‘Living with MS’ has a hidden alchemy

“Back to School” is one of those memory stops on a family’s timeline. Keeping Patti involved in our lives is always a capricious tempting of fate. As our daughter begins her senior year of high school, it seemed worth an attempt.

 

‘Living with MS’ has a hidden alchemy, any outing can become an odyssey. Thursday was 11th hour “back to school” clothes shopping. Of course, at this age all we really get to do is pay. <grin> So all the more it seemed a fairly safe opportunity for family time. MS had other plans. “Loopy” is the best scientific description I can offer. Mental confusion was abnormally high for Patti, this in turn complicated everything. Transferring approached bizarre when Patti’s concern with falling caused her to refuse to even try to exit the car at the mall.

 

Sunday had all the tangible and intangible indicators of a good day for some family time at home to close out the summer. Again MS flared and overwhelmed the day. Not one, not two, but three “accidents” resulting in changes of Depends, clothing, and associated clean up knocked out family plans and dinner. Thank goodness I have maintained home caregiving supplies and changes of clothing.

 

Frustration becomes my invisible friend ‘reviewing’ the decisions involved. As the carer / caregiver I was the catalyst. Ignoring the opportunity and moment was an option. However, I firmly believe you have to keep trying to move out of the shadows.  Not all well intended plans succeed. MS is a formidable foe. An undefeated record is an invention of the games people play  - not caregiving.

TO CARE and the "skills" to care

TO CARE and the "skills" to care can be a significant gap. It does seem resources are becoming more available.

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A brochure from a local community college arrived in the mail advertising courses on ‘Medical Terminology’, and ‘Intro to Medical Insurance’ for a medical insurance billing technician program.  In consideration of both the uncountable number of hours over the years and the percentage of hours in any given week devoted to medical insurance related paperwork, courses like these could be a prudent investment for a caregiver.

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Over the weekend I received a brochure from our local MS chapter, Planning Today For Our Tomorrow “… Remaining optimistic about the future is important. It is also helpful to take a clear look at your income, assets, debts, benefits, and other resources. We are pleased to offer this program for people with MS, family members, caregivers, and significant others … concerning long term care options….”  Advertised discussions include Medicaid, legal issues, estate planning, power of attorney, and estate administration process.

 

WOW! Just a little over two years ago a phone call to this same local chapter inquiring about some legal questions and financial planning for long term care yielded nothing, not even the vaguest of suggestions. (No! Let me correct that, after being forwarded to multiple people within the chapter office and time spent ‘on hold’, the consensus was I could try the ‘yellow pages’. <grin>)

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This journal began in part to share our experiences in that journey into the unknown.

 

Seize short cuts for knowledge whenever available. The School of Hard Knocks is a slow teacher.

 

In the dawn of our situation I was overwhelmed and lost. Nearly two decades ago resources were not what they are today. We didn’t even own a home PC. <grin>

the care facility era is not “drop and run”

The care facility era still requires caregiver time above and beyond quality time. Maybe it should be labeled advocacy time? These are examples just from the last few days.

 

One afternoon I dropped in on lunch. Patti eats in an assisted dinning room. She needs to be monitored when eating. Her level of MS presents many challenges to eating; choking is a very real threat.

 

When visiting home recently she has been struggling with meals and I wanted to compare. I also like to randomly check out different aspects of daily care. As a veteran home caregiver observing an assisted dinning room is like watching choreography as the staff team efficiently, safely, and with kindness assists the residents with eating. There is no cookie cutter plan each resident has a specific program. The dinning room ratio breaks down to 3 to 1 for each staff member. Aides and volunteers improve the ratio even more at any given table.

 

Later in the afternoon I received a call from the nursing staff informing me Patti’s doctor had ordered a new round of therapy related to re-evaluating and improving her eating and swallowing.  … Hanging up I did wonder if my visit was a catalyst or coincidence in the timing of new therapy.

 

Another time I had to stop in to meet with maintenance department to discuss and “get approved” some shelves Patti’s father had built and wanted to put up in her room. Furniture and modifications usually require ‘approval’ for a variety of reasons, some which makes sense to me and some which may not appear to make sense. However with so many regulatory and oversight agencies involved it is best to play by the book.

