Thursday, July 31, 2008

caregiving: an evening at the races

Hollywood Casino at Penn National Race Course is surprisingly not wheelchair friendly. 

Arriving I followed signs to “accessible van parking”.  Spaces designed with adjacent area blocked out for ramps or lifts to deploy. However, every space was occupied by a regular passenger car. … Instead we cruised the parking garage looking for an end space on an aisle to deploy the ramp. 

Doors from outside to inside whether off the parking garage or to the casino display a wheelchair access sign but we could find NO controls. An unattended person in a wheelchair would be hard pressed to open and enter outward swinging doors.

Beware! There is a crisis in South Central Pennsylvania with people moving furniture. Every chair in front of a slot machine was bolted to the floor. Management must assume people only use wheelchairs or scooters for convenience not necessity.

Yes, you can find a manager who can direct you to a security officer who can contact a security supervisor who can contact a maintenance engineer who can unbolt and remove the fixed chair to allow wheelchair access. That took 20 minutes on a non-busy Wednesday evening.

I believe I dead-lifted transferred Patti half a dozen times in and out of her wheelchair to a bolted chair to check out machines before choosing one. Everything from color contrast to height or slope of machine face can affect Patti's MS related visual challenges.              

Pictured are Patti, her Mom, and top of her Dad's head enjoying the ‘chosen’ slot machine.

A highlight was Penn National Race Course adjacent to the Hollywood Casino. Literally roll out the casino door and you are at the track.

Patti’s wheelchair could basically park at the rail. Between proximity and the size of a horse and rider it was visually impaired friendly entertainment.

Washed by an earlier summer thunderstorm the evening could not have been more beautiful. 

Never confuse accessibility challenges with a good or bad time. Caregivers, family, and friends can usually overcome obstacles.

Good times are CREATED from time spent together. 

Caregivingly Yours, J Patrick Leer

Monday, July 28, 2008

caregiving: bedtime routine

Patti’s MS fatigue leaves her exhausted by 8 PM. Even though Patti resides safely in a 24/7 care facility I prepare and tuck her into bed 4.5 nights per week. 


Bedtime routine has become ‘show time’. While most of the below also attempt to creatively address symptoms the main target is the mental health of laughter.


Teeth brushing – I push Patti into the bathroom to have her brush her own teeth at the sink. While more like playing in the sink, I believe it is important for her to keep trying as long as she can. … When she rinses with Listerine, my sound effect screams of dying germs often causes a burst of laughter to expel the mouthwash rather than a simple spit.


Tissue Toss Basketball – Patti likes to blow her nose and can get obsessive about it. I created this game where I park her near a wastebasket, put a tissue box on her lap, and let her blow her nose and try to toss the tissue in the wastebasket.


I provide sports caster commentary while I prepare her bed, turning down sheets and spraying linen with scented mist.


De-Blinging – Removal and discussion of any jewelry in my best red carpet interview style.


Dancing Nightgowns – Medical style dressing gowns are always folded up in squares. I unfold it with a magicians flourish and dance with the gown for several seconds singing “I Feel Pretty” from West Side Story. For whatever reason, this always sends Patti into peals of laughter.


This scene concludes as I transform into my “spraying mantis” incarnation spraying Patti with body mist.


Tossing the disabled – With all the flourish and sound effects of ESPN or Professional Wrestling I announce tonight’s main event, then pick up Patti and put her into bed. Finishing with the traditional wrestling three slap on the bed denoting a pin and doing a victory dance around the room.


I’ve wondered what bedtime is like when I am not there. Last week one of the staff happened in and decided to pull up a chair just to watch. 


What's in your bedtime story? <grin>


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Saturday, July 26, 2008

caregiving: communicating

We live in an extraordinary age of communication. Most of us communicate effortlessly. 


Effortlessly is good, assuming that everyone else 'can' is something we all need to work on.


Patti’s MS symptoms create a dangerous kind of pot luck communication, visual impairment (legally blind), cognitive impairment, and memory loss


Patti can ‘appear’ OK. In conversation, a well intended guest might offer her food that could have catastrophic results with her MS related dysphagia. She is not going to say “no” to something sweet, but she is going to forget to chew and swallow without verbal cues. Also unable to direct her own care, a simple medical or care question from a stranger could be disastrous.


