Wednesday, December 26, 2007

Caregiving: Tradition! Tradition!

“You may ask, "How did this tradition get started?" I'll tell you! 


... I don't know. But it's a tradition...”  (Tevye)


Holiday traditions can drive caregivers and challenged people bonkers. Undoubtedly the able bodied have similar pressures and even though I have one foot in both worlds it has been a long time since I shared the holidays from a ‘totally able bodied’ perspective.


Holidays pull families and friends temporarily together for hours or even a day, yet good well-intended people hosting under pressure can develop a tunnel vision of festive fascists.


To care, and caregiving can put you on a collision course with ‘tradition’.


Caregiving is an unbalanced environment driven by unpredictable care needs. The person needing attended care must be the focus if only to improve their safety and stability. The bigger picture MUST adapt. That is challenging for family gatherings unfamiliar and uncomfortable with daily caregiving needs and demands.


To caregivers who have had to rush, push, or shove the square peg into the round hole it sure can feel like you are outside looking in.


In our story with Patti non-ambulatory and Multiple Sclerosis related bladder and bowel incontinence, Depends require changing at least as often as an able bodied person would visit a rest room. Changing an adult is weight lifting time and takes a customized room.


Christmas Day ‘visiting’ was a 10 hour outing full of good times (and more). Patti was exhausted as was I. My caregiving day ended waiting for the dryer to finish the third load of related laundry.


My day was mild contrasted to so many caregivers out there. … The elderly lost in thoughts of would they see another Christmas. … Family members with dementia blocking or erasing memories and even names of the family around them. … Children with physical and or cognitive challenges trying to grasp even the concept of Christmas.


Thank you all for being out there in the world.


"Yes, Virginia, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy.”  (Francis P Church)


Caregivingly Yours, Patrick Leer

Sunday, December 23, 2007

Caregiving: holiday shopping 'around the limbo clock'

Caregiving and holiday shopping can involve a touch of madness.  Holiday shopping overloads everything including accessibility options


Available electric carts or adaptive carts are overwhelmed with holiday shopping volume. I push Patti in her wheelchair with one hand and pull a shopping cart behind me with the other. Harder than it seems, kind of a caregiver specific weight training. <grin>


Patti’s Multiple Sclerosis related visual impairment and cognitive challenges require me to provide a running description and commentary on items displayed on shelves. She in turn offers her opinions, often too frank and not exactly “family” rated. <grin> To ‘normal’ shoppers our rolling intrusion into their shopping reflections turn quite a few heads, especially if someone is actually holding the item Patti has just labeled, “Who the f*ck would buy that?” <GRIN> (It takes a brave person to buy something after that less than subliminal ‘commercial interruption’.)


Check out lines are particularly challenging. Surrounded by tall trees of standing people and shopping carts as high as her wheelchair, Patti’s world view is confused and stalled.


Frustration and confusion easily trigger emotional lability. Entertaining Patti can be essential.


Its caregiver show time … how many uses can you come up with for a 36” long roll of wrapping paper? Yes, baton is the obvious. Though in close proximity a tad dangerous, and baton is not my forte. Musical instrument worked for a while, somewhat like an elongated kazoo it began to border ‘annoying’. Then ...

All around the limbo clock

Hey, let's do the limbo rock


Sliding the wrapping paper roll through the arm rests on Patti’s wheelchair, I had my limbo pole. Humming the “Limbo Rock” I certainly had Patti’s attention while I explored the age old musical question "how low can you go?" ... and noticed some ‘normal’ holiday shoppers clutching their children closer and probably wondering who the caregiver was. <grin>


As Charles Dickens once penned into the mouth of Tiny Tim, “God bless us all, EVERYONE!”


Caregivingly Yours, Patrick Leer

Friday, December 21, 2007

Caregiving: holiday card 2007

Somewhere a tree is enjoying the holidays and a postal worker is walking a little lighter … our 2007 family holiday card exists ONLY in cyberspace at …


Caregivingly Yours, Patrick Leer

Thursday, December 20, 2007

Caregiving: pimping out the Christmas Tree

Tuesday, I celebrated my 29th birthday for the 28th time. I needed something to get over the doldrums so I decided to “pimp out” my Christmas Tree. … If I was genuinely ‘old’ then I would use archaic words like decorate or trim.


The urban dictionary defines “pimped out” as having excessive embellishments or ornaments, particularly of the flashy kind, i.e. feathers in fedoras, black canes with silver handles, multicolored mis-matched shoes, and colorful crushed velvet suits. Preferably worn simultaneously. … Now THAT’S what I’m talking about. <grin>


Pimping out the family Christmas Tree has certainly evolved like everything over the decades of living with Multiple Sclerosis as a family.


