Caregiving: Disney & accessibility

     In a comment a question was raised about Disney World and accessible rides. Yes Patti has been to Disney World, a couple times in varying levels of MS progression. 

     I should qualify “a couple times” before anyone thinks we are jet setters. <grin> I was raised on the Mickey Mouse Club and while my college contemporaries partied on the beach for Spring Break; I was in Orlando for the opening of Disney World. I'm addicted.

     From experience I can say that prior to Annette Funicello’s public disclosure of her diagnosis of MS and her level of disability that Disney World was “not” as accessible as it is today. Coincidence? Who cares? Both Disney World and Universal Studios are now state of the art accessible.

     One of my fondest memories involves Disney World, and an accessible cruise on “It’s a Small World”. Disney outfitted special boats for wheelchairs, scooters, and companions. Something like every 10 boats was outfitted this way. There was no conventional able bodied seating on the boats, so if there were no other disabled riders then you basically had the boat to yourself. Patti hates the “It’s a Small World” ride, and I love the ride. She agreed to allow herself and wheelchair to be exploited so I could avoid the long line and agreed to go on the “stupid ride”. … We were cruising through the ride and with no one else in our boat, I was free to sing along with the dolls over Patti’s objections. Then the greatest thing ever happened, a true Disney miracle … the ride broke down! We were stuck in Disney heaven!  … A “voice” announced for your entertainment pleasure while waiting that the famous “It’s A Small World Dolls” would remain singing. YEAH! Of course, now I had to sing along to drown out Patti’s curses and threats! It was over 30 minutes of non stop “It’s a Small World” until Disney staff came wading up to rescue Patti and pull our boat to the exit.   

     Now on the other hand when Megan wants to ‘use’ her Mother and ride something like Space Mountain with her twice because disabled riders and companions get to ride twice Patti is always up for that. <grin>

     All in all most major amusement parks are fully accessible within common sense. Frankly I used to feel somewhat uncomfortable because sometimes accessibility privileges seemed a bit unfair to those who had stood hours waiting in line to ride a popular ride. However that’s all a moot point any more with the innovation of time stamp ride passes for the most popular rides because long waiting lines exist only in nostalgia.

     What has stopped us from visiting Disney World anymore is “attended care”. Surprisingly no major park offers such care. Childcare is offered but no adult day care. Patti simply cannot endure a full day, especially weather like Orlando, FL and I cannot leave her alone in a room to nap. I was increasingly between a rock and a hard place as to what to do to accompany our daughter in the Park yet enable Patti to get rest.

     Even hiring a companion for the Park was not available the last we researched it. For example, if I wanted to get in line with our daughter for one of the more thrilling rides or even go on “It’s a Small World” which Patti will never again go near. I have to leave Patti unattended and she will very shortly get confused and roll off. Disney World is a big place.

     There are also incontinence concerns. “Family restrooms” are never equipped to lay a person down. Yet a person as disabled as Patti dependent on others for 90% of her Activities of Daily Living requires a changing area for Depends and clothing the size of a bed. We would have to stay in lodging with the absolute closest proximity to the Park (the most expensive). Should incontinence become a factor when I wasn’t immediately present the companion would have to affect the necessary changing. This is a physically demanding task. At Patti’s care facility this involves two staff members and a lift, though being macho I do manage it myself. <grin>

     Attending any amusement Park with progression of Patti’s MS has become MORE than just the accessibility of the rides. We knew how MS could progress and jammed multiple family visits into the early years. Those trips are treasured.

     It doesn’t matter whether you are living with a chronic illness or able bodied you are only given today with your family. … and it really doesn’t matter where you make the most of it.

“It's a world of laughter

A world of tears

It's a world of hopes

And a world of fears

There's so much that we share

That it's time we're aware

It's a small world after all”

Caregiving: "just seen it"?

     Sunday I walked out of Patti’s care facility to find Patti and Megan enveloped in laughter. 

     Hearing we were going to see “Superman” Patti became suddenly disappointed believing she had “just seen it”. With her symptoms of memory loss and mental confusion she can get stuck between the present and long term memory, in this case the late 80’s (the last Superman movie was 1987). Megan who has never seen a “Superman” movie in a theatre thought Patti meant she had “just seen it” this weekend. The more they talked the more confused they both became until all they could do was laugh.

     It's easy to fall into such conversations with Patti. A movie or a song can be ‘new’ to our daughter’s generation but actually is a remake or a ‘delayed’ sequel. Through Patti's MS related memory loss and dysfunction, what’s ‘remake’ got to do with it. <grin> All you can do is laugh and enjoy a truly special moment of wondering what you are even talking about. 

     They were even confusing me and I’m old enough to remember George Reeves as Superman / Clark Kent on TV in the 50’s.

     It was a fun outing spent with the latest incarnation of that “mild-mannered reporter for a great metropolitan newspaper, who fights a never ending battle for Truth, Justice, and the American Way.”  

     You cannot not like a Superman movie, unless, of course, you’re Lex Luthor. <grin>

Caregiving: modern bulletin boards

     At parent orientation one of the “transition tips” promoted by the university was to place copies of your student’s class schedule in your car, at work, and at home. After the first month of classes call them on a “beautiful Fall day” on their cell phone during the class they dislike the most. If they answer ask them why they aren’t in class and if you get voice mail, thank them for attending on such a beautiful day. <grin> 

     Through the years of Elementary & Seconday Education, I’ve taken ‘class schedules’ one step further. I scan them into my PC and make them my computer’s desktop background. Whenever I  minimize whatever I’m working on or switch programs, instantly I can “see” with a glance at the clock in the taskbar exactly when and what Megan is supposed to be doing.

