Parenting: Part 1 - mustangs & shooting stars

     Sunday I was back and forth to Pequannock, NJ for the Christening of my cousin’s grandson. Then Monday and Tuesday, Megan and I were off to the Shenandoah National Park for some hiking and mountain air. When so much of each day is going to be “on the road” I always try to rent some fun vehicle, if I can get a great “last minute” rental deal. I was lucky as a candy apple red Ford Mustang Convertible was sitting unrented in the Budget Rent-A-Car corral. 

    Driving is more fun and easier with two drivers. And it is kind of ‘parenting’ to ride shotgun while your daughter explores speed and the open highway in an ultimate American muscle car. <grin>

    The Mustang became a perfect vehicle for an unexpected treat. Walking around outside after dinner Megan spotted a shooting star. I suddenly remembered from reading another journal that we were perfectly situated on top of a mountain to view the Perseid meteor shower. We hoped in the Mustang, lowered the top, drove away from the safety lights of the lodge, parked in the primal darkness and watched the night sky overhead with all the total creature comforts of a heater blowing warm air, leather seats and surround sound CD player. Nature is great, but it can be enhanced. <grin>

      The meteor shower reminded me of space bugs hitting the Earth’s bug zapper, as so many just seemed to dart here and there before suddenly disappearing. Though there were enough of the classic shooting star types to keep it real.     

Parenting: Part 2 - hiking, falcons & deer

     Hiking and the mountains, much like the beach, have become caught between parenting and caregiving since our daughter’s earliest years. We’ve tried to include Patti in all such family type activities, but the physical nature of these activities increasingly have made them father daughter time. While MS symptoms progressed our daughter was simultaneously growing up.

     We just carved out (as we try each summer) a couple days for hiking in the Shenandoah National Park. This pictured gnarly tree stands in front of the lodge at Big Meadows which has always been our home base. There are pictures when Megan is so young she can barely touch the branch with her arm extended up. <grin> In fact there is old 8mm footage of me barely tall enough to touch the branch, as my parents always came her for family hiking.

     Hiking to the top of Stoney Man Mountain has always been a key tradition. In the mid 90’s Megan and I reached the summit to witness the first successful fledging of peregrine falcons from a nest in the Shenandoah since they had been wiped out due to DDT over 30 years earlier. It was the most beautiful and savage display of raptor artistry you could imagine.

              

(Whether in a Pokemon t-shirt or a rock band hat, your child’s smile through the years can dwarf the natural majesty of a summit.)

     A piece of me has always held that day of the falcons as an omen on the need for parenting to find a way regardless of the obstacles. Our visits are also timed with the peak season when fawns begin to step out into the world around them, again more of the timeless passage of experience through interaction.

                 

     The National Park Service deserves repeated applause for their accessibility efforts. Not far from Big Meadows Lodge is the Limberlost Trail, a beautiful and completely accessible hiking/rolling trail. Their tireless efforts enabled us to extend Patti’s involvement, in past years, far longer than we could have hoped and enable so many people and families to enjoy our American treasures.

     Megan was in charge of deer photography and with a soon to be college student’s sense of art, we leave you with this charming invasion of deer privacy.

                            

Parenting: Part 3 - dinosaurs & detours

     Interstate super highways do get you rapidly between points but you miss seeing America. I am an absolute sucker for roadside attractions of yore. For our drive through Pennsylvania, Maryland, West Virginia, and Virginia we chose to take the old major highways and discovered two gems.

    (Use the 'slideshow' option after clicking "view larger" for best picture viewing.) 

     Long before Jurassic Park brought dinosaurs to life, "Dinosaurland" opened in 1966 near Winchester, VA. At $5 admission I found it a steal, and the block long gift shop was to die for. Relics of Americana (and the Confederacy) share the shelves with dinosaurs, aisles of colored glass, and even “still” supplies for home brewing. <grin> I believe the only thing I could not find was a plastic dashboard Jesus.

       Anyone remember the horror film the “Blair Witch Project”, with the spooky ads “that three student filmmakers disappeared in the woods near  Burkittsville, Maryland while shooting a documentary. … A year later their footage was found.” 

