Friday, June 29, 2007

Caregiving: a family dinner

Outings in the care facility era swing both ways, the person in need of 24/7 care and the family are enriched. 


Last night our daughter asked if I was going to bring Patti home for the evening and offered to cook dinner.


Picking Patti up I always try to engage her in conversation to evaluate how her memory and cognitive symptoms are doing on any given day. Patti was surprisingly chatty and telling me all about her parents recent trip to Atlantic City. … Only problem with her answer is that they had just returned from a week’s cruise to Bermuda.


We stopped to pick up some items for the recipe. With her memory and cognitive symptoms du jour, I suspected the grocery store could be interesting. I parked Patti near the organic vegetables while I searched and could still keep her in sight. Visually impaired she enjoys touching and picking up produce. The organic section is safest as rarely would any one be near there.


Patti was contentedly examining and “yucking” weird green things when I heard a loud yelp and the onset of a stream of cursing that would have make a prison yard proud. It was difficult to not laugh as Patti’s face and arms are all wet and she is soooo angry at the vegetables. Apparently the automatic mist came on while Patti was reaching across; startling and misting her along with the weird green things. No way was Patti going to accept my explanation. It was simpler to separate the combatants.


Back at home, keeping pace with Patti’s short term memory loss while serving cheese and crackers can get challenging if she is finished and sees you eating something and fixes you with her confused and indignant look. 


Megan prepared a delicious summer meal of boneless chicken breasts smothered in mushrooms and Swiss cheese accompanied by fresh strawberry smoothies. Watching her take the additional time to patiently cut Patti’s serving into mouth size bites before serving the meal was the difference between dinner and relaxing to the ripples of family caring flow through the evening.


Caregivingly Yours, Patrick Leer

Sunday, June 24, 2007

Caregiving: a caregiver's translation

When an outing goes well, the caregiver’s craft is unnoticeable. I thought I might invite you behind the curtain to a ‘caregiver’s translation’ of the previous movie and entry about Jubilee Day.


“… we headed out early…”

ü     two (2) care facility staff using a lift get Patti up, Depends changed, dressed, and transferred from bed to wheelchair and ready for pick up

ü     me driving our wheelchair accessible van with a ramp transport Patti.


“… street fair vendors are always fun for Patti…”

ü     Patti’s wheelchair needs to be pushed “defensively”. In crowds, people often trip over wheelchairs. With arms filled with food or packages, people cannot see a wheelchair.

ü     Because of MS visual impairment,  I need to “describe” the world around Patti to her, clearly and entertainingly.

ü     MS short term memory loss and impaired reasoning confuses many transactions. Though on the other hand, some can be quite amusing.


… enjoyed southern pulled pork barbeque sandwiches …”

ü     MS impairs Patti’s ability to hold a sandwich. I separate the pulled pork from the roll and hand her one forkful at a time to eat.

ü     Because of MS related dysphagia I must monitor her eating to insure she chews and swallows, often verbal cues are required.


Patti can never be left unattended which also means the caregiver cannot do anything independent such as visit a bathroom yourself, etc. Fortunately, our daughter accompanied us. Ever tried to carry food and drinks and push a wheelchair at the same time?


“… a well deserved and air conditioned afternoon nap …”

ü     I physically transfer Patti from wheelchair to bed to change Depends and clothing. After her nap I reverse the process followed by laundering clothes and bed linens.

ü     While such transfers place both of us at risk, I have to ‘roll the dice’ when away from care facility staff and equipment.


No matter how the story is told Patti still HAD a fun time. … Yet as Paul Harvey might say, now you know the rest of the story.


Caregivingly Yours, Patrick Leer

Friday, June 22, 2007

Jubilee Day " the movie"

Our Jubilee Day outing in “60 seconds” for those who prefer an audio visual experience.

Actually this is the way Patti “sees” our family pictures. Due to her MS visual impairment I need to transfer pictures to DVD to play on mega screen TV … and then, well why not add music?

Caregivingly Yours, Patrick Leer

Thursday, June 21, 2007

Caregiving: Jubilee Day Mechanicsburg

Jubilee Day is one of those hard to explain traditions when “more than 60,000 people” descend on Main Street of Mechanicsburg, PA for the “the largest one day street fair in the eastern United States.”


Weather always rules Patti’s involvement and today was kind of cooperative. Overnight temps were in the 60’s so we seized the chance and headed out early …


Street fair vendors are always fun for Patti because tables are at her level unlike department store counters and merchants and craftspeople give anyone more attention than a salesclerk. Where else but a street fair can you shop for a necklace based on the concept that “I want to find a bright purple necklace.”


Before Noon the baking sun had driven temps up into the 80’s. Patti’s cowgirl hat is the perfect sun hat. It keeps her shaded yet is porous enough to allow maximum ventilation and is quite stylin’. We found some grass under a shady tree and enjoyed southern pulled pork barbeque sandwiches and ice cold bottles of root beer. It doesn’t get much better than that.



