Goodbye Dad

Everyone deals with pain and loss differently. I post  about what happened last week to relieve my pain. My mom reads my posts and she is grieving. She doesn't want to be disturbed or bothered by anyone while she rattles around in a big empty house living with ghosts. So please respect her wishes of no calls. She has discovered e mail as I did, as a controlled outlet of emotion. The  friends that give you distant hugs across vast space.

 I post how Dad fasted Sunday night for a liver biopsy procedure on Monday a week ago. I grieve in my posts, spilling out my thoughts so I can let them go and have my friends and family console me in my pain . I showed up before the procedure started. I hadn't been invited, but I had seen my dad the Friday before and I also knew hospital time only too well. Mom might need a runner to do small errands or someone to just sit with her while we waited. I had been afraid that if they put him under for the procedure he might not wake up again. I wanted someone there with Mom. I was free and available. Mom had said she would be fine that she could handle it but this was different. She would not be fine.

Dad's arm was bothering him tremendously. He had been in pain for two months while the doctors tried to figure out what was wrong with his arm. Was it tendinitis or over exertions, in the end they decided it was nerve damage, symptomatic of the cancer. He was wheeled into the procedure room where he told the doctors he would not let them cut until the pain was gone from his arm. He did not want to hurt in two places. The doctors could not prescribe pain meds for his arm as they were not that kind of doctor. The procedure was canceled and arrangements were made to admit Dad into the ER for pain control.

We spent hours in the ER. Mom and Dad had arrived at the Hospital before 11:00am to prep for the 1:00pm surgery. He hadn't eaten or drunk anything since the night before.  At 2:00 we were in the ER. When booking procedure rooms, schedules are adhered to.  In the ER we waited in a small corner room hoping to get admitted to the hospital.

ERs are interesting places. There was a police guard on one of the rooms nearby. You could smell alcohol and hear someone yelling. Mom asked about the other room but of course the nurse just smiled and didn't say anything.

Our wish was that dad be admitted for pain management and while in the hospital all the tests that the doctor's wanted to do could be accomplished. It had been incredibly hard and exhausting for him to go back and forth from the house to make appointments. He hadn't been eating anything in a couple of weeks other than small meals of a few bites of crackers with some soft cheese or  egg salad. T would bring broth that seemed to stay down easily, but he would only take a few sips. Bland food always, as his stomach was being pressed into half it's natural size by a huge tumor on his liver. The x ray at the beginning of the month had been a death knell.

Anything put into Dad's stomach had good odds of coming back up. In a month, since a vomiting episode, while at the beach, had landed him in the ER at the coast, Dad had lost 20 pounds. They sent him home with antacid and told him he should see his doctor when he got home. He didn't call his doctor. Instead he needed another ER visit the next weekend to the ER close to home for vomiting, again. We all came to see him.  This ER took x rays showing the masses. They sent his records to his doctor and an appointment was scheduled for early that next week. The discharge nurse said she was putting urgent on his chart. The "C" word was mentioned, but tests were needed to confirm. Blood was drawn.

They did go to see the Doctor that week. The news was grim. Liver cancer, well established and spreading. A biopsy was needed to confirm what type of drugs would work most effectively. The biopsy was scheduled for another week out. Dad was fading before our eyes but that was the soonest they could get him in. I think the end result would have been the same regardless. Perhaps they were putting it off in hopes he died before they had to work with him.

 His arm pain was growing and spreading to the shoulder. By the time the date of the biopsy Dad was an 8 out of 10 on the pain chart, he told the nurse. They were doling out pain meds like it was candy to a baby. We were all frustrated with the lack of pain control. Though when they did prescribe, Dad wasn't good about adhering to the schedule of dosages. He didn't like feeling groggy and fuzzy. As a result the pain and vomiting was not kept in control. He didn't like taking the pills all the time but had he, he might have been more comfortable, but it was already too late to change the outcome in the end. They found his white cell count elevated while in the ER, using the unidentified infection as the excuse to admit him..

He got his MRI on his arm and the biopsy, on Tuesday. I and my brother, got the privilege of walking Hoover the dog, so mom could spend more time at the hospital and not miss anything. Strangely the biopsy was inconclusive. They wanted to do it again. Dad was done with the hospital and wanted to go home. They had to keep him one extra day as he set off the heart monitor, after the biopsy procedure, when he tried to get up out of bed.  We checked him out on Thursday.

Mom had an old wheel chair in the garage we used to get Dad to the front door from the driveway.  My brother physically carried most of Dad's weight as they slowly climbed the stairs to his bedroom. I walked behind just in case. It was a scary process. Mom and I would not have been able to get him upstairs ourselves, he was that weak.  He slept from exhaustion and residual IV pain killers they gave him in the hospital before we took him home. They also gave him a 12 hour pain killer. It had taken all day to get discharged on Thursday. It was 5:00 pm when we finally pulled in the driveway.

Mom had hand written prescriptions to take and fill at the pharmacy. I went with her. It took two hours to fill the prescriptions as a resident had signed the scripts and a real Doctor needed to approve them. These were some heavy drugs they wanted dad to take for the pain, in high concentrations. The insurance company baulked without the proper authorization. When I asked if we could just purchase the drugs ourselves, the bill was for several hundred dollars. Mom opted to wait while the pharmacist tried to track down a doctor for authorization and get insurance to approve payment. This all was to be free on medicare, if we worked with the system, so we waited on the system. Two hours later we were handed the drugs to take home. We were exhausted and it was late. Mom was going into a marathon already tired.

