retain those feelings or memories. As the caregiver I do have to choose to stir the cauldron and remind  Patti of the injustice or create as safe and enjoyable family time together as possible. It's always kind of weird.

a new American Gothic

Over two decades I’ve learned that some things you give up. Some things you modify, such as artificial flower gardens have become one of this caregiver’s favorites. Some things you develop. Caregiving has anchored me to a smaller piece of the world, and since Patti  consistently sees less, I’ve taken to altering that view to entertain myself. I guess as long as it doesn’t resemble the Mad Hatter’s Tea Party too much, I’m on the safer side of sane. <grin>

 

These pictures are from Sunday afternoon “on our patio”. Not your normal Sunday with Biff and Buffy, but then again 20 years of living with MS is more about survival than hospitality. (You’ll notice all the friends, family, and neighbors in the background <grin>)

 

Progression and symptoms play a MAJOR role in “teach us to care and not to care”. When the person in need reaches level of MS symptoms such as total bowel incontinence or increasing potential for spontaneous projectile vomiting, BELIEVE ME the background of home pictures will be usually empty.

 

I don’t have a formula but there is a relationship between TO CARE and TO SACRIFICE. And that is big problem with fading CARE in society and both our culture and pop culture. Believe me I do not want to risk being judgmental because I do not know how I would be if fate had dealt a different hand.

 

“I can't go back to yesterday, because I was a different person then.”

Lewis Carroll

 

“On our patio” is one of those ongoing ‘adjustments in disguise’. Worse case scenario, accidents are easier to clean up. On the other hand, Patti’s eye hand coordination and use of her left arm and hand have declined to a point where it would be easier on housecleaning to feed her. Yet she loves tacos and she is an adult hanging on to strings of (dignity?) maybe, and wants to feed herself. Eating outdoors eliminates the problem of making a mess and cleanup. Just brush her off – the critters of the night have it all cleaned up by morning, and they ENJOY the job. <grin>

Sauntering along the tracks into town or watching a storm front pass over the house at sunset – these are word mines for poets.

 

     As for me, I’ll just have to share these pictures in an attempt to capture …

 

     Caregiving also needs time to be alone, to think, to refocus, to remember how to dream.

the MAN PURSE

Caring as it evolves into caregiving necessitates that you learn some skills. ORGANIZATION probably is the number 1 category.

 

As a 'guy' this became a practical problem because there are limits to what pockets can hold. Yes! The need for a MAN PURSE began.

 

Patti quickly went to a wheelchair, and before that she simply chose to struggle clutching to whatever was convenient. In other words she could not hold a purse. Was it appropriate for me to carry a woman’s purse? (Yes for a few moments but only for a brief few moments. – In excess was bordering on cross dressing.) Plus I found myself needing to put caregiving stuff in her purse. While that kind of made it unisex – it still looked like a woman’s purse.

 

Accepting my role as caregiver may have been an easier emotional adjustment than realizing I had to start carrying a purse from a guy's perspective.

 

I bought my first MAN PURSE almost 15 years ago before the phrase was even main stream pop culture. Eagle Creek made something that resembled a camping briefcase. Most importantly it was MANLY in appearance and functional.

 

Caregiving certainly challenged the Eagle Creek “guarantee for life” as Patti somehow managed to roll over and kill it twice with her scooter. Patti during her scooter era was the reincarnation of a tank commander. Yet, how could Eagle Creek refuse an accident involving a disabled American? Though I thought they were a bit testy the second time.

 

Alas! One of our cats chose to take revenge on the MAN PURSE and it lies now in a land fill. Following a short vacation, during which the cats had been at the kennel and the MAN PURSE had been with us, obviously words must have been exchanged and the cat became upset. The MAN PURSE suffered through its last weekend in our home as a litter box.   

 

Regrettably Eagle Creek just would not consider this one covered under the “guarantee for life”. Even though I argued it could have been a Bob Cat or a Cougar while I was camping, apparently felines urinating into 15 yr old Eagle Creek MAN PURSE is not covered. … Caveat Emptor!

 

Sigh … after 15 years I had to shop for a new MAN PURSE. This time the problem was TOO MANY choices. The world had changed.

