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.
Follow You, Follow Me: A Young Family's Journey With Young-Onset Alzheimer's Disease
2 comments:
My mother had a horrible experience with Hospicie. My elderly brother did not want to be bothered with calls when she had to go to the hospital .. most often for urinary tract infections. When she got home, her nurse, would tell everyone her time was near, and that she knew the "process of death", because she had took care of her Dad while he died. In the next several weeks, I got calls from other siblings that did not want to bothered with visits sporadic visits to the hospital. One sister had a father in law with Parkinson's Disease that was in an hospital for the elderly. He was then moved to Hospice and had been in a coma. SHe noted that Hospice "helped so much". I couldn't help but notice part of the motivation of Hospice was to get more help, as the family did not have enough money for all of the inhome health care desired for 24 hour round the clock treatment. The next time mom got sick they took her to speciality hospital. I visited and stayed with her overnight. She was refusing pain medication at that time, and totally lucid. She enjoyed eating and watching television. My siblings told me a Hospice Representative would be coming the following the day. I spoke to my mom and she said she did not want Hospice to come into her home. She already had in home caregivers that she trusted. She was a shy person and preferred to stay with the people she had. The next day the Hospice workers came along with some sibling. They heard my mother tell them and my siblings flat out that she did not want Hospice. My brother that was the executor and power of attorney was not present. The loud and aggressive took the reins and demanded Hospice. It turned in to a screaming match between me and my brother. Hospice workers just talked over my mom right in front of her and said, "well call us and we will come at any time, we will explain it all to you.. blah blah." They did not care that the brother that wanted Hospice did not have the Power of Attorney. They did not care that my mother was objecting orally right in front of them. They just kept talking about their "program" and how it gives the family more help and talked right over my mom like she was not there. She did not have any dementia or alheimzers. She had Multiple sclerosis for years. Hospice kept "selling it hard". My mom went home without Hospice and within hours of coming home my aggressive brother called Hospice while my mother was asleep. She was given as many as eight pills at a time including several pain pills. She never woke up again. When I visited the next day and saw the Hospice workers in her home I was enraged. Mom was a sleep and could not speak for herself. Rose the nurse was happy as she said, "see I told you she was dying." My mother died on Christmas eve. Her wishes were not listened to and I believe Hospice in effect "killed her". The nurse told me my aggressive acting elder brother, the salesman only visited mom for under five minutes when he did visit prior to her death. That was too much for him. Hospice is too often a way for insurance companies to save money on hospital or long term care costs. Hospice can be a form of murder.
My mother had a horrible experience with Hospicie. My elderly brother did not want to be bothered with calls when she had to go to the hospital .. most often for urinary tract infections. When she got home, her nurse, would tell everyone her time was near, and that she knew the "process of death", because she had took care of her Dad while he died. In the next several weeks, I got calls from other siblings that did not want to bothered with visits sporadic visits to the hospital. One sister had a father in law with Parkinson's Disease that was in an hospital for the elderly. He was then moved to Hospice and had been in a coma. SHe noted that Hospice "helped so much". I couldn't help but notice part of the motivation of Hospice was to get more help, as the family did not have enough money for all of the inhome health care desired for 24 hour round the clock treatment. The next time mom got sick they took her to speciality hospital. I visited and stayed with her overnight. She was refusing pain medication at that time, and totally lucid. She enjoyed eating and watching television. My siblings told me a Hospice Representative would be coming the following the day. I spoke to my mom and she said she did not want Hospice to come into her home. She already had in home caregivers that she trusted. She was a shy person and preferred to stay with the people she had. The next day the Hospice workers came along with some sibling. They heard my mother tell them and my siblings flat out that she did not want Hospice. My brother that was the executor and power of attorney was not present. The loud and aggressive took the reins and demanded Hospice. It turned in to a screaming match between me and my brother. Hospice workers just talked over my mom right in front of her and said, "well call us and we will come at any time, we will explain it all to you.. blah blah." They did not care that the brother that wanted Hospice did not have the Power of Attorney. They did not care that my mother was objecting orally right in front of them. They just kept talking about their "program" and how it gives the family more help and talked right over my mom like she was not there. She did not have any dementia or alheimzers. She had Multiple sclerosis for years. Hospice kept "selling it hard". My mom went home without Hospice and within hours of coming home my aggressive brother called Hospice while my mother was asleep. She was given as many as eight pills at a time including several pain pills. She never woke up again. When I visited the next day and saw the Hospice workers in her home I was enraged. Mom was a sleep and could not speak for herself. Rose the nurse was happy as she said, "see I told you she was dying." My mother died on Christmas eve. Her wishes were not listened to and I believe Hospice in effect "killed her". The nurse told me my aggressive acting elder brother, the salesman only visited mom for under five minutes when he did visit prior to her death. That was too much for him. Hospice is too often a way for insurance companies to save money on hospital or long term care costs. Hospice can be a form of murder.
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