Caregiving and paperwork

     Behind all the caregiving functions, whether home care or facility care, is always the responsibility for PAPERWORK. Pictured are Patti’s 2005 medical insurance records.   

     With four ringed binders and over 3 inches of files to go, this is how I annually spend my year end time. While organized all year long, the loose files are just November and December swamped this year by the “new” Medicare prescription plan. A significant percentage of those files also have also been scanned onto CD or DVD for easy carrying and enabling email and fax transmission.

     Patti's physical and cognitive challenges related to Multiple Sclerosis prevent her from even reading a page much less comprehending, remembering, and responding.

     The 2000+ hours I spent battling “the system” from October 2004 to September 2005 as Patti’s insurance attempted to retroactively cancel her was a valuable reinforcement in documentation. It may seem an embellishment but believe me missing documents or documents not responded to could land you on the loosing end of a medical insurance donnybrook. 

    A good friend of ours who teaches nursing at John Hopkins University and remains active in community nursing always reminds me that too many people “fall through the cracks” in the system every day because they are either unable or lack such support in dealing with logistics of health care and our health care insurance system.

     Please do not look at that picture and feel sorry for me. Feel for a neighbor, or friend, or family member who cannot keep pace with a health care insurance system melting down around us. Better yet, if you possess organizational skill or time then reach out and help someone from falling through the cracks.

Caregiving: bed alarms & falling

   Last night I received a call from Patti’s care facility advising me they were upgrading her bed alarm and informing me of the incident that prompted the change.  

     A passing attendant making rounds noticed her sitting on the edge of her bed. Patti had managed to deactivate her bed alarm, because she claimed she wanted to get up. Talking Patti into staying where she was, another attendant fetched the sit/stand lift and they transferred her into her wheelchair. … Once in her wheelchair, immediately Patti wanted to go back to bed. <grin>

     For year’s at home I’ve labeled one of Patti's MS sleep related behaviors, the “Jack-in-the-Box”. Patti will want to go to bed, often will even fall asleep and then pop right up and try to get out of bed.  Almost immediately she’ll want to go back to bed, and sometimes the process will repeat itself a couple times.

     Because Multiple Sclerosis involves basically short circuiting of communication to and from the brain and the body, strange things can happen.

     The major risk is a fall because she seems to ‘forget’ that she cannot stand nor walk, though she will demonstrate extraordinary clarity in thinking for some parts of the episode, as evidenced by her deactivation and disconnecting her bed alarm. Talking with her during a “Jack-In-The-Box” she is lucid and determined about ‘what’ she wants to do, but is stumped by any question relating to ‘why’.

     This is not a consistent behavior. Weeks can pass without such an occurrence, and then suddenly it can happen several times a day.

     Multiple Sclerosis can drive you nuts as a caregiver. This is not a symptom, or an exacerbation just a random reoccurring sequence of physical & cerebral short circuits. It can be more dangerous than any symptom or exacerbation because the end result if unattended is a fall.

     Years ago when Patti’s neurologist was encouraging us to look at 24/7 attended care facilities, he made a convincing point. While MS is not traditionally considered a fatal disease, that is a flawed “statistic” derived from death certificates and official cause of death. Too many people with Multiple Sclerosis are seriously injured or die from falls. “Accidents” can mask the real culprit, in his case - MS.

Caregiving: incontinence care

Incontinence care may be an awkward topic for some. Yet incontinence for a totally dependent person is just another caregiving reality. This is one of those reasons in our recent discussion about Christmas at home that Patti remarked about being ‘spoiled’ by the level of a professional care facility.

 

Wednesday I was in awe as two staff members with a “sit/stand lift” took literally just over one minute to change Patti, and she was rolling down the hall happy to begin the day’s outing.

 

The sit/stand lift is used for performing perineal care/changing incontinent briefs. At Patti’s care facility two attendants usually are used versus just one as pictured in the Just-Patient-Lifters.com advertisement.

 

At home the process involves me physically pulling her up from her wheelchair to a standing position while she hangs on me, then pivoting her onto a bed, struggling to undress her and change Depends while she lays flat, then redressing and picking her up and again getting her back to a standing position while she clutches her arms around my neck, and finally pivoting her back to her wheelchair. Both Patti and I are at risk throughout all the associated transfers. … If lucky, it takes me 15 minutes.

 

If real lucky I don’t have to immediately start abusing ibuprofen until my back pain subsides. … Now if only I had a spare $2,500, I too could have such a machine <grin>

journal tag

From Christine’s “My Journey with MS” I was ‘tagged’ to list 5 weird habits” and in turn ‘tag’ 5 more journals.

 

Weird habits? While I personally may not find these weird, I must defer to how much they seem to surprise or annoy other people.

