National TV Dinner Day

Who knew that September 10^th was National TV Dinner Day? In our story it was purely coincidental that this homage to American family fine dining would collide with expanding my experiments with caring and the culinary arts.

Two months ago I began my experiments with finger food to hopefully prolong Patti’s ability to self-feed.

Two months ago I accompanied the earliest experiments in self feeding with verbal cueing … now here I was preparing to experiment with introducing TV to eating.  

Whatever … with nothing more than monitoring, Patti safely and enjoyably self-fed herself the evening’s finger food bowl of fresh fruit, boneless buffalo wings, and cheddar cheese … while watching the Simpsons followed by the evening news.

Again I attribute much success to cutting everything into varying shapes and sizes along with the differences in touch to the textures of fruit, poultry, and cheese. Let’s face it licking one’s fingers after buffalo wings is something that gets your attention.

Distractions while eating for Patti with her Multiple Sclerosis related dysphagia can be dangerous to fatal. However what I have always found is that it is the kind of distraction. Large gatherings involving meals are audio and cognitive over- stimulation. For people with cognitive or dysphagia symptoms frankly it is more about trying to survive than ever enjoying a noisy busy dinner.

I am not saying TV is a substitute for anything.  What I am saying is that I was able to introduce a variable, a single ‘distraction’, into my experiments with finger food for self-feeding without a problem for Patti. … In fact she surprised me when she discussed some news stories during commercials. Perhaps engaged might be a better word than distraction?

In the care facility era I look for symptoms I especially can have a unique ‘hands on’ impact with. I can no longer do it all but I can do some of it now even better.

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

multiple sclerosis caregiving

caring and the culinary arts III

Trying to be as scientific as the culinary arts and caregiving can be I expanded my experiments with finger food fruit bowl dinning to include those notorious chicken tenders and even boneless buffalo wings.

Whereas fried chicken tenders had caused chipmunking when eaten as an entrée they had no such effect when mixed into a finger food fruit bowl of cut up peaches, cut up strawberries, and grapes. Likewise when I cut up boneless buffalo wings again no chipmunking.

Yes, peaches have been the foundation of all these bowls. That is because peaches are Patti’s favorite, and when sliced up into bite sized pieces create a wonderful variety of shapes.

My vigilance in monitoring Patti’s eating, if anything, is increasing with these experiments; however what is extraordinary is that finger food fruit bowl dinning is dramatically reducing the need for verbal cuing.

Conventional wisdom and people with alphabet soup after their names would advise you with cookie cutter solutions of “minced food”, “feed the patient” or “puree”. I myself previously would never leave Patti with such freedom to self feed. … but for some reason it is working to extend this ability just a little bit longer.

I can only conclude:

1. To hell with table manners - finger food gives Patti’s one remaining able hand a sense of ability vs struggling with a utensil 
2. The combination of senses empower, touch and taste compliment sight which is impaired. 
3. Fruit has built in liquid improving swallow-ability 
4. Somehow the brain recognizing and processing the variety of shapes and textures in addition to the changing tastes must affect dysphagia in a positive way, almost as if putting it on hold.

At this point it’s time to enjoy what works. Pull up a bowl and get out your fingers. Welcome to Chef Patrick’s finger lickin’ good 'Multiple Sclerosis friendly' summer kitchen!

related entries

caring and the culinary arts II July 24, 2012

caring and the culinary arts July 8, 2012

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: multiple sclerosis, caregiver, dysphagia, culinary arts,

caring and culinary arts II

Between bowls and bowl games and the NCAA channeling memory loss by erasing 14 years of football victories as part of its sanctions against Penn State University football, it was worth rummaging through storage for this 25 year old poster, “The Few … The Proud … The Lions”.  Patti is a Penn State alum.

Multiple Sclerosis visually impaired, my fellow holder got laughing so hard at my improvised description of the poster in my best sportscaster affected voice that I had to use her lap to support her end of the 1987 Fiesta Bowl victory poster. 

