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

http://caregivinglyyours.com/

Tags: caregiving, care facility, sleep machine, potpourri, gifts, toiletries, aromatherapy sleep

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 ...

Tags: caregiving, Multiple Sclerosis, wheelchair accessible van, IMS RampVan, Dodge Grand Caravan ES

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.

Tags: caregiving, igloo, This Is Spinal Tap, Stonehenge, Pennsylvania, Northeast Winter Storm

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!!!!

Tags: caregiving, Multiple Sclerosis, CDC, salmonella, Peter Pan, peanut butter, Valentine's Day, Northeast Winter Storm

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 …

Tags: caregiving

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.

Tags: caregiving, Multiple Sclerosis, NMSS, health care

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.

Tags: caregiving, Multiple Sclerosis, memory

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 …

                        http://groundhog.visitpa.com/

 

Shhh ! … don’t tell P.E.T.A.

Tags: Caregiving, GroundHog Day

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."

Tags: caregiving, Multiple Sclerosis, health care reform

Caregiving: "MS may be 50% more common ..."

             Multiple Sclerosis Rates Up 50%

 

Multiple sclerosis (MS) may be 50% more common in the U.S. than previously thought, according to a new research review.

 

Almost one in 1,000 people in the U.S. have MS, according to the review.  …  findings appear in the Jan. 30 issue of Neurology.

 

    * Alzheimer's disease: 67 in 1,000 people 65 or older

    * Parkinson's disease: 9.5 in 1,000 people 65 or older

    * Autism spectrum disorders: 5.8 in 1,000 children

    * Cerebral palsy: 2.4 in 1,000 children

    * Stroke: 10 per 1,000 people

    * MS (Multiple Sclerosis): 0.9 in 1,000 people

    * ALS (Lou Gehrig's disease): 0.04 in 1,000 people

   

… they say their findings show "the burden of neurologic illness affects many millions of people in the United States."

 

(click on blue headline for full article from WebMD Medical News)

Tags:  caregiving, Multiple Sclerosis, neuroligic illness

Caregiving: "I was going to help, but ... "

People who basically do nothing neither for good nor bad have been irritating other people for centuries.

 

“I was going to help, but …”

“I almost helped, but …”

“I wish I could help, but …”

 

I was reading an entry in another journal Please don't take life for granted, and I was struck by Lisa’s comments on how these non-committed offers to help really can impact people who are dependent on others.

 

As a spouse caregiver, I too have heard it way too often and could fill pages with my theories about my fellow humans.

 

I could not get through the endless phone conversations with medical insurance bureaucrats without my voodoo doll (pictured above). … When I hear, “I really wish there was something I could do to help, but …” I stick a pin in some body part of the voodoo doll. It’s kind of weird how it rattles the person on the other end when I ask them how their arm or leg or head is feeling. <grin>  

 

This ‘sin’ of non-commitment isn’t new. Almost 700 years ago the Italian poet Dante Alighieri in his masterpiece “Commedia” damned the souls of people who do not take a stand in life to their own special place outside the gates of hell. In Dante’s Inferno they are forever pursued and stung by wasps while maggots drink their tears and blood. … The mafia may be more forgiving than the wrath of an Italian poet. <grin>

 

Considering all the above … anyone may want to think long and hard before ever beginning a sentence, “I was going to help, but …” 

Tags: Caregiving, multiple sclerosis

Caregiving: Pennsylvania Farm Show

Imagine for a moment that you can never leave the person you are with unattended for the duration of your outing. No popping into an opposite sex bathroom, no just running into a store to get something, no go getting the car to bring it around, no anything where you leave someone out of your sight for even the briefest moment. 

 

Any successful outing has to be “symptom” customized. In Patti’s case plans must incorporate visual impairment, non-ambulatory, incontinence, dysaphagia, and cerebral issues such as emotional lability, memory loss, and mental confusion. Physical symptoms are reasonably manageable, cerebral symptoms are wild cards.

 

Picking the right places, activities, and customizing reduces potential frustration level which in turn reduces the chances of emotional flare ups.

 

One of our favorite yearly outings is the Pennsylvania Farm Show. It’s perfect for the above formula especially with 25 “indoor” acres to wander around (the equivalent of 19 American Football fields). Everything is extremely “hands on” so proximity is optimum for visual impairment. You not only see farm livestock you can interact with the critters. The same with produce and agriculture except that Christmas trees and pumpkins aren’t as fun as cows or alpacas.

 

We are not farmers so there is always a sense of wonder in visiting their world. And for whatever reason farm animals find people in wheelchairs apparently equally interesting. Patti particularly enjoys visiting with the goats as they futilely try to eat her wheelchair each year.

 

Oh! About the “yuk” picture. Patti has a ‘cognitive issue’ of way too loudly and rudely “yukking” things she personally does not like. Recently it has been poinsettias. We found ourselves in an indoor “field” of poinsettias which were being insulted with a barrage of loud and louder “yuks”. As I was trying to shhh Patti, I noticed the sign behind her and couldn’t resist the picture. “Mr. Yuk” is a pesticide safety program of Penn State University.

