Friday, September 28, 2007

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

Tuesday, September 25, 2007

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


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)

Friday, September 21, 2007

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

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Wednesday, September 19, 2007

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

Thursday, September 13, 2007

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

Google Video


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

Wednesday, September 12, 2007

Caregiving:medical insurance premiums keep rising

Victoria Colliver of the San Francisco Chronicle ‘nails’ the issue:


“ … annual (health insurance) premium costs for the average family in 2007 still topped $12,100, or the equivalent of a new economy car …”


“… making coverage increasingly unaffordable for American families and businesses…”


Medical premiums keep rising far more than inflation


NOW one of these political candidates needs to ‘nail’ the solution.


Caregivingly Yours, Patrick Leer

Tuesday, September 11, 2007

Caregiving: adverse drug affects

Reports of adverse drug effects reported to the U.S. Food and Drug Administration (FDA) more than doubled in the last decade, according to a new study. Deaths associated with the serious effects also more than doubled. … The report is published in the Sept. 10 issue of the Archives of Internal Medicine. (WebMD Medical News)


 “… The FDA said the increase in reported "adverse events" is not necessarily a bad thing …”

FDA criticized after study finds drug-related deaths up


On the list of drugs most commonly identified in fatal events:

   1. Oxycodone (OxyContin and others)

   2. Fentanyl (Duragesicand others)

   3. Clozapine (Clozaril)

   4. Morphine

   5. Acetaminophen (Tylenol)

   6. Methadone

   7. Infliximab (Remicade)

   8. Interferon beta (Rebif, Betaseron, Avonex)

   9. Risperidone (Risperdal)

  10. Etanercept (Enbrel)

  11. Paclitaxel (Taxol)

  12. Acetaminophen-hydrocodone(Vicodin, Lortab, and others)

  13. Olanzapine (Zyprexa)

  14. Rofecoxib (Vioxx)

  15. Paroxetine (Paxil)


Drugs on the list of those most commonly identified in disability or serious outcomes:

   1. Estrogens

   2. Insulin

   3. Infliximab (Remicade)

   4. Interferon beta (Rebif, Betaseron, Avonex)

   5. Paroxetine (Paxil)

   6. Rofecoxib (Vioxx)

   7. Warfarin (Coumadin)

   8. Atorvastatin (Lipitor)

   9. Etanercept (Enbrel)

  10. Celecoxib (Celebrex)

  11. Phentermine (Pro-Fast)

  12. Clozapine (Clozaril)

  13. Interferon alfa (Alferon N, Infergen, Intron A, Roferon-A)

  14. Simvastatin (Zocor)

  15. Venlafaxine(Effexor)


“The numbers reported in the recent study are probably "the tip of the iceberg," says David W. Bates, MD, director of the Center of Excellence for Patient Safety Research and Practice at Brigham and Women's Hospital in Boston and professor of medicine at Harvard Medical School in Boston.  Many more adverse drug events, he suspects, go unreported."


Caregivers in particular NEED to be the extra layer of consumer education, safeguard, and monitoring. Vigilance is the difference between 'caring' and administering.


Caregivingly Yours, Patrick Leer

Monday, September 10, 2007

... proud to JOIN us

Sunday I had the honor of congratulating and shaking the hand of a woman who will become a US citizen this week. Her smile, her pride, and her sense of achieving a dream genuinely touched me. 


With the approaching shadow of the anniversary of the September 11th terrorist attacks, it was refreshing to be reminded that there are people who not only will stand with us but are proud to join us.

Sunday, September 09, 2007

Cargiving: cars, tow trucks, & dog days

All in all this summer has been rather beautiful around here. Certainly the coolest I can remember, until this last week. Weather is critical to Multiple Sclerosis outings and for whatever reason the steamy hot “dog days of summer” have wandered into September. Stay in air conditioning with the least possible transfers has been the best of possible themes.


Though, I personally had an interesting ‘dog days’ experience.


Friday evening I was driving in the Potomac, MD area and our Taurus station wagon suddenly stopped running. It was operating perfectly until that moment. Fortunately, I was alone so I did not need to worry about Patti or Megan as passengers, but I did need to concern myself that I was 100 miles from home.


Forever, I have had AAA Membership. When Megan started driving I upgraded to AAA PLUS Family because it includes so many free tows a year up to 100 miles per tow. … If you draw a circle on a map with a 100 mile radius from your home that is a HUGE coverage area. It is both comforting as a parent and a driver.


IF I had to pay out of pocket for the tow it would have cost $495 to be towed home from where my car broke down. If I had it towed to an unknown shop near where it broke down and had to rent a car or hotel room and return later this week to pick it up, costs quickly would have approached towing. Yet because I had AAA PLUS and my home was 99.95 miles <grin> from where it broke down it all cost me nothing!


… and of course, as soon as the Taurus wagon was chauffeured home on the back of a truck it started right up. <grin>


Caregivingly Yours, Patrick Leer

Sunday, September 02, 2007

Caregiving: the gift of time

“Respite” is a word I thought I could define, that is until I tried ‘googling’ the word ‘respite’. Whoa! There is way too much information. 


Caregivers are a spectrum and respite obviously varies. “The gift of time” seems unquestionably the best of possible definitions.


Current guestimates are that 20% of adult Americans provide care for a chronically ill, disabled or aged family member or friend during any given year. … Are you part of the remaining 80% and looking for that perfect gift? Try ‘the gift of time’!


Respite does not mean you watch so and so while I take a break.


In US culture, family, friends, and neighbors are frankly intuitive about respite and wonderfully supportive “in the beginning”. For example, bringing over a meal, visiting is about helping. Rolling up the sleeves and talking while sharing some housekeeping chores.


As time goes by in long term care, caregiver support drifts. That early network of pulling together fades.


Not every caregiver makes it easy to help. Taking care of everything by oneself can get all mixed up in gender, culture, and more. Invite yourself, yes, just try a little give and take. Help shouldn’t kick down the door. Don’t define help, be helpful.


A parent caregiver recently shared with me how a visit from a taller and more mechanically inclined friend spontaneously shifted to replacing burned out bulbs in every ceiling light.  Not only was the respite visit enjoyable but the ‘gift of time’ illuminates the home long afterwards not only in light but in memory of friendship and caring.


Knowing you are not alone is a beacon for any caregiver, any time, any where.


Caregivingly Yours, Patrick Leer

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