Wednesday, October 31, 2007

Caregiving: Time warping on Tuesdays

“It's astounding, time is fleeting

Madness takes its toll

But listen closely …”


Patti was playing cards (rummy) Tuesday evening in her care facility activity room when I went to pick her up. ‘Assisted’ card playing when people are visually and/or cognitively impaired involves staff or volunteers helping players that want help.


I offered to take over helping Patti finish the hand before heading out for ice cream. I must confess I also thought I should be able to ‘rule’ since the other players were ‘challenged’. Boy was I wrong, as I got my butt kicked. <grin> Which also amused Patti to no end. I can only hope that memory loss will prevent anyone from remembering my rummy debacle. <grin>


“It's so dreamy, oh fantasy free me …”


One great advantage to a small town is a ‘local’ ice cream parlor. Rakestraw’s has been around for over a century and nothing lasts that long unless the product is GREAT. We picked up hand packed pints of pumpkin ice cream then headed home. A nice big dish of pumpkin ice cream is a perfect Fall treat to accompany some family TV watching, one of the Jaws sequels and then “House”.


“…With a bit of a mind flip

You're there in the time slip …”


After tucking Patti into bed at her care facility, I returned home to learn our daughter had discovered a video while surfing You Tube that some one had uploaded from an old obscure Bob Dylan movie, “Renaldo & Clara”. The footage had been shot during the Rolling Thunder Review Tours in the mid 70’s. I must admit I felt both COOL and somewhat OLD to see my name in the credits, though it seems like another lifetime.


And yes, it helped soothe the ego after being crushed by the elderly and visually and cognitively challenged in rummy. <grin>


“…Time meant nothing, never would again

Let's do the Time Warp again!”

“The Time Warp” by Richard O’Brien


Caregivingly Yours, Patrick Leer

Monday, October 29, 2007

Caregiving: bushwhacked by artichokes

Across the cognitive universe from FiOS and sharing Sunday newspaper stories on line is keeping Patti involved. 


Our wheel chair accessible van empowers opportunity by minimizing the impact of her Multiple Sclerosis physical symptoms. However, Patti’s MS cognitive symptoms such as emotional lability and pseudobulbar affect can make any outing unpredictable.


‘Appropriate’ seems increasingly difficult for Patti to gauge, in particular her growing use of "f*ck patois".


If you avoid social interactions who knows what impact that has on overall coping mechanisms. As a caregiver you roll the dice.


Stopping by the grocery store to pick up a few items Sunday afternoon, I plunked a basket in Patti’s lap creating a “live” grocery cart. Better yet I should say a totally unpredictable grocery cart.


Within feet of entering the store my living grocery cart suddenly and loudly exclaims “What the f*ck are those?” Scanning my head 360 degrees to find what alien entity warranted such a response, I guessed at a display of artichokes.


Quickly trying to diffuse Patti, I suggested it was not polite to insult vegetables. She was however undeterred in her abhorrence and loudly continued, “Who the f*ck would eat them?”


Asking her if she had some reason to believe that the artichokes were hard of hearing, I rolled her away to hopefully less offensive products. It would have taken a brave soul to try and buy an artichoke during that exchange. <grin>


Now on the other hand the remainder of the store visit was fine. Patti had appropriate dialogue about the advantages of Kaiser rolls over croissants for sloppy joe sandwiches and decided on the unique opportunity for sweet potato pie over pumpkin pie, never once sliding back into more inappropriate dialect.


Patti’s physical and cognitive symptoms of Multiple Sclerosis have left her in a different and unpredictable universe. I believe in the commitment of keeping her involved in interacting with the day to day world. More often than not the interactions are appropriate and I believe healthy.


Of course when one is bushwhacked by artichokes, well then all bets are off.


Caregivingly Yours, Patrick Leer

Sunday, October 28, 2007

Caregiving: sharing the Sunday paper

Back in the 20th Century I remember sharing stories from the Sunday paper over late breakfast (or ‘brunch’ for those from upper crusty homes). Call me nostalgic but here goes.

It seems that sports dominate newspaper front pages when so many other stories SHOULD. If sports 'must' then here is a front page sports story that demonstrates what one athlete can accomplish when talent and skill are driven with a passion to care.


              Marathon Man     

“…Tim Borland of Los Gatos, Calif., is on a quest to run a full marathon of 26.2 miles each day for 63 consecutive days in 63 different communities nationwide.