     As chaotic as balancing spouse caregiving and basically single parenting has been, being able to periodically focus throughout the day on what Megan is doing, and when, during the school day has helped me to try and communicate better. For example, “I guess Calculus was useless today with the snow beginning to fall at the start of class.”

    Once upon a time, it was the refrigerator in the kitchen, but now days your PC’s desktop background is the best of possible bulletin boards.

Caregiving: another piece of the puzzle - college

     On the family shelf of college mascots we can now place a Golden Ram.  Yesterday was parent and student orientation and another piece of not only the puzzle of living with MS as a family but also of the ‘dreams’ came together. While the travel distance and program duration made Patti’s participation impossible, it never would have happened had Patti not committed herself to this goal. Another day and time, we’ll create our own custom made visit with Patti.    

     Caregiving, sooner or later, becomes a generational concern. Living with Patti’s Multiple Sclerosis as a family is not the “government statistic” that tells us that the average length of time spent on caregiving in the US is 8 years. These statistics are skewed because terminal illness is lumped with chronic progressive and remitting remissive illnesses. 

     24/7 assisted care, or the care facility era, was something Patti and I often talked about when Patti had better control of her cognitive functions. The generational concerns of caregiving were important to Patti. She wanted to empower Megan’s future as best as possible.

     Continuing homecare was not only increasingly unsafe for Patti but increasingly the odds were high that my health and well being were at risk as a solo 24/7 spouse/caregiver. If anything were to happen to me, Patti’s 24/7 caregiving needs would fall on Megan. Patti’s physical and more importantly cognitive progression was racing toward a collision course with high school graduation and/or college enrollment. Patti fondly remembered her own college years as a “Nittany Lion” at Penn State and the following young adult years and did not want Megan to begin life as a 24/7 caregiver for her Mom.

     Together we began exploring the economics and process of 24/7 care facilities BEFORE necessary. MS progression seemed to read our minds and forced the issue within a year of when our research began.

     Listening to all the “tips” yesterday, I realized just how unique our family is. I just hope Megan doesn’t go into culture shock surrounded by thousands of able bodied people <grin>.       

     As if an omen, after days of rain and rivers cresting all around, on campus it was a magnificent sunny day while a couple hours away Patti woke up safe and attended and went for a roll enjoying the same marvelous weather when her folks dropped by to visit. Sometimes plans do seem to work out!

Caregiving: Water, water, everywhere ...

     This picture is of our favorite park where Patti roars around in her scooter. We thought we would take a break while the sun was out – only to find our park was now a pond. <grin> Since my last post of lightning in the night sky, 7 inches of rain has fallen in our town.

      Nestled in the Cumberland Valley we’ve dodged, so far, the deluge dumped on areas only a hop, skip, and jump away.  Of course a break in the rain is always dangerously misleading, now it all has to flow somewhere. Runoff floods creeks which flood streams and so on until the Susquehanna River overflows its banks.

     The sudden unpredictability of weather always affects caregiving because able bodied and disabled people have different abilities and therefore options when it comes to reacting. “Boil Water Alerts” and “Safe Water” distribution centers sound so simple, but are they if you are challenged physically or mentally – or dependent on others for transportation?

     There is NOTHING anyone can do about weather, except always be prepared. Have basic emergency supplies on hand and a plan or two thought out. After all a beautiful summer’s night lightning show might not just be a passing thunderstorm.

Caregiving: stalking the Thunderbird

     With thunder booming, wind wailing and pelted with hail and rain you have to stand your ground when stalking the legendary Thunderbird. … Oh, and don’t forget to click the camera.

     What does this have to do with caregiving? I have no idea … but it sure was fun. <grin>

Caregiving: Personal Health Record

     I’ve frequently discussed the critical need to computerize medical records as a caregiver. Over the years, my ability to simply take a disc out of my ‘man purse’ while accompanying Patti on an appointment to share some previous test result, etc on a physician’s PC has not only saved time and money but improved the quality of Patti’s appointments especially with specialists.       

     While recently reading some related articles I learned about a site that even offers personal health record ‘tools’ both for free and download purchase. I can’t endorse one way or another as I’ve never tried these products but I know some people like “forms” and “tools”. You can check it out at 

                               http://www.myphr.com/

(PHR=Personal Health Record, sponsored by American Health Information Management Association.)

Caregiving: John Henry Syndrome?

     Maybe I still suffer from a bit of a John Henry Syndrome or still need to compete as a solo home caregiver vs. a professional 24/7 care facility. Who knows? (And why when getting distracted in the American mythology of man vs. machine do I always forget that heroic ol’ John Henry did drop dead in victory? – Must be a guy thing.) 

     It takes machines such as lifts to transfer Patti and multiple people to bathe, change, and dress her. Food preparation requires planning and cutting up in bite size pieces. Eating has to be attended and assisted.

     Machines such as alarms monitor her both in her wheelchair and bed to reduce the chance of falls when cognitive problems and mental confusion might cause her to try something she cannot do.

     Multiple staff enable not only support for the machines and to prepare future activities and meals but simultaneously provide companionship and attention.