 

What makes a MAN PURSE different than a PURSE, you ask?  Nothing - not anymore. Marketing of ‘Messenger Bags’ has created a unisex functional class of carry all bags designed to be carried across the body, hands free vs a shoulder bag. Of course, there are still fashion type accessory bags for women (and now also for men).

 

I chose this particular model by Timbuk2 because its vertical configuration was unique yet still enables me to carry any folder or file for Patti’s appointments. Expandable it can carry multiple files or a three ring binder of records or a book for reading while I’m waiting, plus regular spare Depends, and package of wipes. – Or simply dump all that out and collapse it down to personal necessities. The personal organizer compartment holds pens, pencils, notebooks, address book, calendar, Cluster Headache meds, Swiss Army knife; The cell phone holster is attached to the strap for easy access. Best of all, the exterior pocket allows me to instantly grab those reading glasses without having to open my MAN PURSE to look at price tags, menus, etc and further delay the bifocal era. (True - vanity is not a necessity. <grin>)

 

While I had preferred some different color configurations my daughter vetoed them as I am too old and not that cool. <grin>

 

Women as caregivers do not have to work through this gender issue. Many guys cheat for years, handing increasing stuff to their wives, dates, and female companions to hold in their purses. Cell phones, digital cameras, glasses, MP3 players, etc our world increasingly gains STUFF. Caregiving throws that equation off balance.

 

Once caregiving progresses to the ‘hands free’ level an organizational bag is mandatory. A MAN PURSE could be in the future of more men than realize.

Please COUGH!

To me part of TO CARE is that you MUST carve out time for both of you. (This seems to tie into the 'new theme' of exploring T S Eliot's "Teach us to care and not to care.")

 

Convenience and spontaneity are functions more suited to the able bodied world. You just have to block out time, prepare and adapt.

 

It will NEVER be easy and most likely challenging in spite of your best plans. The world is not really accessible but then again it is not exactly inaccessible either.

 

Since transition to a care facility I worry that Patti would feel the absence of family all the more on Sunday with a building full of visitors because most residents only get visits once a week. Patti on the other hand has visitors, outings, and visits home throughout the week however her MS related memory problems impair that recall.

 

Yesterday, Sunday, Patti and I took a leisurely roll through the park to the movies to watch Steven Spielberg’s “War Of The World’s” (with buttered popcorn, Twizzlers, and soda, of course), desert at Dairy Queen, and a bit of a Blue Grass music concert in the park on the roll back.  

I’ve always enjoyed the original book by H G Wells (and all the many adaptations) – what an ‘off the wall’ message that our germs and diseases are our best defense against the evil aliens. …. please make sure to go outside and cough before you go to bed so we all can sleep safer. <GRIN>

one small step

Anniversaries mark time. Yesterday, Wednesday was plentiful.

 

36 years ago, on July 20th, 1969, I sat mesmerized in front of a TV with my parents and remember vividly the words crackling through space in the late afternoon, "The Eagle Has Landed!"

 

Through our own yells we could hear cheers from neighbors. People erupted outside to be together in pride and just talk.  Darkness could not come soon enough. People wanted to SEE the moon with their eyes. It was summer in Maryland it would be hours till sunset and the WALK! … (In retrospect, how convenient of NASA to wait until the moon was out! <grin> Of course that was a fluke of our specific geography.)

 

20 years ago, on July 20th, 1985, Patti and I were married. (Which also means I had to update “about me” in this journal <grin>) Patti’s “probable MS” diagnosis preceded marriage by a year. Until I checked the date on license I didn’t realize the benchmark. MS and living with MS has a way of dominating everything.

 

It was an eclectic outdoor ceremony and reception. More picnic than formal, it was fun. “Probable MS” symptoms had disappeared and we were young and immortal. Patti had defeated the disease, we were sure. Life was going to be magnificent!

 

Patti had curiously insisted on modifying wedding vows to specifically leave out “to have and to hold, in sickness and in health, until death do us part”. I felt the 'probable MS' thing had just caused her to think too much about the dark side. … 20 years later you can see how much I pay attention.

