I called Hospice yesterday morning at 9:40. I had to leave a message. I called again at 10:20 and had to leave a message. About 1/2 hour later, a nurse called back and went through things with me, as far as what was happening with Mike and what I should be doing. I asked if she could send someone to check him out and she said that they didn't have any available nurses. She said she would call back "in a little while" to see how Mike was doing. Our aide gave Mike fluids after I had given him Tylenol- he had about 4 1/2 cups. Then he went into bed for his nap. About 1:20 after not hearing back from Hospice, I put another call in and left a message AGAIN. I asked that they please find a nurse to come out and evaluate Mike, his fever was back. I explained on my message that I was told I would have access to 24/7 care and I could not understand why they couldn't get someone to come and check Mike. About 2:00 I got a call back and they said they would send a nurse "sometime around 5:00". I had gone into work for a couple of hours and at 3:00 I got a call saying the Mike had labored breathing and that his nails were blue. I left work immediately and called hospice on the way. The nurse told me to increase his oxygen and give him more Tylenol. I asked if they could send someone sooner than 5 and she said she would "try". We had increased his oxygen and within a few minutes, Mike's nails were back to normal. I was home at 3:20. By 5:30 after not hearing from Hospice, I called to make sure someone was coming. The answering service took the message and about 10 mins. later I got a call back from the night supervisor. She said the "shift had just changed" and that someone would be there "shortly". About 10 minutes later I got a call from the nurse who said she was 40 minutes away.
The Hospice nurse got here about 6:45 p.m. I had already given Mike his nighttime medicine which makes him sleepy to begin with, PLUS he normally goes to bed around 7:00...He was out of it. Well this nurse came in, saw how "out of it" he was, noticed that he was drooling and took me aside and informed me that Mike was most likely "beginning the dying process". WHAT!!!!!! She didn't ask any background, she hardly checked his lungs (even after I told him he had a cough) and didn't even look at his infected toe. I guess she only deals with one thing, so that's what it was. Mike has drooled for years and he was tired because it was his bedtime and he just had his medication. I had to ask HER if we could take a urine sample to see if he had a UTI - she didn't suggest it. All of the reasons why the kids did not want me to put Mike on Hopsice, happened last night. A nurse who's never seen Mike, did a 10 minute evaluation and basically said, "this is it". I explained to her that we were told "it was the beginning of the end" in 2005 by his doctor and he was given Last Rites 1 1/2 years ago, but he is still here. She looked like we stumped her and she said, "I hope I'm wrong then". She said the drooling is s sign of his inability to swallow, but when I told her that he had drank 4 1/2 cups yesterday morning WITH A FEVER, she said, "that can sometimes happen, just like that". Well it doesn't happen "just like that" with Alzheimer's, when there's a sudden change, along with a fever, there's obviously something else wrong.
Right now it's 9:44 and I left 2 messages for Mike's regular nurse and the supervisor regarding the specimen pick up, and another check up today - I'm waiting to hear back.
I have no idea what is going on with Mike, but until I exhaust EVERY option and check him for everything, I will not give up on him. Had we listened to the professionals, Mike would not have been with us all these years.