Just when you think it is smooth sailing, the storm appears very suddenly and it takes all your being to navigate.  Before I begin this blog, I want to make it clear that what happened is no way the fault of the facility where Bob resides, The Piper.  Also, I want to say that I have never before met a Nurse Practitioner, that I have seen professionally, or as a friend, that I didn't like.  They are generally so competent and well prepared in their profession.  Some doctors rely on their more current knowledge!
It was a gorgeous day, and I worked happily in the yard for 5 hours, not even coming in to get something to drink.  When I came in, I was washing my hands and my mobile phone rang (I didn't have it out in the yard with me).  All I can say is, GOD WAS WITH ME, and made me go in the house so I could answer that phone.  It was the Nurse Practitioner that is employed by the doctor that serves The Piper. She told me that Bob had had a stroke and needed to go to the hospital immediately.  I told her "wait a minute" and told her that this was the third time this very thing had happened, and it happens when Bob is absolutely worn out, and he just falls into a very deep sleep, and can't be aroused.  She said, no he has had a stroke and we need to go to the hospital NOW.  I asked what would be gained by going to the hospital, and she said it was too late in the window to do tPA, (the clot busting drug) but at the very least they would need to give him fluids and probably do a brain scan.  I told her no, that I didn't want any extraordinary measures done, to please not to do anything till I got there, and I was on my way.  She then said, "Because you are refusing care for him, you realize that you are saying it is OK to let him die.  Is that what you are saying?"  I thought to myself that it was a rather blunt way of putting it, but to her I said "Yes, that is what I am saying."
As I pulled into The Piper parking lot my phone rang again and it was her, asking if I was there yet.  I told her I was just pulling in, and she said "I will meet you at the door."  Of course that made me think he had already died.  But when I ran in, she introduced herself, and instead of comforting me, started babbling on.  I took a deep breath, assured myself that he wasn't indeed dead, and turned around and headed for his room with her following.  When we got to the room, I looked at Bob and he was lying there, sleeping peacefully, but he didn't rouse when I shook his shoulder and called his name (no sternal rub....).  She then informed me that he had a normal temperature that morning, but that it had spiked to 101 degrees and that she suspected meningitis.  I asked her why she suspected that.  She said because when she was called to assess Bob, he was slumped over.  She had tried to raise his head to assess his pupils, and he had groaned like his neck was sore.  I told her "Oh, please!  Bob always wakes up from a nap with a krink in his neck, and has for years."  She said no, she was sure he had meningitis, and she was going to send him to the hospital for a spinal tap as she had to protect the other population of The Piper.  I told her she wasn't going to do any such thing.  She then told me to call the family as it wasn't going to be long.  I told her our daughter and family that live 4 hours away had gone camping and weren't available by wifi or cell phone service.  She then said, "Well then.  We need to call hospice for you so you will have some support."  I told her to please call Crossroads or Ascend Hospice.  She left, and I headed for the car to get the bag I had packed with a toothbrush, a snack, and a book.  When I came back in, she was in the common area.  I asked if she had gotten ahold of hospice, as I was going to put that on hold, and she said yes, she had called Encompass.  I asked why she had called Encompass when I had told her the two I wanted, and she said, "Because they can get here faster."  I told her to cancel that.  I went back to the room, again touched Bob, and he responded. So I put a straw to his lips to give him a drink.  He drank 2 glasses down without stopping.  I went out and told her that he was responding and drinking water like he couldn't get enough of it.  She asked "Did he choke?"  I told her that he did not.  I went back to the room and was met by the nurse from The Piper and the director of nurses from The Piper.  I told them what had happened, and asked what would have been done had they not been able to get ahold of me.  They said that they would have taken him to the hospital per her direction.  And I am sure it would have been Providence Hospital as it is closer, and not to Shawnee Mission Health where all his records are, and where I had written all over the chart that SM was where he was to go.  Again I told them that God was with me, as taking him to the hospital could have been disastrous.  Bob drank 4 more 12 oz glasses of water and was responding well, so I went home late that evening after telling both nurses he was not to go to ANY hospital, and please let him sleep.   Of course I couldn't sleep, so I got up early and took a shower, and was at The Piper before 0730.  Here was Bob, sitting at the breakfast table, happily eating breakfast.
After this incident, I spoke with our wonderful family physician and asked if she could take over Bob's care at The Piper.  She said certainly, but she would like to think about hospice care instead, and asked if she could send in a consult to Crossroads Hospice.  I said of course, but would he qualify?  She said he would qualify on at least 2 counts--loss of mobility and loss of weight.  So Crossroads came to evaluate Bob on Tuesday.  He has gone from using a cane in December, to a walker in April, to a wheelchair in May.  His weight has gone from 183 in the doctor's office in September (too high) to about 175 in December (fighting weight) to 163 now (too low).  So Crossroads accepted him immediately.  I am so happy.  He got a new bed, with a foam bolster so he can't get out of bed and fall, a new snazzy wheelchair, all incontinent supplies, and all for free.  They will take over his entire physical (including bathing) care, and medical care.  It couldn't be better to give me peace of mind while I am in Israel and Jordan in June.  I still pay for him to stay at The Piper, and they also help care for him.  I met with the hospice nurse yesterday, with the chaplain and social worker today, and we have a family meeting with Piper staff tomorrow to make sure everyone is one the same page.  So I hope the boat is upright again!  I am sorry this is so long, but I don't want anyone to experience what I went through.  It came out of the blue so quickly I couldn't believe it was happening.
In closing--May the Lord walk beside you to comfort you.
                  May the Lord walk above you to watch over you.
                  May the Lord walk beside you to keep you safe.
                  May the Lord walk before you to show you the way.

I certainly believe He was with me in these last 2 weeks as the ship was floundering!
Betty

P.S.  Because I can write better than I can talk, and because it was therapeutic for me, I wrote an email to the NP.  I asked her to please listen to the family when they tell you something, as they know them much better than you do, and know their idiosyncrasies. I told her not everyone fit into a mold, and Bob is one of them.  I asked her to please think before she jumped to conclusions.  I asked her to please consider the clients she was serving--she was serving dementia patients, not ED patients.  I asked her to please learn from this experience (she has only been employed 2 weeks but I don't know if she is a new grad. She is not young).  On a side note, I was told by a Piper staff member that the very same thing happened to someone else a few days later and her response was "what are the family's wishes?"  Yay!