 

I MUST have a cup of coffee before a shower in the morning and a glass of chocolate milk before bed. This sequence of daily habits has obviously delayed the onset of the Apocalypse for all.

 

I despise watching TV. Our cable company when interviewing me to determine use and recommend the best package was so flabbergasted the customer service rep could only ask, “Why do you even own a TV?” <grin> (for Patti, Megan, and the cats of course)

 

Frequently I find myself in arguments with inanimate objects. They never actually talk back, so arm chair psychiatrists need not worry, yet I suspect there is more to inanimate objects than meets the eye.

 

When confronted with a choice of going left or right, I always go left. As the overwhelming majority of my companions want to go right, my habit must be odd.

 

It is amazing how few of my passengers are aware that the steering wheel and dashboard on a car is for drumming along to music while driving. Some songs may even involve the visor and rearview mirror. Based on passenger whining this must be strange.  

 

Email chain letters die on my PC. This habit concerns friends who live to ‘forward’. Ooops! That’s more than 5, so I guess “not listening” may be another but that also could be good. As much as I enjoy Christine’s “My Journey With MS”, I am such a ‘creature of habit’ that I cannot forward along the ‘tag’. <grin>

Drug May Slow Down Multiple Sclerosis

   Hurrah! Someone in research actually thinking about what medications cost those who use them.

Drug May Slow Down Multiple Sclerosis

"…If these findings are confirmed then we would have a less expensive oral medication that is of comparable benefit to the current treatments..." 

   My eyes had to blink at the date stamp on this story at first from WebMD with AOL Health as Patti’s neurologist had tried her on Immuran long ago before the astronomically expensive interferons were ever marketed for MS.

Christmas at home

     Bringing Patti “home” for the Christmas weekend a year ago was a quest, this year I found myself second guessing Christmas at home.

     As a caregiver/spouse of nearly 20 years I was still lost last Christmas in the mythology of John Henry vs the Steam Drill Engine, except it was me vs the 3 shifts of staff of a 24/7 care facility.

     Talking with Patti as the weekend wrapped up, we shared these thoughts in light of the mantra that "home had to be better". Patti simply reflected, “Why?” … There are times I wonder if it is MS cognitive problems or maybe she just sees clearer than I?

     I’ve learned to respect the care and teamwork of 3 shifts of professionals taking care of Patti. Even more important Patti has become somewhat “spoiled” by that level of care. Beyond the human factor are mechanical lifts to help with and improve the safety of caregiving plus facilities are 100% wheelchair accessible.

     Home is a one man show, 24 hrs a day.  Blessed with the insight of retrospect we should have worked out some hybrid. Perhaps sleeping there and spending all day and evening at home?

     Stupidly I pulled a muscle in my arm to kick off our “weekend at home” trying to push Patti’s wheelchair with one arm through a Mall while juggling packages in the other. Without lifts or teams, every remaining caregiving function was affected. Home caregivers have no safety nets.

     It was a White Christmas. No snow fall, but plenty of snow cover. Christmas Eve was beautiful and so easy to hear Bing Crosby crooning "White Christmas" from snow piles everywhere.

     Attending Christmas Eve church services a hillside community can be a challenge when dealing with a wheelchair. Eventually we had to park blocks away and use the middle of the street as sidewalk curb cuts were blocked by plowed snow that the able bodied could step over.  Viewed from the perspective of Patti staying up until midnight (considering her normal bedtime is 7:30 PM) enjoying visiting with her parents and relatives following Christmas Eve services obviously being pushed up and down the streets in the Christmas Eve air was good for her. <grin>

     Home caregiving for Patti is intense with a level of disability of 8.25 out of 10 on the Kurtzke Expanded Disability Status Scale (EDSS). 'Activities of daily living' (ADL) or bathing/grooming, dressing, eating, bladder/bowel, and mobility/transferring are totally dependent activities for Patti. On the Barthel Index of ADL, Patti scores only 2 out of 20. Beyond taking care of her ADL and administering multiple medications several times a day, I had totally forgotten the extent of related laundry and housekeeping chores. Support time seems to never stop and outings often needed to wait for transfer of loads from washer to dryer. 

     Christmas day intermittent mist fell on snow cover and as temperatures slid I would find myself driving through pockets of thick fog. I often wonder when passing in and out of fog if it isn’t similar to the mental confusion and cerebral symptoms that impair Patti’s thinking when MS flares.

     Sleep and bed rest dominates Patti’s MS day. Yet able bodied holiday time tends to be activity driven “go here, go there”, eventually, the ‘best of possible’ times works out for all.

     It wasn't a Normal Rockwell or Charles Dickens Christmas but there was laughter and family and too much food and sweets ... (Patti particularly enjoyed the absolute lack of dietary discipline <grin>) and it was "WHITE" and how many times have we dreamed of those.

