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>

Caregiving: each day is like a jig saw puzzle

     With the temperature at 70 degrees Thursday, I brought Patti home, grilled out on the patio, then headed to our neighborhood ice cream store. RAKESTRAW’S with 40 flavors of ice cream is in their 103rd year of business. Patti chose a “Teaberry” milkshake, a cone of “Chocolate Almond” for me. 

     Variables galore could have influenced such an evening before acquiring our accessible van three weeks ago. I may or may not have even tried such spontaneous plans and hoped to include Patti. She may or may not have been able to transfer for some or all of the activities.

     In many ways each day is like a jig saw puzzle, the accessible van has simplified the process by creating fewer and larger pieces vs a pile of tiny pieces to try and assemble.

Caregiving: "Tale as old as time ..."

     Sunday we attended our daughter’s high school’s production of Disney’s Beauty & the Beast.   

     Seated only a few rows back this picture even in life size scale was only a living blur of changing colors and shapes to Patti’s MS vision.

     Unlike a mega screen at a movie, live theatre for Patti is experienced without the benefit of costumes, sets, and characters.

     Talking with able bodied and able visioned people after the play, I was impressed by a remark I overheard Patti make in conversation, “Just because I can’t see it, doesn’t mean I can’t enjoy it. I hear too well ... plus I always have my imagination!”

     Just being able to read this computer screen I know I too often let my sight trap my 'focus'.

 “You can't depend on your eyes when your imagination is out of focus.”           Mark Twain

Caregiving: a cheese epiphany

     Multiple Sclerosis symptoms are defined clinically but when subjected to interaction can range from odd to phenomenal but always interesting. Outings, I believe, are important for Patti because reality is rich in the stimuli of unknowns. 

     Sunday we made a quick stop at the grocery store. Patti thoroughly enjoys going to the grocery store. It’s never an errand to her, it’s an outing.

    Symptom: visual impairment - Patti is “legally blind”. There is a clinical definition about visual distance, and if you only observed her watching TV you would see her sit within 2 – 3 ft of a 36” diagonal TV screen in order to see it. Yet ‘MS vision’ as I understand it is more like looking through a three dimensional stain glass window with half the pieces missing. Depending on circumstances glimpses from certain range and depth plus the missing pieces filled in by memory can create apparent ‘vision’.

     Taking that symptom out of the clinical and into reality at the grocery store … Deciding that she wants a bag of chips I roll her down the chip aisle reading off the countless options. Suddenly she points and tells me she wants “that bag of UTZ’s potato chips with the wrinkles.” In disbelief, I pace off the distance of 15 feet to the bag of chips she is pointing at. 5X the range of her vision. Handing it to her she holds it about 6 inches from her face while looking at it to make sure it is an UTZ potato chip bag. <grin> Spooky, isn’t it?

     Symptom combo: Dysphagia and Emotional Lability. Dysphagia usually is associated with problems in swallowing and the threat of choking but can also cause speech problems. Inability to control volume is always the most interesting of these. Emotional Lability basically means you never quite know what to expect.  

     … In the dairy aisle I hand Patti the Velveeta cheese that we had come specifically to buy for grilled cheese sandwiches to put in the basket in her lap. Patti appears to ponder it then boomingly announces to me and every other shopper in the dairy aisle that “Velveeta cheese SUCKS!” <grin> With shoppers in the dairy aisle frozen in place by the outburst, Patti continues her cheese epiphany sharing how she always has to eat the stupid Velveeta because everyone else likes it, and it’s not even really cheese. I notice a couple carts starting to quietly inch away and suspect they probably possess some of the evil Velveeta and are trying to escape this cheese Nazi in a wheel chair. <grin> Such symptoms tend to be brief in duration and soon we are back to finishing our errand, minus the Velveeta. <grin>

[Editor's Note: In the quarter century I've known Patti I've never heard her express any feelings about cheese.]

     Where a quick stop at the grocery store on a Sunday afternoon should have been typical almost boring; instead it became a more colorful and interesting moment in time.