     Progression of Multiple Sclerosis can be overpowering. Looking at her 24/7 care facility schedule for today and tomorrow, I can honestly say that even in my most egocentric moment that I could not compete. I’ve learned to “supplement” their best with my best – building something even better.

     Monday

Breakfast: OJ, pancakes with syrup & margarine

09:45 exercise … 10:00 cookies & juice … 10:15 bowling

Lunch: chicken croquettes, baked potato, carrots, pumpkin mousse 

Nap … 02:15 cake baking … 03:00 room visits

Supper: potato soup w/crackers, hot ham & cheese sand. ice cream

06:45 movie & games

07:30 PM (Patti’s preferred bed time)

     Tuesday

Breakfast: OJ, cheese omelet, toast w/margarine

09:45 exercise … 10:00 cookies &juice … 10:15 Bingo

Lunch: open faced hot beef sandwich, mashed potato, cream corn, coconut cream pie

Nap … 02:15 strawberry dessert contest … 3:00 book club

Supper: BBQ riblet sandwich, pickled egg & beets, pears & peaches

07:30 PM (Patti’s preferred bed time)

     Though not printed on her schedule, usually her parents visit with Patti for a couple hours on Monday afternoon and on Tuesdays I usually bring her home or take her on an outing from after her nap until bedtime.

     American mythology has to be heroic man vs. something; after all we are the “Cowboys” of the world! However I am finding that in this 21st Century that “to care …” might not only be safer, but better through teamwork. 

Caregiving: Jubilee Day 2006

     Today was JUBILEE DAY in Mechanicsburg, “the largest one day street fair on the East Coast”. Normally just the June heat and humidity in the Cumberland Valley prevents Patti from attending. This picture (without our disembodied heads superimposed) was snapped a half hour “BEFORE” the fair actually even opened. You can imagine how challenging the street is to navigate in a wheelchair.

     For the second consecutive year Jubilee Day began with “Spring” weather and temps in the 60’s so we seized the opportunity. (Shhh! Don’t tell Al Gore it would ruin his day to hear that June is getting cooler. <grin>) For those living with MS a Spring Day in June is a Godsend!   

     Picking Patti up from her care facility at 9 AM she partied in the streets until after 2 PM! I was amazed. It must have been the pink cowgirl hat that kept her in constant shade. <grin> That is an extraordinary amount of time in the sun and outside for Patti. Plus the sheer volume of visual, audio, and cognitive stimuli was more than she processes in a month. Yet she handled it all in a good and festive spirit.

     Shopping for jewelry at vendor booths is something she enjoys but is obviously challenged by vision and difficulty in conversing with busy vendors who have no patience for shoppers with no memory. <grin> Though sooner or later she always finds the “right” person. Today that was a Native American booth and turquoise. Once the salesperson realized Patti could not really see nor handle a traditional exchange, he came out to her with a box of jewelry to try on. Soon they are chatting like old friends about the “energy” of jewelry and were off on tangents that lost me almost immediately. I was amazed that Patti ended up with two very nice bracelets for less than I expected to spend all total and now one wrist has Hopi energy and the other Navaho energy. Don’t ask me what any of it means. I was just impressed to watch Patti engage in that lengthy of a conversation and negotiation.

     Almost like hitting a brick wall, shortly after 2 PM Patti was suddenly ready for bed! <grin> I got her back and tucked into her room for a well deserved afternoon nap. Shifts were just changing and I convinced everyone to let her nap through to dinner.

     I had forgotten some stuff in Patti wheelchair back pack and had to return to her room about dinner time. She was still so exhausted that the staff had decided to bring her dinner in bed. She was propped up in bed being fed dinner … and “showing off” her new bracelets to the evening staff. <grin> Her after dinner plans were to immediately go back to bed for the night. 

     MS fatigue is exhausting but some days that can be a totally pleasant kind of exhaustion.

                   

Caregiving: two furry amigos?

     Cleaning out some files I rediscovered this picture, which I always thought would be a perfect NYC tourism poster <grin>. It captures the indomitable, and often paradoxical, but always unique spirit that is New York City.    

     Through out the years I would take Megan on “able bodied” trips and such because besides “living with MS” in the family she also had to learn to grow up and live in the “able bodied” world. … and there is a difference.

     In the able bodied world impulsive decisions can actually be fun. Family outings with Patti were dominated by methodical planning and preparation. We believed she should grow up “knowing” and experiencing both.

     One beautiful “Spring” morning in January we jumped on a train for a day trip to NYC. We were enjoying a street vendor lunch, sitting on the wall of Central Park South, directly across from the fabled Plaza Hotel when I snapped this picture of two furry amigos, a squirrel and a rat.

     Somehow I don’t think the richly expensive Central Park South hotels advertise this view of Central Park. <grin>

Caregiving: what a long strange trip it's been

     Friday night was a significant landmark in our journey of living with MS. Our daughter graduated from high school.

     16 and a half years ago when Patti’s first major MS exacerbation left her knocked out of the ‘hands on’ side of parenting we discovered a book, “Mainstay: For the Well Spouse of the Chronically Ill” by Maggie Strong. 

    One ‘lesson learned the hard way’ in Strong’s experience as both a parent and a spouse caregiver whose husband had MS was that the immediate needs of the child must be the focus of the family and not the chronic illness. … While that may sound so logical, yet so many times over the years MS has tried and tried again to demand the center of attention, resources, and focus.

