November 9, 2016, the Day After a Sexual Predator Won the Presidential Election

November 13th, 2016 1 comment

At 345am on November 9, 2016, my alarm went off.  I am retired but I volunteer work on Patient Safety and other healthcare issues.  That morning I was headed to New Orleans to a conference on cost and quality.  The night  before, I had watched  all that I could stomach of the presidential votes being counted on TV.

Mike, my husband confirmed it.  Hillary had conceded to T.

Mike and I voted early.  The tension and vitriol during this presidential campaign was causing both of us way too much stress.  I just can’t stomach that much hatred and negativity.   We already knew how we would vote and we thought that we could allay some tension if we took care of our voting business.  NOPE, it didn’t work.  TV coverage and constant horrifying and disgusting stuff surfaced every day.  What was happening to my country?

About 10 years ago, a sexual predator, in the form of an uncle, scared a cousin of my granddaughter. He lured her into going for a ride with him in his shiny new truck.  She had just turned 16 and had a newly printed drivers license.  He directed her onto roads that she was unfamiliar with and then he began a sickening sexually explicit trash talk with her describing what he would like to do to her, and bragging about what he had done to other young girls.  She was such an innocent that she didn’t understand half of what he described.   She was scared, and lost.  She didn’t know how to get back home, so she just kept driving.  She was from a beautiful Christian family and on most occasions she didn’t go with boys unless she was chaperoned. This was her trusted uncle!  One can only imagine her fear.  She didn’t stop the truck and fortunately she eventually found her way home.  He did not touch her and thank God for that.  That uncle was my only grandchild’s other grandfather.  And he lived in the same house as her.  She was just 13 at the time.   On the advice of police, her father (my son) and I worked to get him away from her.  We did it to protect her and her young friends from a sexual predator.  That was the beginning of the end of our relationship with my granddaughter.  Her loyalty was to her “other” side, including the sexual predator grandfather.  We had cared for our sweet girl for many years in our home.   She spent entire summers here and most holidays.  She had her own room and things here.  We love her deeply.  And now she barely speaks to us. We haven’t seen  her for over 7 years.  She is now 24 years old.  We were not invited to any events in her life, like her high school graduation with honors or her college graduation.  She has shared one photo of herself in all those years.  I have books full of them from our time with her.

When a family gets behind a sexual predator and dives into denial, it is impossible to penetrate that.  The disgusting perpetrator  we knew 10 years ago has a “devout Catholic” wife who immediately took him to her priest.  He lied to the priest, after telling the police the truth.  The small minded wife stuck by him and defended him.  She told her daughters and son and their families “we will never speak of this again”.  Her doe eyed denial saved  face, but destroyed very close and loving relationships all through her very large extended family, and it separated my family from our beloved girl.

There is great impenetrable strength in denial and undeserved loyalty.

This example of my painful separation from my sweet granddaughter is a microcosm of the vast harm a disgusting small man with those sickening tendencies can bring to those around him.  When they get away with their appalling behavior repeatedly, over many years,  it empowers them to be even more disgusting.   I have never written about this part of my life before.  It is very painful and something that I have not shared with a lot of people, but it is true, it is my reality and it is time for me to share it.

Almost 50% of American voters got behind a sexual predator for president and now he is going to live in the White House. That is a huge portion of our citizens that turned a blind eye to his predatory behavior, that was confirmed by his own words,  a number of women,and even by prior wives.   I can only imagine what kind of harm he can do to all of us, when a single creepy sexual predator uncle/grandfather could wreak such havoc in his own family and as a result, in mine.  Even before his election, T has left a path of destroyed lives and emotionally battered women.

I am horrified over this election and I will grieve it until T is finished.

God help us all.

 

 

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Right Care Action Week and Recompence Shore Campground

October 21st, 2016 1 comment

Last Monday October 17, my husband Mike and I packed up our camper and went to Freeport, ME.  The weather was predicted to be unseasonably warm and dry.  Also, it is the peak foliage season.  This couldn’t get any better, could it?

The reason for our trip was twofold.  We are early senior citizens (67 and 68) we feel the need to do what we can while we can still do it.  Camping has been a big part of our lives and we would love keep it up.  It is a great way to travel, and to do it cheaply and mostly in comfort.  Our traveling nest offers this.  And we get to take Louie.

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We settled that afternoon on the edge of a field at Recompence Shores Campground.  Then we found a vacant ocean front camping lot and stared at the gorgeous views and foliage.   It’s pretty simple stuff, but stuff that we love.