… His goal is to raise awareness and money for research in support of the AT Children’s Project and its mission of trying to find a cure or life-improving therapies.

…“It is an endurance test not unlike what the kids go through day in and day out” …

… Appalachian Harley Davidson in Silver Spring Township hosted a charity “tailgate party” Saturday which saw Borland, Klein and other AT children cross the finish line in triumph. …”


     I myself have suffered for decades with Cluster Headaches, a particularly vicious cousin of Migraine headaches. I can so relate to trying everything and anything. This opinion piece by Judith Warner not only hit the spot but left me smiling over a topic I rarely smile about.

               The Migraine Diet

“…I stopped drinking caffeine and alcohol and stopped eating chocolate, cheese, M.S.G., nuts, vinegar, citrus fruits, bananas, raspberries, avocados, onions, fresh bagels and donuts, pizza, yogurt, sour cream, ice cream, aspartame and all aged, cured, fermented, marinated, smoked, tenderized or nitrate-preserved meats

…That’s the tradeoff: taking daily drugs, or living a life that feels not quite worth living.

… In fact, I think that I’ll sanctify Halloween by eating every single forbidden food on the migraine diet, all in the space of a couple of hours. … Somehow, I doubt that I’ll end up in the emergency room.”  


You can click on the blue headlines for the full stories. Wishing you and yours the best of possible Sundays!


Caregivingly Yours, Patrick Leer

Tuesday, October 23, 2007

Caregiving: Verizon FiOS - 'completed'

Final round of Verizon FiOS installation went off without a hitch. I’m now surfin’ the net and talking on the phone over pulses of light. <grin>


There is this fun site you can speed test your PC internet connection on line. Speakeasy — Speed Test (Download speed is a measure of how fast your internet connection delivers content to your computer.)


As for my trusty Dell Dimension 8200 …


BEFORE Verizon FiOS (with Verizon DSL)

          Download Speed:    776 kbps


AFTER Verzion FiOS

          Download Speed: 15,559 kbps


Full speed ahead!


Caregivingly Yours, Patrick Leer

Caregiving: OMG my van has been shot

It can be eerie how an idea stream such as ‘the cognitive universe’ can connect several entries. How could I have forgotten those who “choose” to misuse their cognitive abilities.


This morning I answered my door bell at 6:50 AM to find a Pennsylvania State Trooper at my door. Of course, my mind began running through all the imagined possibilities, before he could open his mouth.


Wishing me a hearty good morning he explained that vandals had gone through the neighborhood overnight shooting at cars with a pellet or BB gun. My van had been shot.


Operating with only one cup of morning coffee and still flabbergasted by a State Trooper at my door in the dark with a mega powerful flashlight in his hand my brain finally clicked over that everyone I know is OK. Whew! … Then, Oh My God my wheel chair accessible van has been shot!


Still barefoot and dressed only in my bedtime smiley face bright yellow pants and t-shirt I abandoned sense of public fashion and bolted to the driveway to … what? Hold it in my arms? Call 911? Would it live?


Fortunately the Trooper pointed out how bad of a shot the vandals were as they had missed my rear windshield and hit the back panel of my van. Dozens of cars that he had so far discovered had been shot and many had windshields broken and shattered.


I must admit I had read about such incidents or heard about it on the news and thought how grateful I was it couldn’t happen around here, so much for that line of thought.


People who ‘choose’ to abuse their cognitive abilities are everywhere.


Oh, why a State Trooper? It seems the first vehicle reported was a State vehicle. The ‘heat’ is on.


Caregivingly Yours, Patrick Leer

Monday, October 22, 2007

Caregiving: across the cognitive universe

Across the cognitive universe from the previous FiOS entry to Patti’s world, I was greeted by “Thank God you’re here. I was so bored!” when I picked her up from her care facility for dinner and an evening at home tonight.


Yes, such a greeting tugs at the heart strings. Second guessing yourself never ends.


I have learned, however, to take the time to discover what “really” has been happening in her day because her greeting though poignant is a 'knee jerk' verbal response.


For example, Patti’s afternoon hours today had been occupied with bowling, Texas hold-em poker, a visit from her parents and trivia pursuit game, and some activity called parachute popcorn. Yet Patti could remember nothing.


Memory loss can create a different kind of boredom. You can occupy Patti non-stop but if she cannot remember it then is she, or is she not bored?


It is the kind of question that borders on the proverbial query, does a tree make a sound if it falls in the forest and no one hears it. Except Patti is not ‘rhetorical’.