     Frankly it has taken much sacrifice on Patti’s part to place being a Mother FIRST, and chronically ill SECOND. With the progression of Patti’s physical and cerebral symptoms and as the spouse caregiver and basically single parent it has been a delicate and often unfair balancing act of time and resources. Megan has certainly faced unusual personal challenges along the way. However, we have stayed the course and tried to keep our family focus on the immediate needs of our daughter.

          … You can’t sit through a graduation ceremony and not drift into memories. I’m obviously showing my age and counter culture streak but even with “Pomp and Circumstances” playing over and over; the Grateful Dead lyric “… lately it occurs to me, what a long strange trip it's been … ” seemed oh so appropriate. <grin>

Caregiving: "how much love we put ..."

     Back over the Memorial Day weekend, I was tempted to stop answering the telephone. Tragic news can explode into your life like shock waves. Two calls informed me friends had died. One was 5 years older than me and the other 5 years younger.

    As the time of grief and memories ebb, death leaves behind a mirror reflecting questions about our own life.

     While preparing a eulogy,  I found peace in these lines attributed to Mother Theresa:

“It is not how much we do,

but how much love we put in the doing.

It is not how much we give,

but how much love we put in the giving.”

    One theme I found in my reflections is that death should be motivating for the living because we can still choose how much love we put into the next moments in time.  

Caregiving: tragic story

This tragic story out of Dallas, Texas also involves caregiving, care facilities, and multiple sclerosis. ... I can understand how despair can erase the legal and moral definitions of quality of life and right to live or die. I pray the pressures and confusion of caregiving do not force more to such despair.

 

Elderly Man Dies Weeks After Killing Wife

By Julia Glick The Associated Press Friday, May 19, 2006

     DALLAS -- An elderly man who killed his invalid wife last month because his own health was failing and he couldn't bear to send her to a nursing home has died of cancer, his daughter said.

     "He was comfortable. He was at peace and ready to be with the woman he loved," said Sally Roberson, who discovered her 83-year-old father dead in his bed Thursday.    

     James Roberson was charged with murder after the April 25 shooting. His daughter said he put off the deed until "the 11th hour," when he feared he was losing the hand strength to fire his heirloom pistol. He then turned the gun on himself, but it jammed, his daughter said.

     He was freed on bail and spent his final days at his daughter's home.

     Sally Roberson said her mother, Mary Roberson, 83, would not have wanted to live without her husband.

     The couple had been high school sweethearts and were always together. After a series of strokes left her incapacitated and unable to speak, he tended to her every need, neighbors said.

     James Roberson brushed his wife's hair, washed her and spoon-fed her each day, but he was growing more ill from brain and lung cancer.

     He didn't want to send her to a nursing home, where workers were too busy to try to understand her labored speech and needs, Sally Roberson said, and he worried that his daughter, who has multiple sclerosis, wouldn't be able to care for her.

     She said her father will be cremated and his remains placed beside his wife's.

     "It has been a blessing that he has been here with me and that he died at home," she said.

© 2006 The Associated Press

Memorial Day

“… It is the soldier who has given us all our freedoms. It’s the soldier, not the reporter, who has given us freedom of the press. It’s the soldier, not the poet, who has given us freedom of speech. It’s the soldier, not the campus organizer, who has given us the freedom to object. It’s the soldier, not the lawyer, who has given us the right to a fair trial.

 

“It’s the soldier who salutes the flag, who serves under that flag and whose coffin is draped under that beautiful flag, who has given us the freedom to comfortably sit in our living rooms each evening with our loved ones. … ”

 

… excerpt from today’s Cumberland County “The Sentinel” Newspaper, guest editorial “Guards of Ageless Honor” by Tom Purcell.

Caregiving: FUN treatment

     Banners! Pickets! Protesters! … Half a dozen people protesting “The Da Vinci Code” movie greeted our entrance to the movie theatre parking lot on Sunday. Patti was intrigued by this unusual occurrence and “suddenly” wanted to see “The Da Vinci Code” instead of “Over The Hedge” that we were planning to attend. 

     As I attempted to explain that they were not advertising the movie but protesting the movie, Patti then wanted to go ask them why? Patti has not “listened” to the book. With no short term memory and her cognitive challenges, I had to smile just thinking about any dialogue between Patti and protestors.

     My impish temptation to roll Patti over to talk with them never happened as we were distracted bumping into Patti’s brother and niece in the parking lot and continued into the theatres.

     “Over The Hedge” worked perfectly for Patti. Wise cracking woodland critters battling suburbia on a mega screen … plus buttered popcorn, Twizzlers, and a Sprite was just what the doctor ordered. <grin>

     … and with Memorial Day Weekend temps hot and humid in the upper 80’s, a wheel chair accessible, air conditioned movie theatre is a wonderful and FUN treatment for MS.

Caregiving: Dodge, Braun/IMS wear "white hats"

     Durable medical equipment can become part of your family, Such a role for a “thing” can be impossible to grasp from an outsider looking in because it is often improbable to even understand when you are involved. The difference between a wheelchair and a motorized wheelchair or scooter is infinitely more than machinery and money. The same is true of a wheelchair accessible vehicle. The “thing” becomes entwined in your life.         

     For twelve days since being last towed to service, our van has been diagnosed, tested, repaired, rediagnosed, retested, and rerepaired. Warranty coverage has been in effect or voided depending on latest diagnoses of originating problem. Dodge (vehicle manufacturer) and IMS (conversion manufacturer) have consulted and shared opinions as to what and who is responsible. The van was 20 miles over the conversion warranty and the repair bill ended up being $1,700.