 

1 year ago, Patti’s Long Term Disability medical insurance policy was “interrupted” as her former employer was centralizing all LTD policies into one national office. This day of infamy began a snowball of medical insurance and medical billing debacles that currently fill three 3” binders (yes, 9” of processed paperwork) and I am looking at 4” of folders still active. Patti’s MS symptoms prevent her from participating at all in this mess. I long ago gave up calculating how many hours I have spent. It remains close to a second full time job a week.

 

If I did not stay with them step by step and appeal everything in writing within the brief windows of time allowed then tens and tens of thousands of dollars possibly even hundreds of thousands of dollars could go into collection. When in reality Patti owes nothing.

 

Either they are collectively insane or there is a collective malevolence. It is no surprise to me that the majority of bankruptcies filed in the US claiming medical bills are from people who “have” or “had” medical insurance. <grin>

 

YESTERDAY – So what did we do to celebrate?

     Megan and I picked Patti up for an afternoon matinee of “Charlie and the Chocolate Factory”. Movies remain one of Patti’s favorite activities as she can SEE 30 foot images. She totally enjoyed the film.

     Afterwards we came home for Applebee’s carryout and some simple quiet time enjoying a summer evening on the patio chatting and reminiscing about so many other July 20th summer evenings!

 

No problems, no hassles – it doesn’t get better than that.

 

Patti couldn’t stay awake long enough for the moon to come out before she wanted to go to bed.

 

Glancing up at the bright summer moon later in the night my mind raced through the 36 years since I heard "That's one small step for a man, one giant leap for mankind."

to care and not to care

“Teach us to care and not to care…” T. S. Eliot

 

I would never presume to teach. However, with nearly two decades as a spouse caregiver hopefully I can squeak by with  ‘share’.

 

Taking a detour from this journal’s original focus, I will try for awhile to share my philosophy or at least ‘thoughts in general’ about caregiving.

 

The T-Ball story posted previously has motivated me.. I’m 54; the coach is half my age at 27 the kids influenced are 8 yrs old. … I believe, in general, the essence to care is fading. Or maybe the environment to CARE is out of whack. Certainly something is broken.

 

I coached a season of T-Ball. It was more than memorable, it was magical. Kids just learning the game bring to baseball the element of genuine unpredictable fun.

 

Believe it or not, I never coached another season. While the "Pink Panthers" were a blast, the parents were another story. It took too much restraint during games to avoid taking a bat and bludgeoning half of them. I suspected this might traumatize their children. It was definitely affecting my ability to CARE.

 

We cannot legislate nor enforce CARE. You cannot beat your chest and exclaim “I care the most!” CARE has to cease to be a just a song lyric, or exploited during a political campaign, or only a topic for a Sunday sermon. It isn’t always about the “homeless” or “needy”. If a minivan cuts you off in traffic on a bad day and your car was equipped with heat seeking missiles you know you would send one up their tailpipe and vaporize that van with no thought about passengers. CARE is fading.

 

The way a child is taught to CARE, or more importantly sees how others CARE, becomes the foundation for future caregiving and so much more. People, families, neighborhoods and groups have to begin to do a better job of learning and teaching to care and not to care. Caregiving is however what this journal is about so I will try to avoid digressing. Now back to the specific extension of CARE that becomes caregiving.

 

Of course, it is all so easy to talk about versus the actual doing. Each caregiving situation is frustratingly personal. Each ‘person in need’ has unique levels of disability and symptoms and a course of progression then you have to consider each caregivers individual resources from physical health and strength to economics and home environment.

 

Random variables like these could drive a mathematician bonkers looking for a formula. It’s overwhelming, it’s only logical to “run for the hills.” You cannot commence with your logical mind.

 

Call it the heart or the soul or whatever. Caregiving is a path chosen and a journey that unfolds …  

                .....................................................................................................

... stopping by to pick Patti up for an evening at home Tuesday afternoon I found her in bed.

 

She claimed she didn’t want to go anywhere she just wanted to nap, she felt like crap. So I decided to just visit a bit and sit while she slept. We chatted a bit before she dozed off.

 

A couple minutes later she pops up like Linda Blair in the Exorcist and projectile vomits in an excellent 4 ft spray pattern. Best of all somehow missing me! <grin> Impressive!

