to be fed or not to be fed, that is the question …

Adapting to MS progression is unquestionably part of being a Multiple Sclerosis caregiver. Accepting it is another story.
 

It’s been a long strange trip from fine dinning to eating with dignity.

While I can understand recent changes in Patti’s care plan from ‘assisted dinning’ to being fed, somehow a written plan has an emotional impact even though I know it is best and done to insure consistency in care.

Care facilities in addition to conventional dinning have ‘assisted dinning’ which involves not only increased staffing ratios but can include the skills of nursing, occupational therapy, speech therapy, and others during meals. - Within this group are also those like Patti who are dependent on others to eat and drink. Nursing assistants or aides are assigned on a one-on-one ratio to facilitate feeding in a safe, dignified manner.

I’m sure it is written somewhere that independence should be encouraged. Yet I know and have known that it is damn difficult to watch Patti increasingly struggle to feed her self with loss of arm strength and control.

Choking is also always a clear and present danger masked in invisible and intermittent symptoms related to the functions of swallowing.

At home I’ve long engaged in ‘assisting’ Patti with eating. Adaptable preparation soon evolved into verbally cueing her to pick up the spoon/chew/swallow, and using finger food whenever possible – everything except simply feed her.

While I cannot remember when we last went to a restaurant, we do enjoy eating out at festivals and street fairs. However I confess to feeding Patti in public behind a masquerade of “here, try this” or “taste this”.

Other factors like MS fatigue, memory loss, heat intolerance, visual impairment, etc can also affect any given meal.

Monitoring the transition from assisted dinning to being fed I asked the only person who mattered, Patti, about it immediately after ‘officially’ being fed dinner. “I can’t remember” she laughs, “Now can I get a ciggie”.

Ay! There’s the rub – perspective.

 … and sometimes tangential questions of etiquette such as which side of a plate does a spork go on?

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

dedicated to Irene

Detoured but not deterred by roads closed due to downed trees and power lines. Driving the extra miles to pick Patti up for an outing following Hurricane Irene - I had time to reflect.

“There was something about a thread of synchronicity I could not get out of my head … hurricanes and Multiple Sclerosis exacerbations … Hurricane Agnes … Hurricane Ivan …”

THE CAROUSEL

Dedicated to all those ‘threads of synchronicity’ linked and to be linked to Hurricane Irene.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

assisted shopping for clothes / wheelchair and MS

No doubt in my mind that even Job would have broken had he been ‘tested’ for over 20 years shopping without a universal sizing system through sections of misses, junior, plus, petite, and womens clothing.

Multiple Sclerosis symptoms early on impaired Patti from reading labels, trying on clothing, and driving to stores much less play Mom with our daughter.

Raised in men’s clothing where shopping is a function of waist and length, my adventures into women’s clothing have been more like the Mad Hatter’s tea party especially since the quest for the last decade has been ‘best of possible for assisted dressing’.

Non-ambulatory, Patti requires assistance with dressing. Lying prone in her bed, she can no longer even lift her butt or roll on her side. Total incontinence necessitates wearing Depends 24/7. All of the above and more leave us discriminating shoppers to say the least.

Measuring is everything. Yes, stores have wheelchair accessible dressing rooms, but no one has an adult changing table.

Curiously the only mannequin we’ve ever seen in a wheelchair was while shopping at Kohl’s captured on this camera phone picture from over 5 years ago. Kudos to progress with the debut this Spring of Mannequals.  

In search of clothes that both express Patti while seated in a wheelchair yet somehow are designed and/or sized for assisted dressing -  I push Patti through the aisles in tailor motif with my measuring tape hanging around my neck bemusing her to no end.

Even after two decades it doesn’t take long before my measuring turns to mumbling.

Soon I’m mumbling about storming the Bastille (obviously the French are behind this) and lamenting my never ending respect for the shopping patience of drag queens, as Patti laughs away like rewatching an old favorite movie.

“Patti I just had to stop and say hi, I could hear you laughing across the store!” A staff member from Patti’s care facility out shopping with her kids appears in the aisle.

Hmmmm! ‘Could hear you laughing across the store’ –  plus a couple new outfits – I’ll take that as a sign of a successful outing any day. … Up yours, fashionista!

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

can I depend on you / planning for life with MS care giving

Can I depend on you? / Can you depend on me?

When your world is turned upside down who thinks about plans? The person diagnosed with MS has a mountain of emotions to suddenly deal with. “the call”

The people around them have a parallel world of reactions confounded by invisible symptoms and invisible hurdles.

From the earliest symptoms through diagnosis of Multiple Sclerosis and beyond it may be more like a dance than stages of a denial acceptance equation

Everyone brings who they are to the moment. With one basic question, can I depend on you? / can you depend on me?