     IMS and Braun have recently corporately merged, or one bought out the other, which only clouded the picture. IMS and Braun are the two leading manufacturers and former competitors of accessibility vehicle conversions. In the world of cola this would equate to Coke merging with Pepsi.

     Bottom line is some one prior to the 11 weeks ago that we bought the van drilled a hole in the casing that contains the track for the IMS conversion door, power fold out ramp, and all the wiring and circuitry for the conversion's electronics. Why? Speculation is that the hole was probably drilled to drain water that somehow must have gotten into the bottom of the track casing. However the mechanical dunderhead that came up with this insane solution also neglected to seal the hole back up so driving in rain or through puddles continuously splashed water also up into the track. Much like copper pipes in a basement that turn green, over time electrolysis had corroded sections of the track short circuiting not only the conversion but also Dodge vehicle systems.

     Dodge went to bat for us over the bill and the new Braun/IMS has a corporate conscience. Late this afternoon a representative of Braun/IMS showed up at the service department and paid the $1,700 bill in full. Dodge and Braun/IMS wear white hats in my book!

     11 weeks ago this “thing” didn’t even exist in our world. Now for months it has dominated our daily routine either by its use or absence. The stress of shopping for it, trying to borrow money to buy it, and struggling through repairs that have kept it inoperable for 20% of the time we have owned it has been too consuming.

     Yet the freedom and empowerment it provided Patti this evening is priceless. Simply being able to roll her in, pull up outside “our” Casa Mani coffeehouse, extend the ramp, and roll into the coffee house is the essence of ACCESSIBILITY. Conversation, laughter, jazz music, a couple slices of black forest cake, hot chocolate for Patti, and coffee for me is so much more than a 21st Century weeknight Bohemian outing.

Caregiving: computers, who needs them?

“To err is human, but to really foul things up requires a computer.”  Farmers' Almanac, 1978

     Today, two months after an alleged computer error triggered a chain of computer system errors; the last of Patti’s retroactively canceled prescription payments was retroactively repaid.

     …  At least I hope so! Too many hours, too many calls, too many faxes, and too many follow up letters have been involved. As usual no explanation for how the alleged error could have happened or how making things right could have involved so many fumbles.

     The caregiver always sees and knows the human impact, the ‘cast of thousands’ on the other end of the phone, letters, or computer NEVER “feel” the human impact. They work their shift and go home. This fundamental difference challenges communication and sense of urgency.

     ….. and on the topic of computers fouling things up, 7 days ago our Dodge wheelchair accessible van was towed 50 miles in the pouring rain. Its computerized technology still remains in the shop being diagnosed, waiting for parts, repaired and retested.

      … fortunately the physical strength of the caregiver is always dependable assistive technology. <grin>

Caregiving: toast to Mother's Day

A toast to Mother’s Day from two Irishmen …

 

Oscar Wilde  

"All women become like their mothers. That is their tragedy. No man does. That's his."

   

James Joyce

"Whatever else is unsure in this stinking dunghill of a world a mother's love is not." 

Caregiving: Kodak family moments

     Multiple Sclerosis symptoms have “interfered” with Patti’s traditional parenting role since our daughter was 18 months old. Friday was one of those Kodak family moments and I was determined to include Patti. Though the 24 hours prior had me wondering if fate was out of control this time.

     Driving in a torrential thunderstorm about an hour from home, our van chose that moment to have a mental breakdown. Windshield wipers stopped working joined by failing power steering and braking. 90 minute wait for AAA, then 50 mile tow to home. An hour ride in the cab of a tow truck was a genuinely new experience. Thank God Patti was not with me. All in all a three hour delay and one vehicle out of commission.

     Some how in all this a tooth broke off a partial denture, and of course a front tooth. I never even knew such a thing was possible. Calling our dentist, the answering machine informed me the office is “closed” and will reopen on Monday. Looking like a stereotypical hillbilly and challenged to pronounce many letters of the alphabet, I found a place in the yellow pages that actually could repair in 4 hours.

     Undoubtedly because it was the Friday before the Medicare D deadline, Patti’s private prescription plan insurance came crashing apart once again on this day at this time. Trying to juggle dozens of calls outgoing and incoming with necessary offices while running around dealing with van and tooth was nuts (and even unable to pronounce "nuts" <grin> for several hours).

     And of course, there was an 18 year old at home who now had to suddenly share the car for last minute needs to get ready for the High School prom and I needed to help with lacing up fancy dress and all that. Plus some procrastinated college paperwork that ‘suddenly’ needed to be Expressed Mailed today! My sanity was saved by staring and realizing like the old Saturday Night Live expression that “Megan, you look mahhvalous”! (Megan centered in the picture with hair down.)

     Then we needed to plug Patti into the equation. Van was neither diagnosed nor repaired by the time I needed to transport her so we reverted to the old fashioned transfer board method and used our station wagon and my physical strength to get Patti in and out of the vehicle.

     In spite of 24 hrs of obstacles, we were ONLY 5 minutes late for pre-prom picture taking. Wisely the kids had decided to gather at one house before going out to dinner to make themselves “available” for Kodak moments.