On Tuesday morning, I drove some hilly beautiful roads to Brunswick Maine to meet up with Poppy Arford, my colleague in Healthcare transformation.  We would host a listening booth table as part of Right Care Action Week at the Brunswick Senior Expo, in the Cooks Corner Mall.   Poppy had information sheets and beautiful posters printed up for our display, and we each carried clip boards to write on.  We introduced ourselves to about 100 seniors and other exhibitors, and asked the question “What worries you most about healthcare?”  and if they had no worries, “What do you like about your healthcare?”  http://rightcarealliance.org/right-care-action-week/

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I have always loved working with seniors.  They/we are generally sharp, engaged and straight forward in their responses.  This was exactly the case on Tuesday.

Let me tell you about a few of the people I met that morning.

1. A tiny white haired 80ish lady with a walker approached.  When I spoke to her, she said it was hard to see me because of the bright light behind my head, and could we switch positions.  So we did.  She told me she is legally blind.  She uses the walker because if she bumps into something, the walker takes the hit instead of her.  Her greatest worry was getting alzheimers.  She said she doesn’t have it, but if she got it, she has no one to help her.  She has no family or support people.  Her worry touched me personally because of my own mother and her dementia.  This lady also expressed her exasperation with the Maine DHHS and how they lack coordination, efficiency and effectiveness.  She struggles with poverty and when they mess up her EBT card, she is in trouble.  She said she never gets the same case worker twice, and that they take care of complaint forms in bunches instead of as they come in.  The services are slow and uncoordinated and it affects her a great deal.

2. A sweet couple, married 59 years shared that they have a 45 year old ‘girl’ and a 54 year old ‘boy’.  The girl is a nurse and she told her Dad to take his hands out of his pockets because if he falls, he would not be able to break the fall.  I told them they have  a wise daughter.  They were generally happy with their healthcare.  They were patients at Martins Point in Brunswick and their Medicare Advantage plan is through them as well.

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3. A man, estimated to be 80 or so, talked about his late wife’s costs for medicine.  He said that with insurance, a 90 day supply of 2 liquid nebulizer medicines was $900, and without insurance it would have been $9000 for 90 day supply.  He talked about his beloved wife and her struggles at the end of life, and also about the expenses for her medicines.  He felt that he was healthy and liked the care that he received at the VA.

4. A younger senior, maybe a little younger than me, was running a display table on Reiki, an alternative treatment for many health issues.  She was enthusiastic and bright and when I told her about the Right Care Alliance, she got very excited.  I invited her to join our movement.  When I told her about the Lown Institute annual conference, she said she could envision herself there, offering Reiki to the attendees in a central lobby!  WOW, what a great idea. He concern is that too much medicine is prescribed to mask symptoms of illness.  (yeah, my kind of gal!)  She said the goal should be to eliminate the symptoms, not mask them or drive them deeper.  I hope she joins our group.

It was a very busy and productive day.  I loved meeting, and talking to these awesome seniors about their healthcare.  We will take their comments and concerns to the Right Care Alliance staff and they will create a data base.  My guess is that costs issues will rise to the top, so I wonder if the question should have been a little different.  People associate the term “healthcare” with insurance and that can muddy the waters and center the conversation around coverage/cost.  I think perhaps I should have asked more about their actual hands on provider and perhaps hospital care.

Mike and I stayed one extra day at the campground, and it was a beauty.  On October 19, the temperature was 77 degrees at Old Orchard Beach, Maine.  Imagine that.  We had a great seafood lunch outside at a picnic table and then we went to the beach and watched the high waves crashing on the almost empty beach.  After we got back to our camper, we got a can of cold beer and took our chairs to the waterfront again and stared at the beauty of the place we were at.  Amazing.  Life is good.

oobseafoodwaterfoliage

 

 

 

 

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Perfectly Imperfect Human Beings and Love

September 23rd, 2016 3 comments

bert and ernie

 

 

 

 

Every single one of us comes bawling and squirming into the world all bloody and gooey.  There is nothing gentle or neat and clean about delivery, and certainly the same can be said about death.  We are all equals at the beginning and the end of life.   It is what happens in between that changes us.  That is when some  begin to believe that equality ends and they have risen above the rest of humanity.

Every one of us, whether we are men, women, smart, average, rich, poor, well or sick, are basically the same organism.  We all cry, hurt, get zits, bleed, defecate, laugh, cough, and breath.  This is a short list of what we do as human organisms.  The things that make us different from each other is how we think and learn and what we choose to do with the lives that our mothers gave us,  and how we treat other human beings.