Of course to us the preeminent bowl is the bowl I use for my continuing experiments with caring and the culinary arts. Recently we tried reverting to a more conventional self-feed meal where food bites are similar, such as chicken tenders as the main entre.

Sure enough Patti reverted immediately to what I call ‘chipmunking’ her food. She just keeps putting pieces in her mouth forgetting either to chew or swallow. Unmonitored this can quickly create a choking danger. And this is why in the care facility era she has progressed to being fed in the assisted dining room rather than allowed to try and self-feed.

Soooo all the more I wanted to try reverting back to using varying shapes, textures, tastes and color of food pieces to try and keep her mouth rebooting (for the lack of a better word) with each piece and extending her ability to self-feed just a little longer. It worked like a champ just as it had last week. Today’s bowl featured Patti’s favorite cut peaches, black grapes, cut up strawberries, raspberries, and cut up chicken breast grilled in Italian dressing. No chipmunking! No choking! I wish I understood why.

With my own attention and time increasingly consumed by living with lung cancer, my lung cancer odyssey, I’m discovering that keeping all the balls in the air is a bit more challenging when suddenly I am one of those balls … and yeah it’s just a bit harder when Patti cannot remember. 

by Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

Technorati Tags: "Mulitple, Sclerosis", caregiving, "Penn, State", NCAA

caring and the culinary arts

We once dined in restaurants like any other couple. We once did a lot of things before Multiple Sclerosis began stealing Patti’s abilities.

That was decades ago, this is now. Patti primarily eats or more accurately is fed at her care facility.

It’s no longer about fine dining it’s about safety as trained feeding assistants help Patti through meals in assisted dinning. The kitchen also stacks the deck preparing easier to swallow meals including mincing entries.

Progression of MS symptoms not only confounds her ability to chew and swallow (dysphagia) but see her food (visual impairment). Her failing ability to control her hands and arms makes getting food to her mouth with utensils an exercise in futility.  

While their teamwork is extraordinary, it seems to me that every once in a while texture diets and feeding guidelines can use some one man showmanship in the kitchen. Interestingly the care facility era ever challenges me to become better.

So I found myself inspired on the hottest day of the year to create a summer finger food entree specifically for Patti to try and enjoy at home. One handed finger food I should say, only her right arm works.

Why not grilled boneless chicken breast with a bowl of cut up fresh peaches, blackberries, and white grapes? My thinking was the mixture of berries and fresh fruit would provide an array of textures and shapes to stimulate her sense of touch over failing vision. The kaleidoscope of flavors I hoped would keep refreshing her cognition and attention. To prevent the chicken from seeming bland in contrast but not dominating as in BBQ, I grilled with a citrus stir-fried sauce (orange, pineapple, and grape) before briefly chilling and cutting up into bite sized squares.

The secret ingredient is verbal cueing … if you were nearby you would have heard “bite” … “chew” … “swallow” … interspersed with “now here take a sip of your drink to wash it down”. Verbally cueing Patti as she eats I sound more like a coxswain coordinating rowers as a rowing shell knifes through the water.

“Bangin’!” reported Patti as she safely finished her self-fed, one-armed, finger-food dinner bowl.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

when tradition is not accessible

How we celebrate holidays are traditions. I mean there is no law about how one is to celebrate the 4^th of July for example. Yet unquestionably there are pressures.

Holidays like most things are biased toward able bodied able minded celebrations. When that is not your life we adapt.

First and foremost heat and humidity is synonymous with the 4^th of July and also public enemy #1 for Multiple Sclerosis, something has to give here. We adapt making the 4^th of July more MS friendly by turning it into a morning holiday.

Parked in the shade of a weeping willow tree Patti was close enough to see and interact with crafts and contestants in Anything Floats race in Boiling Springs, PA … while the temperature was still only 78˚F (25.5 ˚C). Later as the temp neared 100˚F (37.7˚C) Patti was already enjoying her air conditioned siesta!
Anything Floats July 4 Boiling Springs 38sec

In this care facility era we are blessed with teamwork getting ready. Having help with Patti who is not only non-ambulatory but unable to assist with any of her activities of daily living is a godsend. Arriving to find Patti up, changed, dressed, and transferred from her bed to her wheelchair is immeasurable in the effort and stress it saves me and empowers our outing.