Caregiving: St. Patrick's Day 2006

     Yes, these pictures are reposted from my St. Patrick’s Day journal entry from last year.   

     Mother Nature is not the most dependable playmate. Until I capture a Leprechaun on my digital camera these pics will have to do as my yearly 'pot of gold'.  

     Kissed with snow flurries last night was a beautiful surprise and surely a sign that even Mother Nature enjoys the "wearing of the green".     

                   

Caregiving: Corned Beef & Cabbage

     Something as common place as making plans for a family dinner together at home is something we have not been able to dependably do for two years. Now with the wheelchair accessible van part of our family, transferring Patti is no longer an unknown variable.    

     This van continues to impact daily life in so many positive ways. I’m tempted to use the word “blessing”; except, I suspect there is some truth in advertising law that prohibits language implying divine favor upon a Dodge.  

     Tonight was our St. Patrick’s Day Family Dinner because tomorrow will find the three of us headed in three different directions. After all when a Patrick marries a Patti and their daughter is named Megan, you can safely guess there will be a Corned Beef & Cabbage dinner. <grin>  

     While AOL Radio entertained us with St. Patrick's Day music in the background, we enjoyed my 2006 menu:  

Guinness

-----

Kerrygold Vintage Irish Cheddar Cheese (imported)

-----

Irish Soda Bread (bakery fresh)

-----

Corned Beef & Cabbage (cooked in crock pot 12 hrs)

… corned beef, carrots, onions, and cabbage

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Dublin Mudslide Ice Cream (Ben & Jerry’s)

Irish cream liqueur ice cream with chocolate chip cookies

& a coffee fudge swirl

-----

 Italian Roast Coffee

-----

     Leftovers? Just enough stashed away for a corned beef sandwich for ME for tomorrow. <grin>  

Caregiving: Ides of March 2006

     March 15th, the “Ides of March”. William Shakespeare immortalized this date in a soothsayer’s advice to Julius Caesar. Maybe what he really captured is a universal truth that we all tend to ignore advice. <grin>.  

     The “Ides of March” 2006 marks the 2nd anniversary of Patti’s admittance to a 24/7 facility. This journal, “Caregivingly Yours” was created in April 2004 to share our transitional year from the homecare era to a care facility.

     Sometimes standing on a beach watching while the sun sitting on the ocean’s horizon paints the sky; mesmerized I easily forget if it’s a sunrise or a sunset.  Today’s benchmark is that kind of a day for memories and dreams for me.

Blessed sister, holy mother, 

Spirit of the fountain, spirit of the garden,

Suffer us not to mock ourselves with falsehood

Teach us to care and not to care

Teach us to sit still

Even among these rocks,

Our peace in His will

 (excerpt from) ‘Ash Wednesday’ by T S Eliot

Caregiving: MS Awareness Week

               

http://www.nationalmssociety.org/awareness.asp

Caregiving: brain freeze

    You know that Spring has really returned on the weekend that Rita’s reopens for business! 

    Patti more than enjoys their “Misto Shake” <grin>. Flavored Italian Ice and frozen custard are blended into a sub-arctic experience.

     Spring 2006 began on Sunday with her same phenomenal ability, Patti can straight out inhale a Misto Shake. Trying to keep pace with her, like school yard kids, I am soon writhing with “brain freeze”.

     Within minutes Patti is complaining about the fresh blueberries obstructing her straw from getting the last drops of her Blueberry Misto Shake and I am still looking at a two-thirds full cup. ... Thank you Patti, for the creative and subtle, "in your face" <grin>.

     It’s my theory that her immunity to brain freeze has something to do with Multiple Sclerosis symptoms, but maybe that's just sour grapes <grin>. ... or maybe neither one of will ever really grow up?  

Caregiving: accessible van shopping

     What began as sticker shock depression, then became resigned acceptance that, with a budget of $350 for a car payment to work with, I could only afford a 7 year old “used” van with close to 100, 000 miles ended quite differently.  Out in the drive way sits a 4 year old Dodge “certified previously owned” Grand Caravan ES with only 30,000 miles and many warranties sill in effect. My original monthly payment goal is identical to the penny. How? 

