Friday, February 23, 2007

Care facility gift shop suggestions

If I were to open a gift shop for family and friends visiting anyone at a medical care facility, some of my suggestions would include …

Artifical flower arrangements! ... Cut flowers soon to ‘die’ are not the best thought out gifts. Living plants aren’t much better. They demand ‘care’. Staff already has plenty to do with patients.

Toiletries are gifts! Facility or hospital provided toiletries are boring. Tasty brand name toothpaste, deodorant, a favorite or nostalgic after shave (Old Spice, Bay Rum), a fun scented body mist spray, hand lotion, and ‘real’ facial tissue, etc. are MORE than appreciated.

Socks ... are a fashion statement when you spend your day in a wheel chair, because pants' legs ride upwhen sitting all day. Patti likes her socks ‘loud’ and comfy. (TIP – Check the sock ribbing. Tight is bad, comfortable is what it is all about.)

Potpourri can create an oasis. Incontinence and health problems generate odors and facility air circulators take time to work. A basket of fresh potpourri in a room is marvelous. We stock up on ‘holiday’ potpourri at Christmas time and simply refresh Patti's basket regularly. 

Sleep machines with under pillow speakers are perfect for blocking out institutional noises or competing sounds of other patients. Radio Shack offers models in the $20 range or you can spend over $100 for designer type models. They all work exactly the same surrounding your head in choices of soothing sounds (falling rain, surf, rolling train, etc) assisting sleep.

Aromatherapy ‘sleep’ pillow spray takes the edge off institutional starched clean pillow cases and helps surround your loved one in a personal sleep atmosphere. A super comfortable personal pillow makes a great additional gift. Institutional pillows suck!

Febreeze or any fabric odor neutralizer is thoughtful. Unlike a chair in a home, a wheelchair is lived in and the chair and cushion can use daily freshening up while the occupant sleeps.

A Permanent Marker for labeling ALL personal items ‘prevents’ disputes.

An Oversized Wall Calendar is ideal for tracking visitors, outings, upcoming family and personal dates and easily viewed. Helpful both for visitors and the patient when memory is a challenge.

Caregivingly Yours, Patrick Leer

Wednesday, February 21, 2007

Caregiving: accessible van (sleigh ride)

Last week's Valentine’s Day 2007 snow was our first winter storm owning a wheelchair accessible van. (2002 Dodge Grand Caravan ES / IMS RampVan Conversion).

Dashing through the snow

In a (wheelchair accessible van)

Through the (streets) we go

Laughing all the way.

It’s no SUV, but with the extra vehicle weight from the lowered steel floor and four Michelin Hydroedge 17” tires traction was excellent in snow and ice.


Icing of the door track was the only major problem. For the ramp to unfold the door must be able to slide open. It took significant time to clear not just the couple inches of ice and sleet from the roof of the van but from all the grooves and niches of the sliding door track.  


Like a mechanical bird unfolding a wing, we need at least 4 ft clear on the passenger side for the ramp to unfold and to successfully roll Patti out in her wheel chair. … Plowing of parking lots, store fronts, streets, etc obviously creates piles of snow. In general, they are either too high to ramp across or too uneven to ramp onto. … It just takes some cruising around to find an optimum spot.


The ramp itself has some space age surface that is NEVER slippery which is great when you are the one pushing someone up and down the ramp. <grin>


In past years with Patti’s Multiple Sclerosis progression, transferring from wheelchair to car was treacherous on snowy and icy surfaces. Now she’s bundled up comfy in her wheelchair and it’s just a matter of pushing Patti up the ramp into the comfort of the accessible van.

Bells (as the ramp folds up) ring

Making spirits bright

What fun it is to ride ...

Monday, February 19, 2007

Caregiving: more ice chopping

Pictured I’m enjoying a coffee break during igloo construction or otherwise known as playing while chopping my back patio clear of ice and sleet. 


Finally finishing the driveway, paths needed to be to chop clear to the trash can bin and the bird feeder.


Sizeable blocks of ice enabled me to give my igloo a Stonehenge facade as pictured below …


As I dragged the facade into place I found myself chuckling over a scene from the film comedy classic “This Is Spinal Tap”, “I think that the problem may have been that there was a Stonehenge monument on the stage that was in danger of being crushed by a dwarf. Alright? That tended to understate the hugeness of the object. …” … Funny how we can remember movie dialogue at the strangest times.


