Caregiving: bureaucracy & free thinkers

     Yesterday we renewed Patti’s Pennsylvania Photo ID. In post 9/11 America whether you drive or not you NEED an official photo ID. 

    Any such collision with the bureaucracy of the able bodied is always interesting. For example, Patti cannot see far enough to “please look at the red mark on the camera and smile if you like”. My favorite was “Please sign your name WITHIN this box on this card” to which Patti responded “What card?” <grin> Everyone must maintain patience and a sense of humor.

     … and as noted in another caregiver journal, surprisingly this motor vehicle satellite center also had NO designated accessible parking. We used a grocery store’s accessible parking about a block away.

     In Pennsylvania you also have the option to take care of voter registration at the same time. Confirming her voter registration I had to smile, our family of three includes one Democrat, one Independent, and one Republican. “Living with MS” has obviously created an environment of free thinkers <grin>.

Caregiving: Writes of Passage

           Writes of Passage 

Our daughter launches her life,

Moving proudly into the Universität.

Walking parents as ‘couples’ surround me.

Thousands and I can’t see a wheelchair.

Mom’s not here, safe, maybe aware.

When did reality become the frontier?

Daddy travels West, yep, there’s a sunset.

Empty home? Not if you ask the cat.

Caregiving: scootering

     Caring is more often than not intuitive. Physical and cognitive symptoms can easily intimidate you if you only look at cause and effect. 

     Medical professionals sometimes seem to hang an albatross around their own necks with their dependency on empirical evidence.  Quality of life is an entirely different fight than medical treatment.    

    For example, “scootering” or going for rides on her electric scooter for whatever reasons empowers Patti and makes her FEEL better. 

     Patti is legally blind, easily confused, and quickly forgets what she is doing. These are not logical credentials for operating an electric scooter.

     It falls on me as caregiver to find a way to make it possible.  

  

     City Island is a mile long island in the middle of the Susquehanna River. It is many things to able bodied people, however above all it has a road (closed to the public) that encircles the island. Here on non-peak times Patti can roar away without risk of running into crowds of pedestrians or off a narrow sidewalk.

 

     On narrower sidewalks or paths I have to walk along side her and operate her scooter controls. This not only takes away the empowerment of scootering but invites outbursts of frustrated emotional lability.

 

     Some parks can be OK but even grassy fields have the potential of holes, rocks, etc that she is unable to see and can abruptly halt the scooter, risking catapulting her out.

 

     Progression of cognitive symptoms has lessened her ability to respond correctly to verbal cues, such as “veer right”, etc. Now I often use a more mechanical variation of “running with the bulls” for directional help, “Patti, just drive toward my voice”. … and prepare to dodge the oncoming whir. Charging at me for a target seems to add to Patti enjoyment <grin> and keeps me limber.

 

     It's doubtful a medical professional would endorse such behavior but the bottom line is it empowers Patti and improves the quality of her life. Feeling good, I believe, is good medicine. (Unless of course, I dodge the wrong way <grin>)

Caregiving: financial competency test

     Dementia and Alzheimer’s Disease are scary words to the public and when read in a headline too often people skip such articles and miss the phrase “Related Disorders”. MS cognitive dysfunction symptoms are part of that catch all phrase “Related Disorders” as are many illnesses.

 

Financial Competency Test for Dementia Patients Unveiled

     BIRMINGHAM, Ala. A team of UAB doctors has developed a 25-minute test that physicians can use to determine the competence of patients to handle financial affairs….

     … patients lose arithmetic and other basic money management skills, and the ability to make both complex and simple financial decisions.

     "They also become highly vulnerable to financial exploitation by others."

     "The findings suggest that financial capacity first becomes impaired in the MCI (Mildly Cognitively Impaired) period, ...”

 

       We learned this lesson the hard way over 10 years ago when Patti quickly ran up a couple thousand dollars of QVC charges on our VISA and couldn’t even really remember what she had ordered, and did she even get delivery. 

     It was a shock and a wake up call about cognitive impairment. And believe me few things are harder than when you MUST begin to legally define someone’s competency. Since my earliest age I was raised that ours is a nation of individual liberties and freedom. The morality and responsibility of competency gnaws at your soul. 

      Yet on the other hand financial exploitation of the cognitively impaired IS real. QVC is not alone among the predators.

     A financial competency test could be so beneficial to families. An early warning is much safer for all than an expensive wake up call.

Caregiving: throwing stones

     A choking person alarms people. That may be understating the reaction, people tend to freak out. However it is just another day in our story of “living with MS”.

     Patti’s symptoms of Dysphagia can confuse all swallowing related functions as Myelin deterioration short circuits communication between brain and appropriate muscles.  Patti can really choke if not monitored and assisted with eating, but also her brain can go into ‘choking mode’ without any actual threat to her safety.

     Sadly this malfunction seems to be increasingly impairing one of her favorite outings, movies. Concessions have nothing to do with these episodes. Rather they seem to be triggered if a scene is too startling, or too funny, or too thrilling. What begins as a cough or a clearing of the throat accelerates to choking.

     The first rule of first aid for choking is “If the victim can speak, cough, or breathe, DO NOT INTERFERE.” Accompanied by bursts of cursing <grin>, flailing about of arms, and “pauses” so she can catch her breath before continuing, these episodes are not “at risk”.

     Regrettably if not interrupted they can trigger the involuntary muscle responses involved in gagging and vomiting.

     Usually I try to distract her and simply tell her she is not choking, just breathe normally. Sometimes her brain listens and sometimes it does not.      

     After an attempt or two, well intended fellow movie patrons often begin to offer suggestions. “Shouldn’t you hit her on the back?” “Do you want me to go get help?” or less well intended have begun to complain … “Hey! We’re trying to watch a movie!”

     Once out of the theatre and in the hall her bout of choking ends. My theory is that the sudden change in environmental stimuli with bright lights, NO movie screen, etc ‘restarts’ her brain much like rebooting your computer when it locks up.

     Such episodes were once rare but now probably affect 1 out of 3 movies anymore.

     I’ve never found any formulas for success to insure Patti’s involvement in family type activities. Progression of MS symptoms can be as formidable as Goliath. As a caregiver you just have to keep throwing stones.

Caregiving: ... family first

     Most people are only familiar with illness or incapacity in an acute situation. If you get sick then you get better. If you sprain an ankle, you may hobble on a crutch for a brief period, then you walk freely again.

     Another common bond most share is that a catastrophic medical condition ends in death.

     “Living” with a chronic illness is an entirely different universe. There is NO Hallmark “Get Well Soon” phase and there is no end in sight. Yet as long as there is life there is hope and you learn to “live”!

     I never gave all this much public thought in the beginning. Then this journal soon began to take on a life of its own. Within a year it was highlighted in Australian carer publications, Eldercare.com, and even Forbes.com referenced it in an article on Medicaid planning. Questions in emails began to light up my mail box from readers of those articles.

      I share OUR story, which is all I really can share. I also share our lives because families facing the challenge of one member living with a chronic illness or disability are still families first.

     Children are raised, bills are paid, groceries bought, meals cooked and lawns are mowed. People still worry, laugh and cry. It isn’t that we do less; probably we do more than able bodied families because we have to.

     Family activities are as much a part of caring as the nuts and bolts of a wheelchair. You MUST create the time and the means for them.

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.