Thank you all for your replies.
Yes, my father is in hospice, and it was the hospice nurse who came to the house to evaluate him last night.
Here is some history on my father. In December 2013, he was fine, just slowing down. In February he began walking with a shuffle and his left shoulder was dropped. By the end of February he was walking with the support of a normal cane. By Mid March he had advanced to a 4-legged cane and his speech was beginning to be effected. By the beginning of April he was using a walker full-time, and it was April 1st that we received confirmation that it was ALS. On April 8, we had our first visit to the ALS Clinic at the University of Chicago. His pulmonary test was awful, his FVC 42/38 and his MEP/MIP were 20/-13, they suggested we call in Hospice right away, and ordered him 3 breathing assistance machines. 1. BiPap, 2. Cough Assist 3. Something to help him take deep breaths, I don't remember what it's called. After two separate training on the machine, and having problems being able to perform the cough assist and the third machine, dad made the decision that he was only going to use his BiPap. - He would use it in the morning for a couple of hours a day.
At the end of April he underwent the procedure to have his feeding tube put in. He could still swallow most food, but had already given up most meat at the time the tube was put in. Of course the swallow test showed aspiration with fluids and he was instructed to thicken his fluids and change his eating/drinking habits to help avoid the aspiration.
In May, there was not a whole lot of change, but he signed up for Hospice at the end of the month. He was still pretty mobile and using the bathroom. Then June came. One week, he was able stand and get to the bathroom on his own and then the next he needed full assistance. Dad could no longer go to the bathroom or get out of the house on his own by the middle of June. Shortly after the change of needing full assistance, he started experiencing pain in his shoulders and legs, at which time we introduced morphine. Also, Dad was losing the ability to even bear his own weight to even stand for a short period of time.
June 24, he woke up needing to use the bathroom and the burning started. Shortly after he started to complain of pain in the stomach, and we had the nurse come right out. She diagnosed him with a UTI and started antibiotics. This is when she put his catheter in. Later that week, his normal nurse came to visit and we discussed the different colors of his urine throughout that week. Sometimes it was amber, sometimes pink, and a little red. She said that was pretty normal, with the recently new catheter.
At the end of the week, Dad began sleeping more, a LOT. He was sleeping for 14-15 hours during the night. He would wake up around 5 AM, and ask for the BiPap and go back to sleep until around 11:00. He would be awake for a few hours, eat a little food, and then take another nap. Still not using BiPap for more than 4-6 hours during the morning hours.
On Monday this week, his nurse made another visit to the house, and analyzed his urine and said that it was normal colored. At that point it was dark amber. We had save some of the "red" stuff to show her and she said that he had probably passed a blood clot from moving around and we should not worry. We also discussed his new sleep pattern, and she said that could be because his body is fighting the infection and requiring sleep.
Also, for the last 2 weeks, when he tries to stand to shift from one chair to another, his feet turn purple instantly. During the night, he is experiencing a lot of pain in his legs and toes. In fact his big toe is all swollen and red.
And then yesterday, after checking on his urine, we had the nurse back to the house - hence the original posted question. He has absolutely no energy.
Unless he asks, we will not take him to the emergency room. His desire is to be home. I would consider him to be in the final stages, and the nurses have not committed to a "time frame". I understand that all PALS are different, and no one has a crystal ball.
I apologize that I have not posted before this, but as you can see, Dad has progressed rapidly, and I find myself searching up specific things going on.
Needless to say, with the current situation, I'm afraid.
