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

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Kerrygold Vintage Irish Cheddar Cheese (imported)

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Irish Soda Bread (bakery fresh)

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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

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 Italian Roast Coffee

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     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>