In the early years when Patti could still struggle to stand I needed to create tree stability. Too often she would grab the tree for support or fall into it and you can guess what happened. Screwing the Christmas Tree stand into a 3 ft square, three fourths inch thick piece of plywood created a stable enough Christmas Tree to swing on. <grin>

Now in the wheelchair era and with visual impairment so pronounced, ornaments are concentrated at wheelchair level for viewing and touching enjoyment.


Of course, Patti is no longer of any help and 19 yr olds seem to feel trees should pimp themselves. Sooooo … it fell on the eternal 29th birthday boy and Stardust to take care of our 2007 Christmas Tree.


Yes, for those connoisseurs of cartoons, that is “Patrick”, the starfish, crowning the top of our tree. <grin>


P.S. I even used my trusty Ginsu knife to trim the tree from 9' to 8.5' and yes could still perfectly slice food afterwards!


Caregivingly Yours, Patrick Leer

Monday, December 17, 2007

Caregiving: on the frozen frontier (and more)

25 hours without electricity! Seems incredulous in this 21st Century. Reading news stories by candlelight of available nearby shelters through PEMA (Pennsylvania Emergency Management Agency) was ominous. However, after working tirelessly and then importing crews from New York, New England, and New Jersey to help, PPL Electric has successfully restored and kept our power on for over three hours.


We were fortunate in that when we had this house built we took the option for a gas fireplace. While most neighbors lost not only power and as a result heat, we were able to retain a heat source. When power finally came back on our indoor thermostat read 59 degrees. I can only imagine how cold homes were that had no fireplace or any heat source.


WHY? I’m sorry that is a fair question. <grin> Saturday night into Sunday morning almost an inch and a half of freezing rain fell, icing over and bringing down branches and wires. The next round was “gale force” winds and down came trees and poles.


As a family this was not quite our longest “stone age” experience. In September 2001 a F3 level tornado ripped up College Park, MD where we lived at the time. We were without power of any kind for over 36 hours. However we were blessed, the twister literally jumped over our house. Others were not, in its path it left 2 killed, 50 injured, 800 homes, 500 cars, and 20 businesses destroyed.


On a lighter side as neighborhood legend and lore remembers I was actually on the phone ordering a Papa John’s pizza unaware the tornado was descending on College Park and electrical and phones lines were being ripped to shreds. UNBELIEVABLY within 40 minutes of my interrupted phone order a Papa John’s delivery guy pulled up in front of our house having dodged fallen trees and poles and rerouted himself all over side streets to get to us! As everyone was outside gathered and stunned at the chaos, his appearance with a hot pizza has become mythic over time. … and YES I tipped him extraordinarily well. <grin>


Now this time, here we had no power and limited heat for 25 hours in winter which is a lot different than September. Yet Patti in her care facility had it ALL, electricity, heat, and cable! Visiting with her last night, she was ‘enjoying’ knowing she had all the creature comforts. <grin>


Multiple Sclerosis and pioneering is not fun. A caregiver may rise to the challenge yet the person in need will always view living temporarily in the stone age quite differently.


Caregivingly Yours, Patrick Leer

Friday, December 14, 2007

remembering "Buffalo Bob", Buster Crabbe, and a Grand Canyon Mule Ride

Going up into the attic to retrieve holiday decorations you never quite know what you will find if you take the time to stop and explore old boxes.


These first two pictures bewitched me back 36 years to college days and two days I spent accompanying two of my child hood idols. Two men I grew up watching on TV and movies who taught me to believe in magic and years later in real life were even more fascinating to meet and know.


And then … 31 years back to the unforgettable day long Grand Canyon Mule Ride down the Bright Angel Trail to unimaginable sights and views and back up again. And of all the roller coasters and thrill rides I have ridden, nothing can equal that day.


They warn you that riders should not be afraid of heights or large animals. What an understatement! When your mule decides to lean over the edge of a cliff to graze on some tasty branch protruding from the cliff wall you are left facing down a 1000+ ft cliff on the back of an insane grazing gourmet mule.  … Oh, but it gets better …


Your guide will tell you “don’t let it do that! Hit it on the head!” … WHAT? I am on the back of a possibly suicidal mule who is hanging over a cliff and you want me to hit it on the head? … RIGHT! … I tried “mule whispering” to no effect. First finishing my Act of Contrition, then I smacked the beast on the head. The mule shook its head, backed up off the edge and continued on the trail.


Stubborn as a mule is NOT a cliché. We would repeat this process several times. <grin>


What does this have to do with caregiving, I guess nothing. Just some time spent to stop and enjoy an old box in the attic.