     Well, while driving we were surprised to find ourselves approaching an exit for Burkittsville, MD! We made the 4 mile detour to the town and the nearby park woods where the terrifying events occurred. We even checked out the town cemetery to see if an abnormal amount of graves were for children.

     Of course, it was only a movie but you notice we didn’t take any pictures. Why take chances? <grin> After all you wouldn’t want to wait a year for this journal entry to be discovered. <grin>

                             

Caregiving: ... makes you wonder?

      Hot August nights are a special time to read Christmas stories. To better share with Patti, I play audio tapes in our van while driving around. We’ve been listening to a collection of Jean Shepherd short stories, including “A Christmas Story”.

     With temps plunging last night, it makes you wonder about the magic of childhood. <grin>

 

(Picture borrowed without permission from the artistry of Carol Heyer)

Caregiving: campus visit AM

     Any August morning in the 70’s is meant to be an MS day. We loaded up our van with Patti, wheelchair, and scooter and hit the road. This was Patti’s first opportunity to visit our daughter’s college campus, and at 100 miles each way her longest trip in years.

     Our ramp van swallowed up all the necessary support equipment and vehicles <grin> plus passengers. Just the freedom of acres of wide open spaces to scooter about in was a blast to Patti.

 

 

If you are a visually impaired driver intoxicated by speed beware of random pieces of oversized art that suddenly may jump in front of you. <grin>

                             

OK, I’ll get in a picture ... Notice how the “man purse” is worn bandoleer style and hidden on back hip. 

                              

As a caregiver spouse I must carry a bag of necessities, but try to be as manly as possible about it. <grin>

Caregiving: campus visit PM

     Part of any campus is the town that surrounds it. Eating lunch at an Irish Pub at a sidewalk table on a tree lined street was a perfect finishing touch. Megan enjoyed Shepherd’s Pie while Patti and I tried Boxty’s (a traditional dish, common in the Irish Countryside, made from a Potato Pancake rolled and stuffed with various fillings).

     Because of MS symptoms of cognitive dysfunction I don’t know what Patti will remember or even be able to comprehend at times. Sometimes she’d ask almost every 10 minutes, “Where are we?” or “What is this place.” Other times she might make a remark leaving me believing she was tuned in. That’s kind of the way it is.

     With her progression I’ve learned to get the work done first by myself and then return with Patti in a more fun outing. She can then be involved but in a lighter sense, laughing, and having family time. Keeping the atmosphere “off the wall” unquestionably helps.  

     Alas for Megan, trying to be “kewl” (formerly known as “cool”) can seem out of sync when I get ramped up tilting at windmills to keep Patti amused and focused. By the end of the day, Megan was hiding in her hands and mumbling, “I don’t know you people.” <grin>

                   

     Of course there is always the risk of the darker side of MS symptoms flaring up. You just have to be prepared and hope for the best. Keep timetables loose, MS sets its own. As that lovable, raving, knight-errant Don Quixote once offered as advice; “Patience, and shuffle the cards.”

Caregiving: MS "teaching aid"

     Meet our “show and tell” Multiple Sclerosis teaching aid. It has starred in class or science fair demonstrations all through Elementary, Middle, and High School. At home, we use it for guests and visitors.

     Most people only want an extremely brief and simple 'MS for Dummies' definition. The following is an attempt at reenacting how that often goes ...

...............

     Multiple Sclerosis is not contagious. Even if Patti decided to bite you the odds are zero you would get Multiple Sclerosis.

     Electrical cords are easy to relate to for everyone. Inside a cord is an electrical wire that conducts electricity. The cord serves to shield the wire. When the yellow cord becomes frayed like this one then the copper wire is exposed. Let’s use a lamp for an example. A frayed cord and damaged wire will cause a lamp to short out or not work.

    Our bodies have miles of nerves connecting the brain to our extremities and organs. Surrounding and protecting the brain and nerves is a substance called Myelin. The relationship between the Myelin sheath and our nerves is much like an electrical cord to a wire.

     When a person has Multiple Sclerosis the body’s immune system (one of the most powerful forces in nature) goes rogue and attacks the myelin sheath.

