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

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, Multiple Sclerosis, cognitive symptoms

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

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: Verizon FiOS

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

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, Multiple Sclerosis, staph, Dr. Hans Nieper

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

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, Multiple Sclerosis, MS

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 SixDegrees.org.      

    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

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: Multiple Sclerosis, MS, Six Degrees of Kevin Bacon, SixDegrees.org

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

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, care facility, nursing home, Nintendo Wii

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 Patti’s 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

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, Multiple Sclerosis, care facility, nursing home, Care Plan Review, Nursing Home Reform Act

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

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, Multiple Sclerosis, MS, You Tube, Google Video

Caregiving: Why? Questions of a 56 yr old going on 3

Some days I feel like a three year old endlessly asking ‘why this?’, ‘why that?’.

 

Why should ‘care’ be defined based on convenience? I bring Patti home or on outings on average of 4.5 evenings per week. Recently, I was asked, “Why? That’s not what most people do.”

 

Why is it usually ‘spouse’ caregiver? What happened to blood is thicker than water? What about siblings or children … the only “non-blood’ relation is the spouse.

 

Why do family and friends drift away leaving a challenged person increasingly isolated? … “Well, everyone has their own life to live.” When did family and friends become fragmented concepts instead of bonds?

 

Why is medical science racing to prolong life with no apparent thought to quality of life? Or even independent life?

 

Why do we debate about how we ‘define’ a disability or ‘report’ a disability, rather than how can we better ‘care’? … Over 40% of people age 65 and older reported disabilities in 2000 Census. In 2002, the Census Bureau reported 11% of children ages 6 -14 had a physical or cognitive disability. … To caregivers, ‘they’ are not statistics but are names, faces, and heart strings.

 

Where do people with challenges go? 20% of the overall population is challenged with a disability. Look around yourself when you are out, do you SEE people that reflect anything close to these numbers? To caregivers “where do they go?” is not only poignant but sometimes scary.

 

Confronted for years with a failing health care system, has this baby boomer generation become proverbial lemmings? Are too many simply looking out for themselves while crushing on toward collective and catastrophic consequences?

 

Who knows? Though 56 going on 3, I know that sometimes there just are not any good answers to “Why?”, well, … except maybe in dreamers:

“Yes, 'n' how many times can a man turn his head,

Pretending he just doesn't see?

The answer, my friend, is blowin' in the wind,

The answer is blowin' in the wind.”

Bob Dylan “Blowin’ In the Wind” (1963)

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, disability

Caregiving: Lymphocyte Low Rider

Watching TV commercials, if your hair has ‘split ends’ your life is at a crossroads. OMG, what if anyone notices that your ‘telomeres’ are frayed? <grin>

 

Chronic Stress Can Steal Years

From Caregivers' Lifetimes

 

·     … three-decade-long program at Ohio State investigating the links between psychological stress and a weakened immune status.

 

·     … effects of chronic stress can be seen both at the genetic and molecular level in chronic caregivers' bodies.

 

·     Caregivers also differed dramatically with the control group on psychological surveys intended to measure depression, a clear cause of stress.

 

·     “Those symptoms of depression in caregivers were twice as severe as those apparent among the control group,” Kiecolt-Glaser said.

 

·     “Caregivers also had fewer lymphocytes,” Glaser said, “a very important component of the immune system. They also showed a higher level of cytokines, molecules key to the inflammation response, than did the control group.” 

    

·     Other experiments showed that the actual telomeres in blood cells of caregivers were shorter than those of the controls, and that the level of the telomerase repair enzyme among caregivers was also lower.

 

·     Kiecolt-Glaser said that there is ample epidemiological data showing that stressed caregivers die sooner than people not in that role.

 

·     “Now we have a good biological reason for why this is the case,” she said. “We now have a mechanistic progression that shows why, in fact, stress is bad for you, how it gets into the body and how it gets translated into a bad biological outcome.”

 

·     Much of the Ohio State work is now shifting to studies on how to intervene with that stress in hopes of slowing the weakening of the immune system in highly stressed people.

 

Lymphocyte Low Rider, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving

Caregiving: for ALL of us ALL of the time

Some men and women ‘care’ for All of us ALL of the time, they are the men and women of our Armed Forces.

         

My nephew departs today with the Marine Corps for Iraq. Lingering over these pictures of this young father and young warrior it’s easy to understand that “Semper Fi” translates to “always faithful”.

 

God’s Speed, Danny!

 

Caregivingly Yours,

Patrick Leer (aka Uncle Patrick)

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, Armed Forces, USMC, Iraq

MS Caregiving: Nursing home, what's in a name? Cost?

To answer Bea’s questions in comments to my last entry:

 

A building can be named anything. ‘Inside’ it is all about level of care. A skilled nursing facility (SNF) cares for people who have BOTH significant challenges with activities of daily living (ADL) AND require 24/7 nursing care for a disability or illness (e.g. Multiple Sclerosis). Other care facilities may be licensed for custodial ADL care only.

