Caregiving: tragic story

This tragic story out of Dallas, Texas also involves caregiving, care facilities, and multiple sclerosis. ... I can understand how despair can erase the legal and moral definitions of quality of life and right to live or die. I pray the pressures and confusion of caregiving do not force more to such despair.

 

Elderly Man Dies Weeks After Killing Wife

By Julia Glick The Associated Press Friday, May 19, 2006

     DALLAS -- An elderly man who killed his invalid wife last month because his own health was failing and he couldn't bear to send her to a nursing home has died of cancer, his daughter said.

     "He was comfortable. He was at peace and ready to be with the woman he loved," said Sally Roberson, who discovered her 83-year-old father dead in his bed Thursday.    

     James Roberson was charged with murder after the April 25 shooting. His daughter said he put off the deed until "the 11th hour," when he feared he was losing the hand strength to fire his heirloom pistol. He then turned the gun on himself, but it jammed, his daughter said.

     He was freed on bail and spent his final days at his daughter's home.

     Sally Roberson said her mother, Mary Roberson, 83, would not have wanted to live without her husband.

     The couple had been high school sweethearts and were always together. After a series of strokes left her incapacitated and unable to speak, he tended to her every need, neighbors said.

     James Roberson brushed his wife's hair, washed her and spoon-fed her each day, but he was growing more ill from brain and lung cancer.

     He didn't want to send her to a nursing home, where workers were too busy to try to understand her labored speech and needs, Sally Roberson said, and he worried that his daughter, who has multiple sclerosis, wouldn't be able to care for her.

     She said her father will be cremated and his remains placed beside his wife's.

     "It has been a blessing that he has been here with me and that he died at home," she said.

© 2006 The Associated Press

Memorial Day

“… It is the soldier who has given us all our freedoms. It’s the soldier, not the reporter, who has given us freedom of the press. It’s the soldier, not the poet, who has given us freedom of speech. It’s the soldier, not the campus organizer, who has given us the freedom to object. It’s the soldier, not the lawyer, who has given us the right to a fair trial.

 

“It’s the soldier who salutes the flag, who serves under that flag and whose coffin is draped under that beautiful flag, who has given us the freedom to comfortably sit in our living rooms each evening with our loved ones. … ”

 

… excerpt from today’s Cumberland County “The Sentinel” Newspaper, guest editorial “Guards of Ageless Honor” by Tom Purcell.

Caregiving: FUN treatment

     Banners! Pickets! Protesters! … Half a dozen people protesting “The Da Vinci Code” movie greeted our entrance to the movie theatre parking lot on Sunday. Patti was intrigued by this unusual occurrence and “suddenly” wanted to see “The Da Vinci Code” instead of “Over The Hedge” that we were planning to attend. 

     As I attempted to explain that they were not advertising the movie but protesting the movie, Patti then wanted to go ask them why? Patti has not “listened” to the book. With no short term memory and her cognitive challenges, I had to smile just thinking about any dialogue between Patti and protestors.

     My impish temptation to roll Patti over to talk with them never happened as we were distracted bumping into Patti’s brother and niece in the parking lot and continued into the theatres.

     “Over The Hedge” worked perfectly for Patti. Wise cracking woodland critters battling suburbia on a mega screen … plus buttered popcorn, Twizzlers, and a Sprite was just what the doctor ordered. <grin>

     … and with Memorial Day Weekend temps hot and humid in the upper 80’s, a wheel chair accessible, air conditioned movie theatre is a wonderful and FUN treatment for MS.

Caregiving: Dodge, Braun/IMS wear "white hats"

     Durable medical equipment can become part of your family, Such a role for a “thing” can be impossible to grasp from an outsider looking in because it is often improbable to even understand when you are involved. The difference between a wheelchair and a motorized wheelchair or scooter is infinitely more than machinery and money. The same is true of a wheelchair accessible vehicle. The “thing” becomes entwined in your life.         

     For twelve days since being last towed to service, our van has been diagnosed, tested, repaired, rediagnosed, retested, and rerepaired. Warranty coverage has been in effect or voided depending on latest diagnoses of originating problem. Dodge (vehicle manufacturer) and IMS (conversion manufacturer) have consulted and shared opinions as to what and who is responsible. The van was 20 miles over the conversion warranty and the repair bill ended up being $1,700.

