Sunday, November 13, 2016

Going home...

So the time has come to finally say good-bye. Since the last post, so many things have transpired. First of all, I reported the CT results wrong. Instead of no growth of any mets, the original 6.3 mm growth actually became 5.8 CM, I mistakenly read it wrong, I thought it was still mm. Which means the 1/2 growth grew into 2.5 inches from May to September on the right lobe of the liver. There were new ones on the left side of the liver also, 3 about the same size as the original one in May. So that was not good news. My Dad continued to be strong through the months of September and October, working outside, planting his grass, going out and around shopping. My family, went to North Carolina, to work on our relationships in a family intensive. It was the perfect thing to do because of all the travelling and separation during this year.

 Before I left in early October, Dad went back to hospice. We took the advice from the palliative care doctors office as I wanted to change from the last hospice. I wasn't satisfied with the care he had been given prior to revoking hospice to get his CT scan. My Dad's pain had not been well controlled and they wanted to give him methadone instead of giving him the sublingual dilaudid which was working so well as he had run out before their allowed time. I had no access to the doctor and the nurse was rude and condescending to me, at one point almost hanging up on me as I suggested alternatives for meds which they were not willing to provide. So I "interviewed" the new hospice suggested and they assured me that they would not be that way, they only had 75 patients vs 300 which this hospice had. I also found out that there are 300 hospices in the Dallas/Fort Worth area. I found out that hospice is a money making venture and that all hospices are NOT the same. So without any researh I took the advice the of the palliative care doc and bought the sales reps or "patient liason" speech, that they only had 75 patients, they were a Physician directed hospice vs a business model, the doctor came out personally and met the patient before care started. The day I left the new RN case manager came, she right away checked out Dad's med list and said, oh, we do not give this, and the new doctor will have to assess what he really needs even though my Dad had just had an appointment with the palliative care doc the day before. I wrote a note right away to the patient liason, and he said he would forward it to who needed to see it. I had also wanted the ability to skype in with the doctor visit, however, the doctor was suspiciously unavailable the times I would be able to skype in, unlike how flexible the liason said he would be. What also annoyed me, was that the nurses line was restricted, so that you would be unable to call her back without going through the main line, which results in more waiting and miscommunication. You also were only able to talk to the doctor now in charge of my Dad's care once. In 2000, when my Mom was in hospice, you had contact with her oncologist and primary care doctor, and they could direct their care. Now, the hospices have a medical director who takes over your loved ones care, and only if the primary chooses to continue care provided the hospice allows it and not hand over the care to the medical director, which they do most of time, the hospice doctor is in charge of all the medications and the primary has no say whatsoever. It was a bitter pill when the nurse practitioner whom I had liked so much said, I am done, and the hospice doctor will take over the care. I felt betrayed. She had just fine tuned all his meds to make him feel the best, and the new physician directed hospice decided to change 95% of his meds. That is not good or the best for an 87 year old man to switch all his meds with one fell swoop. I immediately wrote a letter to the doctor which back all the latest research on the meds my Dad was on and my concern that he would switch the medications which were working so well for him. He did not like that one bit. I received a call from him that he had conferred with the primary and they decided that we were not a good fit and that we should start looking for new hospices. #1 he lied about the primary conference. His excuses for changing the meds were lame and profit driven. So the day before I was to leave for my 14 day family trip I was on the internet and phone trying to find the best care for my Dad. Here is a link that is very educational God forbid you would ever need to find a hospice.

 After speaking to 4 different hospices and looking for a hospice that would transition from palliative to hospice or had an open hospice plan, I finally decided on VNA of Texas. They were very understanding, I received multiple calls from multiple people and knew they were going into the pilot program of palliative to hospice in 2017. It has turned out to be a good decision after much prayer and discussion with my husband.