No matter what we choose to do with our lives, we all have to struggle, learn, make friends, work, and best of all, love.  As imperfectly perfect as human beings are, we are nothing without love.

This is what is missing in healthcare.  I am not talking about the marrying kind of love…the kind that often ends up producing new lives.  I am talking about the kind of love that is for mankind in general.  Compassion, understanding, caring, listening, patience, touch….that kind of love belongs in healthcare relationships between patients and professional caregivers.   That is the “calling” that I had as a nurse and that so many of my colleagues had as well.  We went into nursing to care for people and help them to get healthy and when that was impossible to gently guide them to death.   We didn’t go into nursing to become bitchy cynical old crabs.  Sadly, too many nurses and other providers  end up that way.   The system beats the love out of them and doesn’t allow time for it.  There is no check box on the EMR for touching, or hand holding or spending time with a grieving family.  Therefore it is not a billable moment.

I want to share a few personal healthcare love stories.

In 1969 when I was about 19 years old, I did my maternity and nursery nurses training.  3 weeks before  I started nursing school in 1967, my baby brother Jamie was born.  I never felt very maternal before that.  I did a lot of babysitting as a teen, but I had no urge to have my own babies.  Jamie changed that.  I missed him terribly and he was growing so quickly between my visits home.  So, when I met Molly (I am making this name up) I fell in love.  She was perfectly perfect, but she only weighed 4lbs and came a little too early.  She was the first African American baby or patient I ever cared for. I came from an all white community in Northern Maine, my only exposure to diversity was at intramural basketball games.  I held Molly as much as I could.    I loved Molly and I cried both happy and sad tears when her Mom and Dad took her home.  This was my first awakening that humanity and love is  color blind.

A year or so later, I was doing Medical Surgical training.  I was assigned to 2 older gentlemen.  I was 20, so men in their 60s like I am now, seemed wicked old.  One was a sweet Italian man with an accent, who was what we use to call compliant, and polite, and who did everything I asked him to without complaint.   I’ll call him Ernie. I don’t remember Ernie’s medical problem so let’s say he had an ulcer…if he didn’t he would get one with his roommate.   The second man (I’ll call him Bert)  was a prominent Boston attorney, and he was  boisterous, bossy,  loud, nasty and even belligerent at times.  He was an alcoholic and a diabetic.  He would refuse to do what he was asked to do…even with a lot of explaining cajoling and nudging.  He sneaked chocolates from Ernie and laughed about it.  He was basically impossible!!!  So, I approached Ernie with caution, but also with professionalism.  I repeatedly told him that it was his choice, he could continue to do what he was doing and probably die prematurely, or he could take care of himself and I was there to help him. He figured out that even though I was green and young, that I wouldn’t cowtow to him and guess what….. He loved me!  In fact he demanded that I come to his room and draw his blood rather than the lab phlebotomist doing it.  I assured him that she was much more skilled at that than I was.  Both men turned their health around during that stay.  In a very short time, I fell in love with both of them and loved their teasing and joking around.  After they were discharged, Ernie’s wife brought  a large dish of  genuine Italian homemade lasagne to my dorm! This was a token of appreciation and love from Ernie.  Then the best of all…both Ernie and Bert came to my graduation.  It was a surprise.  Bert had lost weight and told me he was sober! He had been since he was discharged.  Both of them gave me huge hugs and a nice gift.  Their presence at my graduation was the best gift of all!   I felt like I had actually made a difference as a nurse, and I will never forget Ernie and Bert.

I have cared for thousands of patients over my career.  As an ER nurse, I gained skills at making a human connection with patients very quickly, and I could tell hundreds of stories.  At the end of my career, I felt the humanity slipping away…   I still loved my patients, but the lack of support and bureaucracy was a weight that I was ready to shed.  Arriving at  work and finding out that I would be understaffed, yet again was a killer.  12 hour shifts with no meal breaks broke me.   In the end, hospital nursing sucked the joy of nursing out of me, I am sad to say.

These are very old stories, but they are important ones. They are about genuine loving connections with human beings, not medical conditions.

I am now starting to be on the receiving end of healthcare. I have been a patient more than I like this past few years. I had anesthesia 3 times last year for needed surgeries.  I woke up all 3 times, crying.  My caregivers asked me if I was in pain.  “No, I said  “I am just relieved”.  I was also extremely grateful for their skilled and loving attention and for keeping me safe.   I have felt that patient/provider connection several times during my experiences.  Very special people work in our hospitals and doctors offices.  Let’s make the changes we need to so those special people are not broken, like so many of us have been.