     As the immune system breaks through the myelin then communication with the brain is affected. When your body’s myelin sheath and nerves start looking like this piece of electrical cord then parts of you stop working.

     Usually there is an attempt at Q & A. “I thought MS is supposed to …”, or the ever popular. “I have a friend who knows someone with MS and they are not like Patti….”

     I point out I promised 'extremely brief and simple', and most importantly Patti is not her disease and absolutely nothing bores her more than MS 101 when socializing. <grin> So let’s leave it with this  – Multiple Sclerosis is the proverbial 800 lb gorilla and will do whatever it damn well pleases.

…………….

     “Living with MS” it’s surprising how many people you have to educate in less than two minutes. MS has no poster child and the variations in level of disability and symptoms only confound any public understanding.  Our home made “myelin sheath” has taught more people in our story than any professional brochure. 

     'The Wire' also has also been adopted over the years as a “thing of interest” to Stardust and somehow is able to wander. <grin> 

                                                             

Journal: word count

     OK, some people asked about my mention of a personal ‘word count’ goal. Recently looking for something in a past journal entry I noticed that some of my entries seemed too wordy. With hindsight, I could have written them more concisely.  

      Perhaps I was getting lazy or sloppy when it came to this journal? 

     A ‘side effect’ of two decades of caregiving is that anything I do one day I have to do better the next day.    

     So I said to myself, “Self, I think the problem here is lack of a goal.” I picked an arbitrary word count ceiling and have been trying to carve the wordsmithing to fit. 

Caregiving: parenting & the beach

     While this sociable crustacean is naturally associated with the beach, MS IS NOT! The "beach" has always been father daughter, able bodied time in our story. With temps of 100 degrees and college starting in a couple weeks, my daughter and I headed to the Jersey Shore. 

     Bodyboarding is an obsession. From morning to end of day we ride the waves. The mythical "Selkies" of yore must have left some DNA in our Scotch Irish ancestral blood.

     Riding one particular wave we found ourselves racing each other toward shore while weaving and curling around waders. As Megan began to pull ahead down the finish I reached over and tipped up her board's batwing sending her sprawling into the surf.

    

     Coasting onto the beach in victory, I thrust my arms into the air beginning my victory dance. Megan was kneeling in the sand spewing out salt water and laughing, “You cheated! I can’t believe my own father just knocked me off my board to win a race.”

     Welcome to the adult world, college girl! <grin> … anyway, what about all the times I pretended to loose when she was little?

                             

     Everything changes in life, except the surf still crashes to the shore. I find enchantment in those waves.

Caregiving: a word of caution

     As always a word of caution, entries in this journal share our story of living with Multiple Sclerosis as a family for two decades. 

     One person’s case cannot predict or forecast any other person’s specific course of MS.

Caregiving: Cognitive Dysfunction Part 2 of 2

(continued from Cognitive Dysfunction Part 1 of 2)

     Patti’s cognitive impairments like many people with MS affected her first and hardest where it hurts, employment. As an experienced buyer for a paper company she was valued and her employer worked to accommodate her physically. Yet intermittent cognitive symptoms began to impair her ability to do her job. When mistakes occur in tractor-trailer loads of the wrong paper, it is expensive to the bottom line.  She was placed on long term disability within 3 years of her first major MS exacerbation.

     In the double income family of today that changes your world.

    At home cognitive dysfunction can affect so much, including a person’s independence to take their own medications to parenting to the safety of the family. No reason to belabor a litany of incidents, one will do from early in the course of MS.

     Patti was basically able to care for herself (or so we believed.) Our daughter was at Elementary School, and I was at work. A sixth sense pulled me home to check on Patti at lunch time. I walked in to the house to find Patti sitting calmly at the table eating lunch while a fire burned on the stove. Fortunately we had a kitchen fire extinguisher on the wall which I used to put out the fire. Then I hear Patti complain about the smoke while she is trying to eat <grin>. She simply could not process the layers of thinking involved in eating, seeing a fire and what to do about it, much less however she started it while cooking. Had I walked in 10 minutes later I dread to think of the outcome.

     Cognitive dysfunction should not be underestimated and never denied. There are reasons this is one of the “more scary symptoms of Multiple Sclerosis”. More importantly this IS the responsibility of family and friends. You cannot always depend on a guardian angel to bail someone out of an at risk situation.

