Youtube videos

When Mike first moved in we had a pretty good agency here to care for him.  But here is the thing with agencies.... they do what we call a bait and switch or maybe even a false leader marketing strategy.  What that meant for us was... the pull their best nurses from other cases to open Mike up as a new case.  After Mike and I train these nurses to his particular needs, they take those same nurses off his service plan and start sending different nurses..... crappier nurses.... nurses who don't even bring anything with them but their lunches.  We interviewed literally hundreds of nurses and agencies over the two year period here at the house.  They would fall asleep, they would lie about medications, they would give improper care, they would lie to their supervisors anytime Mike complained about his care.  Mike would expect me to stay for their entire working shift and train them.  Which meant that even when he had a nurse, I couldn't ever be off duty.  We had cameras put up after they started lying to agencies claiming that they didn't want to come back because we were verbally abusive.  We had more than one nurse just leave him here in the middle of their shift.  It's technically called patient abandonment if no one accepts assignment for his care, which I told them I would not do until the end of their shift and they would leave anyway.  Their supervisors would tell them to.  That would mean we would have to find yet another agency to provide care and in the meantime I was left alone to do all of it.  So even though the State of Ohio awarded him 20 hours a day of skilled nursing care.... we couldn't find anyone to staff.  Eventually Mike just started letting anyone willing to be here stay here.  This always angered me.  He thought he was doing it for me and I didn't want him doing it for me because HE deserved better.  I filed complaints against these nurses and agencies and case workers.  It resulted in a case worker getting fired.  We also received letters notifying us that our claims had been found to be substantiated and due process way being done.  That sounds great doesn't it?  It usually only meant that they had to write a letter of restitution... not much more than that.  And filing all this stuff in addition to his daily care was exhausting.  I stopped filing.  We were trying to do right by other patients who needed services by complaining against the nurses who put his life at risk.  Eventually we just kept them out of our house. 
When an agency is hired, they send a nurse out to the house to do an assessment on the patient and write up a care plan that will be signed by the physician and that care plan is now the orders for the care that the nurses are required to perform.  If.... and this is a big if..... they wrote the care plan correctly, the nurses coming to the house didn't even look at it.  We insisted that we see the finalized care plan before the physician signed the document to make sure that it was correct.  For all the good it did, since the nurses either didn't show up or showed up and didn't know anything more than his name.  Theses nurses truly lacked very basic skills...... everything from toileting to sterile technique used for suctioning his airway. 
Mike and I decided to start making Youtube videos demonstrating his care.  Whoever was available in the house would hold my phone and record me performing and explaining tasks and skills.  We then would give the link to the agency and ask them to have the nurses assigned to his care watch the videos prior to their first shift in the hopes of me having to spend less time training them one on one.  They didn't watch them. 
Even thought he intended purpose was not fulfilled, there seems to now be another purpose becoming known. 
People have made comments on the videos complaining about what they think are errors in his care.  Most of them are rude.  A lot of them are by students who think they know something.  I've responded to all of them with an answer to fill in the gaps of their understanding.  Through these videos, a man had contacted me asking if he could speak with Mike.  I gave Mike his information, but Mike was too weak to do much typing so I continued our dialog.  This man was an attorney living in another State and his wife had been recently diagnosed.  We stayed in contact up until Mike died. 
And then this week, I get an email from a man who runs a program for emergency response personnel in Canada asking for my permission to use the videos as a case study and to provide him with some background information on Mike so that his life will seem more real to those reading and watching the videos.  I wrote him back with some caveats to the use of the videos.... first off to emphasize that they are not intended as medical advice, only as demonstrations of care provided as instructed by the patient being videotaped. 
His request got me thinking some though..... this whole time I think of Mike's life and influence on people and what he has meant to others with his classroom dedication at the Hill School and the Harvard Trust, but maybe I can be more proactive in continuing his fight for qualified care.  When Mike died, I hated hearing the words ALS.  I swore to myself that I will not do any fund raisers or walks or stay active in any support groups.  I wanted nothing more to do with this horrible blasted disease.  And now.... now I see that I do have something to contribute.  Not so much as a nurse, although I feel I am a damn good one.  But as someone who navigated a flawed system, who knew how to keep Mike calm in medical traumas, who stood my ground in advocating his care at every turn.  The video showing me suctioning his airway has been viewed over 24k times.  If I had ever thought that that many people would be seeing us, I would have put something on besides a housecoat and no makeup.  But that is what our life looked like.  Those videos are who we were.  If you watch the videos you will even see me mess up and claim it and keep going.  I don't want to be a teacher in a class setting, but maybe I can be a life coach for those who don't get much practical advice from case workers and direct care providers.  I finally have reached a point where I am not angry when I hear or see the words ALS but I have not reached the point where I don't shed a tear when Mike's name is added to that disease.  But maybe I don't have to be so strong to do good.    I think Mike would want these videos used to help others.  I am grateful that someone wants to learn more about caring for those with ALS.