         

This pictured sculpture of the Liberty Bell and Ben Franklin is made from 800 lbs of Land o’ Lakes butter. After the Farm Show the butter sculpture was converted to biodiesel by Fry-o-Diesel a Philadelphia company which has developed technology to convert waste greases from restaurants into high quality biodiesel.

 

Hey, the more alternative fuel sources the better! Why not add those good old greasy diner aromas to the fumes of rush hour? <grin>

Tags: Caregiving, Multiple Sclerosis, Pennsylvania Farm Show

Caregiving: Why do good?

I found this interesting food for thought …

 

Why Do Good? Brain Study Offers Clues

 

“People may not perform selfless acts just for an emotional reward, a new brain study suggests.

 

Instead, they may do good because they're acutely tuned into the needs and actions of others.

 

Scientists say a piece of the brain linked to perceiving others' intentions shows more activity in unselfish vs. selfish types.  …

 

"It's not exactly empathy," … but something more primitive.

 

… a whole other brain region, called the posterior superior temporal cortex (pSTC), kicked into high gear as altruism levels rose.

 

The pSTC is located near the back of the brain and is not focused on reward. Instead, it focuses on perceiving others' intentions and actions…

 

This type of perception would have allowed humans' more primitive ancestors to quickly pick out a potential threat -- a crouching lion, for example -- from amid a mass of less important stimuli.

 

The bottom line … is that altruism may rely on a basic understanding that others have motivations and actions that may be similar to our own.”

 

(click the blue headline for the full article)

Tags: caregiving

Caregiving: level of disability

Multiple Sclerosis complicates labeling because physical and cognitive symptoms progress differently in each person. Yet a numerical level of disability and ability is needed and used for communication within the medical profession. 

 

Numbers can be difficult to wrap your mind around. Pictured below are more visually oriented graphs of Patti's MS progression and resulting disappearing abilities. 

            

Neurologists use the Kurtzke Expanded Disability Status Scale (EDSS) specifically for MS. Overall “level of disability” is scored on a scale from 1 to 10, with 1 being the least. Patti’s disability scores in the upper levels at 8.25.

 

Activities of Daily Living (ADL) - bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are commonly evaluated on the Modified Barthel Index of ADL on a scale from 0 to 100, with 100 being “independent”. Patti’s 'abilities' score in the lowest percentiles at 10.

 

I believe it is advisable to periodically “quantify” Patti’s level of Multiple Sclerosis progression; and to ‘remind’ myself, family, friends, and readers of her dependence on others in measurable terms. 

 

Not everyone with MS may have this same level of disability. However, "Everyone will one day know or love someone who can no longer take care of themselves." (Maggie Strong)

Tags: caregiving, Multiple Sclerosis

Caregiving Metaphysics PROGRESSION

Progression drives caregiving and that frustrates the hell out of me. Multiple Sclerosis’ unpredictability has thwarted most of my attempts to anticipate it. “Psychic caregiving” might work, but I’m not that gifted.

An enigma of caregiving is that I’m locked in a fight I know I cannot win, while progression constantly ups the ante.

“Keeping Patti at home” was such simple sloganeering in the early years. Remodeling regularly to adapt to physical progression, and just raising the bar on my limits of endurance stayed the course for the first 7 years.

Progression to the double whammy of bowel and bladder incontinence and “dementia like” symptoms was the turning point. Our daughter and her friends returning from elementary school each day were encountering too much for kids that age to have to cope with. Patti’s cognitive symptoms prevented her from directing her own care and basically made part time homecare helpers impossible to incorporate into daily living.

Somehow for another 8 years, basically on my own, I still managed Patti’s care and the environment to keep the house a home. Progression however kept increasing “at risk” situations for Patti. It was more than scary when Patti started a fire on the kitchen stove while unattended. Catheters were experimented with but Patti would get confused and pull them out. Our new “physically” accessible home boomeranged on us as cerebral symptoms rapidly progressed. Falls actually increased, and Patti was pulling things down on herself. She was getting outside confused and disoriented.

Time was my kryptonite and after 15 years of “keeping Patti at home” Patti and I jointly explored and decided on the transition to the 24/7 care facility era. Patti has never expressed a doubt about the decision.

Nor have the nearly 3 yrs of the 24/7 care facility era been an end. ‘Hands on’ caregiving continues to occupy at least 40 hrs a week. The majority of afternoons/evenings each week I bring Patti home or out before transferring and ‘tucking’ her in to bed by myself at her care facility. This phase has been about evolution to professional team care and most importantly safer care.

Progression is the only constant in caregiving. It relentlessly crushes home caregiver motivation, inspiration, or whatever. I can not ‘sugar coat’ that reality. … On the other hand, if you can appreciate the esoteric reward from finishing your morning coffee then running full speed into an ever higher brick wall day after day, year after year, you will do fine. It can be done.

('series' to be continued ...)