Living with Multiple Sclerosis as a family, it is not unusual on any given day to find ourselves drifting across the cognitive universe.


Caregivingly Yours, Patrick Leer

Caregiving: Verizon FiOS - 'round 1'

Today my lawn resembled a construction site as workers and two awesome drilling and trenching machines ran Verizon’s fiber optic lines to my house.

Tomorrow Verizon’s geek squad arrives to connect and activate us to FiOS.


Trying to guestimate the costs of labor, machines, PLUS tomorrow’s installation including computer programming activation, new wireless router, and back up battery to power the system for 4 to 8 hours in case of power outages – I’m glad it’s FREE while Verizon is eager to get FiOS into neighborhoods. We will be the first house in our neighborhood.


WHY FiOS? Well for us, for the same monthly expense that I am currently paying for Verizon DSL and Verizon home phone service through FiOS our internet connection will be 10X faster than DSL and our home phone service will NOW include unlimited local and long distance calling for the continental US and Canada.  


When FiOS TV services become available in our area and I can drop my cable subscription it will actually save me money monthly.


... or, at least that is what I believe will be true. <grin>


Verizon’s ground troops have finished and left little to no trace of their work. Where they needed to dig up my lawn they carefully removed the grass like sod and replaced it even adding a layer of potting soil beneath it.


Standing ovation for round one! 


Caregivingly Yours, Patrick Leer

Saturday, October 20, 2007

Caregiving: 'bugs'

Schools Try to Allay Fears About Staph

Reports of Student Infections Rise to 31


“Parents, concerned about staph infections that have affected 31 students in the Washington region, inundated schools yesterday with calls and flooded Internet lists for information about the antibiotic-resistant strain. …


It certainly seems as if the time honored tradition of getting your child up and off to school in the morning is becoming more complicated and stressful. In another 10 years how many do’s and don’ts will a parent run through?  


Years ago in ‘our story’ we had an early wake up call of sorts when Patti’s Multiple Sclerosis treatment du jour involved immune system suppressants. Megan then attending Pre-K through early Elementary School was a happy healthy child but simply by attending school became a walking laboratory of infectious ‘bugs’.


Necessity drove us to a life style where Patti would alternate living a month with us and then a month away with her parents Family, parenting, and caregiving was topsy turvy. As I remember, desiring some control over her treatment and her life also motivated Patti’s exploration, at this time, into alternative medicine, Dr. Hans Nieper’s clinic in Hannover, Germany.


Caregivingly Yours, Patrick Leer

Monday, October 15, 2007

Caregiving: a lot like skipping stones

Too many times caregiving is a lot like skipping stones on a pond …


The other morning I received a call advising me that Patti had an episode of emesis after going to bed. (Why when our language is so rich with synonyms for vomit does medical jargon choose boring?) Anyway the nursing staff was “advising” me, as required and offering Patti’s theory that it must have been something she ate.


Something she ate? Hey! I cooked dinner that night. A delicious thin sliced chicken breast sautéed in a Caribbean Jerk marinate with fresh steamed green beans and strawberry/banana yogurt for dessert.


The other day I received an email from dear friends asking about a TV comedy “The Office”. They’ve known us long enough to remember the Pre-MS Years when Patti worked for over 10 years in a paper company office as a buyer which is the fictional working environment of the sitcom. … I have tried a couple times to interest her in the show thinking that perhaps her long term memory might click. … NO success to report.


Last night putting Patti to bed I noticed her bed rail was missing. Where does someone misplace a bedrail? Asking the charge nurse I was reminded that with Patti’s Multiple Sclerosis progression she no longer needs one since she cannot get herself even up in bed much less out of bed. While yes I was aware this was one of those things I guess I just blocked.


Through too many years of home care I had knick named one of Patti’s symptoms, jack-in-the-box sleeping. It used to drive me nuts. Patti would want nothing more than to get into bed to sleep, and only minutes later want to get up and out of bed. If unattended or unassisted she would fall and be found on the floor.


Somehow seeing that missing bed rail dramatically demonstrated progression, and gratitude for the shifts of caring eyes watching over her.


… and just because the last several stones sunk into the pond … well, you don’t give up believing you can skip the next stone across the water.


