McCleary MRSA Prevention

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

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.

Whenever I whip cream or potatoes, I think of Dad.  He was a man who loved to eat!  Potatoes and whipped cream were two favorites.  I stashed a lot of leftover potatoes after our Thanksgiving dinner and thought, if Dad was here, these would not be going back into the fridge.  Family and food were my father’s favorite two things.  When I put leftover whipped potatoes  into the fridge, I asked my mother “Where is Dad when we need him?”

Dad’s suffering after he was infected at his small town hospital was long and difficult.  But, the most difficult thing for my family to witness was his complete loss of  appetite.  For his entire life, he was a hearty eater and loved his food, in  large portions.  He never had a problem with cholesterol, and that was a miracle.  I love to eat too, but I could never imagine packing away meals like he could.  It took him as long to prepare his mound of potatoes as it took for the rest of the family to finish eating.   We all use to laugh about that.  Potatoes, gravy, meat, vegetables….oh, didn’t he love a big meal.  He loved his deserts too, but he also ate fruit and veggies.  I guess there just was not a food he didn’t love.

He wasn’t selfish about his food.  He grew up during the depression and in  poverty.  Rare old photos of him reveal a  thin child dressed in ragged clothing.  Meals were sparse and often meatless.  So, as an adult, he not only relished food, he absolutely loved sharing food.  When any of us said we had enough to eat he would say “Oh come on, have some more!”  This generosity made him feel good I think, and proud that he could provide more then enough food for his family, unlike his parents for him and his siblings.  They squabbled over food. 

I remember when Dad was in the nursing home during his last few weeks of life. My mother and my family were very concerned about his loss of appetite and a lot of weight.  He shared his dreams about food and said he would love some Hersey’s chocolate.  We brought it to him, but he could not eat it.  He gagged on it.  One day he said he thought he could eat a tuna sandwich with onions.  I didn’t want to bother the Nursing Home kitchen with special requests, so I went a got the stuff and made him that sandwich.  Same thing..unable to eat it.  When he couldn’t eat a Maine lobster and butter (his absolute favorite!), we knew the outlook was very bad for Dad.  This  starvation went on for about 3 months.

Aside from the fact that Dad became totally dependant on others for his daily activities and was rendered a bedbound patient overnight because of preventable infection,  this alarming loss of appetite and weight was the absolute hardest thing to watch.  My poor Dad. 

Who knows how long Dad would have lived if he hadn’t been infected with MRSA?  He managed fairly well at home, with my mothers help.  She cooked healthy balanced meals for them every day.  He still drove his car and did a few errands.  They both had visited in my home, 70 miles from their home,  just a week before he fell and broke his ankle, and needed rehabilitation (during which he was infected).    He ate well, he was engaged with all of us and our lives and little kids  loved him and his sense of humor.  He got around. He didn’t move fast, but he did what he needed to do  without assistance. He was upright and mobile, just using his cane.

All of his independence was taken away by preventable infection.  That is just plain wrong and should not have happened.  Although Dad had ongoing health problems, he managed ok before MRSA.  Recently I found myself in a position to tell Dad’s story and describe his condition.   I was asked  if he was frail. I’m not sure how I answered but I have given that some thought.  NO, before MRSA he was not frail.  My perception of a frail person  is someone who is bent over, constantly wobbly on the feet, and always needing assistance to do about anything.   It  took his trusted community hospital less than 2 weeks to drop Dad  dead in his tracks and land him in bed permanently with a multi drug resistant infection. He had clear uninfected lungs when he went into the hospital.  After he was infected, he never walked again.  He lost is appetite, his strength, his ability to stay at home and eventually his life.  It was his  trusted community Hospital and MRSA that turned him into a helpless frail man.  Before that he was living independently with my mother in their own home.  Although he had problems with occasional falls, generally he did ok.  His determination and my mothers dedication kept them both going.

We missed Dad at our Thanksgiving table again this year. 

 Dad, I hope you are upright and strong, surrounded by loving  family,  funny little kids and that they served whipped potatoes and chocolate cream pie where you are now.