     A dear friend and fellow MS caregiver spouse sent me this article from her hometown paper on the Mississippi Gulf Coast.

“… Our plea to newspapers and television and radio and Web sites across the land ... Please, tell our story. … We are here. Do not forsake us. … We are no footnote. …”

MISSISSIPPI'S INVISIBLE COAST

ChristmasCard 2005

 

   In this 21st Century sometimes I get lost between the 'real world' and cyberspace. Here’s to sharing this scan of our ‘real world’ Christmas Card with our cyber friends and family … The oldest pictures of Christmas "past" even preceed Al Gore's invention of the Internet, or Dan Qualye inventing Spell-Check.<grin>

Caregiving: sentinels for sanity

       At last, the winter solstice! Welcome Winter!

 

     Yes, the holiday season is such a supercharged time of emotions and stress for everyone.

 

     Thank God for cats! As pictured, “Stardust” keeps it all in perspective. There are times I’m convinced that the eyes of cats are sentinels for sanity checks. <grin>

             

MS & geography

Geographic location and multiple sclerosis 

“The number of people who have multiple sclerosis (MS) increases the farther away they are from the equator. …”

     While this snippet gets attention frequently during boring media cycles, it never ceases to intrigue me. Clicking the blue headline will open the full story from WebMD AOL Health. Of all the pieces of the MS puzzle, this strikes me as the strangest.

     Also I can’t help but wonder how medical diagnosis and reporting or even life expectancy in equatorial nations, e.g. Indonesia, Ecuador, Congo, and Kenya wouldn’t skew such research.

Ice storms and coffee

     Stepping onto the patio for a morning cup of coffee after an overnight coating of ice always has a special luster. Especially since WINTER has not even officially started yet <grin>!!

     Three "Fall" snow storms have left behind a total of 14 inches of snow plus sleet and ice. These are all bonus views! ... or complimentary holiday decorating. <grin>

MS & Menopause

     Four months ago I encouraged experimenting with abandonment of Seasonale and/or LoEstrin which had been used for years for Patti's menstrual bleed control. Observations and conclusions seemed to point toward Patti being in Menopause and hormonal variations might be causing some dramatic inconsistency in symptoms.

     That Patti’s natural hormone levels where menopausal was confirmed by blood testing following suspension of these medications.

     Two Wednesdays ago I attended Patti’s Care Plan Review. In discussions, I learned some interesting observations since abandoning these unintentional hormone treatments.  Dysphasia related vomiting has been non-existent for the last four months. There is even some evidence of stabilization in memory loss that has been noted by facility staff. I certainly can confirm stabilization in her physical ability and mental focus needed to transfer to and from a wheelchair and car.

     Obviously this is only anecdotal evidence and doesn’t prove anything. So little is known or even being scientifically researched about the effect of Menopause on MS, and MS can and will change at will.

     At best it is simply interesting that letting Patti’s body go through its natural passage has been associated now for almost 4 months with stabilization of particular physical and cerebral symptoms.

MS & TV

    Our daughter enjoys a Tuesday evening, Fox TV program “House”, an off the wall medical mystery show. Catching snippets and overhearing dialogue while doing chores this evening I could follow that the plot involved a diagnosis of Munchausen Syndrome. Give or take some other twists.

     I learned that Munchausen Syndrome is a type of factitious disorder, or mental illness. A person repeatedly acts as if he or she has a physical or mental disorder when, in truth, they have caused the symptoms. People act this way because of an inner need to be seen as ill or injured.

     Now comes the clincher. The show’s script writers gave the patient the “excuse” that while she was growing up her mother had Multiple Sclerosis. People were always doing things for her Mom, and taking care of her Mom, getting her things, brushing her hair …  Her Mother died when she was 16 and the show's patient had learned to associate attention with illness.

     I just sat there with my mouth open. It may mean nothing to 99 out of 100 people. Yet, we have lived with MS in our family and that includes a daughter raised by a Mother with MS.

     I tried to rationalize that script writers were writing for the reasoning of a mentally ill patient. However, I couldn’t help but wonder what misinformation a viewer with no real knowledge of living with MS could walk away with.

     In all these years I have never heard or read of any family member developing Munchausen Syndrome because another family member had MS.

specialty / biotech medicines

     Opening “Annual Health Care Enrollment Material” for 2006 I was surprised and also not surprised to see a special cover page, with bold type headline:

IMPORTANT PRESCRIPTION DRUG BENEFIT

INFORMATION FOR 2006

     The piece masterfully identifies the alarming cost of “specialty / biotech” medicines with “annual costs ranging from $10,000 to $500,000 per patient” and how this new category and increases in these special co-pays keeps the overall cost of a prescription drug benefit down and co-pays low for rank and file participants and their families using traditional prescription medication. (In other words basically pigeonholing those who use them from the plans’ rank and file participants.)