 

Since Patti had fallen recently trying to get out of bed she was hooked up to a bed alarm that goes off if she makes a sudden movement with a high decidable whooping alarm. I was unfamiliar with it and could not turn the damn thing off. So I do a typical manly man thing and rip the alarm off the bed. It still won’t go off! Noticing it is also attached to her shirt I try to disconnect it there. I’m equally unsuccessful with the latch so I again do the male thing and rip. With a tear it comes off along with a piece of her shirt. But the damn alarm is still going off!!!!

 

Now I am holding an extremely annoying alarm and a chain with a chunk of Patti’s shirt hanging from it.

 

Patti is sitting up in a bed, along with wall, and floor sprayed in vomit. She looks at me and exclaims, “You ripped my shirt!”

 

With vomit everywhere and the alarm from hell wailing in my hands, Patti's remark struck us both so funny we both just started laughing and laughing and couldn't stop.

 

Finally, two staff members come rushing in panting to respond to the alarm. They look at us like we have lost our minds.

 

CARE was certainly tested as it was also dinner time at her facility and needless to say all the staff was busy taking residents to the dinning rooms or working in the assisted dining room. Either Patti could lie there for a bit till someone got a chance or you can guess who got to roll up his sleeves and refresh his home caregiving skills. <grin>

Coach Allegedly Paid Player to Hit Disabled Teammate

Tucked away in the AOL Sports section I found this story:

 

Coach Allegedly Paid Player to Hit Disabled Teammate

Man Accused of Having Boy Hurt So He Wouldn't Have to Play Him

 

PITTSBURGH (July 16) - A T-ball coach allegedly paid one of his players $25 to hurt an 8-year-old mentally disabled teammate so he wouldn't have to put the boy in the game, police said Friday….

 

(click on blue hyperlink headline for full story)

Cluster Headaches

A phantom jabs the hot corkscrew into my eye and ever so viciously twists. I could be sleeping, or walking, or driving it doesn’t matter. The attack is always without warning and usually debilitating.

 

Over 20 minutes to an hour the blitz builds to pain levels where if there is a god I loose consciousness, mostly there is no god just writhing pain.

 

In the calm that follows the ebb of an attack I clutch together the pieces of my sanity.

 

Such is a day in my life with Cluster Headaches. The next mugging could be in minutes or the next hour or the next day or the next week. During the worst of episodes I’ll get a handful of attacks in a day. Until recently I was blessed with 15 months of freedom from Cluster Headaches. For whatever reason the gates of hell have reopened over the last week.

 

My Cluster Headaches and Patti’s MS have a shared historical timetable. Perhaps the mega-stress related aspects of caregiving may have played some trigger aspect? Medical science offers no answers. Everything except the proverbial kitchen sink has been thrown at the Cluster Headaches.

 

All that really can be done is to pick myself back up following each attack. Some days it feels like from the brink of madness. And in all honesty sometimes I move forward with a touch of shell shocked apprehension in my step.

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(Picture copied from clusterheadaches.com and link to Bob Pahlow's Cluster Headache Picture Page.)

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JOURNAL OVERVIEW  NOTE:

     Trying to share what living with MS is like from the caregiver spouse point of view.. Patti (49), my wife, has been diagnosed with MS for 19 years.

     In Journal Archives, WHY SHARE? (4/27/04) through YEAR IN SUMMARY: Part 5 of 5, Was It Worth It? (3/18/05<) chronicles our transitional year from home caregiving to the care facility era.              

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Jubilee Day 2005

Living with MS as family requires creativity. If you wake up and discover that nature has turned a June day into an April morning - try to seize the moment.

 

Our town hosts what is billed as the largest one-day street fair in the eastern part of the United States. The media estimated as many as 60,000 people attend Jubilee Day® annually.

 

With temperatures in the low 70’s, no humidity and a beautiful steady breeze the weather was a “Spring” morning instead of the traditional June hot and humid 90+ degree day. For the first time ever we could actually try to take Patti to this local lollapalooza.

 

As an omen, we even found an accessible parking space one block from the street fair upon arriving.

 

Patti is not a morning person but quickly tuned into everything going on around her rather than become overwhelmed. Street vendors add an element of fun to shopping long ago lost in malls and stores. And there is nothing that can rival the blocks and blocks of smells of food of every imaginable type cooking and mixing in the morning breeze.