CaregivinglyYours.com

Tags: caregiving, Multiple Sclerosis

Caregiving: Spring Weekend in January

After 61 years the record for high temperature on January 6th around here was shattered on Saturday peaking at 69 degrees. 

 

(Global Warming? Well, for Al Gore abnormally warm winters in the East certainly are not good personal omens. The last time it was this warm in the beginning of January was the year George W Bush was born. <grin>)

 

We seized this extraordinary Spring Day in January to do some scootering around City Island in the Susquehanna River. Over the last year, I help Patti to navigate with her progressing visual impairment by “follow my voice”. Of course, I’ve developed a dodge step, like a matador, to our routine. … It was Megan’s first experience as Patti locked in on her voice for scooter navigation. I forgot to warn Megan. <grin>

         

Colorado’s snow was nothing but rain by the time it hit our Spring temperatures and drowned the rest of the weekend. We adapted by playing indoors and enjoyed a final weekend with our Christmas Tree, our daughter’s last full weekend home from college, and the Philadelphia Eagles on TV advancing in the NFL playoffs.

 

Watching a TV football game with Patti especially one that goes down to the final play of the game has a special dimension because her MS related short term memory loss and mental confusion can send her rooting for any team, even teams that are not playing. <grin>

 

Getting an 18 year to participate in family pictures is more challenging than grabbing our cat as her designated stand in. (Notice the proper method to hold a squirming unhappy cat with extended claws away from exposed flesh <grin>.)

         

 

One of the Philadelphia Eagles players in response to a reporter’s question about continuing to overcome their season of adversity gave a sound bite answer that struck me as being larger than the game or even good advice for daily living … “We cherish every moment we get to play.” 

 

Caregiving: choking / dysphagia

Holiday gatherings bring out the old pictures and tapes. This year a gem was rediscovered in a video tape of a 1999 news story featuring Patti and her parents.

 

Patti was choking to death … now in a little over 2 minutes the ‘magic’ of You Tube will retell the story and happy ending. Double click to play video.

Megan and I were home in Maryland when this occurred. 

 

On the MS progression timeline dysphagia was a remitting / reoccurring symptom in early 1999. Multiple Sclerosis can be dangerously deceptive. Accepting MS progression is challenging for family and friends as it is for the person with MS. “To care” demands vigilance.

 

Regardless of disease or health, emergencies will happen. Knowing how to ask for help and how to listen CAN save a life.

Christmas 'road trip'

“Living with MS” as a family has always been challenging but the future of “family” is enigmatic with Patti’s increasing progression in 24/7 care and Megan now living away at college. In another year who knows? ... Why not try a FAMILY 'road trip'?

 

Why Philadelphia? ... One reason is that among all the many celebrations of Christmas is that “we the people” seem to forget that our freedom pivots on Christmas and the Delaware River. On Christmas Day 1776 American rebels crossed the Delaware River just north of Philadelphia in freezing snow blind weather and reversed the tide of our Revolutionary War.  …   How different was your Christmas Day in freedom 230 years later?

 

Traveling with Patti is about traveling with Multiple Sclerosis. More specifically MS with a level of disability creeping ever closer to 8.5 (MS is measured on a scale of 1 to 10).

 

At her care facility she is assisted in activities of daily living by two attendants and a variety of cool mechanical lifts. “On the road” it’s just me and ever changing unknown environments.

 

Frankly the most intimidating to travel are MS symptoms of total bowel and bladder incontinence Once a person crosses a certain threshold of cognitive challenges catheters are no longer an option. Patti once ripped out a Foley catheter with no memory of how or why. And while obviously a guardian angel kept her from rupturing herself, it did end the catheter era.

 

Incontinence caregiving demands physical strength and creativity. It also centers your day around both the periodic and spontaneous need to change Depends, change clothing, and often shower. You need to find a way and the time to do laundry on the road. Keeping in mind that Patti can never be left unattended, it may seem overwhelming.

 

If you want a family activity you accept family for all that it is. As a caregiver you do not simply “fit a square peg into a round hole”, or “think outside the box” … you have to constantly reinvent the damn box. <grin>

Christmas 'road trip' - Dec 22

Homer should be writing this entry as it seemed the gods were determined to actively disrupt our departure.

 

Our timetable first collapsed under the double whammy of hurting my back with the first solo Depend change at home while packing, then an almost simultaneous disabling Cluster Headache. 

 

Inches of rain continued to fall as I rolled Patti in an out of the van for last minute scatter brained errands.

   

Finally with the van fully loaded with suitcases, electric scooter, and Patti secured in her wheelchair I turned the ignition key only to discover clicking noises instead of the roar of the engine. … Hours ticked futilely by as I unloaded eveything and tried to arrange for service and towing on the Friday before Christmas weekend. Grrrrr!

 

Instead of Philadelphia, Patti and I spent Friday evening with a bag of Wendy’s food in the waiting room at National Tire and Battery. Patti kept the spirit alive pointing out that it was a treat to have Wendy's. She couldn't remember when she last had a Wendy's burger. Pausing to glance around she added, "but my memory is terrible, I don't even know where we are." <grin>