Short Story Writing

Sunday Megan received a Scholastic Writing Award for Short Story Writing part of a nationwide project of the Alliance for Young Artists and Writers Inc. hosted by Harrisburg’s newspaper, The Patriot News. 

 

We wanted to include and involve Patti. Patti also wanted to be a part of the day. All in all the day went as well as it could. Patti could share the moment, experience pride, and be a part of the cycle of parenting.

 

Crowds of 'standing' people talking about things she becomes increasingly confused about and of course increasingly cannot remember because the entire event is in failing short term memory takes its toll on Patti. An episode of lability necessitated we wrap up Patti’s involvement and adjourn to the quieter environment of home.

 

Away from crowds the 'grump attack' subsided and the day ended with some quality family time.

 

Parenting has been fundamental to living with MS and significantly affected by the transition to the care facility era. It’s difficult to “know” how any 16 year old feels, much less one which has had our daughter’s experiences. It’s more than difficult to “know” how Patti feels.

It is however not difficult for me to see and “know” that both have faced changes in the past year to a most peculiar mother / daughter relationship because of the rapid progression of Patti’s MS. Megan was 18 months old when Patti had her first and most severe exacerbation that left her so disabled that she could no longer safely hold her daughter. That was intense. Yet, living with MS is about finding a way.

Slipping and sliding

Parenting has always been a primary goal in living with MS. Patti was aware ever increasing MS progression and demands on my time from 24/7 caregiving were also increasingly conflicting with the parenting side of the equation. Even with her cognitive abilities fading Patti knew this could be another benefit of transition to the care facility era.

 

Honoring that spirit Megan and I headed out in the peak of the snow storm for “snow driving” lessons.

 

This was made all the more poignant and urgent as just the week before a fatal accident involving local teenage drivers occurred only blocks from here following only a dusting of snow.

 

Megan slid and skidded and did spins - most of which were not intentional. Somehow we did not hit anything or anyone. Sitting in the shotgun seat, I do believe I aged. By the end of the lesson she was a much better winter driver. Driving around in a 9” snow storm with snow still falling and before the roads were plowed is something I hope she WILL remember. (I know I will <grin>!)

 

You can’t teach experience. However, you can share knowledge. The next winter driving conditions she faces, at least, will not be the ‘first’.

 

MS prevents Patti from offering such direct help with parenting.  MS memory and mental confusion problems can make her seem detached. I know that is not true. From the beginning Patti has always put her daughter first. By creating time, Patti IS helping with parenting. Both Megan and I are fully aware of that.

Doctor's appointments

Doctor's appointments became a significant difference in the transition to a care facility.

 

As a home caregiver, appointments were dependent on me. 

 

In a care facility a physician makes rounds much like in a hospital.

 

Quantity also changed. In home care Patti would see a physician twice a year, unless needed. In a care facility physician’s rounds are monthly, unless needed. 

 

Neurologist visits remain every 6 months and require me for transportation and attendance. It seemed best to keep her current Neurologist as he specializes in MS. A facility based Neurologist who makes rounds could be available however he has never treated a patient with MS.

 

So do I NEED to be involved any more? ,,,

 

MS related cognitive problems impair Patti from directing her own care. In theory, staff and Patti’s file should be able to substitute. However, the flaw is that overall they are not MS oriented and individually it all depends on who is on duty that morning to act as Patti’s advocate.

 

MS requires a perspective unique to each person.  My reading of that file and my own observations are 'consistent' with Patti's medical history.

 

If Patti were able to direct her own care this could be a different story.

 

I DO NOT try to keep up monthly, quarterly at best, unless needed. Transition has brought many logistical changes in his area beneficial to both of us.

 

A caregiver is an invaluable resource, a complete patient history. Most importantly to me, the role of ADVOCATE should not be subordinated no matter how many medical resources surround a person.

Caregiving devours time ...

Spending a day doing some Spring Cleaning (I have given up on Winter); I was reminded that Caregiving is more often than not about the extra homemaking. Housecleaning, laundry, yard and garden, shopping, cooking, household maintenance & repair, vehicle maintenance & repair, paperwork, driving, and so much more – you progressively gain the other person’s share and past roles. You may have to ‘learn’ new skills <grin>, at the least you will loose significant “me” time.

 

Caregiving devours your time much like in an old movie when the characters start stripping the train to feed the engine.

Sunday outing and snow

With Patti’s recent peak in memory and cognition skills we rolled the dice and let her choose her own movie on Sunday. Reading her the options she chose "Constantine" starring Keanu Reeves as a kind of supernatural detective. Patti not only enjoyed herself, she never lost interest. I probably would not have chosen that for her so it was fortunate to include her in planning.