Sticker shock  

     If you look at price sticker only then wheelchair accessible vehicles = luxury vehicles. This is complicated not only for your own consumer brain to process but also mainstream lending institutions, insurance companies, and in some cases, taxing authorities.

     Our 2002 Dodge Grand Caravan ES with IMS RampVan Conversion = a 2002 BMW 325xi Sedan in a 'price book'.

Educate YOURSELF

     It takes time to overcome the sticker shock and get back on track to shop for what you need. True hybrid machines, part vehicle and part medical equipment, you must educate yourself to insure you are not comparing apples and oranges when shopping.

Be realistic

     Personally I shop backwards for vehicles. I begin with what I want to make in a monthly payment. The Internet is full of on-line auto loan calculators and you can quickly determine what that translates to for total sales price. Don’t drift from YOUR monthly payment goal even by a penny.

Custom Conversion

     Explore having a vehicle custom converted vs. buying an already converted vehicle. This could be particularly important if your need is pediatric. Height and weight of the person seated in the wheelchair determine the scope of any modifications as well as their abilities. You may already own an acceptable vehicle, or you may be able to get a better deal on a regular van and have it custom converted. Approximate full wheel chair accessible conversion costs are $14,000-$16,000 for a mini-van and $6,000-$9,000 for a full-size van. Newer special automotive seats are available around $6,000 which act as mini-lifts and can be installed in a wider range of vehicles including certain sedans, station wagons, SUV’s, and trucks. None of these prices reflect the cost of the original vehicle. … At worse this improves your education of what you are shopping for in used accessible vehicles.

Shop death notices

     Yes, it sounds ghoulish but this is the proverbial 'needle in a haystack’. Converted vans are sold at lower than regular van prices in estate sales by distant family who has no cost invested in the vehicle or use for it. Of course, unless you are comfortable mechanically it’s pot luck. But bottom line the price savings could be dramatic enough to justify the lure and chance.

Financing

     Financing cannot be underestimated. Unlike able bodied, upwardly mobile people you cannot assume economic growth. Shop it as diligently as the vehicle. Financing is available for terms as long as 10 years. However watch those rates and always extend out the math! You don’t want to find yourself in an at risk economic scenario if you need to sell the vehicle later of owing more than it is worth.

Patience & More

     I began my shopping looking for “used” accessible vans in the 7 year old range with mileage close to 100,000. That’s what I thought I could afford.

     The National Multiple Sclerosis Society (NMSS) supplied me material about PATF (Pennsylvania Assistive Technology Foundation). PATF offered to broker financing at 4% for 72 months vs. an average market rate of 7.5%. Basically that cut “interest” in half enabling us to shop for younger vehicles.

     I’ve concluded most listed prices for these vehicles can be negotiated at least 10%. Our dealer eventually sold for 16% less than originally listed price. Bartering remains the foundation of auto sales. Don’t let “list price” chase you way.

    Additionally the NMSS offers a yearly family grant of $700 for durable medical equipment and respite care. Lord knows a wheelchair accessible van IS certainly both <grin>. Over 6 years this grant will help pay 18% of our loan. Explore any and all such grant opportunities. Grant money unlike loan money is not expected to be repaid.

      I am always grateful for the assistance of organizations such as PATF and NMSS.

      Bartering, grants, and special loan rates brought the overall costs down over 33%.  Tax deductibility could increase actual savings further, but that is to be determined.  Without ever changing my original monthly payment budget I ended up with a van with one third the mileage I assumed we could afford and half the age.

     Most importantly transferring is now safer. Multiple Sclerosis will progress and transferring was dependent on my health and strength. Our current method was increasingly failing and both Patti and I were at risk during a transfer. The future had to be embraced without inviting bankruptcy.

Caregiving: assistive technology in action

With the help of our daughter on camera here’s what assistive technology looks like in action.

Caregiving: wheelchair accessible van

     Patti and I finally took that quantum leap along the assistive technology timeline last night. Patti “rolled” into our Dodge Grand Caravan ES with IMS RampVan conversion.   