Yesterday, I passed the nursing home where my father suffered for 9 weeks with MRSA pneumonia.  He died shortly after the holidays on January 9, 2009.  His passing was very sad but welcome after we had watched him gradually and progressively fade away.  His body weight was just falling off, steadily and alarmingly,  and his physical and emotional strength was gone.

This year will be our first Christmas without him.  In the weeks preceding Christmas last year, my mother and I and my brothers kids all tried to think of things that might please him, while he was in his lonely isolation room in the Nursing Home. Most years anything with chocolate  or other sweet foods would totally satisfy him.  He had an appetite that wouldn’t end.  Last year,   my brothers kids put together a collage of photos for his bare walls.  He had a profound hearing loss from the necessary antibiotics, so he had difficulty hearing his TV.  I picked up a new digital TV for him that we thought could have an amplifier device added to it to help him hear.  It didn’t work, so we brought back his older one so he could hear it a little.  Then we got him one of those amplifier devices that you see on TV.  When Mum or us kids weren’t there, the TV was all he had….other than his caregivers that is.

I brought in a big fake poinsettia, and somebody brought by a little crocheted ornament to hang on his drawer handle.  All of these things made his room more festive, but he didn’t care.   He wanted to be with my mother at home.  He pleaded and he bargained with us all the time.  He would ask, “If I eat, would I be able to go home?”  “If I walk, would I be able to go home?”   The sad fact was that he couldn’t do either.  He couldn’t even sit up or turn over in bed on his own.   His illness and the powerful drugs he needed for it made him unable to do either, eat or walk.  At times, I think his caregivers thought he was being difficult…they thought he wouldn’t walk or eat.  I am convinced now, after reading stories of others who have suffered through deadly MRSA  that he just plain COULDN”T eat or walk.  The disease and the treatment took away his strength and his appetite. 

My mother and I considered taking him home.  For him to come home, we would need help.  My mother was 82 at that time.  I am 60.  I am big and strong, but I could not do all that my father needed done alone.  He had become a complete care bedbound patient when he became ill with MRSA.  He needed so much care and of course there was the problem of him still being colonized and coughing up huge amounts of sputum.  How do we go about caring for him at home without putting my elderly mother at risk for MRSA herself?  Hospice would help, for perhaps an hour or two a day.  The logistics of taking Dad home were overwhelming.  He never came home and it broke his heart and ours.

So, although all of us did what we could to cheer Dad up on the holidays last year, the only thing that worked was our visits and especially my mothers constant presence at his side.  He needed her more than anything else, including medicine.  The medicines never worked.

I drove by his nursing home yesterday.  The Christmas lights are there and the front of the building is festive, but none of that hides the suffering going on inside.  My selfish comment to my husband was…”I am so glad that Mum and I are not still going in there all the time”.  I miss Dad more than anyone can imagine, but I do not miss seeing him suffer and I don’t miss the frustration of not being able to make him healthier or happier. 

These intimate details of the suffering and frustrations of dying MRSA patients and their families are the facts of life and death with MRSA.  It is impossible to know the pain of the disease unless you have had it yourself or you have helped care for someone you love only to see them  suffer and die from it.  These are the details that we must get across to law makers, the CDC, healthcare providers and others who can make a difference in MRSA prevention.

The following press release was issued from Kathleen Sebelius, Secretary of DHHS,  today.  I wrote to Secretary Sebelius about 6 weeks ago to tell her about my father and his nightmare with MRSA.  I took great care to include truthful and painful detail .She addressed my letter to her in this press release today.  In this release, the Woman from Maine is me and the 83 year old man who died in January from Hospital Acquired MRSA was my Dad.  Secretary Sebelius is listening.  Anyone who has a similar horrible medical experience in their lives needs to let Secretary Sebelius know.  She does read these stories from everyday citizens and responds to them. The part about my father is in the last third of this press release.

http://www.hhs.gov/news/press/2009pres/09/20090910c.html