 

Entertainment is abundant but not as appealing to Patti’s MS affected attention span. The “next” booth or the “next” block was more interesting to her to want to explore.

 

By visiting at the opening the crowds were not at their peak and being in a wheelchair did not leave her lost in a forest of walking people. It was pleasantly crowded.

 

Patti’s mood built to a peak and then the reality of MS began to take its toll as she slowly faded. This was anticipated and after grazing through a street food lunch of a little of this and some of that we departed.

 

All in all (and with the help of Megan and myself) she partied in the streets for 3 hrs on a magnificent Spring morning in June and then was eager for one of her favorite activities, an afternoon nap. <grin> It was fun for us all and particularly nice to put another notch in the success column.

define and guard your own Thermopylae or Alamo

Something unique will sustain each caregiver. I must stress this because I‘ve found no formula for success through nearly two decades.

 

I couldn’t help but notice and feel honored by the kind comments to the previous post. However I must express caution to any reader.

 

“Love” I do not believe is enough. Maybe I just avoid the word as a manly-man but I think emotions are too unstable for a foundation. I can hear Tina Turner’s scorching lyrics, “What’s love got to do with it … “

 

I always caution looking at the picture from how you feel about the person in need. Progression will change that person, especially in cerebral functions. Caregiving will change the dynamics of the relationship.

 

Caregiving can be more often like trench warfare. It is often too difficult to even see a higher purpose or meaning.

 

It’s only natural to wonder if some one can make it or be depended on. I believe the answer is more in the character of the person.

 

Not everyone is capable of a Stoic indifference to his or her own existence.

 

In a sense, you define and guard your own Thermopylae or Alamo, a stand that cannot be won. Except unlike heroic moments in time, caregiving is just trying to get through the day, day after day, knowing that the future holds only progression. 

 

Even more difficult is eventually knowing your limitations. The safety and well being of the person in need can be muddled by caregiver pride and or hobgoblins of 24/7 care. Help must be a door left open not closed.

 

Every story will write itself differently. Our story was focused on raising a daughter and trying to keep a family together. MS made Patti a dependent in that story 15 and a half years ago and progressively ravaged her abilities physically and mentally.

 

For example that focus must shift with our daughter finishing junior year in high school, Patti is lost in all the college search and application mumbo jumbo. The caregiver hat needs to shift to parenting.

 

Every caregiving situation is unique.  ...  I applaud every caregiver who tries!

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JOURNAL OVERVIEW  NOTE:

     Trying to share what living with MS is like from the caregiver spouse point of view.. Patti (49), my wife, has been diagnosed with MS for 19 years.

     In Journal Archives, WHY SHARE? (4/27/04) through YEAR IN SUMMARY: Part 5 of 5, Was It Worth It? (3/18/05<) chronicles our transitional year from home caregiving to the care facility era.              

---------------------------------------------------------

JOURNAL OVERVIEW  NOTE:

     Trying to share what living with MS is like from the caregiver spouse point of view.. Patti (49), my wife, has been diagnosed with MS for 19 years.

     In Journal Archives, WHY SHARE? (4/27/04) through YEAR IN SUMMARY: Part 5 of 5, Was It Worth It? (3/18/05<) chronicles our transitional year from home caregiving to the care facility era. 

                                ---------------------------------------------------------

maintaining involvement in family life

Maintaining involvement in family life is an appropriate entry, I believe, to talk about in this post transition year.

 

Yesterday was an opportunity to include Patti in a family dinner. Sounds simple? … 4 and a half hours later that ‘simple’ task was wrapped up. <grin>

 

60% of that time was devoted to logistics including transportation, getting Patti up and dressed, changing Depends, transferring, cutting up food, etc.  I didn’t carry a stop watch but did make use of a pocket note pad.  --  Patti’s care facility is only 18 miles away, so two round trips involves 72 miles of driving out of this percentage of logistical support time.

 

Any visit home has parameters from all involved. Patti’s desire to go to bed by 7:30 PM may as well be written in stone and on the front end Megan has to get home from school and I need to juggle time and work in the late afternoon.