Telephones are so challenging both cognitively and physically for Patti they are rarely used. "Reach out and touch someone" is not in her world and could put her at undue risk if unattended.


In the communication challenged world of autism, schools and families use symbols.


Archeologists believe we have been writing with symbols since 6,000 BC.


Writing With Symbols 2000 is a symbol processing program by Mayer-Johnson. You type as usual except text and associated symbols appear on screen.


While most schools or families primarily use only the symbol processor part, the program can also empower verbal sharing. When the student is creating their text, they can have the words spoken back to him or her. 

With this note above, if using a PC with Writing with Symbols, pausing the mouse over a symbol speaks the word. You can use standard icons or insert your own pictures.


Social stories created with such software are a foundation in autism caregiving. A story is created, reviewed and rehearsed with a parent or caregiver and then the story is used to guide behavior.


Long ago as a speech communication major at the University of Maryland I was always intrigued by an axiom offered by a communication theorist, Paul Watzlawick, “Man kann nicht nicht kommunizieren.” (One Cannot Not Communicate)


Yes, communication challenges can isolate. However, families and friends also speak even when they say nothing at all.


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Wednesday, July 23, 2008

caregiving: what is it like to live with Multiple Sclerosis?

Succinctness is important in caregiving journaling. Time is precious for readers.


I target no more than a minute or two of a reader’s time with a word count cap of 350 words.


“International average reading speed is accepted to be about 250 words per minute” Turbo Read Speed Reading


Bea, of AOL Journal, “Wanderer” (until a more suitable name presents itself) recently raised the bar pointing out how gifted writers can tell a story in only 6 words.


Did you know that in speaking English people average about 100-120 words per minute? Try timing and reading your entry out loud to yourself, is anyone still listening? <grin>


Over on YouTube the average video is 2 minutes. In this 21st Century as harried people turn to view information, this may ‘say’ more than words.


With all this said, I am going to make an about face exception and embed this following 8 minute YouTube video by Kristie Salerno Kent.


It is not only creative but an excellent attempt to demonstrate Multiple Sclerosis symptoms and what it is like to have MS.


Not the chronic progressive type like Patti, but there was a time that Patti too went through these more common remitting remissive symptoms of MS.


[Time Alert] Stick with it, after the first two and a half minutes she visits a mall and the video becomes genuinely extraordinary.


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Sunday, July 20, 2008

caregiving: marriage, Multiple Sclerosis, and howlin' at the moon

Today, July 20th is Patti and my 23rd wedding anniversary.  


In 4 months, Thanksgiving morning will be my 19th anniversary of juggling Multiple Sclerosis spouse caregiving and basically single parenting.


Today's forecast of hot, humid, and high of 96 degrees is a perfect accompaniment for the above pictures from our outdoor ceremony and reception at the Newton White Mansion in Mitchellville, MD. It was dress up for the ceremony and bring a change of clothes for our summer picnic themed reception. 


“To have and to hold in sickness and in health …yada yadawas specifically excluded from our wedding vows that July day. Patti's choice, she had tried that vow 5 years earlier and a diagnosis of ‘probable MS’ loomed. Obviously it has not mattered. Living is more about actions.


While sorting old pictures I found ‘the words’ we did choose to use that day:

“Love one another, but make not a bond of love.


Give your hearts, but not into each other's keeping.

For only the hand of Life can contain your hearts.


Stand together yet not too near together:

The oak tree and the cypress

grow not in each other's shadow.


Let there be spaces in your togetherness,

And let the winds of the heavens dance between you.”


جبران خليل جبران بن ميخائيل بن سعد

Gibran Khalil Gibran bin Mikhael bin Saâd


Marriage when disability or chronic illness enters the relationship does not do well in the United States, 80% is the divorce rate.  Yet we are a society that rarely sees things through anyway, over half of all marriages end in divorce.