Caregivingly Yours, Patrick Leer

Thursday, December 06, 2007

Caregiving: plastic baby Jesus, forgive me

Certainly there are more significant measuring tools for life, but tacky Christmas lawn displays oddly provide a unique window to our story.


Pre-Multiple Sclerosis and in the earliest years, I confess, I was one of those obsessive types who created electrical wonderlands. Even written up in the local paper with holiday homes to drive by. <grin> 


With MS progression and as caregiver demands increased Christmas lawn displays faded and eventually disappeared.


“Disposable” time for hobbies or fun is a luxury in caregiving.


Last night I was tooling away creating and said to myself, “Self why not go pick up Patti and include her?” … I never got another moment to spend on decorating. <grin>


Patti wanted nothing to do with sitting outside in the snow holding strings of lights. I can’t leave her unattended in the house, so inside we came. … and the worse case scenario began to play out a bowel accident.


Weight lifters in gyms may think nothing of dead lifting their body weight but let me tell you, dead lifting a human is not like a barbell. I weigh 172, Patti weighs 150. I have to lift her out of her chair and onto a bed to change her.


Undressing, changing, and dressing an infant is similar only in concept to caring for an adult. The physical demands are exponential.


When finished I must again dead lift her back into her wheel chair and begin clean up and a couple loads of laundry.


What was I doing?? … Oh yeah! For some insane reason decorating the lawn. And if Patti wasn’t enough I had to go to war with plastic baby Jesus to change his light bulb.


As I was threatening plastic baby Jesus after he bit me and my finger is bleeding, Megan laughs, “Dad I think you are loosing the Christmas spirit.”


Then Patti looks at the finished lawn display and remarks, “It’s cute but I really only want a cigarette.”  (????)


Why do I try? … perhaps I find sanity in snow falling on tacky lawn displays. <grin>

Caregivingly Yours, Patrick Leer

Sunday, December 02, 2007

Caregiving: THE SEESAW parenting and caregiving

Does time spent together count as a gift? Certainly the retail industry would scream blasphemyyyy with all the gusto of Howard Dean.


Caregiving and living with Multiple Sclerosis as a family was and is a seesaw in our story between caregiving and parenting.


Until our daughter, Megan, turned 16 we had never spent any kind of vacation that was not controlled by MS. Exacerbations or flare-ups aborted planned trip after trip in the 11th hour before departure. If we managed to get under way the same pitfalls shortened or modified those trips. Bladder and bowel accidents were beyond disruptive. Victories did happen, here and there, and they were treasured.


Attempts at time together while family or friends acting as Patti’s caregiver had some success but were haunted by injuries to those caring for Patti, or to Patti herself. Caregiving became increasingly physical and 24/7 demanding.


The advent of the care facility era was the first time that Megan and I could genuinely do something together and know that Patti was safe. That year Megan turned 16.


Yes, I felt a need to catch up. … The following video ‘remembers’ one side of that seesaw year between the dawn of the care facility era and the phoenix dawn of father and daughter.

16th Birthday Road Trip   (3 minutes)

A year later the care facility era continued to enable us to take spontaneous day trips to see, touch, and feel opportunity and dreams.

"The Gates" of Central Park  (1 minute)

Like any seesaw, balancing caregiving and parenting can sometimes leave you crashing down on your butt when the other person slips off. <grin> Yet, to stop trying is not an option. 


Caregivingly Yours, Patrick Leer

Saturday, December 01, 2007

National Family Caregiver Month "tools of the trade" - shower

Last but not least of the ‘tools of the trade’ of home caregiving is the shower. Not only am I trying to squeeze this in during the waning hours of National Family Caregiver Month but the shower can be the most dangerous of places in the home for both the able and disabled. 


Not being Kennedy’s we have never been able to afford the more incredible shower chairs that are out there on the market. At Patti’s care facility they have such state of the art stuff that a home caregiver can just stand and dream like a kid in a candy shop.


Additionally Patti has never been able to use transfer type seats that some people can use between a wheelchair and a tub. She is unable to move sideways.


Believe it or not the safest and most effective (and certainly most affordable) for Patti has been a plastic patio chair. Of course here again it takes muscle to transfer her from wheelchair to lawn chair and back again, but fortunately and God willing I can still do it.


A reader forwarded along a suggestion the SHOWERBUDDY. I personally have no experience with it but it sure seems to cover all the bases and is quite similar to the high tech machines available to Patti at her care facility.


I did have to smile at the picture of the “first ‘showerbuddy’” especially compared to Patti’s current shower chair pictured in our accessible shower. Didn’t someone once claim that necessity is the mother of invention.