Caregiving: Cognitive Dysfunction Part 1 of 2

     "Cognitive Dysfunction is one of the more scary symptoms of Multiple Sclerosis. It used to be thought that cognitive dysfunction was relatively rare symptom of the disease but it is now understood to be quite a common feature.” 

http://www.mult-sclerosis.org/

     Yes, once upon a time, I remember Patti’s neurologist telling us that less than 10% develop cognitive dysfunction. Not so long ago I read of 25% in a MS publication. In the Summer 2006 issue of MS Connection by the National Multiple Sclerosis Society, “…about 50% of people with MS develop some cognitive dysfunction”. Other MS organizations and publications quote percentages of 65%.

     Somehow I doubt the disease is changing, I suspect that frankness in discussing MS is changing. Of course with a 20+ year history of “living with MS”, we have the perspective of ‘tribal elders’ 

     It seems to me that medical information is filtered to maximize hope. While well-intended, patronizing people and families facing challenges can create problems.  In part this journal was created because we knew that too often MS progression was “forgotten” in mainstream MS publications. People and families just seemed to fade into silence.

     A neurologist will drone on about how cognitive dysfunction symptoms can range from mild to Dementia. … Wait a minute - STOP! The word Dementia alone sends you directly to the ‘worry chest’ to search for the appropriate panic button, finally selecting the one labeled “freak out”. This, in turn, invites denial of early symptoms, especially if intermittent.

     Reading this recent MS Connection article I couldn’t help but remember and reflect. Back in the “10% era” when Patti’s symptoms began I lost count of the number of times I was asked “Are they sure she has MS?”

     One guaranteed "free" litmus test of cognitive dysfunction is when people stop asking you questions directly about your own health. <grin>

     Like most people at the onset of cognitive dysfunction Patti was not even aware. How could she be? It is the fingerprints left by mysterious mistakes or faulty reasoning that tells the story.

To be continued …

(I’m working on a personal goal of word count in entries so this “thought” will have to be in two parts.)

Caregiving: many hats

     Anthropologists are always trying to figure out how one tribe somehow began to use something associated with another distant tribe. How did they transfer the information over such an apparently insurmountable distance? 

     AOL journals will certainly baffle the anthropologists of tomorrow. Reading A Day In My Life about caregiving in Oklahoma I was inspired by an entry and modified and applied the irrigation tip to my yard in Pennsylvania.

    While Patti tooled around the yard in her scooter, I finished digging a 25’ long trench from drain spout to a young Weeping Willow tree, attached a flexible pipe to spout, then ran and buried the length of the pipe to the roots of the tree. Now a quarter of all rain run off from our roof feeds directly to the roots of the Weeping Willow. The resulting growth has been phenomenal!

     Lawn and garden care is one of the many hats juggled by home caregivers. It like everything has to adapt as your available time changes. Simplify replaces the “Beautiful Home & Garden” themed approach.

     Some aspects can have dual benefits. Mowing the lawn for example I find perfect caregiving exercise. The handle on the mower is the same height as the attendant bars on the back of Patti’s wheel chair. I also consciously wait to mow in the worst of heat and humidity, when possible. With close to a quarter acre of lawn, the endurance conditioning from pushing the lawn mower helps make pushing Patti’s wheelchair an easier task no matter what the distance, slope, or conditions.

     Frankly it’s also relaxation therapy. Enveloped in the roar of the engine and the focus of repetitive symmetrical patterns it is private time to think.

     The scent of a freshly mowed lawn inspires the grill chef in me. Dinner was Black-Tip Shark steaks barbequed in a Caribbean Jerk sauce with shrimp stir fry. (I have a stir fry Wok designed for use on a grill.) Patti devoured her dinner, handing me her empty plate half way through my meal wanting more. <grin> Ahh! How did I forget about that “waiter hat”? <grin>

Caregiving: companion seating at the movies

     With temperatures dropping into the 70’s with low humidity it was magical weather for a summer outing on Sunday. With Patti’s visual impairment symptoms a trip to the movies is always high on her list. “Monster House” was her choice and the richly animated Fall colors only reinforced the cooling outside temperatures. <grin> The film seemed like Stephen Spielberg trying to be Tim Burton and the end result was a fun 90 minute reminder not to grow up too fast no matter what your age. 