Plus with disability or chronic illness there are legal and economic reasons pro and con marriage and believe me they evolve over the years not unlike a mutated version of the 'traditional' wedding anniversary gifts.


That “hand of life” holds a lifetime of unknowns, dreams, and challenges.


July 20th is also the perfect night to recharge the dreamer in you with a glance at the moon.  39 years ago Neil Armstrong took that first small step for man, one giant leap for mankind. ... Oh what the hell, go ahead and howl at the moon! It's definitely more fun!


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Sunday, July 13, 2008

caregiving: sermon from the lost book of whining bitter people

Sunday Sermon from the Lost Book of Whining Bitter People.


When you look upon the Mountain of Problems, where do you see yourself?


For those at the top the weight of a problem may roll down the mountain.


Half way down the mountain, that stone is now a rock slide. That problem HAS your attention.


Below it roars into an avalanche of woes.


Yes, rising fuel prices are affecting everyone. For most the pain is at the pump, however the avalanche of rising fuel prices is shredding the safety nets of society.


Buried in the avalanche of woes is that rising fuel prices equal declining services for the most dependent.


Accessible vans used to transport dependent and/or senior citizens are facing municipal cutbacks, even potential elimination.


Available hours for designated “cooling centers” for summer are shrinking, “warming centers” for winter may be only memories.


(… and thank You, sister Julie in Iowa of AOL Journals Julie Loses it, My Weight Loss Journey: “Another thing, meals on wheels, they can't get people to do it now because of the cost.  They are thinking of doing microwave meals once a week. “)


Or … perhaps we are simply a whining, bitter people.


Brothers and Sisters I ask you to resist the cursing and using of the Lord’s name in vain when you next fill your tank. Instead say a prayer for OUR society’s safety nets … that they may hold.


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Thursday, July 10, 2008

caregiving: wheelchairs - confessions of a pusher

Test drive yourself, several minutes spent “in” a wheelchair is worth more than a mountain of tips. Almost every building has a loaner wheelchair available.


#1 … Communicate WITH the person in the wheelchair. NEVER just pull, push, or grab someone’s chair without communicating.


Don’t ‘loom above’, pull up a chair, squat, or kneel when talking.


# 2 … Visually inspect for any medical or safety attachments. Confirm with occupant and or staff or both when in doubt about disconnecting. Triggering an alarm is beyond annoying.


Since you will be pushing, understand the chair mechanics. Where are the brakes? Would the occupant like foot rests attached?


#3 … Keep your eyes on the road! Watch the surface immediately in front of the wheelchair as well as ahead for obstacles, slopes, unusual surfaces. … Wheelchairs are not equipped with shock absorbers!


# 4 … Ramps, curbs, curb cuts, etc. The mantra is downhill = big wheels first, uphill = small wheels first.


Yes, ‘big wheels’ first means briefly walking backwards but that is OK.  It is safer, takes less strength and creates a gentler ride.


BEFORE you pivot and both of you begin moving backward PLEASE inform the occupant of the chair what you are doing.


# 5 … ‘Tipping levers’ are extensions that protrude backwards from the rear axle of wheelchairs. Pull back on the handles and at the same time push down and forward on the tipping lever with your foot. This will balance the wheelchair and its occupant on the rear wheels.


ALWAYS inform the occupant BEFORE tipping.


# 6 … When going down a hill I have found it easier and safer to slalom versus a bee line. I confess to a couple high speed chases when I lost my grip on Patti’s wheelchair. 


# 7 … ALWAYS engage brakes when stopped.


# 8 … Remember to have fun together.


(Maybe this only applies to me but try to resist the urge to stand on the tipping levers and ride on the back of the wheelchair like a shopping cart.)


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Monday, July 07, 2008

caregiving: overdose of debt

Excerpts from Consumers Report, July 2008 issue:




“This is really the medical equivalent of subprime mortgages”


Patients' out-of-pocket medical payments are projected to rise from $269 billion in 2007 to $464 billion by 2017, according to the federal Centers for Medicare and Medicaid Services.


Some of the biggest names in the consumer-credit business are mining the area of patient and medical financing because the potential for profit is so big.