Progression of MS symptoms has unquestionably affected outings over the years.

Duration for example is affected by bowel and bladder incontinence. With progression, it’s not about finding an accessible commode but about leaving to find a bed to transfer Patti to and change her Depends and clothing.

Even sitting upright in her wheelchair for long periods of time is ‘complicated’.

Dysphagia puts her at increased risk of choking. Holidays and the hospitality of food seem to go hand and hand. Large loud gatherings with food are not fun as my vigilance must be undivided.

Blend in heat and each and every symptom above only worsens.

Sooooo why even get out of bed? Simple to go where no one has gone before.  Some follow traditions, we create new ones.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

where sheep wear spandex / an MS outing

Whether care giving or needing care sometimes the best thing you can do is just go have some fun.

Laughing while spandex wearing sheep tried to eat Patti’s wheelchair we began our visit to the 2012 Pennsylvania Farm Show.

With 24 accessible acres(approximately 24 football fields) under roof, I cannot think of a more wheelchair friendly outing for January. (and excellent pushing and walking exercise for me) 

Enjoying two creamy chocolate milk shakes from PA Dairyman’s Association in search of the butter sculpture we decided to watch some honeybees in a glass observation hive at an exhibit by PA Beekeepers Association. Soon we found ourselves in a conversation with a beekeeper about bee stings and medicine. While most visitors took a step back from the weird people talking about stinging themselves, several lingered, listened, and asked questions in a spontaneous discussion about Patti’s eventually unsuccessful two years of Bee Venom Therapy for Multiple Sclerosis and the beekeeper who had found genuine success for his Rheumatoid Arthritis through apiatherapy.

It’s hard to miss 1,000 lbs (454 kg) of butter and we eventually found the sculpture. After the week long farm show the sculpture is given to a selected dairy farm where it is converted into electricity.

After a couple hours of checking out and often visiting up close and personal certainly every farm animal and crop in our imagination – well, we were hungry … hey, the theme was “from the farm gate to the dinner plate.”

Heading to the food court area we decided on Lamb Stew from PA Livestock Association with frozen maple yogurt topped with maple syrup for dessert from PA Maple Syrup Producers.

Lamb stew and frozen yogurt could not have been more dysphagia friendly and feeding Patti was no problem in the crowd of humanity, over 50,000 attend each day. Most people are shoving one thing or another in each other’s mouth anyway under the ‘try this’ principle of fine farm show dining.

Happy and fed Patti was ready for a long winter’s nap.

Fortunately between MS fatigue and her memory loss she would not have to fret about counting spandex clad sheep. 

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

dysphagia, yes / dysfunctional meals, no

Written from my perspective, the caregiver’s view, Patti has MS related chewing and swallowing challenges. Memory loss and cognitive impairments act somewhat like an eraser on Patti’s ability to relate her own experience.

How something is defined versus how it affects someone are really two different things.

A meal centered holiday like Thanksgiving literally and figuratively brings dysphagia to the table.

This year was the first year I needed to feed Patti at the table following years of her increasing struggles to try to feed herself.

Amplifying this year’s focus on the challenges of chewing and swallowing I found myself the following day in an enlightening though poignant conversation with a cousin about her own and her son’s challenges with dysphagia associated with muscular dystrophies.

In Patti’s case it’s about the central nervous system in theirs it’s muscular. Nor is dysphagia exclusive to MS or Muscular Dystrophies – Alzheimer, Parkinson, and strokes to name a few. Even some medications and aging itself can complicate the complex combination of voluntary and involuntary muscles we know as chewing and swallowing and that most of us take for granted.

However none of us started out by taking it for granted. Any parent fondly remembers their time spent teaching a baby to eat from a spoon or chew solid food.

Do we fondly or alarmingly view the reverse?  How many people at the table can actually recognize choking and assist?