     I feel like I’m watching science fiction. With a push of a button the van kneels, door slides open, and the power folding ramp extends like a giant mechanical bird’s wing while lowering to form a ramp.

     Pictured below are the 'cave drawings' of the primitive but easily affordable technology we have been using. A transfer board, my strength, and the physics of an incline.

                            

Caregiving: chocolate chip cheese cake

     Stepping out / rolling out Tuesday evening to our favorite coffee house in the historic district for dessert, Patti and I learned some local history. The building that houses Casa Mani Caffé actually began as a German Reformed stone church in 1827. Then something about problems with “boisterous behavior during church services” and “offensive odors from stables” led a nearby Methodist congregation to buy them out 6 years later. <grin>   

     One can only imagine a town crisis on the very spot where we sat 179 years later and ate chocolate chip cheese cake while Patti sipped White Chocolate Mint Mocha and I had Macchiato straight up. 

     Maybe it was the espresso in my Macchiato affecting my thinking but there is a lesson here about religious sects of the same faith managing to work things out peacefully.

     15 minutes after leaving Casa Mani when a nurse asked Patti what she had been up to, Patti could not remember. MS memory loss symptoms had already misplaced the evening. Alas! At least Patti still enjoys it while it IS happening. <grin>

Caregiving: the caregiver initiative

U. S. Surgeon General, Richard H. Carmona and Johnson & Johnson Company recently launched The Caregiver Initiative. 

“… to call attention to the vital role that family caregivers now play, to help them maintain their own health and well-being while they care for others, and to prepare all Americans to better recognize and accept the responsibilities of caregiving that may well affect them personally as our society ages. …”

     Anything that may smack American culture upside the head and raise consciousness is positive. Personally I haven’t been too excited about this because of the Federal government’s involvement.

     The US government is inept with healthcare related issues. The Federal Bureaucracy by its nature is not ‘caring’. These are the same people who still haven’t figured out how to fix the Medicare D Prescription Plan debacle. Need I add New Orleans or Iraq to the Federal Government’s resume?

     I did find some statistical snippets fascinating in their “launch”:

The Impact of Caregiving on People's Health

….. Over the course of a caregiving “career,” family caregivers who provide intense personal care can lose as much as $659,000 in wages, pensions, and Social Security. (Easily true! Everything is exhausted and you have been unable to acquire any retirement assets).

….. Only 26% of caregivers provide care for more than 4 years. (At 15 years, I guess I should feel special.)

A Nation Ill-Prepared To Give or Receive Care

….. Only 41% of adults have set aside funds to cover additional expenses, only 40% have signed a living will or healthcare power of attorney.

….. Only 35 % of all adults said they had purchased disability income insurance, only 27% have purchased long-term care insurance.

….. Only 34 % of Americans say they have talked with a family member or friend about providing care to them in the future.

     I would have guessed those statistics. Our own friends and family would not score much better, and our story is in their face. What about you? If not GET BUSY, especially the 'living will' and 'health care power of attorney'. You probably have no idea how critical those two documents could become.

     Does this mean I’ll get a cool sticker for Patti’s wheelchair to place by the back handles that says “Surgeon General’s Warning: caregiving may be hazardous to your health.” <grin>

Caregiving: journal word clouds

     “Caregivingly Yours” as a word cloud! Some creative fun compliments of my favorite journal from the “UP” <grin>(Michigan's Upper Peninsula), “Simply Read”.

    

Check out Cindy’s entry “Word Cloud”.

Caregiving: "a church moment"

     Yesterday was Sunday and I couldn’t help but reflect on how caregiving + Sunday + church + cognitive symptoms = some interesting experiences.

     One of my favorite such ‘church moments’ was several years ago and involved an intermittent episode of Multiple Sclerosis cognitive symptoms, in particular mental confusion.

     At the offering collection, a teen age girl came up our aisle with a beautiful silver plate which she dutifully handed to the person on the end of each pew who passed it along. Coming to our pew, she handed the plate to Patti, seated on the end.