     Patti’s level of disability has made MS specific medicines a non-factor and this does not affect her directly. However, I can’t help but wonder how it would have impacted our lives if she was still taking Avonnex. (a "specialty medicine") Could we afford to continue with dramatically higher co-pays? Or increased reviews to determine effectiveness of arbitrarily changing levels of expected results?

     Sadly nowhere does the logic attempt to look at why the “specialty/biotech” manufacturers charge so much for their product. It just accepts the cost and works out from there placing the “problem” on the people who need the medicine.

     Our health care insurance system is so broken that one stop gap brick at a time is not going to fix it. The 2005 hurricane season obviously will have a catastrophic ripple effect through the insurance industry for years to come.   

     The many heads of the insurance industry hydra will be sniffing for every opportunity to save itself and its stock holders. Economic self preservation is understandable to me and millions of Americans have their retirement funds invested in portfolios that contain insurance industry stock. The hunt just seems unfairly focused on the consumer end and not the manufacturer side of the equation.

... suddenly stepped into the car

     Continuing to use the transfer board as an incline we seem to discover new ways of transferring Patti between wheelchair and our car. 

     Sunday, Patti suddenly and without hesitation stepped into the car laterally while sitting inclined on the transfer board one foot following the other. I watched in stunned surprise as she safely completed her slide into the car seat. It’s been over 3 years, or more, since Patti has stepped into a car! This motion would be the equivalent of how an able bodied person would enter a car seat.

     Talking with her she had no idea what she had just done. You normally have to lift her legs in and out of a car.

     Patti’s leg strength always tests just fine; her problem is that MS related myelin damage has short circuited her brain’s ability to communicate with the muscles. I can only guess that Patti’s increasing comfort with the transfer board as a tool, and the variables of MS symptoms and fatigue just happened to all hit the optimum zone at the right time.

     Dinner at home with veal parmesan and ziti plus a ritual yearly viewing of Christmas Vacation with the Griswolds was of more interest to Patti <grin>. Feats of transferring are just the means to an end.

Richard Pryor RIP

Statement regarding the passing of Richard Pryor

from the National MS Society, December 10, 2005

 

     On behalf of the National Multiple Sclerosis Society, we want to express our sincere condolences to the Pryor family. We are all saddened by this loss as Mr. Pryor will be remembered as a ground-breaking comedian and world-class talent. "Mr. Pryor struggled with the devastating effects of multiple sclerosis for many years and he will be remembered for his courage and dignity," said Joyce Nelson, President and CEO of the National MS Society. "The Society was honored to work directly with Richard Pryor and is pleased to currently have his daughter Rain as an ambassador for the MS cause."

December mornings keep getting better

... with eight inches of snow to start Saturday morning.

December mornings SHOULD look like this ...

Outmaneuvering my lawn cannon aimed north, the snow sneaked in from the South. With just the right mix of ice it painted all it touched with a high gloss.

 

A peak of sun cleared the roads and it created an ideal opportunity to take Patti for a ride to view holiday home light displays with that high gloss snowy backdrop. CONTRAST is beneficial to her visual challenges.

 

Sometimes in “living with MS”, as the caregiver, you have to seize the moment. High gloss snow, clear roads, twilight, holiday lighting, and such factors do not always align. Riding in a car, Patti is also no longer different than anyone else. Follow it all with a hearty Italian dinner at home with the fireplace going (if you can dislodge the cat from in front of it without getting clawed) and December Sunday's can't get much better.

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Caregiving: an observation

Recently reading the WebMD interview with Meredith Vieira, I was struck with an observation that MONEY certainly affects options.

 

It seems to me that over the decades a formula has been developing that those with more money have more options. Those with more options have more hope.

 

A person or family able to afford current MS medications is going to have a different future view of "living with MS" than a person or family without prescription coverage or who cannot afford their plan's high monthly co-pay.  Or considering divorce in excess of 90% in such situations how is hope impacted when the insured spouse leaves and the prescription plan terminates?

 

Our media and culture tends to be drawn toward celebrities and anecdotal success stories. That is understandable. Yet there is a risk that truth may be in the silence of those not seen and heard.

 

Escalating co-pays, decimation of family finances, divorce, and unemployment are just a few of the more common challenges, beyond health issues, faced by any person "living with MS" or a spouse/caregiver.

 

Our health care insurance system is broken and "we the people" only hear about it every four years when someone wants to be President. Yet some more than others have to struggle with it every day.

HOPE is so critical to "living with MS". Yet for some, correct that, too many, money is becoming a cage for hope.