     Patti enjoyed the Kodak moment and she was unusually communicative. Her tendency to slip into language more appropriate for dock workers had the kids laughing with shocked glee as this was not typical 'parent speak' <grin>  

     While the young adults headed off to a fancy dinner and their prom, Patti and I grabbed Italian carry out in route to Mother's Day shopping. A total of 8 physical transfers of Patti in and out of our car. Lord, has that wheel chair accessible van spoiled me. 

     Obstacles and challenges are always going to be part of any good family memory. The caregiver spouse just has to make sure they are overcome.

Caregiving: sitting in the backyard

     Just “sitting” in the backyard as a caregiver you learn to appreciate not only what surrounds you but how to communicate. A warm breezy Spring afternoon requires you to find the creativity to complete these pictures. 

     Patti’s MS symptoms of visual impairment and cognitive challenges short circuit the processing of  ...  wind blowing through this weeping willow tree ...

   ...  or clouds making shadows appear and disappear on the fence ...

                        

     ...  or viewing the flag snapping in the wind through the cherry tree in bloom.

 

                       

     A ‘Spring Day’ is not subject to the Americans with Disabilities Act regulations. It takes time and creativity by family, friends, or volunteers to make such opportunities accessible. 

Caregiving: Special Olympics Spring Games

   Wednesday I was blessed with my annual participation in the Special Olympics Spring Games. In the photograph, to the left of traditional opening flag and torch ceremonies, student athletes “sign” the National Anthem.  

     Each year surrounded by athletes and volunteers I know that I am standing among everything that is “right and good” about people. The collective energy of excitement, challenge, celebration, laughter, and love is so powerful it leaves you stronger and richer.

     When this many people are gathered together caring for each other, there is always a moment in time when the faces of athletes and volunteers seem to swirl together causing the eyes and smiles to align ever so briefly … and it seems my breath stops as I glimpse a collage of the face of God.       

Caregiving: a great start for the week

     Mondays! ... This one got off to a great start with a call informing me that Patti’s Long Term Disability medical insurance and private prescription plan had been “retroactively” restored with no lapse in coverage. Yeah!

     ... and last week ended with our wheelchair accessible van repair costing us absolutely nothing. (Well, except four days in the shop.) The gremlin was one of the computers that operate the van's technology and fortunately it's replacement was covered under the "Certified Pre-Owned" warranty. I joke that I feel like I am powering up a space ship when I turn the van ignition key, I never knew how close I was to the truth. <grin>

       The Employee Benefits representative who called could not offer any explanation for how or why Patti's LTD benefits had been “retroactively” canceled in the first place.

       Through previous ordeals I've learned that pieces of misinformation drift into the loop somewhere and are mistakenly “believed” by one network when communicating with another. When that network is updated ‘system wide’ that piece of misinformation gains credibility and will in turn be communicated to more interdependent systems. … when appropriate flags are triggered it can spit you out.     

     Yes, an extreme over simplification but it works as well for me as the most complicated doublespeak any bureaucrat can offer. Basically, computer networks communicating between each other are not really much different than the proverbial neighbors gossiping over the back fence.  <grin>

Caregiving: ... anticipatory management

     Anticipatory management of the unknown – now there is a phrase for a caregiving resume. <grin> 

     As captured in the following two entries, too often most of your time on any given week will end up being devoted to issues that were not even 'on the radar' when the previous week ended.

Caregiving: … battling bureaucracy

   Over the weekend I received the kind of mail that is not only incredulous but sadly too typical of the bureaucratic chaos that is our modern American health insurance system.

ü     Letter 1 confirms Patti has "refused" Medicare D prescription plan insurance because she has a Long Term Disability (LTD) private prescription plan.

ü     Letter 2 notifies Patti her (LTD) private prescription insurance has been retroactively canceled because she allegedly 'accepted' a Medicare D prescription plan.

    .....  (Yes, letters 1 & 2 contradict)

ü     Letter 3 notifies Patti her private medical insurance through LTD benefits has been canceled because her LTD prescription plan benefits have been canceled. (no explanation as to how this links to anything is offered)

   I am no wide eyed “believer” in conspiracy theories, just a grizzled veteran of too many countless hours fighting this system for Patti. For example, from September of 2004 to September of 2005 I spent over 2000 hours logged in my day planner involved in the last medical insurance debacle over allegedly mistaken retroactive cancellation of Patti’s medical insurance.

   Helping a challenged or even overwhelmed family member or friend to stay on top of even the most innocuous communication regarding medical insurance can be more important than you realize. Knowing about someone’s insurance is not being a busy body it’s about being able to "care" in order to be able to help. 

Caregiving: ... "get a horse"

     The day after the MS Walk our wheelchair accessible van would not start. On our 48th day as owners, this Dodge “Certified Pre-Owned” Vehicle was towed away for service. 

     Monday it wouldn’t start. Baffled and after hours and hours of different diagnostic tests, Dodge service tells me late Wednesday they believe the problem is a failed system computer that controls the van’s technology.

     As soon as they can get the replacement part, they can install and test. "If" that is the problem then the van will be ready. Estimate another 1 to 2 days.

     If there is a silver lining, I’m told that because I purchased the van “Certified Pre-Owned” that the labor and parts are no cost to me.