     Startled and in grateful surprise Patti loudly exclaimed, “THANK YOU, THIS IS VERY NICE OF YOU”. Loudly is an understatement, yelled would be better. Patti cannot always control speaking volume and the more she tries the more opposite it can become.

     Patti balancing the plate on her lap begins going through her “gift” like an excited child might sort through a Halloween candy bag. The young volunteer is flabbergasted and turning red with embarrassment. She politely tries to whisper to Patti that the plate is supposed to be passed along to the next person. Unknown to the poor girl reasoning and such will have no effect on such symptoms.

     Trying to avoid laughing, I pried the plate away from Patti, “the cognitive pirate”, and continued its passage down the pew. I dismissed Patti’s glare of shocked incredulity with a shake of the head and a simple “No, it is not for you!”

     I suspect that young lady “wondered” for quite a while IF the next person she handed an offering plate to would pass it along. <grin>

Caregiving: gumbo metaphysics part 1

OK! I mentioned my “Gumbo Metaphysics” in earlier entry vs a philosophy of caregiving. I have no all encompassing recipe. Knowing what I know now, I can understand wondering if someone could be your caregiver or could you be theirs? All I can share is how I came to brew my own gumbo metaphysics of caregiving.

Caregiving more likely than not is thrust upon you. In the beginning you try to share with the other person their critical stages of grief, rage, and acceptance yet you also begin to find yourself alone in a kind of parallel universe as this new caregiver type person. Who are you? What do you really believe?

First of all, caregiving is a CHOICE; the person you are caring for has NO choice to be ill or disabled. You will always be seperated by that reality. Choice motivates and can haunt. Choice is not a rock, it’s more like a beach tested daily by tides and randomly battered by storms.

My personal recipe for gumbo metaphysics began with Maggie Strong’s book, “Mainstay” as the stock. I grabbed for a manly-man pinch of true grit from John Wayne movies, and a pinch of the tireless knight errant from Don Quixote. (Women might phrase that differently with variations of the "L" word but I'm a guy and needed manly inspiration.) With time I found myself adding a pinch and a half of the fear of loneliness from Poe’s 'The Raven'. What is important is that you start pulling ingredient ideals from anywhere.

Stress becomes a critical ingredient. Try what you want; sooner or later you learn you have to embrace it. Somehow all the copies of the Serenity Prayer on earth are missing the asterisk at the bottom that specifically excludes caregivers. Stress’s good buddy ‘anger’ is an alternative energy source. It can be harnessed and has fueled many new limits of endurance.

Our story is about spousal caregiving, marriage vs divorce cannot be ignored. Give or take, two thirds of marriages currently end in divorce anyway. Marriages in this pressure cooker have divorce rates far higher. You do the math, what are your odds? Additionally, there are logical and economical reasons to divorce sooner than later if that is the decision you make. No one is a bad person for choosing not to be a caregiver.

In retrospect, my early recipe was adversarial in nature. Like the gunslinger character in our Old Tyme photo, I believed I could defend my family from an enemy, Multiple Sclerosis. That was inadequate, then, and for the decades of attrition that lay ahead. It was especially flawed for the dual role of spouse caregiver and nurturing parent. More seasoning was needed.

(I’m always conflicted whether “to be continued” or “posting lengthy entries” is the worse sin. Leaving it to a coin flip, this will be continued … )

CaregivinglyYours.com

Tags: caregiving

Caregiving: lost in translation

      As a caregiver I may feel frustration over something, while Patti’s MS cognitive symptoms can put her on an opposite track over the same concern. It makes communication and resolving an issue so complicated. And of course, the opposite can just as easily be true.

      Because I have no medically diagnosed cognitive symptoms, I assume my perspective is the correct one. <grin> Which only confounds any attempt to talk through something.

     Somewhat like having a conversation with yourself but somehow something gets lost in translation. <grin>

     Before MS took Patti out of the work place, she was a buyer for a paper company eventually aquired by International Paper. She handled all negotiable family purchases such as cars and houses. As recently as 4 years ago, though no longer quick, she was still a valuable consultant and we could work as a team.     