Lunch is our usual targeted time to depart because heat begins to take its toll and crowds have already built to shoulder to shoulder humanity. When you are in a wheelchair all crowds mean is a world of butts to look at so it was time to head home for a well deserved and air conditioned afternoon nap.

This 79th Annual Jubilee Day honors Emergency Medical Service providers. Recording artists “Carolina Rain” will close out this year’s street fair with an evening concert on Main Street.


Caregivingly Yours, Patrick Leer

Caregiving: summer fun?

Impact of Temperature on Multiple Sclerosis


“Heat or high humidity can make many people with MS experience a temporary worsening of their symptoms. Doctors believe that this occurs because heat causes nerves (whose myelin covering has been destroyed from MS) to conduct electrical signals even less efficiently.


For reasons that are not well understood, extremely cold temperatures and changes in temperature can also cause MS symptoms, usually spasticity, to flare.


How Can I Keep Myself Comfortable?

    * Avoid extreme temperatures. Extreme temperatures may worsen your MS symptoms.

    * Use air conditioning. If hot and humid conditions worsen your MS, try to stay in cool and dry areas as much as possible. A home air conditioner may be tax-deductible for some people with MS; talk to your doctor.


It is important to remember that while climate may worsen the symptoms of MS, climate changes do not produce more actual nerve damage. The adverse effects of temperature and humidity are generally temporary.”


WebMD Medical Reference provided in collaboration with the Cleveland Clinic

Tuesday, June 19, 2007

Caregiving: thank you for caring

Sometime yesterday this journal’s hit counter moved past the “this journal has been read 20,000 times” mark. I am overwhelmed.


I can still vividly remember the loneliness when spouse caregiving and ‘basically’ single parenting began. Information was slim to none. All I found was “Mainstay: For the Well Spouse of the Chronically Ill” by Maggie Strong, and spent hours in our local library searching the New England Journal of Medicine, often with Megan sleeping in her stroller.


Al Gore discovered the Internet and I stumbled into the Multiple Sclerosis bulletin boards on Prodigy. Is there anyone old enough to remember the Prodigy sign on screen? Or having to use DOS prompts to open Windows?  


This 21st Century is an information age second to none. Yet nestled in all that information are real stories of real people, more like a neighborhood than a database. As a caregiver that is what I needed and why I share.


… and while pausing to reflect on numbers, I am also grateful for the response to our drifting into You Tube to share our story and information. Driving around for over a year now in our wheelchair accessible van only two families with a member in a wheelchair have had the chance or time in parking lots to ask to see how our van works. Yet through You Tube, in three months, over 1000 have taken the opportunity while viewing “Living with MS: wheelchair van”.


Thank you for caring. You all are wonderful 'neighbors'.


Caregivingly Yours, Patrick Leer

Monday, June 18, 2007

Caregiving: beautiful people do not just happen

A recurring funk that caregivers can fall into is the comparing or contrasting of their lives with peers, friends, or siblings. Fatigue and isolation can lead your mind down some wacky paths. After all caregiving is a parallel universe.

I stumbled upon these insights by psychiatrist and author, Elisabeth Kübler-Ross. For my brothers and sisters in caregiving the next time you slip into a funk, remember “… Beautiful people do not just happen.”

“ … We run after values that, at death, become zero.  At the end of your life, nobody asks you how many degrees you have, or how many mansions you built, or how many Rolls Royces you could afford.  That’s what dying patients teach you. …”

“ … The most beautiful people we have known are those who have known defeat,known suffering, known struggle, known loss, and have found their way out of the depths.  These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassions, gentleness, and a deep loving concern. Beautiful people do not just happen. …” 

Caregivingly Yours, Patrick Leer

Sunday, June 17, 2007

Father's Day

Mrs. Sonora Smart Dodd was the driving force behind the establishment of Father’s Day in the US. She wanted to recognize the selflessness her father had shown in raising his children as a single parent.


It was her father that made all the parental sacrifices and was, in the eyes of his daughter, a courageous, selfless, and loving man.


President Calvin Coolidge first supported the idea of a national Father's Day. President Richard Nixon signed into law National Father’s Day on the 3rd Sunday in June.


Somehow it got lost in Hallmark marketing and tie manufacturing.


Personally, it's somewhat bittersweet for me. My own father died 10 years ago on Father’s Day weekend.


From the heart and for the selflessness and love of fathers everywhere, HAPPY FATHER'S DAY!


Caregivingly Yours, Patrick Leer

Saturday, June 16, 2007

Caregiving: ABC News 'Be Seen, Be Heard'

While this email I received doesn’t really apply to ‘our story’, I thought I would pass it along to any one interested …


Dear Caregivingly Yours,


We're contacting you to let you know of an exciting opportunity!


ABC News wants to know about your family, friends & loved ones. We want to hear your care giving stories-- from the difficulties and  challenges you face caring for your elderly loved ones--to ways you've managed to make it all work.