     Fortunately when we bought the Dodge Grand Caravan ES with IMS RampVan Conversion, I kept our Ford Taurus Wagon and 'transfer board'. 21st Century vehicular technology, or gadgetry, is nice but I can “depend” on a good ol’ 20th Century vehicle. And I can always “depend” on my own strength and the principle of an ‘incline’ for transfers. Picking Patti up last night for dinner at home and a visit to our local ice cream parlor we did things the "old way". <grin>

Caregiving: MS Walk 2006 Camp Hill

     Last year Patti ‘suddenly’ decided she wanted to participate in the MS Walk. For the previous 19 years since she was diagnosed with MS, for one reason or another, we had never participated. After all “living with MS” on a daily basis is different than rallying to a once a year fundraising drive.   

     A year ago, with less than a week’s notice I was humbled by the response from family and friends. With no time for anything except an email request for $5 or $10 donations hoping to raise $100 to ‘earn’ Patti an MS Walk t-shirt, our family team of three grew to 10 walkers and donations totaled $697.

     This year Patti’s Mom, Gloria Decker, organized and captained a family & friends team much earlier. Patti’s 2006 team numbered over 21 walkers, 2 toddlers in a stroller, and two dogs. Gloria reports that “roughly estimated the group turned in close to $2,000 in donations.”

     The Central Penn Chapter of NMSS chapter goal is a One Million Dollar MS Walk. They calculate if each ’05 team increased its fundraising 20% for ’06, then the One Million Dollar Goal is attainable. Patti’s wonderful 2006 family & friends team delivered an increase of 180%.

     Temps were great in the 60’s and the walk route itself was a pleasant stroll of 2.6 miles. (Measured both on my van odometer and the pedometer supplied by NMSS.)  Now on the other hand, 2.6 miles of being jostled, bumped, jarred along sidewalks, up and down curbs, and then rained on for the last half mile left Patti so exhausted she was out like a light for 3 hrs for her afternoon nap. When I woke her for dinner, she ate less than half and just wanted to go back to bed. <grin>  It was a good kind of exhaustion and a well deserved rest.  

     THANK YOU to everyone!   

<Tip> When viewing AOL pictures if you use the “slideshow” option for viewing, the pictures display at full size.   

Caregiving: training in disguise

     Temperature soared almost 30% above average for this time of year to 83 degrees on Thursday. There is a rule of thumb about temperature and MS, cooler is better.     

    Preparing Patti for the MS Walk on Sunday I’ve been including her in longer and longer outings over the past week. (Training in disguise <grin>)

     Thursday I had a couple hours of errands to run which was excellent practice because it involved interacting with people and up and down many sidewalks which is typical of MS Walk routes.

     Patti made it successfully through 3 hrs before temper was matching temperature and it was time for a well deserved nap.

     The MS Walk can be grueling for her. Rolling through residential/commercial neighborhoods is jarring to say the least. Generous, well intended shiny happy people pumped up about “fighting MS” can reach a saturation point. <grin>.

     Practice, I hope, will make it more tolerable and even fun!

Caregiving: Alternative Financing Programs

     My gratitude to the Pennsylvania Assistive Technology Foundation (PATF) for their assistance in brokering our auto loan for our wheelchair accessible van is endless. Simply running interference with the ‘system’ is the most beneficial and pragmatic help I have ever encountered. 

     Of course, their magic in brokering a 4% vs an 8% loan is even more appreciated. <grin>.

     PATF provided me the following link to share for Assistive Technology Alternative Financing Programs available in other States:

http://www.resna.org/AFTAP/state/index.html

Caregiving: Easter weekend walk in the woods

     I love a walk in the woods and Saturday was a postcard perfect day. Taking Patti along for a roll does present a challenge. Too few trails or paths are genuinely wheelchair accessible. 

     It rained the previous day and we've learned that the boardwalks along the rare accessible trails become walking traffic jams as most weekend hikers prefer not to get their shoes muddy on regular trails. 

     Fortunately about a year ago I discovered, a wonderful mountain sanctuary, the National Shrine of Our Lady of Lourdes tucked into the Catoctin Mountains above Mount St. Mary’s University in Emmitsburg, MD. 

     I guess because of its association with 'spiritual' and nature it is never crowded while similar terrain only a mile away requires winding through parking lots looking for an open space to reach hiking trail heads.

     The serenity of nature is enhanced by beautifully landscaped and wide paved paths to the mountain grotto. Framing the walks are Mountain Laurel and Azaleas so close and dense that Patti can see and enjoy.

     The tranquility embraces you. Religious art blooms more like flowers than statues. In the early 1800’s, Elizabeth Ann Seton found spiritual refuge in this grotto long before the landscaping and sculpture gardens. Later, her canonization as America's first native born Saint left the word ‘holy’ indelibly associated with this mountain top.

     As it was Easter weekend it only seemed all the more. the right place at the right time for a walk/roll in the woods.  

Caregiving: hollow chocolate bunnies

     “Talking Books” or audio books are one of those aspects of living with MS that have evolved into a crossover interest. Now days I listen more than Patti does. <grin> An audio book playing in our vehicle is the primary media.    

     Currently, for no other reason than the title seemed to fit the season I (and Patti when she is in the van) am listening to “The Hollow Chocolate Bunnies Of The Apocalypse” by Robert Rankin.

     The author’s running gag is that one of the main characters is unable to ever complete a simile, "It's as good as … !" or "I was scared as … !" Obviously, on audio book, this comes across more emphatically than if you were simply reading. With Patti’s memory loss symptoms, these constantly repeated lapses are especially amusing to her.