Caregivingly Yours, Patrick Leer

Friday, November 30, 2007

National Family Caregivers Month "tools of the trade" - Rascal Scooter

For 15 years, give or take some months, Patti’s Rascal Scooter has not only been the pride of the ‘caregiver tools of the trade’ but Patti’s independence and freedom in a dependent world.

In the early years it empowered her, as she traveled miles to shops and stores or just for a ride. Now days her Multiple Sclerosis progression necessitates assistance transferring from wheelchair to scooter and help in driving.  Yet on wide enough paths with few pedestrian targets around her, Patti can still open it up and “feel” the freedom of movement.

                         Rascal Scooter


With our first light snowfall last week, it was easy to “remember” 


I suspect many brands have entered the market in the last 15 years but I know for a fact that this Rascal Scooter is a trooper.


Caregivingly Yours, Patrick Leer

Tuesday, November 20, 2007

Thanksgiving morning 2007 = 18th year of caregiving

Most nights it is long hall.

160 steps, give or take a few, from the door of Patti’s room at her care facility to the after hours exit door. Sometimes I count the steps to try and quiet the noise in my head.


On average I take Patti out and/or bring her home for the evening 4.5 nights a week.


Making sure her sleep machine is on, mist both her and bed linens with lavender scented Sleep Well aromatherapy spray, spray her wheelchair seat and padding with Febreeze, and write on the oversized wall calendar whatever today’s outing or visit was. Tucking her in, I try to leave her laughing or smiling about something before turning out the lights and closing the door.


… and starting down the long hall.


Behind every door I pass is someone once independent and now dependent. Reflecting on quality of life can quickly become a caregiver’s rip tide.


Focus on caring … (the voice in my head says) remember to laugh. … Monday night Patti locked me out of the van while I stopped for gas. Patti is perpetually fidgeting with everything and anything and managed to activate the door locks, while the keys were in the ignition so she could listen to the radio. Between her mental confusion, frustration, and my freezing (I had hopped out of a warm heated van in only a shirt), I am sure we were entertaining yelling through a car window as I repeatedly tried to explain to her how to unlock the automatic door locks and Patti rather colorfully offered her feelings about the predicament. <grin>


Make time to play … continuing to convert old video camcorder tapes to DVD we have been able to watch reruns of our life. Years ago because Multiple Sclerosis kept Patti excluded from so many activities we videotaped as much as possible so we could share ‘our’ play with Patti.


Thanksgiving morning will begin the 18th year of caregiving … plus 160 steps give or take a few .. and, of course, countless puddles.


Caregivingly Yours, Patrick Leer

Monday, November 19, 2007

midget albino cannibals vs pilgrims and indians

Spending Thanksgiving with the Pilgrims and Indians? Personally, I’m adventuring to Boonton, NJ, the home of “midget albino cannibals” as reported in "WEIRD NJ".          
While Patti and our daughter Megan, who will be acting as primary caregiver, will be safely spending Thanksgiving with Patti’s parents and family in Pennsylvania, I will be charging off to visit relatives on my annual quixotic drive through the fabled people and places of New Jersey

Caregivingly Yours, Patrick Leer

Thursday, November 15, 2007

National Family Caregivers Month "tools of the trade" - cooking

Chewing and swallowing challenges are not unique to Patti’s Multiple Sclerosis related symptoms of Dysphagia. Multitudes of diseases, disorders, and injuries can turn any meal or snack into ‘at risk’. 


The caregiver has to walk the line between the quality of life in creating a family meal and protecting life by serving and monitoring a safe meal. NO easy task.


Patti’s closest brush with the fatal edges of Multiple Sclerosis involved a near fatal choking accident while visiting with her parents almost 9 years ago.


This news story by WHP TV 21 tells it best, as I wasn’t there.


Since every caregiving situation is unique I thought I would turn this entry over to recommendations from readers. (By the way I am always honored anytime a reader forwards me something to include in this journal. Thank You!)


The Dysphagia Cookbook: Great Tasting and Nutritious Recipes for People With Swallowing Difficulties by Elayne Achilles “… a specialty cookbook filled with nutritious, great-tasting recipes for those whose eating options are limited by chewing and swallowing difficulties. …”


The I-Can't-Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry Mouth Disorders by J. Randy Wilson "…meets a real need…excellent cookbook…the nutrition chapters are a reference work themselves…I would recommend this to those with swallowing difficulties." Multiple Sclerosis Society UK. 


or …

30 Million FORGOTTEN American Diners NEED HELP From the Food Network challenges the Food Network & their talented TV Chefs/Hosts … ”Please encourage these TV Chefs and their production companies to dedicate some shows and recipes for those who usually have to put up with a very mundane diet….” Jason Seidler


Caregivingly Yours, Patrick Leer

Monday, November 12, 2007

... from Iraq

On Veterans Day I received this YouTube video created by 'the guys' in my nephew's Marine platoon in Iraq. Danny is the narrator. 


