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My friend is sharing her family's experience with a skilled nursing facility with the hope that she can help us all make better informed decisions about the medical care of our aged and/or infirmed loved ones. Most of us will have to face these kinds of decisions at some point in our lives. Please read and share if you're so inclined. scr.
This will be long. Many of you kindly followed my family through my dad's illness over the last two years. What I haven't yet shared here is how he died. I am bringing this up now only in the hope of warning others. My father fell and broke his ribs, and spent nine days in the hospital. He was then admitted into a skilled nursing and rehabilitation facility four days before he died. My father was in a neutropenic state - he had little or no immune system due to his ongoing leukemia treatments. Nonetheless, we were told he had a good chance of going home within a few weeks. The day before he died, he began rehab, and seemed to be doing fine. I spoke to him late that night, he was coherent and relaxed, if a bit confused because of all the meds he was on. He was looking forward to going home to his dogs and cats.
The next day, his condition changed drastically. My sister was with him all day; I was at work receiving her texts. My father spent his last day in a terrible state - completely distressed, wheezing and panting, his chest rattling, unable to eat or drink anything, and experiencing severe bouts of diarrhea all day long. He was incoherent and unable to communicate other than to tell us he was not in actual pain. He was also, unfortunately, aware enough to tell us when he was about to lose control of his bowels, which did not prevent accidents, and distressed him even further.
Throughout the day my sister repeatedly asked the nursing staff to put our father on an IV, to have an x-ray taken of his chest (we were afraid of pneumonia), to have a doctor examine him. Repeatedly, she was told, "Not yet, it's too soon." I spoke to a nurse over the phone, and was told the same thing. My sister was also led to believe that a doctor would be arriving to see my father. They finally admitted to me that no doctor would be in that day.
When I arrived at the hospital, I was shocked at his condition. It was clear the rehab facility was incapable of caring for him. I began asking for him to be taken to the ER. The nurses told me it was too soon, and that they needed an order from the doctor. Finally, a nurse told me she had received the order. Forty-five minutes later, the paramedics showed up (the nurse hadn't called 911, but instead a private ambulance company). The paramedics were incredulous at his condition, that he'd been allowed to remain that way all day, untreated. He was transported to the hospital, where we were told he was "critically dehydrated." Within the next two hours my father's body began to shut down, and we decided to end extraordinary measures. My father died on March 5, at 2:00 a.m. Cause of death: septic shock. He had suffered easily a good 18 hours that we know of.
It is still incomprehensible to us that any nurse of any level would not adhere to one of the most basic medical tenets: keeping a patient hydrated. It was clear to even us, as lay people, that a person with such severe diarrhea should be on fluids. Equally baffling to us is how a facility that the hospital referred us to, whose services were covered by Medicare, could be so untrained, and have no protocols in place, for a patient as sick as my father was – a person with no immune system. No one wore masks, some wore no gloves, there was not the rigorous, constant hand-washing we saw at the hospital or at his cancer treatment center. And why would they not want an obviously very sick person out of their hands? Why did they refuse us all day? While the nursing staff was kind, there was no urgency in anyone, only vagueness; no one seemed disturbed at my father's condition.
Our mistake was in not insisting. We also did not think of calling our own doctor - his oncologist. We did not know we could. We relied on the poorly trained staff and absent doctor to make vital decisions about our father's life. Our father was 85 and had a terminal illness. We certainly do not know if he would have lived another day, another week, month, or year, if it hadn't been for the treatment he did not receive at the rehab center. We will never know.
I am not filing a lawsuit. I am not, at this point, naming names. However, I have written in length and detail to the administrators at the facility, and have asked for answers, in writing. I have asked how they would prevent this from happening to others. We have received no response. I have had two phone calls from the nursing administrator, who informed me that they were "working on it", and that they planned on partnering with the oncology center to train nurses regarding neutropenic protocols, and had stopped accepting neutropenic patients until they were ready to effectively deal with them - an admission, to us, that something went very wrong. I am hoping all this actually comes to fruition, and that others will be spared. But the silence otherwise has been deafening, and I have stopped being patient. Hence, this note.
What I am doing with this note is letting you all know - and asking you to share this so that we can tell others who may be going through this, or will go through this, with their own families - what we learned. You must know that when you put a family member in a place such as where my father died, you must be ready to be hyper-vigilant. You must be prepared to spend all waking hours with them (and what of those who have no one? We ask ourselves this again and again). And you should know that facilities such as this one may really not be the right place for very sick people. You must be prepared to take your loved one out of that system without hesitation if you feel they are not getting the proper treatment. You should know that you can - and should - talk to your own doctor for advice. You should, above all, not be intimidated to speak your mind, to insist on the care your loved one needs.
We don't want anyone else to suffer like my father did on his last day, nor to suffer like my sister did all day, second-guessing herself as to what to do. We trusted them. We both have deep regrets, and we don't want anyone else to have them.
I will continue to pursue this facility to provide us with answers as to why they failed our father, and to seek to make them change their ways.
I'm asking all of you if you would please share this. We all know someone who is or will be taking care of a sick and/or elderly family member or friend. And of course, we understand that this was our unfortunate experience, and that there are probably many, many good facilities with adequately trained staff. But you won't know if yours is one (we read reviews before we brought our father there - they were mostly quite positive) until it may be too late. Please share this, if you would. For Mario. For all our Marios.
Thanking you in advance for your consideration,
Maria Carmen Ascarrunz
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