Angry? I don't think that comes close. Outgraged? Getting warmer.

Hospice doctor came to the house yesterday. He suspects my father won't live beyond 2 weeks. This doesn't make me angry or outraged. Yes, I'm incredibly sad. My father was assigned to what's called, continous care/crisis care under hospice's guidelines. This is when a patient is in a steady decline and is ordered to have 24 hours of licensed nursing (LVN) in the home, 12 hours shifts.

At 8:00 (a.m. and p.m.) one shift ends and the other, begins. By 8:15 p.m. when the nurse hadn't arrived, the nurse on duty called hospice to find out who was assigned to my father and when they would arrive. She was told to "hang on, someone would be there shortly." By 8:45, I had already placed two calls into hospice. After getting the run-a-round, I was finally told that they could not find anyone to fill the position and that they were "sorry", would continue to keep looking for a replacement and that they would call me within a half hour. Never got the call. The nurse here was reluctant to leave without any replacement. There were many issues going on that needed attention on my fathers behalf and she was stressed and uncomfortable to leave without anyone taking over her spot. She had to get home to her family and I finally convinced her to leave and that I'd work out what needed to be done. By 11:30, after numerous calls into the facility, a supervisor called me back and also apologized. I assured her that just like the several apologies I was given prior to hers, that being patronized at this time, was not what I needed and that they had better get someone out immediately. They could have sent a CNA out because I had already administered his meds for the evening and to address his physical caring and changing was what was most dire by then. The supervisor told me that if I had told them this earlier, they would have sent a CNA out and if I still wanted a CNA, they could have someone out by 1:00 a.m. Hey, whose running the show here? Why didn't they just send this person out to begin with? They never did answer me on this count. Alternatively, I was told that at any time, I could as well call them to have a runner/an r.n. show up to look in on him for an hour. I have been going on less than 4 hrs. sleep as it is and couldn't forsee going without any sleep which I would not have gotten with these options. As it is, I've been up since 2:30 trying to keep my father comfortable.

Hospice is a Medicare covered program, funded in full by Medicare. The time that hospice goes into full, undivided, guaranteed coverage is when a patient is in a steadfast decline, according to their words, not mine. When I was enrolling in their program, they approached me with their services as offering undivided and full attention to this part, in particular....the decline and what to expect and that at no given time would I ever be placed on "hold" when calling into their services, that I'd have round-the-clock staff at the home to tend to my father and that they would be available 24 hours a day. They didn't tell me though that all this was lip service and tough sh*t, if they tried to fulfill all this but weren't able to. Hey.......it's not their problem!

I've had 1 2/3 hrs. sleep. I'm thankful to hospice for this!

UPDATE:

I’ve been waiting for the 8:00 a.m. shift to arrive and so far (now 8:45), I received a call telling me they’re running late.

Criminally negligent is what this is.

This message has been edited. Last edited by: SandyF,

Ya know Kathleen, you're awesome too!!!!

Sandy, it's so awesome when something so irritating turns out to be a blessing in disguise. Being sleep deprived is an occupational hazard for those of us who care for our loved ones. I'm so happy you had such a special moment with your dad. Ya just never know. Even when he goes within again, rest asured he knows your nearby as he continues on this journey. You are awesome. Do you have a Hospice agency in your area that is a not-for-profit agency? That's what we used for my dad, and they were incredible! Big difference! Sending warm thoughts your way!
Kathleen

Mae, you are sooooooo right. This was just another casualty of being human. I overlooked something so much larger and greater and it wasn't until after I posted this, did I realize why this happened. It was supposed to happen. It was meant that nobody show up last night. My father was very distressed all night and I was up and by his side since 2:30 a.m. He was lucid, he had clarity. He took my hand and kissed it. I sat with him, gave him a bunch of kisses on his warm cheek, we talked. This is the first time that this has happened since he started to decline. And once again today, he's gone within again. I had all these hours with him early this morning to be with him while he was able to connect with me. I thank God for what happened with Hospice not showing up. I am so very thankful afterall.

Sandra, so sorry your experience with hospice has been less then positive.The first hopice I had was so bad I fired them on the spot.The one I have now is good.Not perfect but anything doing with humans is never as we would like and need.Many problems come to be because of the person doing the scheduleing.Then you have those , like all professions, who do not show up for work.Believe me I have had my say with this agency.You do have to keep calling to have your concerns addressed.I also have had to address a few of the aides who fill in when the usual aide is off.Like life in general, you will find good , bad and in between.It can be quite flustrating.They get compensated quite well , from medicare , for their services.The one thing many do not address is how much they do receive.I had one schedular who was so bad and lied through her teeth.I asked her if she wanted me to come show her how to do her job.Told me we do not want to go down that road.I said , oh yes we do.Not to make excuses but the schedular does have a difficult job.Many do not last long.But the aides know their schedule far enough in advance to have you covered.I do hope they have an aide her is the same one each day.That would serve you better.She would have her schedule and be able to inform you if she has a day off.As a whole I have been pleased, but the negative can make you want to pull your hair out.I now have a non profit organization which is better.
I have a fill in coming to day .She is excellent.She puts herself on the line in care facilites when she sees things not as they should be.When I fired the one agaency, I called the one I have now and they came the next day.Services began within 2 days.You can allow for one mistake but when it becomes daily, this needs to be addressed.I was told these agencies are rated the same as care facilities but have not found the site , if one exists.I am fortuante with my daily routine because they pay this organization for the services.If things become too bad I call the ones at the VA who are responsible for my husbands contract.The weekend is payed by medicare and believe me they receive big dollars.If I was given those funs I could hire someone for 3 momths to do all and more.

P.S. I took advantage of some time last evening to address the congressional representative in my district with what's happened and have appealed to Mr. Congressman for assistance. I sent this by email. Beyond this, for the sake of others who will someday be faced with hospice's services, I feel as though I have been put on a mission to put up a shout and expose by example here their inhumane treatment. This is only the beginning (for me) of what needs to be addressed