 

In the post home caregiving era we get out of sync with the total and absolute commitment that must be made when Patti is at home. We can juggle nothing else such as a typical daily activity like mowing the lawn, run an errand, homework etc. … And Patti after a year in a care facility is accustomed to constant and fresh staff attending to her and her needs and wants.  …  These “different worlds’ we’ve all become used to living in can take some adjustment when we are back together. Instant adaptation is more challenging for Patti who as a result of MS progression is easily confused and frustrated.

 

Maintaining involvement at home is a gamble. I roll the dice because I believe it is good for everyone and I hope they don’t roll up showing craps.

 

Putting Patti to bed less than 30 minutes after she left home, she could not tell me ‘what’ she had for dinner, nor ‘where’ she ate dinner, nor ‘who’ she ate dinner with. MS has destroyed her short term memory. I can only hope that in the morning that her evening of family time has slipped deeper into longer term memory and she may remember.

transfer to vehicle

Until recently transferring in and out of a car has been a blessed enigma to Patti’s MS progression. That quirk has enabled her with opportunity.

 

Sadly over the last several months her ability has been fading. Increasingly attempting to transfer to and from a wheelchair and a passenger car places both herself and anyone helping her at risk.

 

Unlike a bedroom or a shower no Hoyer sling lift, or Posey belt, nor are multiple attendants of much help in the confined space and limited opening of a car door.

 

Loss of this talent for transferring dramatically changes Patti’s access to houses of family, friends, and the outside world of restaurants, movies, and more.

 

Tuesday I spent nearly an hour unsuccessfully working with Patti, and her physical therapist trying to safely transfer Patti to and from her wheelchair and our family car. We tried transfer boards and Posey belts. We tried front vs back seats, and left and right sides of car.  We exhausted all logical ideas and devoted time to thinking outside the proverbial box.

 

For months I’ve wanted to blame anything except progression. However, every symptom and issue has been systematically isolated and treated. Accepting progression is more difficult from the outside looking in. In reality Patti is unable to participate in any other transfer such as to bed or shower chair, etc.  It really was amazing that her ability to transfer to a car remained as long as it did. (In fact she still can somewhat transfer ‘out of’ the car to the wheelchair – just not ‘into’ the car. MS is always strange in its manifestations).

 

Whatever, the bottom line is for the consistency of Patti’s safety and the safety of any one attending her we must enter a new transportation era if Patti is to be able to dependably experience the freedom of opportunity.

 

This of course may seem odd that we do not already own a vehicle with a lift or ramp. However neither house we’ve owned has ever had a ramp or “visible” ramp. In the past Patti never wanted such things. She “could” transfer therefore she “would” transfer. In days of long ago, she 'fought' progression however she could even if irrational.

 

Until I figure out something involving a wheelchair accessible vehicle at least I have the physical strength and “can” still lend her a hand and wrestle her in to our car and the opportunity for adventure.

 

There's an appropriate line from a poem by Robert Burns, borrowed from a song of the dawn of time in the Scottish Highlands: (today butchered by drunks on New Year's Eve as Auld Lang Syne <grin>)

 

“… And there's a hand my trusty friend!

And give me a hand of thine! …

For days of long ago.”

Drifting

Basically the past year of transition has been followed by a year beginning with a sense of drifting. Home caregiving was an anchor in many ways.

 

Maybe for no reason except that I labeled it a “transitional year” the past 12 months had a focus. Yet home caregiving was intertwined with daily existence for so long its removal leaves behind a maze.

 

Now I find myself doing something and wondering why am I doing it that way? So many little and big details of daily living and planning evolved to accommodate home caregiving. Past the transition is uncharted water.

 

Recently three topics have kept my attention:

 

RETURNING TO HOMECARE??

Over the last month or so I’ve raised this thought of the possibility of Patti returning to homecare with facility staff, and Patti’s doctors. They stare at me as if I might need admittance to a mental facility.

 

I’m always directed back to the universal medical opinions of Patti doctors, neurologists,and visiting homecare professionals that Patti should have been in a 24/7 care facility a couple years before I ever raised the white flag on homecare.

 

What I see that is positive in both Patti’s quality of life now and that I even have time in my life to think about it - is BECAUSE Patti is in 24/7 professional care.