Caregivingly Yours, Patrick Leer

Thursday, October 11, 2007

Caregiving: Six Degrees of Kevin Bacon

CNN Heroes: Battling MS with Kevin Bacon


   …Not long after her (Multiple Sclerosis) diagnosis, (Robin) Maxwell heard about a Web site that actor Kevin Bacon had started called     

    Inspired by the college trivia game Six Degrees of Kevin Bacon, the site connected people with various charities for fundraising purposes. …

     "When we first launched the site," Bacon said, "the six people who had the most donations ... I matched $10,000 each to the charity that they were supporting." …


Caregivingly Yours, Patrick Leer

Wednesday, October 10, 2007

Caregiving: virtual mobility & FUN

When Nintendo launched their latest generation Nintendo Wii for the couch potatoes of the world, it also opened a door for those “confined” to a sitting position. 


At Patti’s care facility Nintendo Wii when played on their mega screen TV has become a portal to virtual bowling, golf, etc and all variety of simple video games. I understand from the facility activity coordinator that this is becoming a standard among care facilities / nursing homes everywhere.


So the next time you hear the sounds of racing cars, tennis, baseball, golf, bowling, or boxing accompanied by cheers, groans, laughter and possibly even cursing coming from a party room it may not just be teen agers. <grin>


Caregivingly Yours, Patrick Leer

Tuesday, October 09, 2007

Caregiving: stay involved

Last Wednesday was the most recent Care Plan Review. Required under the Nursing Home Reform Act of 1987 (OBRA 87), Care Plan Reviews are regularly scheduled opportunities for the patient, family and/or designated medical advocate to sit down with care facility department heads and talk about a patient’s care plan.


Surrounded with nursing and medical records, dietician, physical therapist, activity/recreation coordinator, and custodial care staff feels like being at a board meeting.


Periodically I like to include Patti. She has a way of interjecting ‘her’ perspective. For example when asked once if she had any questions she responded, “What the (bleep) are you people talking about, I just want a (bleeping) cigarette!” <grin>


For a decade and a half I had only discussed caregiving between myself and Patti. With years of Pattis progressing cognitive impairment from Multiple Sclerosis basically those conversations had dwindled to talking with myself. <grin> The care facility era introduced team work.


Whereas I was Patti’s sole caregiver 24 hrs a day, 7 days a week; now at least 21 staff on her unit each day (7 per shift X 3 shifts) interact with and care for Patti, in part, each and every day. 21 vs 1! You can believe that besides being ‘better’ it takes communication and ‘written’ communication.


Home caregivers make it up as they go along, as I did for 15 years. Always inventing care approaches as needed and more often than not learning through trial and error. The care facility era in contrast is about team work.


It does take adjustment and effort for a home caregiver to ‘stay involved’ especially since most likely you have reached this point because of overwhelming care needs and caregiver exhaustion. It may seem like you are on another planet.


Just remember YOU know the patient best. Don’t be intimidated, after all YOU have been doing the work of a team by yourself for years. YOU have more ‘real life’ credentials than anyone to sit at that meeting.


Caregivingly Yours, Patrick Leer

Tuesday, October 02, 2007

Caregiving: video anniversary

“A teacher affects eternity; he can never tell where his influence stops.” (Henry Brooks Adams)


A year ago this week a special education teacher in Alabama, Jackie of AOL Journal “LIFE IN BAMA”, nudged me in Pennsylvania to try You Tube to communicate “Caregivingly Yours”.


A year later, between You Tube and Google Video, people have watched and perhaps experienced our story of living with Multiple Sclerosis over 15,000 times through our videos.


Apparently visual communication can also reach beyond the limitations of language. Our caregiving and living with MS videos have been linked and embedded in non-English journals and web sites. I am aware of links in French, Spanish, Portuguese, Danish, Swedish, Dutch, German, Turkish, and Asian character script.


Two videos lead the pack in views:

12 months on line (debut video)

·     caring on: Multiple Sclerosis & family - wheelchair rollin'    

·     Views: 3,568 (You Tube) + 182 (Google Video)

6 months on line  

·     caring on: Multiple Sclerosis & family - wheelchair van

·     Views: 2,033 (You Tube) + 95 (Google Video)  


Between You Tube & Google Video, four others have crossed the 1,000 views bench mark:

9 months on line

·     caring on: MS & family – choking   

·     caring on: MS & family - scooter sleigh ride    

·     caring on: MS - assistive technology    

6 months on line:

·     caring on: MS & family – cognitive challenges    


Maybe I’m old enough to simply be easily impressed with technology but I still find it overwhelming. … and again, special thanks to my muse, Jackie, on this video anniversary. 


Caregivingly Yours, Patrick Leer

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