Sharing the trial and error learned lessons of a MS spouse caregiver / carer about family, home care, and transition to the care facility era from 23 years of living with Multiple Sclerosis as a family ... a ‘warts and all’ picture of living with MS.
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.
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.
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>
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.
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!
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:
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.
“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>
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.
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.
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>
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>