Whether one chooses to go it alone and create their own support network or within a family unit, the dance begins. Somehow each must not only learn but learn to move together.

Caring can push too hard or equally react too slow. Pushed away in the moment, it’s equally difficult to learn not to sulk as it is to try again.

Giving someone ‘space’ sounds easy until you create distance between you.

In the beginning it may seem as impossible as respecting boundaries without borders.

Complicating it all is that MS in the beginning does not look ominous. When you look ‘mahvelous dahling’ people have a problem understanding your diagnosis much less anxiety.

Also our attention span for caring is definitely short term. Hallmark sells ‘get well SOON’ cards not ‘living with’ cards.  MS on the other hand is about a commitment of decades not days.

MS symptoms may change and progress through the years increasing needs while abilities and resources of those who care decrease, butterfly effect MS caregiving.

Can I depend on you? … In the beginning, there is more going on in everybody’s heads than is actually happening. Like any first dance there will be those awkward moments of hand placement and you most certainly will step on a few toes. … Can you depend on me? 

“You can’t depend on your judgment when your imagination is out of focus” Mark Twain

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

game plan / planning for life with MS care giving

Life is what happens while you are busy making other plans. John Lennon

Patti’s neurologist first raised the issue of ‘more’ than homecare, the pre-dawn of the care facility era.

Ten years earlier when I asked this same guy about moving to a one story house to facilitate living with Multiple Sclerosis he had said, “Oh! I wouldn’t do that.”

OK, maybe neurologists are not psychic and not financial planners but they are ‘first responders’ to living with MS.

Over those ten years we seemed to live getting one step ahead only to fall two steps behind always remodeling and adapting. What if – we had originally and simply moved to a one story house?

Of course this is ‘retrospective’ planning - certainly we would have had less stress and more money – yet life does not include any ‘do-overs’. You get one chance.

In as sense you are torn between hope driven living or worst case scenario planning. Yet the simple truth is that when the resulting plan is driven by reaction to symptoms and/or progression then reality ricochets.

Complicating any formula for planning for life with MS is that every story is unique. Some people with MS climb mountains, some cannot even get out of bed, most are somewhere in between.

Living with MS is also often about the families that surround and are part of each story – or not part. Ripples affect either way.

Believe me there have been more times than not that I have wondered if planning is an illusion or a delusion.

Regardless you have to come up with something and then MS does what it wants – the proverbial “busted play” of American football. Mesmerizing when it works … ‘what were they thinking?’ when it does not.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

web site: caregivinglyyours.com  

where geese do the flamingo

Since the care facility / nursing home era of living with Multiple Sclerosis I find myself motivated not only by a commitment to 4-5 outings per week but an effort to make each outing 'hand picked'.

With temperatures only in the 80’s we could actually try some outside time. Parks are favorites as most are wheelchair accessible and while Patti is visually impaired nature is supportive with sounds and smells.

There is something special about enjoying a ‘ciggie’ while LeTort Spring Run chased itself over rocks and under ducks.

Nature trails in general are reasonably accessible though as pictured genuine accessibility in nature takes maintenance.

Shrinking government budgets plus more volatile summer weather can make it challenging.

That was OK we had plenty to explore. A huge wooden playground, pavilions, shady grassy areas and a spray pool  – almost a throwback to open urban fire hydrants of days long gone.

While I resisted my ‘inner imp’ to just roll Patti under it – I have no doubt were it last week with 100 degree temps we would have been rolling through there like a train schedule.

LeTort Park is not advertised as “accessible”. Divided by LeTort Spring Run, an elevated pedestrian bridge (walkers only) connects to the other half of the park.

Our half was however mostly accessible or "pushable" if determined and certainly enjoyable.

All things said and done, just relaxing and watching a Canadian Goose do the flamingo was rather entertaining.

When he or she decided to try being a songbird shattering the twilight peace with a honking serenade – I’m not sure which was louder the honking or our laughter.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

persecution and humiliation / MS in the workplace

If life were a Clint Eastwood western an avenging rider would thunder into the Pioneer Valley of Massachusetts. 

“Debra Caldieri, 48, who suffers from multiple sclerosis, said she received a letter from School Superintendent Gus Sayer last week informing her that she has been taken off medical leave and terminated.” South Hadley teacher Debra Caldieri, friend of late freshman Phoebe Prince, fired

 “Caldieri believes her downfall at South Hadley High School in Massachusetts is connected to her relationship with Phoebe Prince, a 15-year-old freshman who hanged herself in January of 2010."  

"Prince’s suicide ... sparked an international campaign against school bullying and put the media spotlight on South Hadley and its social dynamics. “

Caldieri is credited by Phoebe Prince‘s family as one of the few people who reported the bullying that led the teenager to take her own life and broke Sayer‘s mandate of silence when she cooperated with police investigation.