     Accessibility issues, specifically “companion seating”,  have led us to settle on patronizing this particular megaplex, Cinema Center. Certainly most theatres with stadium style seating have a row for wheelchair seating. Located in that designated row are additional fixed seats sometimes blocked in multiple seats and/or sometimes pairs with empty spaces at the end of each block for wheelchairs. The “theory” behind those end of block seats or pairs is for the convenience of companions/attendants of those attending the movie in a wheelchair. They are even designated with wheelchair logos painted on the sides of the seats.

     Seating in the designated accessible seating row is also for patrons who cannot climb stairs such as some one using a walker or cane. The larger blocks of seats are “in theory” for such patrons. Seating is easily accessible and they do not need an end seat or companion seat next to a wheelchair cut out.

     However “theory” and reality rarely match. Problems also rarely occur among disabled patrons and their companions. Confusion occurs with the able bodied, such as:

     “Oh! I’m sorry. My children prefer to sit here so they can get up and move around. They get so squirmy in regular seats.”

     “Oh, I’m sorry. My husband is tall and the regular seats are uncomfortable for his long legs.”

     “Sorry Dude! We didn’t see anybody in a wheelchair so we just sat here!”

     or my favorite ever … “We are so sorry. Does being an idiot count as a disability? (gesturing to her date) It was his idea to sit here.”

      Rarely do I even have to say anything, people see us, know they are in the wrong seats, usually apologize and move. In one of those rare cases I parked Patti in the wheelchair cut next to some “insensitive” strangers and went to get her concessions. When I returned the seats next to her were empty. After handing Patti her concessions, I had to try not to laugh as Patti recounted how the person next to her got all wigged out when she tried to share the popcorn and tried to take a sip of “her” drink. Then the person “rudely” took her popcorn and drink and left. (Which, in the real world, was his.) … To prove the world has gone mad, a woman leaned forward from the row behind us to “confirm” Patti’s story and thank me for getting her some more. <grin>

    At Cinema Center the companion seats are boldly printed in large block letter “COMPANION SEAT” across the cushioned back rest. ALL the seats in the accessibility row have bold wheelchairs emblazoned on the seat cushions. … and surprisingly there is never any confusion. I suspect the bold lettering versus the small wheelchair logo on the side of a seat causes someone to think before they sit.  

     Waking up to 63 degree temps this morning leaves me all the more convinced the Cumberland Valley may be Shangri La.

Caregiving: 21st Anniversary

     This picture was taken 21 years ago, yesterday. Seems mind-boggling when 15 of our 21 years have involved homecare by “moi” as spouse caregiver.

     Twelve years ago a US National Health Interview Survey found a divorce rate of 80% in households with a disabled adult.   

     Recently the New York Times tells us that is increasing:

“As modern medicine extends the lives of people with chronic diseases the divorce among them is increasing … Among the reasons, they say, are the stresses on the health of the spouse caring for a disabled partner, and the pressure on family finances, especially if one spouse has to stop working to stay home and tend the other….”        

      Isn’t it curious how we seem to study and observe why things don't work rather than how they can work?

     ... and 37 years ago, yesterday, a man walked on the moon. It seems to me that anything is possible.

Caregiving: AS I AM "The Healing Garden"

The Healing Garden

 “…Whether you've just discovered you have an illness, or a loved one has, or whether you have been dealing with it for some time now, this is for you….”

     "AS I AM" is a “different” kind of AOL journal. Even though I am the caregiver in our story I can appreciate what "AS I AM" is trying to do. It is a lot of things, educational, emotional, but above all "people to people". 

Caregiving: does that star-spangled banner yet wave?

     Tuesday’s outing was unusually exciting. Our 25’ flag pole in front of our house was apparently struck by lightning and toppled over in one hellacious thunderstorm. 

     Patti and I had just left the grocery store and were watching the storm roar in and around us from inside our accessible van when the radio announced a severe thunderstorm weather alert for our immediate area.