Love, like water, is an essential part of our perfectly imperfect human lives and we need to bring it back to healthcare.

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Rightcare Starts with ME

September 10th, 2016 2 comments
Poppy Arford, Kathy Day, Stephanie Aines

Poppy Arford, Kathy Day, Stephanie Aines

Right Care Alliance

On September 8, 2016, my colleague Poppy Arford and I co-presented at the Maine Patient Safety Academy.   Poppy first introduced the Lown Institute, the origins and their incredible leadership. Then we encouraged our group to join our Healthcare Revolution with the Lown Right Care Alliance, and suggested ways to engage with us and our work.    Our theme for this particular exercise/presentation was “What Worries You Most”.  So, I shared my most pressing worries about Patient Safety, and then shared a story about my mother who is in assisted living. I worry about her health, safety and finances.  I know her money will not last and that eventually she will have to move again.  Change is extremely difficult for people with dementia.  Wouldn’t it be grand if insurances helped to pay for what really matters for people.  Dementia support and services are not covered by Medicare, but they would pay for an unending list of extremely expensive diagnostic tests, treatments and medications that would not make much difference for her at the age of 90.

After our introduction and  presentation, we asked our group of about 30 women, mostly nurses and other healthcare professionals,  about what worries them most.  This is when our session got really interesting.  First they wrote down their own worries in just a few sentences.  Then we gave them the floor, and they told us their worries.  WOW!  I still have a little lump in my throat.

Maybe nobody ever asked these hard working dedicated professionals this question, especially at a healthcare patient safety conference.  Their words validated my own worries and feelings, and they/we all validated each other.  It was a moving and emotional experience for all of us.  When a group of dedicated healthcare professionals say they are worried about something, everybody should be paying attention.

Our RCA organizer Stepanie Aines has compiled the list of worries from our session, and I am including them in this blog.  I am not shocked about most of these issues because I have worked in Patient Safety advocacy for 8 years now and I have heard most of them.  I was so moved because these people were so enthusiastic and candid about their worries, and everybody in the room understood each other.  We are all in this together, and that is the only way we can reform healthcare, together.  We will find trends and priorities and then go to work for change!

Poppy and I will be doing more listening exercises in listening booths over the next several weeks.  Right Care Action week is October 17 thru 21.  If anyone who reads this is interested in doing one of these activities themselves, in their place of work or some other setting please contact me or the RCA.  Links and contact information are at the end of this blog.  We are also working to form a Right Care Maine chapter and would love to have Mainers who want meaningful healthcare change to join us.

What worries you most about Healthcare?

These are the responses from our group of dedicated professionals.

Government – run healthcare

-Healthcare is a business-focus on profit making

-Pain management at end of life

-That a visit to the doctor will cost more than I can afford

-Not having an advocate when I can’t speak for myself

-Not having my wishes known

-1) Affordable healthcare during catastrophic illnesses. 2) There won’t be enough long term care beds available in the years to come with aging of Baby Boomers. 3) Proper placement of (human beings, real people) individuals relating to level of care, moving unnecessarily

-People I love being zombies – they are on wrong medications with awful scary side effects. Will that happen to me?

-1) Patients on too many medications. 2) Where meds are coming from now. ie clothes and other items must show a country of origin, meds do not, including prescriptions. 3) Healthcare is the only purchase that we make where we do not know the cost until after the fact. 4) The waste in Mainecare when a patient can come to ED at anytime where others with regular insurance have to wait because it is too expensive. 5) Hospital infections v. falls. My mother passed due to Central Line Infection,  Father from fall at a Nursing Home.

-1) Not having all the information to make an informed decision about my care or the care of a loved one. 2) Not being able to take care for a parent who has failing health and children who have their own needs (i.e. college tuition).

-1) Pain management in healthcare. 2) Staffing – staffing ratios increased pay for CNAs 3) lack of medicare support for assisted living

-  Loss of identity and decision making as well as ability to pay for healthcare as I age

-Unaffordable care – esp in negotiating for access to excellent care that is available to those who afford it (meds, tests, office visits, etc)

-Cost of Obama Care for retirees/folks on SSI – $700/month w/ huge co-pays and not all docs in network = substandard continual of care to folks that worked all their lives and paid into the tax system.

-Working too hard to put food on the table and to afford proper things for my kids that I’m too tired to be there emotionally and mentally for them and my husband. I fear working for those expensive, yet necessary things will take away from making a life.