 

COGNITIVE REHABILITATION

Even the NMSS labels the success of such programs for MS as “mixed results”.  And ‘mixed results’ is not the kind of endorsement medical insurance invests thousands of dollars into for rehabilitation for a progressive problem. Optimally such rehabilitation is designed following a brain injury rather than a progressive disease. Patti’s neurologist and doctor were not optimistic.

 

So like many times before I create what I can. Learning whatever is available and customizing that for Patti. Bocce was a prime example of an experiment in home made cognitive rehab.  

 

WHAT IF?

Preliminary Results Are in for 16-Year Follow-Up of Betaseron Study

"To date, patients … in the pivotal trial are more likely to report continued ability to walk …”  “the mortality trend among patients in the placebo arm appearing to be threefold different than that of patients receiving Betaseron," The full report will include data on functions such as memory, attention, and reasoning, …"

This will always be a sore topic for me. Patti’s neurologist fought nobly and desperately to have her included in those original “pivotal” Betaseron trials. 

 

Berlex the drug manufacturer rejected her from the trials. They wanted people with the mildest and least noticeable MS symptoms in those original trials. They were stacking the deck for approval. Too much was at stake. Those original trials were as much about money as about MS. 

 

Once the drug was approved Patti got a letter from Berlex assigning her a lottery number and informing her how wonderfully Betaseron could help her slow progression. (Even though they had rejected her earlier when she was even less progressed.) The cruel twist of fate wasn’t done. Our medical insurance would not approve Betaseron because Patti had been rejected by Berlex for the Betaseron trials and that remained in her records.

 

Yes I know this is negative energy, I should instead be happy for those people Betaseron has helped.

Bocce

Finding a game to play with Patti is a puzzle in itself. Visual and physical impairments are compounded with intellectual symptoms of attention span, memory, and cognitive challenges.

 

You can intermittently include her in a game you are playing with others. You can play a game for her. The challenge is to play WITH her in a game she can participate in fairly

 

This past Fall at the Pennsylvania Renaissance Festival I watched some characters playing Bocce. Some roving Italian ‘character’ noticing my interest and listening to my explanation for why he explained to me ‘in character’ that his friends Galileo and da Vinci claimed that playing Bocce “rejuvenates the body and mind”.

 

Some things take a while to start <grin>. Yesterday, it was 84 degrees in April so why not try Bocce?

 

The game of Open Bocce is adaptable to any environment. It’s kind of a mix of bowling, pool, and Croquet. What intrigued me about it for Patti is that she throws out the target ball (pallino). Any other outdoor game she has to be moved to some ‘handicapped’ distance from a fixed target. With Open Bocce no visible handicapping is needed. Everyone else has to ‘adapt’ to her target.

 

How did the experiment work? It was unquestionably “rejuvenating”! I had to finally call a stop to the evening or Patti would still be playing. <grin> It was great to finally see her fully participating in and enjoying a game on her own. Winning straight out was an unexpected thrill for her.

 

By her throwing out the pallino she basically sets her optimum range and angle of throw. Because of MS vision it may not always be straight, and it may change. We made a minor modification by making the able-bodied people sit down to throw with their weak side hand which is more difficult than you can imagine. Competing against someone who lives in a chair and has been living with MS for 19 years, you quickly discover that as an able bodied person you are in trouble. <grin>

 

The great thing is all you need is a patch of ground and a bag of Bocce balls.

wondering about the causality of the paths we all travel

It is bizarre how one spontaneous event in time can seem to pull back a veil on another time and place and leave me wondering about the causality of the paths we all traveled to get here. It probably would be fascinating to sit and ponder the Metaphysics of it all if I had the time.

The following note is just one of those special moments triggered by Patti’s sudden decision to want to be in the MS Walk this past Sunday. Without that decision this past time and place would not have been shared. It is a special MS story and was accompanied by an extraordinary donation.

……………………………..

Dear Patrick,

In 1982 when I ran the Boston Marathon. I had worked so hard to qualify--and that is a whole nother story. Anyway, that year the MS society asked runners to run for them, so I worked for sponsors. I badgered everyone that I knew into sponsoring me--and you know I can be persistent when I want to.