     Shopping for a wheelchair accessible van has hammered home to me how much cognitive and reasoning deterioration has occurred in ways no medical test could evaluate.

     In a relationship, the caregiver acquires by default whatever skills the other person brought to the relationship as they slip into dependency. You don’t always see that coming.

Caregiving: Fastnacht Donuts & Pancakes

     The day before Lent seems one big excuse to EAT. For those trying to diet it must be the day from hell, and appropriately named “Fat Tuesday”.

     Fat Tuesday translates into Mardi Gras in French but we will ignore that pompous culture.

     Living in Pennsylvania Dutch influenced Central Pennsylvania we began our day with a Fastnacht Donut. (Fastnacht translates from German as “eve of the fast”) In days of yore, the Fastnacht was made with all the sweets and forbidden items in the household to eliminate temptation during Lent. (A local radio station called them 'a donut on steriods'.<grin>)

     Raised in Irish traditions myself, it’s Shrove Tuesday or Pancake Tuesday. Long ago pancakes were eaten to use up milk and eggs, which traditionally were not eaten during Lent and would spoil. A surprising pragmatic pre-Lenten celebration, considering Irish culture has the enigma looming ahead of St. Patrick’s Day in the middle of Lent. Fasting after all has to be kept in proper perspective. <grin>

     Of course, I brought Patti home for a family pancake dinner. Driving home I hear her rustling through some papers in the back seat. Glancing in the rear view mirror I see a face with cheeks stuffed like a chipmunk with tell tale powdered sugar all over her face and clothes. I didn’t even have to ask, even though "legally blind" Patti's sense of smell had found Megan’s left over half of a Fastnacht donut. <grin> ... and saved our daughter a lecture from Dad on leaving food in the car. <sigh>

Caregiving: philosophy of caregiving?

Do I have a philosophy of caregiving? No! Philosophers have time to philosophize.

At best I’m guided by an ever evolving kind of “gumbo metaphysics”. I grab snippets from here and there that inspire me and throw them in to simmer. I DO NOT understand more than I will ever understand. Some ideals are inconsistent or even in contradiction if viewed separately. However when simmered together that resulting “gumbo metaphysics” has guided my wandering through the years of spousal caregiving and parenting that resulted from living with Multiple Sclerosis in our family.

I’ll try to make the time to jot down the current recipe in another entry.

CaregivinglyYours.com

Tags: caregiving

Caregiving: PATF

   While reading the Fall/Winter newsletter of the Pennsylvania Assistive Technology Foundation I found myself mouthing this piece of a sentence from an article over and over again.

"... remember that people are unique individuals and that their abilities or disabilities are only attributes, and do not define who they are..."

        The newsletter is available on line at

http://www.patf.us/pdf/PATFNewsletterFall2005

     The PATF Newsletter is not about to crowd out Entertainment Weekly, Cat Fancy, and National Wildlife from our coffee table. <grin>

     I've only recently discovered this wonderful organization. Among their many works, they act as brokers for low interest loans for people and families trying to buy assistive technology, wheelchair accessible vans included. Hey! 6 or 7 year auto loans at 4% interest is a godsend when you are trying to buy one of these things.

Caregiving: CAUTION caregiving can be dangerous ...

When 'Till Death Do Us Part'

Takes on New Meaning

"…The study suggests that diseases that are more disabling are more likely to result in disease and death in the caregiving spouse," Christakis says. Spousal illness might also deprive the partner of emotional, economic or other practical support, or might impose stress on the caregiver that may contribute to the risk of death, the investigators theorize….” 

     The ‘at risk’ nature of caregiving was hammered home to me several years ago when I adjusted some insurance policies. “Spousal Caregiving” was considered more “at risk” behavior than more ballyhooed hazards such as smoking or overweight. The insurance industry had calculated the effect of caregiving on their profit and loss long before medical studies continued to “theorize”. Fortunately, I was not a sky diving caregiver or I would have been uninsurable.