     IMS and Braun have recently corporately merged, or one bought out the other, which only clouded the picture. IMS and Braun are the two leading manufacturers and former competitors of accessibility vehicle conversions. In the world of cola this would equate to Coke merging with Pepsi.

     Bottom line is some one prior to the 11 weeks ago that we bought the van drilled a hole in the casing that contains the track for the IMS conversion door, power fold out ramp, and all the wiring and circuitry for the conversion's electronics. Why? Speculation is that the hole was probably drilled to drain water that somehow must have gotten into the bottom of the track casing. However the mechanical dunderhead that came up with this insane solution also neglected to seal the hole back up so driving in rain or through puddles continuously splashed water also up into the track. Much like copper pipes in a basement that turn green, over time electrolysis had corroded sections of the track short circuiting not only the conversion but also Dodge vehicle systems.

     Dodge went to bat for us over the bill and the new Braun/IMS has a corporate conscience. Late this afternoon a representative of Braun/IMS showed up at the service department and paid the $1,700 bill in full. Dodge and Braun/IMS wear white hats in my book!

     11 weeks ago this “thing” didn’t even exist in our world. Now for months it has dominated our daily routine either by its use or absence. The stress of shopping for it, trying to borrow money to buy it, and struggling through repairs that have kept it inoperable for 20% of the time we have owned it has been too consuming.

     Yet the freedom and empowerment it provided Patti this evening is priceless. Simply being able to roll her in, pull up outside “our” Casa Mani coffeehouse, extend the ramp, and roll into the coffee house is the essence of ACCESSIBILITY. Conversation, laughter, jazz music, a couple slices of black forest cake, hot chocolate for Patti, and coffee for me is so much more than a 21st Century weeknight Bohemian outing.

Caregiving: computers, who needs them?

“To err is human, but to really foul things up requires a computer.”  Farmers' Almanac, 1978

     Today, two months after an alleged computer error triggered a chain of computer system errors; the last of Patti’s retroactively canceled prescription payments was retroactively repaid.

     …  At least I hope so! Too many hours, too many calls, too many faxes, and too many follow up letters have been involved. As usual no explanation for how the alleged error could have happened or how making things right could have involved so many fumbles.

     The caregiver always sees and knows the human impact, the ‘cast of thousands’ on the other end of the phone, letters, or computer NEVER “feel” the human impact. They work their shift and go home. This fundamental difference challenges communication and sense of urgency.

     ….. and on the topic of computers fouling things up, 7 days ago our Dodge wheelchair accessible van was towed 50 miles in the pouring rain. Its computerized technology still remains in the shop being diagnosed, waiting for parts, repaired and retested.

      … fortunately the physical strength of the caregiver is always dependable assistive technology. <grin>

Caregiving: toast to Mother's Day

A toast to Mother’s Day from two Irishmen …

 

Oscar Wilde  

"All women become like their mothers. That is their tragedy. No man does. That's his."

   

James Joyce

"Whatever else is unsure in this stinking dunghill of a world a mother's love is not." 

Caregiving: Kodak family moments

     Multiple Sclerosis symptoms have “interfered” with Patti’s traditional parenting role since our daughter was 18 months old. Friday was one of those Kodak family moments and I was determined to include Patti. Though the 24 hours prior had me wondering if fate was out of control this time.

     Driving in a torrential thunderstorm about an hour from home, our van chose that moment to have a mental breakdown. Windshield wipers stopped working joined by failing power steering and braking. 90 minute wait for AAA, then 50 mile tow to home. An hour ride in the cab of a tow truck was a genuinely new experience. Thank God Patti was not with me. All in all a three hour delay and one vehicle out of commission.

     Some how in all this a tooth broke off a partial denture, and of course a front tooth. I never even knew such a thing was possible. Calling our dentist, the answering machine informed me the office is “closed” and will reopen on Monday. Looking like a stereotypical hillbilly and challenged to pronounce many letters of the alphabet, I found a place in the yellow pages that actually could repair in 4 hours.

     Undoubtedly because it was the Friday before the Medicare D deadline, Patti’s private prescription plan insurance came crashing apart once again on this day at this time. Trying to juggle dozens of calls outgoing and incoming with necessary offices while running around dealing with van and tooth was nuts (and even unable to pronounce "nuts" <grin> for several hours).