In Patti’s case, MS related, for example she may appear to be choking. Yet if familiar you would know that if a person appears to be choking yet talking (yes, even cursing and swearing) or coughing a dramatic interference such as Heimlich maneuvers might actually make things worse.

Speaking of the Heimlich maneuver how many at the table actually know when and how to do it? What about with special circumstances, such as a wheelchair?

Perhaps it should be about eating comfortably. Sharing a meal with people you do not have to educate or explain why you eat the way you eat and knowing they’ve ‘got your back’.

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

through MS 'symptom D' glasses

Not unlike 3D glasses at theatres sometimes it’s easier to ‘see’ living with Multiple Sclerosis when moments in time such as an outing to the movies are viewed through “symptom – D” glasses.

Getting ready is all about non-ambulatory which means transfers and assistance with dressing and changing Depends. Incontinence is best understood in terms of continence. How often do you visit the commode? Now just replace the word commode with - transfer from wheelchair to bed, change Depends, and transfer from bed to wheelchair.

Once ready to go, it’s onto wheelchair accessibility.

Considering all that’s involved with optic neuritis, I have my suspicions about 3D glasses, though this outing is 2D and visual impairment is more about proximity of accessible seating to the screen.

Whether jerky or simply lack of muscle coordination, spasms and/or spasticity means no bucket of popcorn goes on Patti’s lap. I hold the popcorn between us resting on her wheelchair rim.

Most dangerous of symptoms is dysphagia. Short circuiting of the muscles involved in swallowing can equal choking under the best of situations. Sitting in the companion seat at a theatre is the equivalent to the lifeguard chair at the beach.

Unlike garden variety fatigue, MS fatigue is more severe, a sudden lassitude.  In Patti’s case the odds increase as the day wears on, therefore matinees are preferred over evenings.

Sometimes you get a cocktail of symptoms. Dysarthria is all about the short circuiting of nerves controlling the muscles involved in speech. Pseudobulbar affect is all about inappropriate laughing/ crying.  In other words there is no way Patti is going to turn to me and ‘whisper’ something about the movie. More likely she may abruptly and unintentionally loudly interact with the movie dialogue.

Here again less attended matinees are helpful though I confess I’ve grown to enjoy Patti’s interactive MS dimension to the movie going experience.  

Ahhhh and alas there is always memory loss. Tucking Patti into bed at her care facility after our outing to see “Rango”, the nurse asks her where she went. “To dinner at my parent’s house!” J

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer

nothing says hello like emesis

Vomiting as a form of social greeting is not usual but neither is it rare in Multiple Sclerosis caregiving.

Picking Patti up after dinner at her care facility, I was greeted by a smiling, hands up in the air, “yeah” instantly morphing into a pantomime of needing a trash can.

It’s living with Multiple Sclerosis symptoms of dysphagia. One study or another reports dysphagia affecting a third to half of people diagnosed with MS.

Swallowing is an extraordinarily complex neuromuscular activity. Multiple Sclerosis essentially impairs the brain’s ability to communicate. Eating can be a train wreck waiting to happen.

Even factors that may not seem directly related such as coughing or laughing while eating or immediately afterwards can be a dangerous mix.

Obviously one cannot eat in a vacuum and let’s face it eating in our culture is a social function. One cannot fix this so the answer is planning and vigilance.  

Learn the Heimlich Maneuver, and specifically for a person in a wheelchair.

Adapt YOUR social ways for the moment, smaller rather than larger dinning situations. Monitor eating offering verbal cues and prompts as necessary. Separate social and eating until the chewing and swallowing is over.

Able bodied, able minded people only have to give up a meal of their time, a person with symptoms of dysphagia could be giving up a life.

Beyond the immediate potentially fatal act of choking, aspirated food or liquids can also cause aspiration pneumonia, another cause of death in people with MS.

Even the regurgitation of undigested foods can be part of this cycle. Perhaps it was throwing her hands up in the air, perhaps it was the excited “yeah” … who knows? MS is about baffling intermittent symptoms, neuromuscular short circuiting.