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Caregiving errands in the rain

     Tuesday, nature was an illusionist; it was a March day yet late November. Rain and wind seemed to sense and thwart our intention to try and transfer Patti to and from our car. Patti was enjoying the outing, so I shifted plans to running multiple brief errands in the rain. She stayed dry in the car and listened to the radio bemused with it all while I popped back in and out between our different stops.

      It was FUNctional for me. Normally caregiving time accomplishes little. Yet because of nature's mischief, Patti was happy just to be around the 'hustle and bustle' without the effort to directly include her in the wet Spring weather. 

     I've never met a puddle that doesn't inspire a Gene Kelly "Singin' In The Rain" impression and tend to splash her wheelchair anyway. That left me an umbrella, a parking lot full of puddles, and maybe I'll grow up tomorrow. <grin>

 

     As we talked between errands I realized this was her first taste of a slice of reality (of a normal night of being a parent and homemaker) that she's observed in a long time versus what she sees when I can include her. All in all it provided for some interesting conversation.

 

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Caregiving recent articles

From recent reading I've filtered out two articles I found interesting.

 

From Caregiver's Home Companion:

Spousal Caregiving Can Lead to Gum Disease

Stress associated with caring ... can lead to gum disease in the caregiver at twice the rate of their non-caregiver counterparts, researchers report in the latest issue of Psychosomatic Medicine....

 

from WebMD withAOL Health:

True View

Meredith Vieira juggles two popular television shows, kids, contractors -- and a husband who has MS.  

 

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Caregiving First Christmas Card

Popularity polls rise and fall, but it's still fun to walk out to the mail box and find the White House Christmas card!

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Caregiving 525,600 minutes give or take

     Benjamin Franklin obsessed about squandering time. In Ecclesiastes there's even a list of time for this and that.There seems to be no shortage of advice on time.

     MS symptoms and damage have left Patti dependent. Others must step in to affect her use of time.

     Friday her life long friend Sharon visited with Patti including a friendly manicure and nail painting. Something Patti proudly 'remembered' because of the visual and pleasant reminder of the nail polish. A brilliant use of time because it existed both in the now and also helps Patti to struggle tomorrow and the next day with fading memory as she looks at her nails.

     Saturday I picked Patti up for a day outing from Noon until 8 PM. Eight hours seems like a lot of time only to accomplish attending the movie "RENT" and dinner at home. Yet, every action requires support time, and support time always exceeds activity time. Transferring, travel logistics, nap time, changing Depends and clothing, cleaning up and laundering bed linen, yada, yada, yada ... is critical to a successful outing and support time cannot be short changed.     

"...525,600 minutes! 525,000 journeys to plan.

525,600 minutes - how can you measure

the life of a woman or man?..."

"Seasons Of Love" from RENT

Time must be literally carved out from the caregiver's, family's and friend's schedules to create time in Patti's life for opportunities. We are blessed in that 24/7 care also enables her time with attended help, people, and activities when family cannot.

     Time for each other is easily pushed aside this frantic time of year when it is easy to loose perspective. 

 

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Thanksgiving vagabond

Prevailing through holiday traffic in Pennsylvania and New Jersey I found myself conjuring up mixed images from our American mythology of Mayflower Pilgrims and Wampanoag Indians to the lyrics of Bruce Springsteen:

 

"...The highway's jammed with broken heroes

on a last chance power drive

Everybody's out on the run tonight..."

 

Thanksgiving dinner with my cousin's family in Pequannock, NJ was both tradition and yet different. Megan and I didn't attend the Macy's Parade this year. Megan and friends drove to a rock concert in Philadelphia the night before and spent Thanksgiving dinner with Patti and Patti's parents in Steelton, PA.

 

With them safe and secure, I could succumb to the vagabond winds.

 

New-fallen snow that faded with daylight flurried again at night like an omen to bless my drive home.

 

Twice I roared over the Delaware River not far from where the Continental Army in 1776 bravely climbed into some boats over the Christmas holiday to change history. Glancing up the river both times I felt "thanks". The moment was eerie.

 

Audio books transformed road hours into the worlds of Anne Rice's "The Vampire Armand" and Dean Koontz's "Cold Fire".

 

For a caregiver to simply wander was a cornucopia of food for body and mind rivaling ambrosia.

 

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Thanksgiving snow

With snow falling overnight, Thanksgiving 2005 should be magical! ... Yet Thanksgiving morning is forever a bittersweet and complicated memory for me.

 

Time capsule - THANKSGIVING 1989 ...

 

Horror waited for us Thanksgiving morning.  Patti awoke unable to see, walk, or even talk. In the blink of an eye life changed. Patti was hospitalized and reeling with her first major MS exacerbation.