     And of course, there was an 18 year old at home who now had to suddenly share the car for last minute needs to get ready for the High School prom and I needed to help with lacing up fancy dress and all that. Plus some procrastinated college paperwork that ‘suddenly’ needed to be Expressed Mailed today! My sanity was saved by staring and realizing like the old Saturday Night Live expression that “Megan, you look mahhvalous”! (Megan centered in the picture with hair down.)

     Then we needed to plug Patti into the equation. Van was neither diagnosed nor repaired by the time I needed to transport her so we reverted to the old fashioned transfer board method and used our station wagon and my physical strength to get Patti in and out of the vehicle.

     In spite of 24 hrs of obstacles, we were ONLY 5 minutes late for pre-prom picture taking. Wisely the kids had decided to gather at one house before going out to dinner to make themselves “available” for Kodak moments.

     Patti enjoyed the Kodak moment and she was unusually communicative. Her tendency to slip into language more appropriate for dock workers had the kids laughing with shocked glee as this was not typical 'parent speak' <grin>  

     While the young adults headed off to a fancy dinner and their prom, Patti and I grabbed Italian carry out in route to Mother's Day shopping. A total of 8 physical transfers of Patti in and out of our car. Lord, has that wheel chair accessible van spoiled me. 

     Obstacles and challenges are always going to be part of any good family memory. The caregiver spouse just has to make sure they are overcome.

Caregiving: sitting in the backyard

     Just “sitting” in the backyard as a caregiver you learn to appreciate not only what surrounds you but how to communicate. A warm breezy Spring afternoon requires you to find the creativity to complete these pictures. 

     Patti’s MS symptoms of visual impairment and cognitive challenges short circuit the processing of  ...  wind blowing through this weeping willow tree ...

   ...  or clouds making shadows appear and disappear on the fence ...

                        

     ...  or viewing the flag snapping in the wind through the cherry tree in bloom.

 

                       

     A ‘Spring Day’ is not subject to the Americans with Disabilities Act regulations. It takes time and creativity by family, friends, or volunteers to make such opportunities accessible. 

Caregiving: Special Olympics Spring Games

   Wednesday I was blessed with my annual participation in the Special Olympics Spring Games. In the photograph, to the left of traditional opening flag and torch ceremonies, student athletes “sign” the National Anthem.  

     Each year surrounded by athletes and volunteers I know that I am standing among everything that is “right and good” about people. The collective energy of excitement, challenge, celebration, laughter, and love is so powerful it leaves you stronger and richer.

     When this many people are gathered together caring for each other, there is always a moment in time when the faces of athletes and volunteers seem to swirl together causing the eyes and smiles to align ever so briefly … and it seems my breath stops as I glimpse a collage of the face of God.       

Caregiving: a great start for the week

     Mondays! ... This one got off to a great start with a call informing me that Patti’s Long Term Disability medical insurance and private prescription plan had been “retroactively” restored with no lapse in coverage. Yeah!

     ... and last week ended with our wheelchair accessible van repair costing us absolutely nothing. (Well, except four days in the shop.) The gremlin was one of the computers that operate the van's technology and fortunately it's replacement was covered under the "Certified Pre-Owned" warranty. I joke that I feel like I am powering up a space ship when I turn the van ignition key, I never knew how close I was to the truth. <grin>

       The Employee Benefits representative who called could not offer any explanation for how or why Patti's LTD benefits had been “retroactively” canceled in the first place.

       Through previous ordeals I've learned that pieces of misinformation drift into the loop somewhere and are mistakenly “believed” by one network when communicating with another. When that network is updated ‘system wide’ that piece of misinformation gains credibility and will in turn be communicated to more interdependent systems. … when appropriate flags are triggered it can spit you out.     

     Yes, an extreme over simplification but it works as well for me as the most complicated doublespeak any bureaucrat can offer. Basically, computer networks communicating between each other are not really much different than the proverbial neighbors gossiping over the back fence.  <grin>

Caregiving: ... anticipatory management

     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.

Caregiving: … battling bureaucracy

   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. 

Caregiving: ... "get a horse"

     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>

Caregiving: MS Walk 2006 Camp Hill

     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.   

Caregiving: training in disguise

     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!

Caregiving: Alternative Financing Programs

     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:

http://www.resna.org/AFTAP/state/index.html

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.