I was taking care of a 23 year old, who had an incredibly bad case of MS. She had nystagmus, was nearly blind, and was highly verbal, so she could help me try to understand how it was for a young woman to be caught in her body. For example, once she talked about trying to date another disabled person (her friends thought she should be 'fixed up'--and how she would never do that again)--she said, "We were just too helpless".

She had long dark hair, and also was a poet. I cannot describe how cool/creepy it was to have her recite her poetry by memory while she looked at you with her nearly sightless eyes that quivered.

I was so taken with her that I tried to write an article for publication that included her poetry. I sent it around to many places--but now I am more aware that it was poorly referenced etc., and it was never published.

Anyway, that year, when I ran Boston, which may have been the high point of my life, I earned around $600 for MS. I will be walking/running with you in spirit as you push Patti along--I am tearful when I think of teenage Megan and Patti's elderly parents marching along.

Tell Patti: You go girl!

PATTI MS IXX / MS Walk

The “MS Walk” is probably the public event most associated with Multiple Sclerosis. Believe it or not, in 19 years of living with MS Patti has never participated in an MS Walk

 

For reasons only Patti understands, early in the week, Patti got it into her head that she wanted to be a part of this year's walk held yesterday.

 

With no more than a couple days notice I emailed friends and family of Patti’s wish. We extended an invitation to join a team and I asked people if they could kick in $5 or $10 bucks so Patti could end up with an MS Walk t-shirt out of the adventure if she raised $100.

 

I am still humbled by the response. In just days, our team of zero grew to 10 and donations have been overwhelming. Patti could end up with an NMSS wardrobe <grin>. I will label Patti’s MS Walk sweatshirt with the names of her team and supporters in indelible ink.

 

Multiple Sclerosis has been the major obstacle to participation.  The MS Walk is not a common forum for those with MS. For example, I did not see anyone else in a wheelchair or even noticeably effected by symptoms of MS.

 

Something was ‘in the air’ both Sunday and in the days leading up to Sunday. Living with MS isn’t usually associated with such an upbeat memory. Family and friends ARE medicine!

I am genuinely at a loss to capture my feelings about what happened this week. It’s still overwhelming the support of family and friends. I just find myself mumbling that "I’m humbled."

 

Asking Patti Sunday evening if she had any words of wisdom after the MS Walk and 19 years with MS  … “MS is a miserable disease. MS still sucks. Tell everybody 'Thank You' I had a great day and I just want to go to bed!”

catharsis

MS unpredictability still amazes me after all these years. A week ago Patti napped for 4 out of 6 hours of a visit. Yesterday she could have been the Energizer Rabbit going for over 8 hours and never considering a nap.

 

Anchoring the day we attended a matinee performance of “West Side Story” at our daughter’s high school. Performing arts are challenging for Patti to see unlike the mega screens of the film arts. However Megan’s high school productions are more off-Broadway in spirit. Action is designed to spill into the seating creating an opportuity for Patti.

 

The able bodied avoid wing seats because they are not center view. The angle of view doesn’t matter at all to Patti proximity is the only issue. When action does spill into the audience it will come off stage right and left; therefore wing seating will be nearly interactive.

 

Outside of the unforgettable Leonard Bernstein and Stephen Sondheim music, Patti’s MS symptom of visual impairment restricts her to the blur of colored lighting when the production was on stage only. Fortunately, most of the big numbers involved action both on and off stage. It was fun to watch her stare, slowly process what was happening, and erupt in mega smiles as Sharks and Jets rolled around the floor fighting at her feet and beside her chair, even tucking her feet under to avoid taking sides <grin>. I had transferred Patti into the stage right, front row, aisle seat and as the stage right aisle was an alternate exit and entrance she had cast around her her for much of the play, ending with Officer Krupke looming directly over her for closing curtain bows.

 

Accessibility is more than the little blue and white logo. “Living with MS” we have learned to know what probably will work and try to create the best of possible situations. Broadway is not going to work for Patti. Amateur productions are more ‘user friendly’.

 

Theatre is about catharsis. We all need it. Was it a catalyst in her extraordinarily successful day? Who knows? All that is known is that the hours, days, and weeks of hard work and effort by the cast and crew of this one production of "West Side Story" enabled one person to escape Multiple Sclerosis for a few hours one Sunday afternoon. That is priceless.