     I suspect this story might be difficult to sit and 'read' because it is a madcap, rambling, tall-tale more like an extended Monty Python piece. Yet it’s ideal for us in the car and more importantly for Patti who listens through cerebral confusion and storyline interruptions between times she is a passenger. You can jump in anywhere and taste a sentence or savor a chapter.

     ... and always be reminded about hollow chocolate bunnies while you can still get your hands on some. It would be maddening to read or listen to this any other time of year. <grin>

Caregiving: shopping therapy?

     Shopping on Saturday we both were intrigued by the pictured mannequin in a wheelchair, so I’ll give KOHL’S a plug. I have no idea what percentage of shoppers are in wheelchairs but obviously we will be back. Somebody in KOHL'S marketing department is thinking.    

     Shopping for opposite sex clothing is probably a caregiver necessity for many. Accompanying the opposite sex on such outings once was comparable to enduring fingernails on chalk boards. However through two decades of caregiving and parenting, I have had to increasingly shop 'with' and then 'for' Patti. While parenting our daughter has dragged me through the clothing and fashions of a cute little girl to a teenager. It’s been a fast track of evolution from male Neanderthal mentality.

     Shopping for clothing is also an excellent outing for Patti. Public interaction is minimized while still being in public. Believe me NO salesperson ever bothers with a person in a wheelchair. <grin> Patti can see, touch, and feel everything close up. She is at eye level with “SALE” signs and enjoys going through racks. She rarely tires shopping; after all she has a chair. <grin>

     Decision making brings multiple mental processes into use. Patti is challenged creatively and with real life to consider color combinations, seasons of the year, price, style, and other factors that are both simple and complex. Shopping as therapy – now there would be a medical revolution. <grin>  

    We have to add another filter level because Patti cannot dress herself. Stretchable waists, larger sizes, minimal buttons, etc. become important. Care instructions are critical, no dry cleaning, no hand wash, no special dry, etc. If it can’t be tossed in a washer and dryer it is of no use.        

     Trying on is obviously impossible, but that can always be done later and exchanged. I even carry my own tape measure <grin> to minimize exchanges.

    Checking out the mannequin from our perspective it was interesting to note the pants legs. The decorator consciously used over sized long pants on the mannequin which were bunched and tucked in the back of the waist, the handiwork was creatively concealed by the short jacket. In real life pants ride up several inches when you spend all day in a wheel chair. Patti needs to buy “long” length even though she is only 5’ 4” because she dresses for sitting not standing. It was interesting to see that a store fashion decorator encountering the same problem resolved it much the same way. Otherwise a person sitting in a wheelchair always looks like their pants are too short.

     The confused look on Patti’s face always happens when I point my cell phone at her to take a picture. <grin> I don’t think it has anything to do with MS. Camera phones boggle many people.

Caregiving: ... an emotional revolving door

     Periodically I must stress that caregiving is about enduring frustration.

Caregivng: enduring frustration

     Not every convergence of cerebral symptoms results in a lighthearted anecdote. As the caregiver I’m rolling the dice with every outing.

     Progression of cerebral symptoms whether they are related to Multiple Sclerosis, Dementia, Alzheimer’s, or any other chronic illness unquestionably impact the caregiver, family, and friends.  

     In “The Raven”, Edgar Allan Poe’s masterpiece of self-tortured loss he concludes:

 “And my soul from out that shadow that lies floating on the floor

Shall be lifted---nevermore!”

I believe ol’ Edgar might have creeped me out as a caregiver yet his gift for words captures that emotional shadow. Though to me it’s more like an emotional revolving door. If I dwell on it, I get stuck for too many revolutions. To successfully pass through, I have to stay focused on the present.

... the intrepidness of winter

     I love the intrepidness of winter. What a morning of defiance! Freezing temps, and wind gusted to 40 mph. Standing on my patio enjoying that first morning cup of Italian Roast coffee, I found myself embraced in a snow squall. Mother Winter knows her children.   

    The trace of snow left behind on the mulch was the perfect touch to reassure me I wasn’t dreaming. <grin>

Caregiving: a perfect paperwork storm

     The last two weeks have seen a rare convergence of a perfect paperwork storm. <grin> It’s amazing how much paper the computer age generates! How much?... opened my second ream on Friday.   

     Auto loan papers were not even completely filed away before TaxCut and e-File demanded completion. Yearly Medicaid review paperwork just happened to also coincide, and you get 10 days notice to complete.

     FAFSA and PHEAA previously unknown collided with all the others because our daughter is in her Senior year of high school and have become the juggernaut of this storm. Basically they are the Federal and State applications for college aid. Everything college related seems to spins off of them.

     ... and of course, there is always Medicare D vs Patti's private prescription plan confusion to fill in the quiet moments. <grin>

     Almost as if in conspiracy there is a synchronization involved as some forms require data from each other. It’s maddening to be cruising along on one and realize you must shift to another. In my dreams I finish some time this week.

      Completing our auto loan application and compiling supporting documents it really hammered home to me how “different” a family living with a chronic illness or disability is from any actuarial or statistical norm. Working through this perfect paperwork storm we simply do not “fit” on any form created by any bureaucracy. There is no “short” method of filing anything for us. <grin>

     Too many hours looking at this computer screen is driving me mad, I’ve taken to staring at buds on trees in our yard. So far I haven’t started talking with them yet, though I suspect the weeping willow is trying to tell me something. <grin>