     Personally, I guess I'm "immune" from this study's theorizing because, as I've pointed out before, at Patti's urging "in sickness and in health, till death do us part" was excluded from our wedding vows - just in case. ........... Now, our 17 year old daughter would jump all over this as only prooooving her point du jour, "you never listen!" <grin>

Caregiving: level of disability

     A numerical level of disability is necessary for communication within the medical profession. Multiple Sclerosis complicates labeling because physical and cognitive symptoms may progress differently in each person.   

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

     Activities of Daily Living (ADL) - bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are evaluated on the Barthel Index of ADL on a scale from 0 to 20, with 20 being “independent”. Patti’s score is 2.

    Periodically I feel it is appropriate to numerically identify the level of Patti’s MS progression and to numerically identify her dependence on others for 90% of the activities of daily living. 

     Not everyone with MS may have the same level of disability nor may ever progress to the same “numbers”.

     However, "Everyone will one day know or love someone who can no longer take care of themselves." (Maggie Strong)

Caregiving: weekend van shopping

     Continuing our accessible van shopping through the Presidents’ Day Weekend, it is interesting to learn that the following vehicles cost the same as a wheel chair accessible 2005 Dodge Grand Caravan:

 

‘04 Jaguar XJ8   -or-   ‘04 BMW 325Ci Convertible

 

      Makes you feel first class. <grin>

Caregiving: van shopping

     Patti and I tried out Dodge Grand Caravans with VMI Northstar conversions, today. We felt like Stone Age people suddenly encountering the modern world.      

     With the push of button the van kneels, door slides open, and ramp slides out from in the floor of the van! Simply roll Patti in, her wheel chair easily and safely anchors into a choice of locations. Push another button and the ramp retracts into the floor, door closes, and off you go. Seating even configures to hold a variety of combinations of wheelchairs and/or seated people.

     Struggling in the parking lot to get Patti in and out of our Ford Taurus Wagon with a transfer board and folding and unfolding her wheelchair were a dramatic contrast.     

     The sticker price however leaves me wanting to join Tevye in a duet of, “If I were a rich man …” Powerball Jackpot is worth 365 Million this Saturday, who knows?

Caregiving: Medicaid changes

        Impact of the Deficit Reduction 

Act of 2005 on You

     Click on blue headline from Caregiver’s Home Companion, for a brief article of how this Act “will make major changes to Medicaid law” and ”… who is affected by these changes”.

     The impact of this legislation is worth noting for anyone; however, especially those with a chronic illness or disability.

Caregiving: remove popcorn before ...

      Viewing the “The Pink Panther” movie could be hazardously funny to anyone with symptoms of dysphagia. Caregivers should remove popcorn before the movie begins. 

     Twice I had to help Patti through coughing/choking episodes brought on by hysterical laughter. Finally, with popcorn under my seat, we enjoyed a hilarious Monday evening at the movies.    

     Besides the mega screen for visual impairment the film fit so many of Patti's MS related cognitive and attention symptoms like a glove. Physical comedy with bursts of mad cap zaniness, and 90 minutes in length. ... Not the kind of review you read in any mainstream publication. <grin>

Lincoln's Birthday Nor'easter

Caregiving: making snow balls

NOR’EASTER! The crème de le crème of winter!    

     Chatting with neighbors while shoveling snow … playing and making snow angels … picking up Patti and driving back roads with tree branches bent low with snow ... warming up in front of a fire … a winter afternoon nap … family time for conversation and memories.

     Making snow balls for Patti and letting her throw at me. <grin>  

Caregiving: journal benchmark

     For number buffs TEN is “… the paradigm of creation. The decad contains all numbers and therefore all things and possibilities…”

     While I am not a numerology fan, I certainly can appreciate coincidence. Sometime during the hours of February the 10th the counter on this AOL Journal crossed the 10,000 mark since its creation on April 24, 2004.

     I am running out of synonyms for overwhelmed to end an overwhelming week of gratitude and awe.