Get your videos in by June 22nd and you may have your story shown on ABC's special series "Role Reversal: Your Aging Parents and You!"


It's easy! Here's HOW:


Click here to directly send a VIDEO:


ABC News is specifically requesting 15-45 second video comments or photos.




1) Via cell phone

     Record a 15-45 second clip and email it to:


2)  Via the web:


NOTE: Deadline for submissions is Friday, June 22nd @ midnight EDT.


We look forward to hearing from you & Thanks again for your participation!

-        "Be Seen, Be Heard" Team



Caregivingly Yours, Patrick Leer

Thursday, June 14, 2007

Caregiving: an adventure

Under black skies and with severe thunderstorm warnings, I headed out Wednesday evening to pick Patti up from her care facility and bring her home for dinner and some family time with our daughter.


Turning on the radio in our van the warnings droned on about 60 mph wind gusts, yada yada yada. Noticing that our flag pole was looking more like a limbo pole I did get out and lower the flag before driving off.


Arriving near the care facility I had to juke around a couple side roads to get around emergency vehicles blocking the main road. Once at the care facility I discovered it darkened. Even the automatic front doors had to be pulled apart by hand. Rumor had it that a tree had blown down across the power lines knocking out power and closing the road.


It was rather strange walking through the building illuminated only in emergency lighting. However, Patti was headed out! She may have been the only resident to have a warm dinner. <grin>


Later when we returned the power company had everything back to normal and roads were reopened, only the buzzing of chain saws as human beavers gnawed on the fallen tree were evidence that anything had ever been wrong. ... Unless, of course, you asked the staff. It had been a 'long' shift for them.


Caregivingly Yours, Patrick Leer

Wednesday, June 13, 2007

Caregiving: it's finally correct

Just today, June 13th, I received the first correct and updated balance due for Patti’s prescription costs. Last month in an entry “Caregiving: war with bureaucracy” I shared our 2007 version of our annual brawl over prescription plan coverage. 


What if someone in need did not have an advocate that could devote 500 uncompensated hours since the year began to just war with bureaucracy? 


In addition to the time, what if a family could not plunge $2,500 into savings or debt hoping and praying it all got settled?


What if you could not handle the stress?


I find it horribly wrong that people who are unable to defend themselves are preyed upon by our US healthcare insurance system.


I am indebted to those few people who have the character to know right and wrong and work to make it right.  


Caregivingly Yours, Patrick Leer

Friday, June 08, 2007

Truck Takes Man in Wheelchair on Wild Ride

Truck Takes Man in Wheelchair on Wild Ride - AOL News

PAW PAW, Mich. (June 8) - A 21-year-old man got the ride of a lifetime when his electric wheelchair became lodged in the grille of a semitrailer and was pushed down a highway for several miles at about 50 mph. ...

Wednesday, June 06, 2007

Caregiving: ... day care better?

Alzheimer's Quickly Gets Worse in Nursing Homes;

 Day Care Better

Alzheimer's and nursing homes are not a particularly good combination. That's the conclusion of research showing that Alzheimer's patients decline much more rapidly in nursing homes than in a community setting. The finding is sure to tug at caregivers, who often are pressed to place loved ones in homes because of the 24/7 stress of dealing with Alzheimer's ravages. … The Caregiver's Hotline

Patti has Multiple Sclerosis though deterioration of her cognitive abilities certainly qualifies many of her related symptoms under dementia. However the labeling and coding of symptoms is the busy work of medical insurance companies. From a caregiver’s perspective if it looks like a duck, waddles like a duck, and sounds like a duck … well, it’s probably a duck. 

The above article does open the door on something we have certainly stumbled upon which is the importance of maintaining involvement and outings even after the dawn of the 24/7 care facility era.

Just looking at the last 30 days on average I have Patti out or at home 4.5 days/evenings a week. On average an outing lasts 4 - 5 hours.


Unattended home care is unsafe for Patti and with her progression to near total loss of ability to participate in her own Activities of Daily Living even attended outings are physically demanding and require constant vigilance.


Certainly some behaviors are more challenging than others to work with when out. For example just last night at a grocery store while turning into an aisle and encountering side by side carts blocking the aisle, my soft spoken “Hello, could one of you please move your cart” was more than adequate to create access. Yet Patti decided to add “Move it, bitch!” with much too much volume, snapping heads around and leaving shoppers a bit stunned. … Such dementia like symptoms are unpredictable and beyond control. Plus I’m sometimes left with spontaneous and creative damage control.


Caregiving moves to a different level with the 24/7 care facility era. For the past three years I’ve intuitively felt continued involvement with the world outside is critical. Studies like the above are interesting because they seem to touch the thought that while 24/7 care facilities provide the safety needed the environment itself may accelerate progression. Families may be able to neutralize that to a degree or slow progression by remaining actively involved and getting 'out' and engaged in life.


Definitely easier said than done, in our case “on average 4.5 afternoons/evenings a week” is so much easier to type than to do.


Caregivingly Yours, Patrick Leer

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