Caregivingly Yours, Patrick Leer

Sunday, November 11, 2007

Veterans Day 2007

Dear Veterans, 


THANK YOU for caring for all of us, all of the time …


Friday afternoon I had the most extraordinary experience. Working away on the computer an IM popped up from my nephew in Iraq with the Marine Corps.


It was sooooo great to hear from Danny and talk with him (well IM with him) in real time across the world in a war zone. I believe it may have been the coolest thing I have ever done on a computer.


Veterans not only epitomize caring but they are family and have families. Veterans are everyone’s family.


Caregivingly Yours, Patrick Leer

Veterans Day - WWII

A year ago I remembered our family’s WWII veteran history on You Tube.


I pray this generation of veterans in our family and all families return safely home.


Caregivingly Yours, Patrick Leer

Friday, November 09, 2007

Caregiving: disability parking and "parking nazis"

          Handicapped driver yield$ in ticket appeal

By Peter Gelzinis / Boston Herald / Photo by Matthew West


“… Renee explained how she’d been late for a prescribed physical therapy appointment … she forgot to pull her driver’s visor all the way down, so as to fully display her handicapped placard. …


…The Weymouth parking Nazis said “Nein” twice. “I found them to be a very snippy and arrogant bunch,” Renee said. “When I told them that my placard was in the visor, all they said was, ‘Well, you can’t expect a police officer to go looking for it.’…”


In search of some justice, if not common sense, Renee decided to take her case to court - Norfolk Superior to be precise.


“…If I wanted to go ahead and appeal my $100 parking ticket, the girl in the clerk’s office said the court would charge me $275 to file the appeal. … “And ma’am, one more thing I have to tell you,” she says to me, “even if you win, you won’t get the $275 back.”


“So, finally, I just sent the ticket in and said, ‘To hell with it, you win!’


We’ve had a couple similar encounters with “parking Nazis” fortunately all of ours have ended happily though certainly time was involved in fighting the ticket.


One incident actually occurred while Patti sat in the vehicle with her wheelchair clearly in view. The disability placard was not hanging from the rear view mirror it was somehow on the dashboard. When I walked back to our vehicle, the officer even met me and strangely informed me with a grin that he “left me a $200 note” on my vehicle.


Weeks later in court the judge learning that all three citizens sitting in court that day in wheelchairs and their caregivers were there contesting tickets issued by this same officer not only voided all tickets but gave the officer a tongue lashing that had to leave marks.


It is a shame that common sense is not always associated with ‘power’.


Caregivingly Yours, Patrick Leer

Wednesday, November 07, 2007

National Family Caregivers Month "tools of the trade" - wheelchair

THE WHEELCHAIR rolled into our family life like some stygian chariot. Patti’s resistance was valiant but futile against the progression of Multiple Sclerosis.


Yet over the decades THE WHEELCHAIR has grown to mean safety, mobility and empowerment. Even color reflects the changing image as Patti’s current Quickie® LXI is bright yellow.  


THE WHEELCHAIR is such a part of our lives that our 19 year old daughter has never really seen her Mom as a walking person.


Even our home pivots around it. Remodeling in our previous home was endless; we finally decided to simply build our current home from scratch. Until a WHEELCHAIR is a permanent part of your family you never realize that doors come in different widths or the height of most everyday things you need to reach.


(When you’ve been in a wheelchair as long as Patti has then enjoying some mutant moments is understandable.)

For example, a couple years ago at our daughter’s high school Patti created her own roller coaster out of an accessible hallway between three levels that rivaled a hillside. It took me most of that distance to catch up with her. No question that Patti enjoyed her wild ride and especially screeching ‘walkers’ jumping out of her charge.


At home our living space is all about rolling furniture. Inspired by the use of mobile modular furniture in Frank Lloyd Wright's Pope-Leighey House, Patti’s older and spare WHEELCHAIRS are the balance of the sitting décor.


Able-bodied visitors get a sample of being in and operating a wheelchair. The dynamics of the room are determined by the occupants not the furniture. Most importantly Patti is not the exception sitting in her WHEELCHAIR.


The advent of THE WHEELCHAIR as a ‘tool of the trade’ of family caregiving was ominous, but in retrospect was a milestone of surviving and even more so … about living.


Caregivingly Yours, Patrick Leer

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