 

Patti had previously been diagnosed as "probable" MS. Her symptoms had been only a brief period of some numbness in her fingers and slurred speech. That was 4 years before (1985). She was FINE. We were both working, had a beautiful 18 month old daughter, owned a vintage 1904 home, two cars, two cats, life was wonderful. We had so much to be thankful for. It was to be a perfect Thanksgiving. ... MS had different plans.

 

... and a long, strange journey began.

 

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Caregiving: transfer board success

     To follow up the transfer board experiment, with REST for Patti, my experiment was a smashing success on Sunday    

     Bambi's recent attempt on my life only reinforced the need to reduce dependency on ME. Currently Patti's only way of getting "out" is if I am involved in her transfer. We needed a method that would be comfortable for Patti, family and friends to take her on outings as casual caregivers and companions.

     Transferring from wheelchair to car using a transfer board has repeatedly failed over the years. Only 'trained professionals' have ever tried and they tend to be locked into the tunnel vision of "conventional use" thinking.  MS, especially fatigue related symptoms are dynamic and demand innovation.

      My idea was to adapt the transfer board as an incline or improvisational "sliding board". (Maybe it's just the kid in me that still cannot resist sliding down banisters whenever possible. <grin>)

     When Patti and I work together she pulls herself up on the car door to a standing position. I pull the wheel chair away. Step in behind her and pivot her trunk into the car seat. Then I lift her legs in one at a time. 

     The experiment was to add a new first step and have Patti simply pull herself partially up just a few inches so I can slide the transferboard between the wheelchair and car seat. Creating a bridge between the two.

     Then as Patti pulls herself up a second time I simultaneously lift up the transfer board end under her which causes her too literally "slide down into" the car as if riding down a sliding board or banister sideways. Most surprising was that momentum and the natural movement pulled her feet right up and in to the car in a sitting position.

                        

     In reality it was safer that our previous method because the wheel chair was never pulled away and the addition of the transfer board added an additional bridge between chair and car. Less effort and stress was used by all involved. With practice this could become fun. <grin>

     Saturday fatigue crushed any plans. Sunday we all spent almost 8 family hours together. Of course, over 3 of them were devoted to Patti's afternoon nap but that is "living with MS". You have to compensate for fatigue into successful planning.

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Kamikaze "Odocoileus Virginianus" (white-tailed deer)

     A friend sent me the following article from CNN Money in response to my journal entry about Suicidal Bambi:

 

Worst 10 states for auto-deer collisions

 

    I was stunned to learn that Kamikaze Bambi's kill 151 Americans a year.

     Deer hunters I salute you! Show the psychotic beasts no mercy!

 

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Caregiving: fatigue IS the agenda

     How something has to be done to be successful takes creativity and trial and error to keep up with the constant morphing of MS symptoms.

     For example transferring from wheelchair to a car demands a sequence of "it depends on..., and then you do ...". Patti and I have teamed for thousands of successful transfers over the years and my role is almost intuitive, depending on how Patti moves, etc. Equally important is I KNOW when a transfer is simply not going to work and abandon the plans.

     MS symptoms of mental confusion and memory loss make Patti undependable for help. This is most challenging for family or friends wanting to be casual or one-trip caregivers.

     In an effort to improve the ability of others to transfer Patti in and out of a car, I recently purchased a transfer board. I rendezvoused with Patti's parents and hoped to experiment with it.

     (I swear MS 'knows' when I am up to something) Patti was so fatigued before we started she couldn't even pull herself a couple inches out of her chair! I discovered from nursing staff that Patti did not have her afternoon nap and without a nap all is useless. The experiment will just have to wait.

     That was a little before 5 PM. I rolled Patti back in and had dinner with her while she struggled to stay awake. Before 6 PM I physically transferred her into bed, tucked her in, and she was sound asleep. <grin>

     Fatigue IS the agenda with MS, no matter what a caregiver has planned <grin>.

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Caregiving: suicidal Bambi

     Driving home Friday evening a whitetail buck leaped across the path of a tractor trailer and landed on the front of my Aerostar Van.

     Bambi's chosen moment for suicide was particularly startling as I was riding along with cruise control set for 60 mph  and had just double checked driving environment as I was aware of a tractor trailer passing me on the left and another coming up on my rear. Bambi appeared ... and disappeared ... with a thump and crashing glass (of my headlamp I guessed), bouncing off toward the 18 wheels passing on my left.

     No affect on my van's operation nor me, I just continued cruising in pace with the tractor trailers. Ford built a great vehicle when they built the Aerostar Van. Collision with 150 - 200 lb deer at 60 mph and it just drove home like nothing happened. I was STUNNED when I parked and saw the damage to the body work.

     Parked side by side with our Taurus station wagon in the drive way, I can't help but notice that the height of the impact would have slid the deer right through the driver's side windshield if I had been driving the Taurus. What a different outcome a simple twist of fate can control?