G slept in the room next to Dad. I slept on the couch in the living room. The bathroom upstairs was set up for dad with a special toilet seat. All his things were just the way he liked them. I didn't want to disturb anyone if I got up in the night. with so many people in the house it is easy to  wake everyone from well needed sleep, especially with the creaky floor boards of the upstairs hallway. I could use the powder room downstairs without disturbing anything or anyone. In the morning I showered in Mom's bathroom after everyone was awake. G was waiting for the hospis people then he needed to head home. He would come back in a couple of days.


 The Hospis people came Friday morning at 10:00 am to introduce themselves. Having done this before, I knew most of the work would fall to Mom and who ever was helping her. I had brought a suitcase and clothes for a weekend just in case, when I came down the day before.  Hospis provides you with everything you need but they do not provide the people to help 24/7. The getting up with the patient and giving the meds when prescribed all falls on the family support. One pain med was to be given every hour. It is grueling as the patient needs more attention before the end.

The body purges itself and this purging takes time. Dad was up every half hour vomiting or going to the bathroom that Friday night. Mom wanted to be up when he was, so the staggering of the schedule didn't work as she wouldn't sleep through , though you really couldn't, as you could hear Dad in the bathroom being violently ill. We stood outside the door waiting for him to be done and escort his shaking body back to bed. At some point he was so exhausted he was willing just to vomit into a bowl while sitting on the side of the bed. I had asked for a bed side commode to be deliver but the service hadn't gotten to us before 9:00pm so we told them we were going to bed and deliver it in the morning. Dad could have used that commode that first night. The bathroom toilet was a long walk at 30 feet away. Even with a walker to help, every time he got up we were there to balance him.

Mom put in several calls to Hospis asking for help as the night ground on. Dad's pain was back. He didn't like the meds they sent. Anything he took orally was being vomited up, in a dark black bile, as his body purged. She tried a suppository, which we thought worked for about an hour. Somewhere around 5:00am, Mom and Dad had the talk about going to the Hospis facility. She called and arranged a pick up for 7:30 am. A transport ambulance arrived right on schedule with two very nice EMTs. They put Dad in a special chair to get him downstairs where they switched him over to a gurney for transportation in the van. Mom would have collapsed if she had kept going the way she was.

We were warned that Hospis would drug him into an induced coma, but Dad was lucid and as a result they only made him comfortable with regular shots of pain killers, per his request, which made him marginally comfortable. My man says he wants to be awake and aware at the time of his death. He thinks Dad was of a similar bent. Dad didn't want to be drugged into oblivion, he just wanted the pain under control.

The Hospic facility checked him in and made him as comfortable as possible. By this time there was no more getting out of bed to use the bathroom. Dad was fading fast. It was Saturday morning.  I  wonder if that commode had arrived on time if we could have lasted one more day at home, but it was hopeless the way that house was set up. The bathroom seemed miles away every time Dad got up. There are steps everywhere. Mom couldn't stand seeing Dad in pain and couldn't sleep when he was awake or up. She also seemed to be  the only one who knew how to make him as comfortable as possible with the ice packs and the covers on the bed, and the pillows just so. It was painful to watch. She was melting with exhaustion caring for Dad 24/7 with no reprieve.

My niece was having a big birthday weekend with a dozen friends over for a sleep over. I stopped over to see them after leaving hospis with dad checked in. I also called my brother and told him he should come back now, earlier than planned.

 I needed to give my mom some space from me and give her personal time with dad alone. Give her an empty house for a while. I watched my nephew so my sister T could run over and see Dad. I also made arrangements to stay in town one more night but give mom space. Mom called later though and told me the house was big and empty. I came back and spent the night at her house. Getting up early to go back and visit Dad first thing Sunday morning.

We knew the time would not be long. The Hospis nurse on Friday had warned us. She said he was well hydrated from the hospital IV's. His body had to purge all that moisture. It would be 3 to 5 days.
Dad was strong. It would take time. I headed home on Sunday to see my family, thinking I would go back on Monday.

 Monday morning Mom left me a message on my phone that Dad had passed away at 10:34 am. She had been with him. The nurse had told her it would be soon, probably that afternoon, as she was leaving after her morning visit. She turned around and went back in to Dad's room telling him she would sit with him a little longer. He took a breath and was gone.

The rains started this weekend. I felt it was God crying over Dad's pain. Dad wanted it over and done with. "This is bull shit" he whispered as  he got sicker and sicker Friday night and the wee hours of the morning on Saturday. His throat was so torn and hurting from the vomiting he could barely whisper.  Sunday he told me in a whisper "I want it over with".

" I know Dad, but it is out of my hands."  I said. I asked the staff about Death with dignity but he was passed that window. That takes two doctors, three days, and a battery of questions Dad couldn't speak to answer, then drinking a cup full of some concoction, when he can't even swallow his own meds anymore. The rule is he would have to administer the drugs himself off site.

  Monday morning he got his wish and Mom was with him. Now, if only mom can find peace after losing the man she has lived with for the last 44 years. That is going to be another long trial.  Right now she wants to be left alone in her grief. She will  come out of hiding, but it will take time.  She has seen enough of me to last her a while.  Death is a messy business.