Anyway, still chopping away from South Central Pennsylvania … and LOVING Winter finally arriving.

Friday, February 16, 2007

Caregiving: ice ice baby & peanut butter

This Valentine’s Day Winter Storm has been interesting to say the least.


As if driven by premonition Patti and I went out for lunch early in the storm in picturesque falling snow. We gained a giant helium balloon that when tapped sings a couple bars of “How Sweet It Is To Be Loved By You” (the old Motown version). … I’ve found over the years that charmingly annoying Valentine’s presents are remembered, <grin> especially when Multiple Sclerosis robs your memory.


Later I was to find my driveway and car encased in ice! No shoveling of the driveway, no snow angels! I had to chop my car out and chop my driveway clear. Pictured below are some samples of the approximate 2 ft polygons of ice varying in depth from 2” to 4” that I methodically chopped with my garden spade and carried to my lawn.


 … If I had fallen backwards onto my frozen lawn to try and make a snow angel I would have suffered a concussion. <grin> … Of course, don’t you just love it when you get the driveway clear and the snow plow deposits a wall of ice and frozen sleet blocking your driveway? I felt like I had moved an iceberg. 


To top off the experience, Peter Pan tried to poison me! There is nothing like a good thick peanut butter and jelly sandwich when fighting a winter storm. One tasted sooooo good I fueled myself with several. … Shortly I found myself fighting the storm while drinking a bottle of Extra Strength Mylanta for a sudden, unexplained severe attack of gastrointestinal distress to pain. … Watching the news Thursday evening I noticed a story about the CDC and salmonella in Peter Pan peanut butter which displayed the control numbers from the shipment beginning with 2111... Checking mine, sure enough my now "nearly empty" jar was from the contaminated batch. Is nothing sacred!!!!

Wednesday, February 14, 2007

Caregiving: remember the 'good guys'

Living with the failing US healthcare bureaucracy it’s also important to remember the people who wear the proverbial white hats, the ‘good guys.’ They are out there, whether serving as doctors, nurses, aides, med techs, or hourly computer office workers. 


There are plenty serving the ‘dark side’, but do WE do enough to say thanks to those who wear the white hats?


In a comment to my previous entry, Jaymi of AOL journal Throw Me A Bone mentions she’s sending her nurse practitioner cookies “because she's the only one who returns phone calls promptly”. … That’s the spirit!


Whenever I visit my nurse practitioner's office I try to take a bag of sugar free Hershey candy to add to the office bowl of treats they have at the check out counter. … It’s not much but it says thanks, and buys miles of good will.


Since Patti’s admission to a care facility we have given a Christmas present each year of a three month fruit club to the staff on her unit. A delivery of a couple pounds of oranges and tangerines can easily be shared between all the staff members of the three shifts.


“Thanks” can be as simple as a thank you card following an appointment or a letter acknowledging a particularly helpful or courteous staff member. A letter ending up in someone’s employee file you can believe is “remembered” and appreciated.


Time itself can be a gift. Rather than call for RX refills which not only ties up phones but pulls office staff away from patients to write down my needs, RX numbers, pharmacy number, etc. I simply fax the office with a brief one page fax including all necessary information. … I’ve never found a medical office staff that did not appreciate this simple courtesy.


Do unto others …

Saturday, February 10, 2007

Caregiving: battling bureaucracy

     Battling the healthcare bureaucracy occupies too many days.


The hours of a futile day end too quickly yet the clock never seems to change through the night as I wait for hourly employee bureaucrats to return to their offices and phones. Weekends drift through dangling conversations as thick as Spanish moss. 


Many People with MULTIPLE SCLEROSIS Report

Financial Strain Related to Health Care


“A Harvard-based study … commissioned by the National MS Society … published in the journal Multiple Sclerosis (1/29/2007) found that many reported …

·        high levels of stress and difficulties related to affording health care services and medications.

·        spending less on food, heat and other necessities to pay for health care needs

·        not filling prescriptions or skipped doses of medicine

·        worrying “a lot” about losing or not having health insurance and about whether their health coverage might change.