-1) Affordable care. 2) My children won’t have resources and quality healthcare available to them. 3) High deductibles and HSAs are becoming the norm and more people cannot afford quality care. 4) Reimbursement from insurance companies is down – as a result quality practices cannot sustain practices.

-The lack of beds and help for treating patients with mental illness.

-Being stretched too thin. Having more and more tasks and responsibilities added that I cannot do my job safely. I am afraid that all the tasks will distract me from what matters most – patient care and safety.

-Medical errors in healthcare safety.

-Costs

-Available affordable healthcare for all.

Links:

http://lowninstitute.org/

http://rightcarealliance.org/

http://rightcarealliance.org/right-care-action-week/

https://usm.maine.edu/muskie/psa

Contact info:

kathydayrn@aol.com

parford@gmail.com

saines@lowninstitute.org

 

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Sepsis, a race against time

August 25th, 2016 No comments

The day after my 83 year old father was readmitted to the Hospital, where he had contracted MRSA pneumonia, he slipped into Sepsis.  He was extremely weak and feverish on admission, and they had put him through a lot of testing and diagnostics.  My mother and I went into his room after lunch and I immediately saw a change in him.  His skin was ashen, and he was hard to arouse.  His nurse, a freshly minted RN, was typing on the computer on wheels right next to his bed.  I asked her to check his vital signs.  She said, “oh, he is just exhausted because of all the testing”.  This was a reasonable excuse for his exhaustion, but I knew something was off.  I reiterated that his color had changed and he wasn’t responding to us appropriately.

Dad’s nurse checked his blood pressure and it was dropping very rapidly.  He was going into septic shock, part of sepsis.  She called for the crisis team and they brought the code cart with them.  While my mother and I watched, they injected life saving drugs and slowly brought Dad back.  He was transferred into ICU and kept there for several days.   Mum and I called the priest.

That was the most frightening day of my father’s illness.  Neither he nor our family were ready for him to go, and so he fought valiantly to stay alive.  His infection sapped his strength and he had become bedbound, but he lived for a few more months.   Rapid response of the hospital team brought him back from the brink of death.  Septic shock is a very dangerous medical condition.  Dad’s sepsis symptoms were very subtle, and without my intimate knowledge of my father, and my ability to assess his status as a nurse, his sepsis might not have been caught as early as it was.

This week, the CDC has raised the alert about Sepsis and how important it is for everybody, not just medical people, to know the symptoms.

http://www.cdc.gov/vitalsigns/sepsis/index.html

	Graphic: Healthcare providers are key to preventing infections and illnesses that can lead to sepsis.

 

Everyone should learn the signs of sepsis and be able to detect it in themselves or a loved on.  Sepsis progresses rapidly and it can affect major organs and/or cause death.  Rapid response to Sepsis is the only way to stop it.   It is indeed a race against time.

 

Hatred and Killing and Guns

June 13th, 2016 3 comments

 

I see hatred every day, all around me.  I see it on TV first thing in the morning when Donald Trump gets more face time to stick his chest out and crow, prance, hate and show off.  He really does think he is the cock of the walk. Poor man,  he is so sick.  I see it in the newspaper in comments about articles, any kind of articles, even articles about a tragic death.    People say such hateful and awful things to each other.  I see it on the streets of my small city.  It is in grocery stores and in traffic.  Hatred is bubbling over in this country.

 

Last night in a gay bar in Orlando, FL,  50..yes FIFTY people were murdered and 53 more were  injured, some critically,  by a man seething with hatred.  This morning a scared and frantic mother of one of the young men in that bar was on TV.  She told about her son’s partner being shot and critically injured, but she couldn’t find her son.  She was scared out of her mind.

 

Why is there so much hatred?  What ever happened to live and let live, and love thy neighbor?   Why do zealots and radicals get so worked up over things they have no control over, that is no concern of theirs.  I think part of the reason is the hateful climate of politics in this country.  Yes, I think people like Donald Trump and  Paul LePage and other loud obnoxious politicians have roiled and boiled up this kind of behavior from those on the edge of craziness. They are very skilled at stirring  that cauldron of hatred.   Whatever happened to honor, nobility and civility in political leadership?  These guys and others like them,  spew hatred , they stir up the masses of people like them and people who hate them and then they defend everybody’s rights to have a gun, any kind of gun.   It is a frightening recipe for disaster.  Their freedom of speech is a threat to peace loving people just living their lives.  Their vitriolic comments fuel hatred,  and they empower gun owning haters and work them into a frenzy to commit evil acts. Criticizing, name calling and stigmatizing “different” people is how these guys stay in their pulpits….they entertain each other and their ilk with that kind of smut.  There is no substance or meaning to their words, only hatred.  They boast about “saying it like it is”.