 

Friday I picked up and delivered a dresser to Patti’s room. Over time “stuff” quickly accumulates just like at home. A bedroom is a bedroom no matter where it is. <grin> Furniture always needs tinkering with. Patti is unable to deal with such things herself and housekeeping staff is primarily focused on keeping rooms clean and straightened up. Over a year Patti’s ‘stuff’ simply outgrew existing furniture.

 

Then there is paperwork. Looking at my day planner for the past week, (if I were a “professional” something) I spent 15 “billable” <grin> hours either on the phone, on hold, writing, copying, filing,  etc, and responding to medical insurance related issues.

 

The care facility era is not “drop and run” at least I do not believe it should be.

immunity to ‘brain freeze’?

Visiting with Patti Monday night, we found her lined up in front of the facility’s mega screen TV for an “evening at the movies” program.

 

Patti was certainly content and downright chatty about how she likes old movies like “Sound of Music.”

 

However, my mind just can’t leave the scene alone and starts to run through ‘checks and balances’.

 

Tuesday evening, Patti and I stopped for a Misto shake at a local Rita's. MS related eye and hand coordination problems leaves shakes the best of possible treats for Patti. Again I find myself surrounding her contentment and enjoyment like a sentry.

 

The caregiver mind wrestles with more enemies than the hands will ever find foes. Most frustrating of all, your shield can never protect from the relentless progression of disease.

 

Watching Patti inhale the Misto shake (think fusion of ice cream and Italian ice with bountiful flavor options) I was developing empathy ‘brain freeze’. <grin> Pausing only to gulp air like a swimmer in competition Patti just kept sucking it down while my brain began to writhe in pain.

 

Listening to her slurp every conceivable last drop I wondered if MS progression produces an immunity to ‘brain freeze’. Now there is a grant waiting to be written. <grin>               

something to keep in mind

Sometimes after interacting with staff at Patti’s 24/7 care facility I walk away amazed at the sheer numbers and shifts of fresh people that “replace” what I did as one person on a daily basis, day in – day out, 24 hrs a day, 365 days a year.

 

Their definition of ‘caregiving’ is almost a different word. No spouse/caregiver, no home/caregiver, no home/carer I have ever known has ever used “shift”, or “day off”, or “off duty”, or “team” in conversation.

 

Thinking back I am only now beginning to understand that medical professionals over the years may never have grasped the magnitude of what was involved at home. Their frame of reference is skewed by a ‘professional’ model with fresh shifts, multiple staff, equipment, etc. Because our ‘society’ licenses the professional model their frame of reference is only reinforced.

 

To the medical business, you at home are the 'amateur' caregiver, they on the other hand are 'trained professionals'. There are times these impressions could be significant enough to confuse communication. This is something to keep in mind.

TO CARE? or, TO CONTROL? that is the question …

Patti's MS symptoms impair reasoning and cognitive process. As a CARER you obviously approach an ethical TO CARE or TO CONTROL line when planning and engaged in activities. No easy answers here, it’s just intuitive.

 

Over the last week or so, we’ve had Patti out multiple times for movies, home for dinner, and a cook out at her parents. Patti enjoys getting out. I believe it is good for her to be involved. Some outings she remembers more than others.

 

It is also August in South Central Pennsylvania, which means “hot and humid”. MS does not respond well to such conditions. It often hits Patti like a wall and within minutes she is noticeably affected until cooled down by AC.

 

Throw in MS symptoms of Emotional lability and Pseudobulbar affect which complicate Patti’s ability to respond appropriately and you have a potential formula for disaster.

 

Patti may ‘hear’ this litany of obstacles,appear to think about it, and then excitedly ask “When are we leaving?” <grin> So then the question becomes, TO CARE? or TO CONTROL?

 

In our case simultaneously I'm single parenting a now 17 year old daughter, the reverse is true. <grin> TO CONTROL? or TO CARE? Here I have to learn to let her think for herself. To support her decision making, TO CARE, to relinquish control.

 

Patti ignores (well, actually forgets) her litany of challenges, Megan looks for more challenge. CONTROL would be easier.

 

I'm so confused some days I don't even know who I am! <grin>

 

So what does the picture have to do with anything?. Returning to my van yesterday I was in one of those totally LOST moments when my eyes slapped my brain to focus. I was standing and parked on the number 42! In the science fiction of Douglas Adams, the number 42 is the answer to "Life, the Universe, and Everything!" .... (Random chance of parking? or Omen?)

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 …  

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... 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.              

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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. 

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

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.