Seemingly a lifetime ago we used to dance to …

“Put a quarter in the juke

And boogie 'til you puke”

Root Boy Slim and the Sex Change Band

Now days I try to always have a plastic grocery bag in my back pocket and moist wipes in my man purse. And of course, … for old times sake, a quarter for the juke.

Caregivingly Yours, Patrick Leer 

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders

Jubilee Day is accessible, butt ...

Best thing about a street fair is a street. Streets are made for rollin’. Worst thing about a street fair is crowds. Who wants to spend a wheelchair outing rolling through a forest of buttocks?

We always look forward to Jubilee Day in Mechanicsburg, PA annually the third Thursday in June. With a little pragmatic adaptation we also always enjoy ourselves.

Billed as the largest one day street fair in the Eastern United States, somehow 60,000 visitors fit into the .6 mile of Main Street Mechanicsburg.  

We adapt to both crowds and heat (Patti is also challenged by Multiple Sclerosis intolerance of heat) by simply arriving early and departing early, works for us year after year.

Jubilee Day officially begins at 10 AM. Arriving even earlier we have always found everything open. In the cooler crowd-free summer morning it really is a treat to roll down Main Street.  Lemonade under a shade tree and you can almost feel the past in those lazy, hazy, crazy days of summer.

Unique to street fairs is vendor shopping. Unlike department stores or mall stores where counters are designed for standing people, street fair vendors sell from folding tables. For Patti shopping in a wheelchair this could not be more interactive and ideal.

Then there is the food, blocks of food. We do have to factor in Patti’s challenges to hold and eat food along with risk of MS related dysphagia from distractions with all the hoopla. Again here we adapt by simply bringing along utensils and a plate in her wheelchair backpack, creating options. 

Two stages of entertainment open at 10 AM.

Accessible parking is available in the municipal parking lot on West Strawberry Alley and accessible public portable restrooms are available every couple blocks.

By lunchtime the crowds are seriously starting to build and the cooler morning is replaced by summer heat and humidity … that is our cue to say good-bye.

Knowing not only challenges but limitations is a key to a successful and enjoyable outing.

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer 

musings: patrick ponders 

Mother's Day 2010

With lilacs scenting the morning breeze I sipped the morning’s first cup of coffee and greeted the day.

J & T were in Boston preparing for their on-the-road  Mother’s Day living with teen autism.

I dialed Patti’s care facility. People are never carry-out. Calling ahead to any care facility is a courtesy, especially if I want to hope that they can find the time to get her up, changed, and dressed. Most often they can however sometimes the physical home caregiver skills come out of moth balls.

Once we resolved her first cigarette she was one Mother who was ready to roll.

Big family meals can be choking risks for Patti, all the conversation and distractions magnify MS related swallowing challenges and dysphagia. However a little cozy 'assisted' dinning aside with “moi” safely resolved eating and maximized socializing.

Family time with her parents, siblings, our daughter, and cousins was both enjoyable and exhausting for Patti. Drawing on more heart and effort than most mothers and daughters, sooner than later MS fatigue kicked in and all Patti wanted was to take a nap.

With the dinner hour looming, I worried that the clock might work against her. Fortunately short staffing in the assisted dinning room meant Patti would be fed in her room when she ‘wanted’. A good long nap and her dinner tray when she wanted was a Mother’s Day godsend.

As for me … well I went home and opened a special book. Once upon a time, my Mother gave me a book of poetry I never even opened for over 20 years, and years after she had died. To my wonder, throughout the book, I found handwritten notes from her in the margins of poems such as, “If I could have written something, it should have been this”:

When I hear you laugh, more softly now, I remember

The excitement and inflection of a happy child

To see you grown suddenly, unmistakably older, saddens me

But I know that somehow beyond all words, beyond

Time and pain and the mystery of death

We will walk again amid the flowers of spring

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

"Whatever else is unsure in this stinking dunghill of a world a mother's love is not." James Joyce

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

Multiple Sclerosis & Family: Mother's Day

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/ 

videos: http://www.youtube.com/daddyleer