 

We need to change the public discourse in this country.  We need to bring back real Christian values rather than fake fabricated ones. We need to lift people up who demonstrate those values, not people who fake they are Christian, only to further their personal agenda.    The big mouths spewing this hatred claim to be Christians!   What a lie!   During my Catholic upbringing I learned that  Christ loved everyone and helped those in need regardless of who they were!  He gave, he didn’t take.  He loved, he didn’t hate.  He healed, he didn’t harm.   I truly believe that his teachings should guide us, even those of us who are not religious or who may follow a different religion or spiritual belief.  Peace and love, not hatred and killing.

 

I am sick to death of the violence, hatred and unnecessary loss of life within our own US borders.  We need to get guns out of the hands of haters, and restrict gun sales. No more automatic weapons on our streets.  Then we need to remove the  perpetrators of hatred and violence from positions of power.

 

I can’t get that mother and her frantic fear out of my mind.  She probably fears the worst, with good reason.  I am the mother of a gay son and a straight son and I love them equally. I would defend both of them my own life, and I can’t imagine the pain that mother is bearing.   This is a very sad morning for this country.  This newest mass murder is another big scar on our country’s image and our ability to move forward.

Hatred must be stopped rather than cultivated in the US.

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Puppies are the best medicine, no prescription needed

May 24th, 2016 No comments
Louie, Full time entertainment, PRN  therapy dog

Louie, Full time entertainment, PRN therapy dog

Louie is our 13  year old dog.  We love him unconditionally.  Mike, my husband is dedicated to him, even more than he is to me!   He walks him faithfully every single day, no matter the weather.  Louie knows this, and he communicates his needs to Mike with gestures and sounds.  It is so funny to listen to him when he is “telling” Mike what to do.

A new family member is coming today.  My son Brian is getting a puppy.  He is a tiny black hairy creature, a baby French Bulldog.   Oh my God, my heart is melting and I haven’t even met Rocky.  This photo was taken not long after Brian got him.  What is it about puppies?

rockyprofileI have read about the effect of dogs and puppies on humans.  Elderly nursing home patients who don’t respond to anything else will respond to dogs and cats.  Some dogs are trained to detect seizures,  guide the blind or do simple tasks for the handicapped.  Babies smile and grab for dogs when they see them.  Me?  I just melt.  I can’t understand people who don’t like dogs.  What the heck is wrong with them.

Dogs are a comfort to us fragile humans.  They don’t ask for much…just shelter, food, exercise and love.  They  stay by our sides when we are sick or sad, and they  entertain us tirelessly.  They are the most faithful of friends, no matter what.  Even dogs that are abused stay faithful to their owners.  That makes me sad.  They should just bite the abusive owners…it would be totally justified.

Louie has sat with me while I have healed from sickness or surgery.  He warms my lap in the nicest way.  He is getting very old, and moves slowly, a with a hitch in his stride.  Arthritis and congenital defects in his elbows make it harder for him to walk far or to play for very long. He grunts and groans when we pick him up, from pain we suppose.  When I think of losing him it breaks my heart.  So, I hold him close, let him sit on me in the car even if I am wearing black, talk to him, and value every minute he is with us.  At 13 years of age, the old fella doesn’t have too much time left.

Dogs will always be in my life, one way or the other.  Housebreaking a puppy isn’t high on my list of priorities right now, but we will certainly welcome Rocky, the new little grand dog, and he will be our guest often.  Mike will want to walk him too, and we will try to do that regularly.  He will be a contrast to Louie in every way….color, energy level, communicating etc.

You can’t beat the love of a faithful dog..no you can’t!

PS…I already taught Rocky Sit/Down/Stay!

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7 years of Patient Safety Advocacy

May 21st, 2016 2 comments

kathyatcdc

What’s different now?  How are we doing?  Have we made progress in Patient Safety?

Its hard to tell. I don’t have sophisticated ways to measure the results of my work.  There is a difference though.  I am received differently than I was 7 years ago.   It will actually be 8 years ago this fall that Dad became infected with MRSA while rehabilitating in his small community hospital.

When I busted onto the scene in 2009 in Augusta Maine to fight for MRSA screening and isolation of patients who are being admitted to Maine Hospitals, I had to get my feet under me.  I didn’t know how politickin’ was done.  I didn’t “know” people.  I was an obscure grandmother, wife, mother, daughter.  I hadn’t worked in nursing for quite a while.  What I did know is that what happened to my father should never, ever happen to anyone.  With that knowledge, and powerful passion fueled by grief, I forged my way.