 

MS is however a never ending struggle across many functions. Positives in one area such as recent memory and cognition can lull you into being bushwhacked by problems in other areas with Patti’s level of disability. Fortunately the outing included a stop by her parent’s home which has an accessible shower. Experience has taught me to always be prepared. I always carry a backpack with a change of clothes, Depends, etc. A bowel accident in transit necessitated a shower and change of Depends and clothes.

 

A caregiver’s physical strength and accessible facilities are obvious factors in this simple situation involved in a Sunday outing. Not every friend or family member has the physical strength or is comfortable enough to change and shower Patti. Nor does every one build their plans around proximity to an accessible facility. It is these realities that shrink Patti’s world to the necessity of a care facility.

 

Days like today MS seems cruel when rare positives are matched by one of the more disruptive of symptoms. It fuels the “madness in my soul” that fights this fight.

The GATES

Friday, Megan and I drove over to Central Park to check out “The Gates”. I humbly submit my attached photos to tell the tale, or as described by AOL cityguide

                   Central Park Unfurled

For 16 days in February, Central Park becomes a public art project, as Christo and Jean-Claude's 'The Gates' takes over 23 miles of pathways. Free and open to the public, it's the largest work of art in New York City history.

 

In route home, we visited my cousin and family in Pequannock, NJ for dinner and family time  It’s always nice to touch ‘roots’ no matter how many miles you travel and no matter how much you experience.

 

It was an interesting and stimulating day!

Band of Hope

Lance Armstrong rode “Cause Bracelets” to the top of pop culture and recently in our area NMSS has introduced MS’s own red silicone HOPE wristband in association with Giant Food Pharmacies. I stopped by Thursday evening to visit with Patti and bring her a “MS Band of HOPE” bracelet. Actually a perfect bracelet for Patti because she enjoys wearing jewelry of any type, it can’t snag on anything, can’t break, can be worn all the time, and if lost that’s OK at $1 each I bought a bunch. <grin>  It’s hard to see in the picture but the bracelet on my wrist is emblazoned with the word HOPE and Multiple Sclerosis.

 

It also seemed appropriate since only the day before she had recalled and shared an experience in detail from short term memory without any prompting. Such recall was improbable based on her history of symptoms. An isolated incident? Only time will answer that.

 

Back to the topic of caregiving, this is an interesting article from Caregiver’s Home Companion: (click on title for full article)

Far Too Often, Caregiver Spouses Simply ‘Lose It’

“For some, yelling at a spouse is nothing new in the marriage. In fact, it could be a productive form of communication. However, when the caregiver is the spouse, he or she is more likely to scream at the patient than not. Frustration and anger, in turn, can lead quickly to emotional abuse. …”

Towel bars to grab bars

At the risk of sounding like ‘Hints from Heloise’, towels bars make great transitional pieces to grab bars.

 

You can disguise the first appearance of grab bars by replacing your towel bars with grab bars. Repositioning may be necessary and make sure they are secured on studs. The bathroom may not look much different but has taken a big step toward accessible.

 

Do it at your convenience, before necessary. I can testify that as an able bodied caregiver I personally have never met a grab bar I did not also learn to appreciate.

Care Plan Review

Care Reviews are interesting and helpful as I learn to work within a teamwork structure.

Social

Surprisingly I learned that Patti had ebbed away from involvement in social activities but was beginning to return to participation.

Help with Activities of Daily Living

Her ability or interest to participate in ADL or Activities of Daily Living had also measurably declined. ADLs are the different tasks of everyday life such as dressing, eating, bathing; going to the bathroom … As Patti is incontinent with both bladder and bowels those are measured not in terms of her participation but in her interest or awareness to be changed.

The exception was in eating. This exception was in fact phenomenal, as Patti has demonstrated “learned” behavior resolving her problems with choking and swallowing. There wasn't much optimism for restorative eating therapy it had previously been rejected by insurance.

Now how one aspect could be so successful while every other area has slipped is baffling?

However, it is a reason for optimism that the same methodical and patient approach to therapy can now help with the other aspects of ADL. Programs will be implemented to attempt to reverse this decline in her skills.

Toileting

With spasticity under treatment and accompanied by prescription of Ditropan XL a program to assist Patti in transferring to and from a commode 7X daily before and after every meal and before bed and after awakening will begin. This is the most aggressive program ever attempted to control incontinence, and the first attempt in two years. It could ONLY be affected in a care facility with such abundance in staff.