CapitalOne Healthcare Finance


Chase HealthAdvance


Citi Health Card


GE Money CareCredit

Debt by the numbers chart


“The links between the credit and health-care industries hinder efforts to control health-care costs”, says Elizabeth Warren, a consumer-debt expert and Harvard law professor. "When card issuers can make the same extraordinary rates of return on medical debt as they do on iPod and sneaker purchases, they become powerful political stakeholders who profit from escalating medical costs and reduced insurance coverage," she says. "They make health-care reform that much harder to achieve."


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Thursday, July 03, 2008

caregiving: "almost" as normal as ice cream on a summer night

Caregiving can sometimes ‘feel’ as normal as ice cream on a summer night. Well, almost …



”Rakestraw's Ice Cream Company Store has been in business for over 100 years. Come here to enjoy 40 flavors of hand-dipped ice cream … Nobody dips the dips like Rakestraw's Dips!!!!” (


… it occurred to me how much caregiving can be like the Verizon Wireless commercial with the “network” behind the customer.


Obviously we needed to own our wheelchair accessible rampvan to even be there. CVM Dodge service team keeps it working and the PATF loan made it possible.


A call ahead to Patti’s care facility insures that her Depends and clothing are freshly changed and ready for an outing. Multiple staff members are involved.


Multiple Sclerosis related symptoms of dysphagia, mental confusion, and lack of hand coordination require adaptation. A cone is obviously out of the question, and cups are just too challenging to juggle.


I simply pick up a pint of fresh hand packed ice cream and we make the couple minute drive home to enjoy. "Deer Tracks" is Patti's and Megan's favorite flavor. Probably the same as "Moose Tracks" elsewhere depends on whether moose or deer wander through your ice cream.


At home I place a bib on Patti disguised as a chef’s apron. Patti’s lack of hand coordination and dysphagia can create a mess bordering on food fight art. A dear friend, Jean Faul, makes these for Patti.


Of course the table conversation is always priceless …


Megan: “Mom, can you possibly eat ice cream any louder?”


Patti: “I can’t help it if things get stuck.” 

Patrick: “What did I just tell you to do?”


Patti: “I don’t know I forget.”


Patrick: “CHEW! Don’t inhale!”


Patti: “‘Oh yeah, you did say that.” (noticing her dish is empty and ours are not) “Where is MY ice cream?


Megan: “You just inhaled it, and very noisily!”


Patti: “Then I want a ciggy. I’m tired and want to go to f#cking bed”.


Patrick: “Can we finish our ice cream?”


Patti: “You eat too slow.”


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

Wednesday, July 02, 2008

caregiving: "people have real issues with the logistics of life"

Parent caregivers of special needs or chronically ill children, I have long held at the pinnacle of caregiving. 


In this morning’s Boston Globe is a story of parent caregiving unraveled. Our US media is only going to report the ‘dramatic’. Who knows how many families succeed daily, but we are not going to read about them.


Yet out of the text of this tragic story leapt Dr. Robert Sege, medical director of the child protection team at Boston Medical Center.


Yes, I would stereotype a Yale University graduate with both a PhD from MIT and a MD from Harvard Medical School as an academic blueblood. Yet, Robert Sege not only “gets it” but “teaches it”.


"people have real issues with the logistics of life - with transportation, with child care. Life doesn't stop just because you have a chronically ill kid."


Caring for an ill child is no easy job, he said.


"Families with healthy kids and working parents are stressed out as a baseline, and add to that going to multiple doctors' appointments, keeping track, being on time, making a child take a medication they may not want, and sometimes with chemo, the child is uncomfortable. All the chronic diseases of childhood are really difficult for families."


Is anyone listening? Families, friends, neighbors what can you do? In this story fingers get pointed and legal claims may one day assign ‘responsibility’.


Divorced parents battling, a child fights for his life


From a caregiver’s perspective perhaps the finger should point at all those who never lifted a helping hand.


Caregivingly Yours, J Patrick Leer 





(also available in Blogger edition, Caregiver Blog: "Caregivingly Yours")

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