 Last Saturday, Nov 5th, my Dad went to the eye doctor with my sister. He wanted some new glasses before he went to the Philippines. He was feisty as ever. On Tuesday, the hospice notice visited and found that my Dad's condition had declined markedly since her last visit the week, he was very weak. That day, my Dad insisted that my sister take him to Costco to pick out his new glasses. While there he could barely walk and they ended up getting him into a wheelchair after picking out his glasses. After that he had some bouts of confusion and my sister left to come home. At about 5 pm he could no longer stand and his left side became "paralyzed." My brother called and he sounded scared as he said he was wondering what was happening to him. I was hearing this as I was preparing to come and board my plane. It hurt my heart so. The same plane that my sister came home on was the one I was to take to Dallas. It had a maintenance issue and the flight was eventually cancelled. But God is always on the move taking care of those He loves and depend on him for help. Our good friend, Scott, is a Delta pilot and was able to get us nonrev tickets out the next morning. We were even the only ones listed on the flight. My stepmom had a rough night with my Dad but settled him down with a sleeping pill. He was worried about me coming. Thankfully, he had his mind occupied by the election results. At this point I was having a rough time keeping it together. I called the hospice line and told them about his condition. I found out that in order to get him to bed that we would have to call the fire department for lift assistance. I said we would just keep him on the couch until I got there. They were going to send a nurse in the morning as he was settled down. When I arrived the nurse was there. She was ordering him a hospital bed to come that day. We decided he didn't have a stroke but instead had tumor compression on a nerve causing the paralysis. I was able to greet my Dad as he was coherent and told him Trump had won the election. He gave me a big smile, his man had won. I was happy he heard this, as he had been talking about the election since it started. He wanted to come to sit at the table with us for lunch but we convinced him to stay in the couch. Dad was pretty out of it the rest of the day due to the sleeping pill. On Wednesday night he slept most of the night but had a few bouts of restlessness and pain for which I medicated him. That night I also called 911 to get the local fire dept to come and lift him from the couch to the bed .

 The next day, Thursday, the hospice nurse came to assess him. He was able to wake and identify her. She said to keep his pain under control, he was able to take his morning meds and a few bites of food. I gave him a dulcolax suppository so he could have a bowel movement as he hadn't since Monday. We ordered bed rails for the bed as I said he was grabbing things trying to get up and was confused at times, as well as a bedside commode. He the "big" one at 530, I was able to get him out of the bed and to the commode and back. For this I am so very thankful for my experience as a nurse. My stepmom and I kept saying how God had always provided, when things became hard medically for Dad I was always around. He was doing well and he even drank 1/2 bottle of boost. At 7 pm, my Dad started to sundown. The night became extremely difficult and emotional as I watched my Dad enter what they call "terminal restlessness." It is when the brain is trying to keep one leg in this world and transition to one leg in the next. It is marked by confusion, moments of clarity, and combativeness. I wish I would have called for help earlier but I tried to medicate and sedate him with what I had in the "hospice box." I finally gave up and called for help at 3 am. I was able to give him enough meds to finally settle him down at 5 am, and I called the nurse and told her not to come. He had been spitting out the meds and at one point grabbed the syringe and threw it out. My stepmom and I were emotionally distraught. At 7 am the cycle started again and I called again but I cajoled him to take some ativan and his dilaudid, at this point it is sublingual. The night before we had to call the fire department again to transfer him to the couch and back as they had to put the bedrails on the bed. In order to do this you call 911 and call lift assist. The fire dept is blocks away from his house and they arrived incredibly fast and were incredibly compassionate. Again the Lord was in charge, the bed rails came just at the right time to keep my Dad from harming himself.

 When the nurse came she had already initiated "crisis care." It is when they send a nurse 24/7 to help assist my Dad in the dying process. This was Friday, Nov 18th at 10 am. She said it usually only days at this point and that I should tell my family. My Dad is going home. He has fought the good fight, and has been incredibly courageous through out. My heart is grieving. My thoughts are scatterred. My youngest brother and sister arrived last night, my oldest brother in about an hour and John will be here at midnight. His only living sibling out of his 10 siblings is coming in around 5 pm tonight. We would so appreciate your prayer, my kids are rightfully fearful at this time not knowing what is quite happening. The Lord is my strength and my song, He is holding our family right now.

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