     Shortly our daughter called to let us know that the loudest thunderclap she had ever heard and a flash of lightning that had lit up the windows had occurred only minutes ago. Thinking that someone’s house must have been hit by lightning she stepped outside to look and found the flagpole laying in the front yard.

     (There is hope for the youth of America) She retrieved the fallen US flag from the storm and then called us. <grin>

     On the plus side the weather was magnificent immediately after the un-American storm for our originally planned cook out - grilled swordfish steaks, corn on the cob, and crab soup.

     Still it leaves me wondering how fragile any moment, or place, or thing is in time.

Caregiving: and more dog days of summer

     Not all weather related anecdotes are foreboding.

     “Drink plenty of liquids” seems to have replaced ‘an apple a day’ as the proverbial health mantra. 

     Patti, for whatever reasons, has begun to consume less and less fluids over the last few years.  Maybe dysphagia, or maybe a combination of symptoms, who knows? You need to consciously monitor her liquid intake.

     The other night at her care facility I could only laugh at an exchange between Patti and medication nurse over bedtime meds.

     Nurse: “Patti don’t I keep telling you that you’ve got to drink more liquids. Look, I’ve even gotten you a different flavor juice to take them with!”

     She takes a minimal sip of the cranberry juice to swallow the pills.       

     Patti: (handing back the juice) “And don’t I keep telling you - that if you got me a wine cooler, I’d gladly drink it all down!”      

Caregiving: more dog days of summer

     Mowing my lawn Sunday, the temperature hit 91 degrees! Today’s forecast is for 98 degrees. The talking heads reporting weather are hyping “real fee” temperatures of 109 in their forecast. 

   Transporting Patti to visit with her parents I noticed some symptoms flare almost immediately when she was outside as if she was ‘hitting a wall’ of heat. Fortunately air conditioning whether in our van or in a home stabilized symptoms just as rapidly.

    Weather and mental confusion can put a person ‘at risk’ faster than most people can imagine.

     Following is a “cooler” example from our last year of homecare and one of the specific trigger incidents that demonstrated the urgent need for a 24/7 care facility.

     I awoke one winter night about 3 AM - the house was freezing! I guessed I should check the thermostat or heater. Instead I found our cats sitting in the foyer staring through the wide open door at Patti 20 ft down the sidewalk calling to them.

     Pushing Patti back inside I asked what she was doing, and she explained the cats wanted to go for a walk. … The cats on the other hand had enough sense to stay inside in such weather.

     The yard thermometer read zero degrees plus the wind was blowing. Somehow Patti had managed to transfer to her wheelchair and rolled outside in just her pajamas. Our home was built to be “accessible” and Patti could easily exit the front door.

     Fortunately our sidewalk makes a 90 degree turn at that point before continuing downhill to the street. Shoveled snow piled on both sides of the sidewalk had “caught” Patti from rolling any further.

     Symptoms of mental confusion and impaired reasoning can so easily cause a person to put them self at risk. When weather is dangerously hot or cold it does not take long for nature to take its toll.

     The dog days of summer are not always “those lazy hazy crazy days of summer”.

Caregiving: family

     Family time is something you make, it doesn’t just happen. Juggling a care facility for Mom and a teenager might be unique to our story - I don’t believe it is exceptional considering all that families everywhere face everyday.

    There are times it seems to me the challenge of ‘family’ in the US is greater than physical and mental obstacles.

Caregiving: "other journals"

     Whenever I open a Journal home page I usually find “other journals” listed. Why are they there? Is there a common denominator?

     Looking at my own “other journals” and asking myself that question,  I thought I would try to take the time now and then to offer a text snapshot of those I’ve chosen to list, just a few at a time.

     I’ll begin with my “classics”, the original three that have been “other journals” for two years.  

      

A day in my life....

    “ ... a daily journal of a patient and the caregiver, and their walk together each day.”  I’ve been following Sue’s caregiver/spouse AOL journal since the summer of 2004. Jack, her husband, has Parkinson's disease.

     Earlier this year, Sue took caregiving to another dimension when they moved from Southern California to the Oklahoma prairie so Sue could take care of her 87 year old Mom.  