 

According to the AAHSA:

·        The average annual cost for a nursing home is $70,095.

 

SHOCKING number? Less then 10% of adult Americans can estimate the cost of a nursing home.

 

DO NOT believe for a minute that long term caregiving at home is an inexpensive alternative. Annual home health care cost for a part time ‘custodial care’ aide is approximately $25,000 (25 hrs/wk) and projected to more than double as demand increases with aging population.

 

Or you can do it like I did, try to do it all yourself … except, studies show “home care giving costs an (individual) an average of $656,000 in lost wages, pensions, and Social Security, not to mention negative health impacts.”

 

And … in spite of the sacrifices to maintain home care the person in need will not get the same access to medical care as in SNF care.

 

This old war horse has fought MS progression through both. For 15 years I was Patti’s home caregiver, and have now been her caregiver in the 24/7 care facility era for 3 years.

 

Like 50% of people, we started out paying for SNF care out of pocket until our family financial assets were exhausted and then applied for MEDICAID. In ‘our’ story, the preceding decade and a half of home caregiving did not leave much to exhaust. Patti is getting the best medical care possible for her Multiple Sclerosis symptoms while we the family … well, let’s just say …

 

… through the years you lobotomize yourself of the customary dreams or future plans associated with money. Caregiving is an altered universe.

 

Caregivingly Yours, Patrick Leer

http://caregivinglyyours.com/

Tags: caregiving, Multiple Sclerosis, MS, nursing home, SNF, skilled nursing facility, ADL, activities of daily living, custodial care, home care, Medicaid

MS Caregiving: X-rays and slot machines, a birthday story

Celebrating Patti’s birthday on Tuesday was certainly an interesting day and one that reflects the support she needs and has for living with Multiple Sclerosis.

 

The night before I had flagged ‘for the record’ Patti’s deep bronchial cough. Tuesday AM after her doctor had examined Patti during morning rounds, a chest X-ray was ordered and Patti was started on nebulizer treatments, 'as needed'.

 

One PLUS to care facilities is that doctors do make early morning ‘house calls’ and care plans are implemented immediately such as the nebulizer. Mobile chest x-ray unit arrived, took X-ray, analyzed ASAP and faxed results. X-ray was negative. … Nothing in home care can match that. <grin>

 

Multiple Sclerosis is about an immune system that is out of whack so you cannot really take chances or ‘wait and see’ when dealing with any health changes. … After the X-ray results she was started on cough specific medication.

 

… and then … we were off to Charles Town, West Virginia for some birthday fun. Patti enjoys the mega-neon, Disney World like environment of the Charles Town Races & Slots. Unlike so many other public activities EVERYONE is sitting down, so Patti does not feel like she is lost in a forest of walking people.

         

Gambling in West Virginia is legal at 18 so our daughter joined us adding to the family birthday celebration and fun for Patti.

 

Being a high priest of the First Church of Mathematics <grin> I often preach the fool’s game that casinos are IF you think you will win; however you CAN mathematically control what you loose and maximize your fun. A couple hours of playing and fun PLUS food cost us $27. 

 

To close the day, Patti was happily surprised to discover birthday presents from her brother on her bed.

 

Living with Multiple Sclerosis, or I suspect any long term physical or mental condition, IS NEVER just about celebrating a birthday. Any given day is a blend of health care and family. As the primary caregiver, you stay the course and find the alchemy to produce fun.

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: caregiving, Multiple Sclerosis, Charles Town Races and Slots

MS Caregiving: scooter vs tank

Beyond all the responsibility and stress ofcaregiving, a caregiver is also the portal to FUN for those dependent on you. Play IS therapy.

 

You are welcome to join us for a 2 minute 19 second peek into caring on: Multiple Sclerosis & family – scooter vs tank

(Some readers have noted they have challenges using the AOL video display. For your convenience you can simply use the links to view the video directly.)

You Tube

http://www.youtube.com/watch?v=t7TngWetJ1A

Google Video

http://video.google.com/videoplay?docid=-3935881781384607967

 

Special thanks to the US Army for creating the ARMY HERITAGE TRAIL, the most ‘accessible’ outdoor exhibit we have ever encountered in 22 years of living with Multiple Sclerosis as a family. 

 

While Multiple Sclerosis has left Patti with a mountain of physical and cognitive challenges and totally dependent on others, the ARMY HERITAGE TRAIL is a unique, absolutely accessible, and totally FUN outing.

 

With autumn weather returning to the Cumberland Valley, it was the proverbial ‘best of possible’ afternoons for scootering and living with MS. 

 

Caregivingly Yours, Patrick Leer

http://www.youtube.com/daddyleer

http://www.myspace.com/patrickleer

Tags: Multiple Sclerosis, MS, caregiving, Army Heritage Trail, Rascal Scooter