Caregiving: Special Olympics

     Friday I was pleasantly surprised and recognized with this watch by the Prince George’s County Special Olympics. As a deejay entertainer I’ve had the pleasure to be associated with this organization for countless years.      

     Whether it is a Christmas party for elementary age students, a Valentine luncheon dance for high school age athletes or the Games themselves to entertain these young people is to be ‘blessed three fold’.

     Maybe because I also have the eyes of a Multiple Sclerosis caregiver spouse and a parent I believe I see that behind every one of these young people is a family surviving overwhelming daily obstacles.

     Entertainment is simply a diversion for anyone.  Except when these unique celebrations occur, then to me it kind of becomes a quest.

Caregiving: thank you again, Australia

I must express our thanks and sense of wonder whenever I read the latest issue of:

Carer News in the North - Winter 2005

Newsletter of the Commonwealth Carer Respite Center

An Australian Government Initiative      

“… This is the personal ‘blog’ (online diary) of ‘DaddyLeer’ in the US, who tells the story of his experiences caring for his wife who has had MS for 19 years. The journal chronicles a “transitional year from home caregiving to the care facility era”.

    Thank you all for again for highlighting "CaregivinglyYours". To share our story with 'friends' so far from home will always seem larger than life.

     Reading your newsletters I’m always left inspired (and a touch envious <grin>) by the efforts, funding of programs and support of “carers” (caregivers as we call ourselves in the US) by the people and Government of Australia.

Caregivng: enduring frustration

     Caregiving is frustrating more often than it is ever a win or a loss. Under pressure distinctions blur between behavior associated with chronic illness/disability and anything else. 

     Plans with time tables can be one way tickets to caregiver psychoanalysis. More often than not, I end up empathizing with Wile E. Coyote's endless quest to try but never succeed.

                           

    Telling our story, I notice I tend to share the highlights. Monotonous entries of exasperation would be dull; however, enduring frustration may be the bottom line to caregiving. 

Caregiving: flight of steps

Reading an entry from another journal, My Journey With MS: Stress, I was struck by this line: 

     “ It is frightening not to be able to navigate a stair case when you used to be able to ice skate”

Christina’s entry reminded me...

      I guess it was about 6 years ago, I returned home to find a head sized crater in the drywall at the bottom of our stair case and a smaller indentation in the drywall on the landing where our stairway turned 90 degrees half way down.

     Patti could only offer that she thought maybe she fell down the stairs but couldn’t really remember. I found no cuts or bumps nor was she complaining of pain. I’m not Sherlock Holmes but there was enough drywall evidence in her hair and clothing that a deduction was elementary.

     We remodeled again, creating a bedroom on the bottom floor for Patti before eventually moving to a one floor home. 

     Depending on variables like your own home, homes you visit, Multiple Sclerosis progression, or symptoms ... a stair case could become more than a flight of steps.     

Caregiving: black & gold schedule

The Super Bowl has become such a part of Americana it even impacts care facility daily schedules as evidenced by Patti's Friday’s schedule:

Friday, February 3

Super Bowl Team Shirt Day

08:30 Breakfast ... 09:45 Exercise ... 10:00 Cookies and juice ... 10:15  Games and activities ... 12:00 Lunch ... 14:15 Super Bowl Talk Group ... 15:00 Juice Cart ... 17:30 Dinner ... 18:45 Movie.

     Obviously residents were not investing in fan mania merchandising but "colors" were what was important. Steelers' Black & Gold was everywhere. After all this is Pennsylvania.

Caregiving: scootering at Wal-Mart Park

     Why let a February night coop you up? Scootering at Wal-Mart Park provided a wacky Wednesday night outing! <grin>

     Their complimentary scooters maneuver like a tank, but they do make cool beeping sounds when going in reverse. Cruising through the artificial flower section you can even get a park atmosphere.

      Patti "loves" scootering. Her MS symptoms require an attendant or companion to make it possible. With acres and acres of paths she had a blast rumbling through Wal-Mart Park. Why wait till Spring?

     Good times can happen making the best of what is available to you.    

     (Pictures were taken with my camera phone.)