     Thursday night I had to slam on my brakes and swerve into the opposite lane (fortunately empty) to avoid another suicidal deer while driving in Maryland just outside Baltimore.

     I'm rethinking the whole big car vs little car debate.

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Caregiving: parents & teachers

Recently Patti and I attended parent teacher conferences. Frankly I use these conferences mainly as an opportunity for Patti to meet our daughter's teachers, 'see' the school and classrooms. 'Back to School Nights' are just too chaotic.

Logistics of building size and elevator keys complicate movement between class rooms. Conferences are best because MS symptoms require the teacher to be closer than 3 ft to be seen and conversation and processing information is "different" than in a group format. Even in a brief 15 minute conference Patti's attention span begins to drift after 5 minutes.

What was incredulous this final "Senior Year" was that we met a teacher who was "like our daughter" This teacher grew up with a mother severely disabled with MS.

In fact, it was the first time we ever met any teacher who had any family member with MS. (or come to think of it, any direct knowledge of "living with MS", that is before meeting us <grin>)

When I stop to think about 12 years of school plus pre-school and all those teachers and staff, it is sobering the uniqueness of "living with MS."

 

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Caregiving family and friends make all things possible

Outings demand flexibility and creativity. On one side of the pendulum, the able bodied simply “do”. On the other side the care facility environment is “controlled”. Reality for us is always somewhere in between.

 

Saturday Patti’s Mom was performing with a Sweet Adeline’s group and we worked to make Patti’s attendance possible. Logistical challenges were compounded as the performance was well intended and dedicated for nursing homes and elderly however the historic theater, “The Forum” chosen has only 10 accessible seating cut outs.

 

Fortunately Megan was with me and a family friend Jean Faul was in attendance. Megan and I carried Patti between us from her wheelchair down a row to an available seat while Jean steadied the wheel chair. We reversed the process later to get Patti back into her chair. If Patti panics such a maneuver is risky to all because of the steeply graded, half steps, and narrow aisles in any “historic” facility. Explaining what was going to happen and talking her through the steps as teamwork executed the transfer kept it all safe.

 

Family and friends as always makes all things possible.

 

MS related symptoms challenge Patti’s attention span. The show was wonderful however both attention span and the transfer challenges necessitated we exit at intermission.

 

The Forum is on the grounds of Pennsylvania State Capitol. One of the hidden treasures of any State or Federal “grounds” is plenty of accessible space and statues and ‘art’ monumental enough even for the “legally blind” to see and for play. Such as the huge three dimension polygons just perfect for a game of hide and seek on a perfect Fall afternoon. <grin>

Caregiving and voting

Tuesday was Election Day and we continued our unbroken streak of exercising our voting rights in spite of the obstacles and progression of MS.

 

We discovered that our "coroner" is an elected position. Fortunately he was running unopposed.

 

Of course municipal elections tend to lack the voting day intensity of Federal or State campaigns. Regardless, Patti has a knack at turning voting into an entertaining experience.

 

We get to choose to keep or repeal judges. MS symptoms can impair Patti's ability to control volume when speaking. While helping Patti with her ballot, I softly asked her if she wanted "to keep or get rid of XXX". I do believe everyone in the room jumped as Patti yelled "KEEP HER" as if she was at a football game! This got us both laughing and wondering why.

 

Fortunately up here the election officials just enjoy the break from the monotony unlike Patti's infamous voting experience in Maryland shared in VOTING & MS from last November.

National Family Caregiver's Month

A Proclamation by the President of the United States of America

 

"Each November, as Americans reflect on our many blessings, we observe National Family Caregivers Month and give thanks for the selfless service of family caregivers on behalf of their loved ones in need. The tireless devotion of these Americans brings comfort and peace of mind to our Nation's elderly and to those who are chronically ill or disabled. ..." George W Bush

 

http://www.whitehouse.gov/news/releases/2005/11/20051102-15.html

Caregiving ... and playing in Fall leaves

Zooming around the field in her scooter Patti somehow manages to run aground on the only boulder in the field. Perhaps reenacting the Pilgrims landing on Plymouth Rock? (Picture 1)

 

A pile of leaves simply MUST be thrown into the air no matter what your situation in life <GRIN> ...  (Picture 2) 

         

A 72 degree day in Fall is Heaven! (Pictured below) An all terrain scooter only helps you get there.

