‘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>