     In my opinion, caregiving does not increase mathematically (1 + 1 = 2) but grows exponentially.

     In the movie “Wayne’s World”, Wayne and Garth fall to their knees in front of Alice Cooper proclaiming “We’re Not Worthy, We’re Not Worthy!”   

     Were I ever to meet Sue in person, I would have to repeat this gesture of pop culture acknowledgement of a “STAR” caregiver.

     Theirs is an amazing story of “taking care” of family.

   

MY JOURNEY WITH MS

      As Christine says “I have MS, it doesn’t have me”. Christine was one of the first few people to drop in out of cyberspace and post a comment to my journal.

     Christine's entries and poetry offers a creative insight to both Multiple Sclerosis and more importantly to the balance of living with MS.

    As a caregiver spouse for 2 decades it’s often too easy for me to forget Patti’s earlier struggles of courage for independence. Not all MS will progress the same way, and I pray people will never need to know the caregiver spouse relationship.

     To share a journey is the wonder of this technology. In sharing we find pieces of the puzzle of truth.

     Christina’s gift for words and her Mom’s art (Tamara Gerkin, muralist and artist) create a captivating home page to enter her journey.

     An AOL expatriate over banner advertising the link above leads to her new home on Blogger.

 

My Take On Life (A.K.A. The Making Of A Home)

“Here's how I see it!  You may not like what I see or what I have to say about it.  But, it's life as I see it. You're always welcome to stop by and chat!”

     Deb’s Journal is like a 21st Century visit with someone at their home what with webcams of the front and back yards and even her cats. <grin>

     Deb is in the computer field and through her “My Cube” link she is always sharing the coolest computer and Internet “stuff”.  You can find her on both AOL & Blogger, the link is to AOL.

     The home visit feel is enhanced by leaving you with mouthwatering, and healthy recipes, chats about gardening or just about anything, and of course the trials and tribulations of home ownership. Sharing her proactive approach to health care is admirable.

    Keeping up with everything is as impossible for me as it is to label her journal. I simply enjoy the eclectic atmosphere and always the Georgia hospitality.    

------------------------------------- 

     Following these Journals for two years I “feel” as I would for a friend or neighbor.

Caregiving: the "dog days"

     Ah! The “dog days” of summer have settled in and that is never good for trying to live with Multiple Sclerosis in our heat and humidity. Fortunately air conditioned facilities are abundant in the United States. 

     As a family it is also a time of year when we are more different than other families. Family traditions such summer vacations, travel, beach, pools, and such have, with Patti's MS progression, increasingly fallen into that “parallel universe”. <grin>

    If you are committed to survival then you adapt. We’ve both adapted and split time between living with MS as a family and raising our daughter to eventually live as an able bodied young person.

     Not every caregiving story will be like ours. Our family story involved simultaneously caregiving and parenting, one declining and one growing up. (Both too fast in my opinion <grin>)

     We would carve out time for Megan and me to “do” family summer traditions.  For example, at the beach, is the freedom to run in the surf, build sand castles, spend a whole day in the sun, jet ski, and more that we believed she should experience. Patti’s MS progression quickly erased her from any sunny picture.

     We did try “beach” wheelchairs, hotels directly on the boardwalk and such in the earlier years. These attempts were too all consuming and one way or another the sunny “dogdays” only flared or exacerbated MS symptoms and trips ended up aborted.

     We’ve learned and grown. The last couple “dog days” we’ve been able to enjoy family time with Patti while doing air conditioned activities such as attending “Pirates of the Caribbean”. Movie theatres are not only blessedly air conditioned but offer 30+ ft images, perfect for Patti’s visual impairment symptoms. And of course, there is always the local ice cream parlor!

     (I was surprised to discover what with all the movie tie-in’s these days, that no one has marketed an ice cream with a "Caribbean” or “Pirate Rum Chocolate” flavor. <grin>)

Caregiving: reflecting on ...

     Reflecting on my periodic entry about Patti’s “level of disability & ability”, I can’t help but find it curious over these decades that while science tries to measure the impact of a chronic illness or injury, on the other hand we do not try to evaluate the potential of those without physical or mental challenges.