While I guess statistical solidarity is reassuring, I KNOW that because Patti's cognitive symptoms prevent her from fighting for herself, in 2006 I spent over 1000 hours battling the insurance bureaucracy. From September of 2004 through August of 2005 I logged 2000 hours in my day planner (I’ll do the math for you - that’s a full time job). 2007 is shaping up to be another donnybrook.


Additionally, the care facility era is about teamwork and not all players are as experienced and committed.  


Whether “private” or “government” the bureaucracy of health care forces you to get into the mud and fight for everything when you live with a chronic progressive illness. … Why? I believe after two decades that the business of medical insurance would prefer Patti to just go away.


In frustration I often wonder how many bars of “Pontius Pilate Hand Soap” are in bathrooms across the U.S.? … Millions of Americans have retirement plans with stock portfolios of insurance, pharmaceutical, andhealthcare companies. Directly or indirectly they “expect” profits. Who is the bigger part of the problem, stock holders or the hourly employee bureaucrats, just doing their jobs?


As long as our US health care system is driven by profiteering it will never serve any master except profit.

Saturday, February 03, 2007

Caregiving: snow falling on memories

“It's a poor sort of memory that only works backwards,” observes the White Queen in Alice Through The Looking Glass. If you are reading this, then that is basically how your properly functioning memory works. Scanning methodically backwards searching for any recall you may have of Alice’s encounter with the White Queen.


Once cognitive symptoms begin to affect memory unpredictable things happen.


With a brief snow shower Friday afternoon I picked up Patti for a ride in the falling snow. 


Suddenly, Patti surprised me by talking about her skiing days. Riding in the falling snow reminded her of riding to Ski Round Top. … I say this surprised me because those are long term memories, certainly longer than I have ever known her. Additionally Patti is rarely chatty any more, mental confusion symptoms challenge conversation. Yet oddly in recalling these longer term memories her ability to communicate was smoother. 


With progression of her Multiple Sclerosis related memory symptoms it is more and more common for long term memory to kick in more vividly than shorter term which is a mess.


Another example is when her parents play Trivia Pursuit and involve Patti. She can be astounding at times recalling isolated “trivia” from long term memory. Yet she can not tell you where our daughter attends college today.


Malfunctioning memory is more than just baffling. Memory lapses or warps between present and distant past can easily place an unattended person at risk. Plus there is always the emotional aspect for family and friends of “lost” shared memories or even your own existence in another’s memory.


It is easy to get hampered by our “poor memories that only work backwards”. It takes understanding, creativity, and  sometimes luck to work with progressing memory challenges.

Friday, February 02, 2007

Happy GroundHog Day 2007

Happy GroundHog Day from “high tech” Pennsylvania where furry rodents are dragged from their sleep to predict the weather!


At Gobbler’s Knob in Punxsutawney this morning the “Prognosticator of Prognosticators” has been interpreted! Phil predicted an early spring.


It's kind of sad since I haven't even seen "Winter" or any snow yet.


For more than you may ever want to know about this tradition you can visit …



Shhh ! … don’t tell P.E.T.A.

Caregiving: health care reform

New York Governor Eliot Spitzer (D) revealed his plans for a "patients first" reform of health care.


California Governor Arnold Schwarzenegger (R) unveiled his plan for universal health-care coverage.


Pennsylvania Governor Ed Rendell (D) is touting his ultimate goal of providing medical coverage for every resident while reducing health care costs statewide.


40% of the Electoral College votes necessary to elect a President are held by these three states. … Is it any wonder that Presidential candidates of both parties are banging the health care coverage drum across the USA?


It’s nothing new that health care gets dusted off every Presidential election and then forgotten. However I don’t believe I can remember Governors of 3 of the most populated States going to political war over health care coverage.


If you have coverage, at the moment, then this may all seem like such a non-issue wrapped in a possibly false sense of security.


If you don’t or if the ever increasing costs are shrinking your personal or family resources than you know how critical this issue is and will be for everyone.


It’s complicated, the deck is stacked, and genuine reform can seem overwhelming.  ... In 22 years of living with Multiple Sclerosis as a family we’ve known too many 'masks' and 'faces' of health care coverage and prescription plans.


Is this finally the time someone cuts the Gordian Knot entangling this mess? I'd like to hope so.


"The key thing is not to get caught up in ... how you get there," Gov. Schwarzenegger said. "The key thing is, we're going to get there."

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