HOPE

The phenomenal success of restorative eating therapy has allowed for some hopeful thinking. Obviously first the slipping ADLs need to be addressed. Down the road there is a more radical theory of “cognitive therapy” that could enable Patti to work around her memory and mental confusion and essentially learn to re-think. Who knows? Living with MS is always about hope. Now learning to live with teamwork, at least there are more options slowly and steadily.

Interestingly an ”EXPERT OPINION PAPER” from the National Multiple Sclerosis Society does support this expanded role of rehabilitation:

“… course cannot be altered by rehabilitation, a growing body of evidence indicates that improvement in mobility, activities of daily living (ADL), quality of life ...”

SPECIAL DATES FOR VALENTINE'S DAY

This is the kind of story Valentine’s Day should be built around. Click on the headline for the full text:

          SPECIAL DATES for Valentine's Day

February 15, 2005 by Kathleen Doughtery for The Patriot-News

“…Sixteen Messiah College students found dates among a different crowd this year.

     Last night, they escorted 16 residents of Messiah Village, an assisted-living and residential facility for older adults, to an evening of dinner and discussion at The Italian Oven in Mechanicsburg….”

A rose is a rose ... or is it?

From the 2002 Census Report on Marriage and Divorce "… 65% of new marriages fail ... marriage rate has fallen nearly 30% since 1970 and the divorce rate has increased about 40% ..." -- Among those living with MS or any disability I imagine subgroup statistics are off the charts.

Somehow Hallmark and the floral industry continue to turn Valentine’s Day into a great American myth. It’s particularly challenging for Patti in that she can’t see more than a few feet in front of her, memory and mental confusion complicate any ‘special’ day, and currently she is hampered by acute sinus and upper respiratory ailments.

Yet challenge is what caregiving is about. <grin> Faced with “can’t see and can’t smell” I was able to find colossal imitation roses, that puzzled even Patti's vision and 'confusion' to the point of curiosity. <grin>

Applebee’s Carside To Go brought ‘dinning out’ to the convenience and comfort of an accessible home environment.  Many restaurants are ‘accessible’ however at Patti’s level of disability that does not always translate to comfort. Crowds and congestion contribute to confusion for her.

Transferring in and out of our vehicle was particularly taxing for her and spasticity was significant which unquestionably contributed to transfer problems in spite of new medications.  

There will always be obstacles. You just have to work through and past them. Overall the evening worked out well.                                    

makes you stop and think

“… the arrogance of the able-bodied is staggering … the power is in the balance, we are our injuries as well as we are our successes …”

 

Even though a work of fiction, I found this passage from “The Poisonwood Bible” by Barbara Kingsolver to be somewhat of a literary slap up side the head that just makes you stop and think.

I could only laugh

Wednesday night I stopped by to try to finish some maintenance on Patti’s wheelchair. As it was almost 8 PM I hoped to find her out of her chair and in bed. Instead she was rolling down the hall grouching a fit at all in hearing range.

 

It seems volunteers had ‘kidnapped’ her for the continuation of “movie night” (apparently they were unable to finish John Wayne’s “Quiet Man” on Monday). Apparently before Patti realized it was the same boring movie she was trapped in the human Rubric's Cube and just wanted to go to bed.

 

I gather she made such a ruckus they had to pause the movie to move everyone around to get the grump out of there. <grin>

 

When it gets to be around 7 PM you do not want to be in between Patti and her bed!!!

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

As for those foot rests  … even though I had taken one with me to find the correct part, left the other in the back of the closet, and discussed with anyone and everyone who would listen about Patti using her legs  ….  Patti was rolling zigzag down the hall with only one foot on that remaining foot rest and the other foot stomping along while she grumped and grouched at anyone and everyone about wanting to go to bed and complaining about “boring, stupid John Wayne movies.”.  …. It so bordered on the comical I could only laugh.

leg use vs atrophy

For months now Patti has been using the footrests on her wheelchair. We purchased a custom lower height wheel chair nearly a year ago specifically so that she would USE her feet and legs to assist in propelling herself along. Leg use of some type is critical to avoid atrophy.

 

The leg rests are basically only for an outing where Patti needs to be pushed.

 

As I’ve discussed before, one downside to a multiple shift facility is communication. When one shift finds those leg rests on they leave them on assuming there must be a reason, this in turn is followed by the next shift and so on.  Days became weeks which became months and became policy.

 

Tuesday beginning with their in house physical therapist I began back tracking “WHY” are Patti’s leg rests on? She is not using her legs! … Each layer back had no reason except that they found them on. There was NO medical or safety reason.