There was sympathy, and understanding, but there was inconceivable push back.  The greatest push back came from the Maine Hospital Association, their members and even some healthcare professional groups!  That was astounding to me.  I thought we would all be on the same side…the side of the patients.  We all want safe care, don’t we?  Well they want it, but they don’t want it to COST anything.  Cheap or free MRSA prevention would be good for them.  They also wanted it without looking bad for causing infections.   This means that my work could go on  if I didn’t tarnish the polished image of hospitals.  REALLY?

The push back did not deter me. I forged ahead and I still do.

I just got back from the CDC in Atlanta, GA.  This was my third trip.  My first trip in 2010 blew me away.  I was a bit intimidated, because the CDC wrote the bible of infection prevention and that was part of my job as an employee health nurse.  In fact, I was pretty nervous when I called there for expert advice, as a working nurse.  To be a guest there, as part of a larger group of healthcare consumers/patients was a little overwhelming.  I spoke out, but not with a lot of conviction or confidence.  The second time was better.  THIS time…watch out!   I had no qualms about speaking up, and often.  I BELONG there.  My colleagues, each and every one of them affected by healthcare harm related to infections, or medications, were all equally confident, informed and eloquent in their comments, questions and ideas.

The CDC staff that organized our meeting knew exactly what they were doing.  We met on the premise that this would be a discussion.  None of us were rushed through our introductions or our stories.  We each had equal opportunities to offer questions, solutions, and ideas.  Top leadership, including Dr Thomas Frieden, Director of the CDC,  introduced themselves, and briefly talked about their work and programs, and then we talked.  We had a real exchange.

Fresh new ideas around Sepsis, HAI prevention and treatment, Multi drug resistant organisms, Antibiotic use and stewardship, Death Records reform and so many more very important issues in Patient Safety were covered.  I learned so much, but I also brought the nursing perspective.  Programs, mandates, policies and recommendations are essential, but without proper bedside staffing levels in all healthcare settings, they will not work.   We will not get to ZERO infections without adequate  nurse staffing.

There were no commitments made during our meeting, and I do understand that it is not that simple.  But, tons of notes were taken during our conversations.  We also populated large idea boards on the wall.  I look forward to the compilation of all of this material.

Before the meetings, 4 other amazing colleagues were photographed and videotaped for the CDCs blog and other use.  While we waited our turns, a random CDC employee came by asking what we were doing there.  When we told him he said  “oh ya, I had a surgical infection and sepsis too!”  then he shared his story.  This happens everywhere we are.  Everybody has a tragic infection story about themselves, a loved one or a good friend.  We want those stories to go away…we don’t want everyone to have an infection story.

I am grateful for the opportunity to visit the CDC and I look forward to working with them more in the future.

 

 

 

 

Medical Error is the THIRD Leading Cause of Death.

May 8th, 2016 No comments

http://www.pressherald.com/2016/05/07/mainers-call-for-more-data-to-help-prevent-medical-errors/portlandpressarticle

This morning the Portland Press Herald had this article on the front page.  The  high numbers of vulnerable sick and injured patients who die not because of their illness, but because of preventable harm is just not acceptable.  It makes me crazy that  1/4 to 1/2 million people die unnecessarily every year in the US.   Dad died in 2009, after his hospital infected him with MRSA, but he was not counted in any of the voluminous data that I read.   He suffered a great deal and died within several weeks of the infection.

I have worked, as a volunteer, in Maine and nationally since Dad’s death, to help stop this epidemic of needless deaths.  Just last week, on May 4, there was a Patient Safety conference in Augusta Maine sponsored by the Maine Sentinel events team.  I asked several times for the agenda and details for this event, so I could register and attend.  None were sent.  Then I was told that there was such an overwhelming response to this event that it was “sold out”. I could only attend if there was a cancellation.  There were no cancellations.   I was very disappointed because the patient’s voice is essential to any discussions about them or about Patient Safety.  So I asked again for an agenda so I could advise the organizers about where it would be good for them to include the patient’s voice.  None was received.   Since I got nowhere with this, I wrote to the Commissioner of the Department of Health and Human Resources of Maine, and expressed my disappointment that the State would have such a conference without inclusion of the patient’s voice.  I would be very surprised, but pleased to hear back from our Commissioner.