 

                        

Caregiving: one morning in November

Pictured is Tuesday afternoon’s cook out, we brought Patti home for that Shangri-La afternoon. Grilling Delmonico steaks under a November sunset, north of the Mason-Dixon line, is weird but I could learn to like this. <grin>

 

It gets better with two seasons in one. I get my winter with an early morning kiss of frost, and a cup of steaming Italian Roast coffee while walking and crunching over the frosted grass blades. On the other hand, reality is trivial to the rest of the household. The cat demands me to flick on the gas fireplace in front of which she hypnotizes herself deep into the feline center of the universe. Also enjoying the gas fireplace, our teen age daughter needs to check her email and IM her friends who she will see ‘live’ in only a few minutes when she drives the 2 miles to school as soon as I have scraped the windshield or warmed up the car. (After all I ENJOY winter.)

 

Looking at Patti’s schedule, she is waking up in a toasty room with 2 to 3 attendants who will get her up out of bed with the assistance of a mechanical lift. She will be bathed, again with so many high tech devices and lifts our homecare method seems almost medieval. As Patti needs 100% assistance with all Activities of Daily Living including dressing, personal hygiene, etc., I know how long even one of these activities took to accomplish when it was just me trying to help her. With at least 2 attendants and lifts she breezes through such activities. Getting up in the morning is no longer a function of hours.

 

She is then taken to the assisted dinning room for breakfast. I see that today’s menu is scrambled eggs, cereal, English muffin, coffee, and OJ. Home care breakfast was ‘catch as catch can’ and frankly was often brunch as it could take that long to get her up.

 

For Thursday morning Patti has wheel chair exercises and then “corn pitching” for a morning activity. Tossing ears of field corn into baskets for a fun exercise and group activity/game.

 

By afternoon it’s back to 70 degrees! Depending on how I can juggle my day either I will pick Patti up and bring her back for a cook out or swing by with her scooter and take her for a scooter excursion through the park or on an adventure before sunset.

 

Weather certainly has disrupted and destroyed so many lives this year. We may as well celebrate 'kind and gentle' weather and not take it for granted.

A paean to those who came ...

A fellow MS caregiver spouse and resident of the Mississippi Gulf Coast forwarded me this beautiful editorial from South Mississippi’s SunHerald Newspaper: 

A paean to those who came

“… This is for all of those who cared and who responded.

     It is for everyone who helped us, however they expressed that concern.

     These words are our heartfelt words and thoughts of appreciation. They are redeemable in handshakes, hugs and in indelible memories that will be just as real as far into the future as can be seen. Our debt will be owed to the children of all of those who came, and to their children. …” 

Click the headline for the full Oct 28th editorial …

Caregiving Halloween

As pictured, fortunately there was “Trick or Treat” at Patti’s care facility on Halloween night!  Patti was able to enjoy an evening of costumed characters parading before her. It’s a rare holiday she can participate in and enjoy where a wheel chair isn’t a factor.

Last Thursday was “designated” Trick-Or-Treat evening and I brought Patti home for an afternoon & evening of family time.

 

Halloween has always been a MAJOR Holiday for this family. At our previous home we would average 200+ trick or treat visitors on Halloween and host a neighborhood family party immediately afterwards.

 

Over the years, it was ideal for Patti as she ruled like a queen from her wheel chair on the deck while all paraded to her for treats. <grin>

 

Music, lighting, theatrical fog, and extensive decorations added to the allure. We never gave out candy, usually glow necklaces.

 

Lost in the display was the symbolism of a party of 6 ft skeletons sitting in chairs around a patio table I dragged into the front yard. There was always one open chair at the table. I’d begin my own ritual each Halloween evening by having a drink and spending some private time reminiscing with the skeletons.… In almost 15 years only one neighbor ever noticed that the number of skeletons changed or asked about the eccentric minutes.

 

Each skeleton represented a friend who had died too young. It was the only time we all could ever spend together.

 

Probably some dormant Druid gene in my DNA has always made my Halloween ‘edgier’ than Hallmark’s. In Irish mythology, the shield of Scathach is lowered for one night and the barriers fade between the world of the living and the spirits of the dead. Honored with food and entertainment the dead are welcomed for their brief visit home for one night during the ancient Celtic festival of Samhain to celebrate the end of summer and coming of winter.

 

As a big fan of Winter, I’ve always been intrigued by this ancient three day bash to welcome Winter and what a long strange trip through history it has been to copy cats like Christianity’s All Soul’s Day to today’s costumed Trick-Or-Treat kids gorging on candy. <grin>

 

However here they have “designated” Trick Or Treat nights. Of course, that cannot be Halloween night because bad things might happen. The ultimate in local government fascism. <grin> The end result is we have hosted exactly three (3) trick or treat visitors in 4 years.

 

Patti remarked several times about being confused. Her observations however were quite correct, such as “Where is everyone?” Or, “are you sure it is the right night.”

 

For once I found myself trying to explain it had nothing to do with MS but the outside world was screwed up. Talk about challenging information to process. <grin> ... What we need is more Druids and less local government paranoid interference in the world. <GRIN>

 

HAPPY HALLOWEEN!