According to Caldieri, symptoms of her multiple sclerosis were exacerbated by stress she endured due to related workplace bullying by the South Hadley High School principal Daniel Smith and Sayer.

Extended medical leave has left her unable to support herself or family. With friends helping her with rent and insurance premiums and less than three weeks after she spoke out on bullying in the workplace on Beacon Hill (Massachusetts' metonym for their State government) the school system only had one last coffin nail to drive – they fired her.

When someone in a wheelchair ‘stands up’ for those who cannot stand up for themselves and gets smacked down – you do have to ask yourself where have all the cowboys gone?

Then again it’s not a fictional town in the old ‘West’, it’s a real town in modern Western Massachusetts – 

“The persecution and humiliation of Deb Caldieri, the teacher who responded to the suicide of Phoebe Prince with a compassion so utterly lacking elsewhere in South Hadley High School, is complete. …” Boston Globe: Cruel lesson for a teacher

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

what type of carer / caregiver am I?

If I was just beginning a journey as a carer or caregiver I might wonder if the information age has created a cyber-monument to rival the ancient Tower of Babel. ... Family caregiver? Carer? Caregiver? Spouse carer? Kinship care? Well spouse? Soignants? Sandwich caregiver? Elder care? Parent caregiver? Homecare? Assisted care? Cuidadores? Child carer? Companion care? Pflegepersonen? Long term caregiver? Respite care? Informal care?

Confounding any Google search for information is that we cannot even agree on the key word. ‘Carer’ is the more common usage worldwide but in Internet noisy, North America we use ‘caregiver’.

Prefixes should clarify, yet too often they only add to the confusion. Is a ‘parent carer’ a parent caring for a child or is someone a caregiver for their parent?

Millenniums from now will anthropologists determine we were a different genus and species - homo auxiliāmus  (‘helping’ man) vs homo sapiens (‘knowing’ man)? …  Now admit it, there are days it sure feels that way.

Each illness or disability should be a source of information for caregivers / carers but for obvious reasons many organizations are focused on hope and cures.

We have more in common if only as kindred spirits then any differences that divide us though undoubtedly there is a shared bond or uniqueness among sub-groups of carers / caregivers.

Certainly in many cases there are legal and/or financial reasons for proper labels.

Caring can be identity sucking. How anyone in need labels us may be secondary to how we see ourselves changing in the mirror. 

“His mind is engaged in a rapt contemplation

Of the thought, of the thought, of the thought of his name”  The Naming Of Cats by T. S. Eliot

I’m quite sure after two decades of this that outside of some expletives that Patti has never called me anything except my name.

On the other hand in the bigger picture, for a boatload of socioeconomic and geopolitical reasons the costs of caring is increasingly impacting the world’s economy. Divided by labels, language and available time are we becoming a ‘silent majority’? That would be the worst of labels.

related entries: spouse caregiver

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer

contractures Multiple Sclerosis

Muscles, tendons, and ligaments operate joints; and well - dysfunction begats dysfunction often painful and even more mobility restrictive.

Why do joint contractures happen? Limited use, spasticity, muscle imbalance, and more - hey it’s Multiple Sclerosis - muscles act weird.

Ignoring contractures may be a result of not understanding and/or denial of MS progression, lack of access to resources, impairments and/or like Patti a dislike of physical therapy. … Not addressing contractures early can only lead to pain, more draconian therapy or surgery.

“Contractures represent a common but preventable source of excess disability among nursing home residents.” Contractures in Nursing Home Residents 

Undoubtedly treating contractures is more challenging in the pre-care facility era. Patti’s therapy program has evolved to a simple daily prescribed routine of wearing her “Neuroflex Technology” a couple hours each day. 

She’s even managed with her signature wild and crazy socks to make it a fashion statement. Though as pictured, Patti an obsessive ‘fidgetor’ has fidgeted the velcro all wonky – all the more benefit to regular monitoring by staff.

While MS progression has left Patti non-ambulatory, her ability through treatment to extend her legs makes all the difference in the world when I transfer her with a one person transfer technique from wheelchair to bed 4-5 nights per week, or as a prerequisite for outings.  

Yet no matter how much something is viewed positively from the outside looking in - it is wise to always remember you are not the one sitting in the wheelchair or wearing the brace.

“Loss of ambulation can be a symbolically powerful moment in the progress of disability from MS … Individuals may re-experience these emotions with each prescription of an assistive device …” Primer on Multiple Sclerosis by Barbara Grier

As a caregiver / carer, family or friends - you must continue your MS education; stay involved and supportive of treatments. In a sense you are the incentives for effort.

related entries:

knee contractures MS

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com  

videos: www.youtube.com/daddyleer