 

I can only guess that one day in the past someone returned Patti from a push outside and did not remove the leg rests. I myself have fallen into the same cycle of this trap.

 

Some wheelchair maintenance and reviewing for an upcoming Care Plan meeting is what got me going through a mental checklist otherwise this could have just gone on as policy. … MS has impaired the ability of Patti’s legs to walk. However she MUST exercise and use those leg muscles to avoid atrophy.

Tools

A ‘tool kit’ is usually offered as an option when purchasing a wheel chair especially modern lightweights, folding, sports models or any with easily detachable parts.

 

In retrospect that is probably a wise add-on. Operating out of your home you most likely have a variety of tool options lying around. However in a care facility or on an outing a simple adjustment through a potential safety adjustment can get very complicated due to the lack of a tool.

 

Manufacturer tool kits are specific to your wheel chair model needs and compactly packaged for storage and transportation WITH the chair. … Tools in a drawer or closet don’t do you any good <grin>

 

You live and learn and pass along the knowledge.

What MS doesn’t destroy it appears the jackals will try

I stopped by to visit Patti Monday night. Residents were all parked in wheelchairs like a drive-in movie watching John Wayne’s “Quiet Man” in front of the facility’s mega-screen TV for ‘movie night’.

 

As Patti’s vision is one of the worst of all she was parked in the front row. It would have been like playing with a human Rubik's Cube to remove her (or even get near to visit her). Instead I simply stayed and watched her for awhile.

 

Patti was increasingly glancing around particularly down toward the floor. A trait of hers that signals loss of attention. I’ve often asked her what she sees “down there” as she’ll appear to fix her stare on something.  -- “Nothing,” is her usual answer. However there are times this habit of hers can get in my head and I have found myself following her stare and double checking just to make sure nothing is down there. <GRIN>

 

Though only 10 yards away she couldn’t see me. It was peculiar to simply watch Patti and not intervene and not alter her immediate world.

 

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Stunning Reality on Medical Bills

"Half of all  bankruptcies are caused by soaring medical bills and most people sent into debt by illness are middle-class workers with health insurance, researchers said last week. We're all only one illness away from bankruptcy ..."

 

I’m still pulling my hair out as the never ending saga of Patti’s medical insurance spins ever out of control. I wish that was as simple to intervene and alter.

 

For 11 years there was NEVER a problem, then in the last 6 months it has become a full time job with over time. I look over and the floor of an entire room is covered with ‘organized’ piles of paper.

 

Claims have been filed, paid, refunded, refiled, repaid, then refunded, and reprocessed all over again so many times – even my piles are starting to loose track. The journal entry about the TOAD AND MEDICARE is more than true.

 

What MS doesn’t destroy it appears the jackals will try.

odds & ends

Some weekend odds & ends …

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As a follow up to journal entry on "friends are extraordinary medicine", this excerpt from an email from Patti’s Mom captures how perplexing MS & Memory problems can be.  “ …We enjoyed our visit with Patti (Thursday) ...she did remember that she visited with her two old school chums BUT she did not tell us that Betty and Rob were up that afternoon (only hours earlier), her memory or lack of memory still baffles me, but I know it is the result of damages caused by MS”

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A thoughtful observation was also posted to an earlier journal entry entitled " unable to connect".  I discussed with Patti how she does seem to sometimes leap over all the in between and just get past or “get over it”. Neurology offers all these ‘too-many syllable words’ to describe why Myelin damage causes emotional short circuiting.  But does she “feel” or get frustrated trying to express how does shefeel?

 

She replied, “What difference does it make? I’m still going to have MS. When you have MS you have to get over it.”  She elaborated how useless it was to think about anything she couldn’t change. With a chuckle she summed up her answer by pointing out that if all else failed then that’s what her Prozac was for.

 

My mouth simply hung open at this lucid reply. Before and after this exchange Patti could not accurately tell you the day of the week, age of her daughter, any of her medications except Prozac <grin>, or where we were going or what we were doing.

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

Sometimes over the years it has seemed to me that we on the outside, tend to look more for answers, reasons, and explanations of MS symptoms. Then in crystallizing moments Patti snaps me back toward a more balanced focus that on the ‘inside’ its about survival skills.

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We did grab Patti for some time out on an unseasonably 50+ degree Sunday. Nothing quite like a good, scary movie matinee, “Hide and Seek” (starring Robert De Niro) followed by ice cream at the Dairy Queen and then home for some dinner and Super Bowl. You can almost set your clock to Patti’s bedtime <grin>. Sure enough by start of the second quarter she was ready for bed it was 7:30! (and it was an unusually active afternoon for her with NO nap.)

... 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!