     I’m reminded of a line from the movie, “A Knight’s Tale”; “You’ve been measured. You’ve been weighed. And you’ve been found wanting.”  What a mess if standards were applied to the ‘activities of daily living’ of the able bodied?

Caregiving: level of disability

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

     MS 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.  

      Neurologists often 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.

     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) 

Caregiving: gospel plows and vigilance

     Friday night was an “exceptional evening” for Patti going for an outing until after 9:30 PM. Multiple Sclerosis “fatigue” has given her a natural body clock that wants to go to bed by 7:30 PM. I should rephrase that “demands” to go to bed by 7:30 PM. <grin>

     We went to see The Buc Hill Aces featuring Brian Lockman at the Cornerstone Coffeehouse in Camp Hill, performing “songs you probably won’t hear anywhere else”. <grin> We’ve known the Lockmans since we moved up here, our daughters attended high school together. I meant to ask why the group is named after an old Pittsburg Pirate pitching staff, but that will have to wait. After all what’s in a name?

    Amazingly Patti found herself in the same audience with one of her cousins – JoAnn, Patti thinks. Prompting me to remind her that “it’s a small world” after all (and begin singing the dreaded song <grin>).

    Fortunately she and MS fatigue could be bribed by a Latte and a brownie.  And there was a chance to sing, after all, along with the refrain to an ancient Bob Dylan song, “Gospel Plow.” Definitely one song you probably won’t hear anywhere else. Brian's music and banter was perfect for the intimate environment ... and most important a fun evening out! 

     Outings and such never diminish the necessity for caregiver vigilance. I just find it boring to dwell on it in reporting all the time. Also over 20 years I’ve become very good at my job and can balance caregiving within other environments - to a casual observer it may even appear masked. However on the other hand I don’t want to paint a false picture to any reader.

     Any outing has at risk situations. MS related symptoms of dysphagia demand attended eating at all times, including snacking. I have to be her sentinel to compensate for her visual impairment, memory loss, and mental confusion. Unattended Patti can place herself in harms way in the blink of an eye, most dangerous are choking or falling.

     Falling? How can someone fall out of a wheelchair? More easily than can be imagined. Wednesday evening I received an embarrassed call from her care facility informing me Patti had slid out of her chair. Law requires they report every such incident. Even at a 24/7 care facility with staff in abundance and an alarm on her chair, she still manages to thwart the best of defenses, if given that “blink of an eye”.

     In a social environment, a caregiver has to turn up the sentry radar. There is unseen caregiver work behind any successful outing.

Caregiving: coffee house & camera phone

     Stepping out for dessert Thursday turned into a rather interesting evening.  

    Leaving our favorite coffee house, Cassa Mani, Patti and I happened to notice the historical marker in front of the building across the intersection and learned some more surprising history of “our intersection”.

    James Wilson, 1742-1798, was born in Scotland and built a successful law practice in Philadelphia before buying a farm near Carlisle, PA where he was elected to the Continental Congress. As one of the 56 Signers of the Declaration of Independence, he was one of the “Founding Fathers” of the United States. … and prior to the Revolution lived right on this corner!

     Following the Revolutionary War and Independence his life and fortunes went more down than up including debtor’s prison and the final years of his life living with friends (or homeless in the late 1700’s).

     Interestingly, today the building where he lodged and from where he rode off from to “sign” the Declaration of Independence is the “James Wilson Homeless Bridge” providing housing and self-enhancement programs for homeless and potentially homeless single adults and families.

     … Odd how history plays out, isn’t it? And it's nice to know that the ride to Independence that left this intersection 230 years ago is still about "life, liberty, and the pursuit of happiness".

    Then back at Patti’s room we discovered a thief was busy in the bird feeder right outside her window! The tree rat wasn’t even wearing a ski mask. I guess he knew Patti was visually impaired and couldn't identify him. He had opened the top and climbed right into the feeder. Grrrrrr! Thank goodness for camera phones. <grin>

                          

Caregiving: 4th of July

The Harrisburg American MusicFest is the state’s largest Independence weekend music festival. … and even more importantly an opportunity for Patti to open up her scooter full throttle. <grin>  

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.