Coincidentally, on May 4, the very day that I was excluded from a Maine Patient Safety conference that was held about an hour away from my home, a reporter from the Portland Press Herald called me because of a recent report from Dr Marty Makary, of Johns Hopkins, that healthcare harm is the third leading cause of death.  This was not news to me, but I was certainly happy to have the opportunity to talk with this bright reporter.  He also sent a photographer to my home and this became a front page article on May 7, today.  I am very grateful to this reporter and his newspaper for recognizing the importance of awareness on this issue.

We all know the old saying “there is more than one way to skin a cat”.   Well apparently, there is more than one way to get the  word out on Medical errors and preventable healthcare harm. I missed the opportunity to bring the patient’s voice to the Patient Safety conference in Augusta, but my voice was shared with thousands of others on the front page of the Portland Press Herald this morning.  Although this is an unpleasant and for some an unpopular subject, all of us, as a society must talk about this openly and often,  and demand better.

 

Right Care Alliance

April 19th, 2016 No comments

lowninstituteApril 18, 2016

 

I’m sitting in a big hotel in Chicago waiting for my ride on the Go Bus, to O’Hare and then I’ll wait to board my flight home to Bangor, ME.  Flying is hard for me, a 67 year old large woman, because it aggravates my arthritis and edema. When I get home I will be lame and exhausted, and I will need ibuprofen for a few days.

 

So, why am I here?  You may have guessed that I’m not particularly fond of flying or of the fast life. City life doesn’t appeal to me.  People move much too fast to accomplish the same things we hicks do and they have to fight crowds of people and traffic to do it!  They are fascinating to watch, but I haven’t left this hotel since Thursday evening, which was 4 days ago.

 

I came for a health care conference, with the Lown Institute, and the Right Care Alliance.

 

For the past 3 days, I have listened to researchers, doctors, lawyers, patients, nurses, a housing expert, a clergyman, writers, reporters, Healthcare organization leaders, medical and nursing students, and more.  We heard about the many hurdles in healthcare, and in seeking healthcare, and we heard about solutions.  When we met in small and big groups, we talked about our hopes and aspirations for a better health care approach. I hate to use the word system because that is what we have and it ain’t working.

 

Our fearless leaders Dr Vikas Sanai and Shannon Brownlee got us all wound up.with rallying cries and with real crying with real tears.  For the love of humanity, we have to do this.  We need a revolution.

 

With so much overuse, underuse, misuse and abuse of healthcare, and so much waste, up to a Trillion dollars a year, how can we go on this way?  Simple answer, we can’t.

 

The reason for all of my work is Patient Safety and to bring the voice of patients to every meeting and organization that lets me in the door.  The RCA WANTS MY VOICE, but better yet, they want everybody’s voice.  The more the merrier.  The more the better our chances are for a revolution.

 

I can come up with so many examples of overuse, unnecessary testing, too much medicine prescribed, too many office visits, and stupid routine things done, and all just in my family. I also think about the cost to us. I think of my son who is struggles with medical debt for a necessary knee surgery about 10 years ago while he was uninsured.  I think of my mother who right up until this year, at age of 90, was getting annual mammograms.  She was also getting yearly pap smears, cholesterol tests and ultrasounds on her carotid arteries that she swore she would never get surgery for, and invasive cardiac testing for a faulty valve that she has said she would not get fixed. Medicare will pay for these useless tests every year but not one penny toward her assisted living care for dementia.   Then there is the underuse…that I experienced myself last year when I had a large kidney stone that would not pass on it’s own.  When I needed an X-ray or ultrasound and blood work, I didn’t get it!  It caused temporary harm to my kidney, and unnecessary suffering, and yes, more doctor visits, delays and cost for care that I urgently needed.

 

The RCA movement aspires to Just Right Care. We want care that is right for the individual, at their stage of life, and for their individual needs, in the right place, at the right time. We want a democratic healthcare approach.   All of us wants and needs that because too many tests and too many medicines and too many procedures can cause harm and cost a fortune.  And all of those tests, procedures, and diagnostics are decided FOR patients by our insurance companies, and our government…. by everybody but us!   We also want a system that is accessible to everyone, from birth to death, and that does not put us at risk for bankruptcy.  A single healthcare encounter has the potential to financially ruin anyone except the very wealthy.

 

So, this is a rallying call.  To all of my friends and family who agrees with what the RCA and I are trying to do, please visit our webpage, and read the mission, vision and pledge.  http://rightcarealliance.org/  Take a look at the different councils and who is on them.  Consider joining a council and please sign the pledge.  Then follow and/or support the work.

 

We, the Right Care Alliance, will raise our voices, and cause a ruckus.  We will transform healthcare into something that is safe, high quality, accessible and affordable for all.