Today Dad looked a little more relaxed but he was consumed with the idea that he was getting on the plane soon. He wanted his jacket because the plane might be cold and he was getting ready to go through security. He kept asking me if his bags were packed and did I attach the yarn so he could identify his bag at baggage claim.
We found out that he often roams the halls in his wheelchair when we’re not there. He’s so determined to keep moving and finish his chores. His mind just won’t slow down and let him relax.
We’re still wrapping up the administrative tasks for Mom and Dad. The financials are in order and in great hands. Their broker/money manager is outstanding and really cares about my parents. Their realtor is also outstanding and calls or visits every day. My parents have surrounded themselves with great people. Tomorrow we meet with an attorney to review their will. We’ve found numerous copies of wills, some complete and some incomplete. We’re taking everything to him so he can sort it out and tie up any loose ends.
There’s so much clutter around the house and paperwork everywhere. My mother was always meticulous and very organized. Now she can’t find anything and she has important papers scattered throughout the house. She’s losing bills and forgetting to pay them. I’m setting up automatic bill payment for all of her bills and cancelling all subscriptions and services that she doesn’t need. I cancelled Netflix but she lost 2 of the 3 DVD’s. We can’t find them anywhere!
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Ellen’s mother Eleanor passed away today. She went quickly after her kidneys failed and a heart attack. She was the caretaker for her husband Jack who has short term memory loss. Today is also my mother’s birthday and we’re afraid Dad may pass today which would traumatize my mother for the rest of her life.
When we arrived at the rehab center, Dad wasn’t in his room. I thought he was in PT so we waited. After a while I decided to go watch his PT to see how he was doing. I found him at the nurses station in a wheel chair in a panic. He was holding a note with my grandfather and uncle’s names and an incorrect phone number. He told me he was trying to call them because he couldn’t get a hold of me. Dad said he drove to the 2 AM movie last night and the car broke down. He missed some of the movie because they changed the clocks forward one hour in the middle of the movie. The car broke down on the way home and it was towed to the Sunoco station. He was panicked because he couldn’t find his keys. I knew it was going to be a long day.
Dad was in a panic all day worried about everything. His mind was racing all day and he made no sense. He started losing control of his entire body at lunch and slumped out of his wheel chair. We got him into bed to rest and his breathing was very shallow and he was convulsing, We thought this was the end. In fact he stopped breathing completely for a long time and then jumped up gasping for air. He just won’t pass until all of his chores are done. I hope he passes peacefully and very soon. He’s working so hard right up until the end just like we expected. It’s so sad to watch him struggle and he doesn’t deserve to have this linger.
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Connie and I stopped by in the morning after dropping Aunt Magda off at church and Dad was sitting in his wheelchair watching his favorite, the Weather Channel. He was coherent and was aware of what’s happening. It was our Dad for another brief moment. Then he told us that Mom spent the night in his room but slept in the chair across the room. He couldn’t figure out why she didn’t sleep in the empty bed next to him. The bed next to him is currently occupied by John who recently had a massive stroke and is paralyzed.
We’ve decided to move forward and get my parents set up at The Quadrangle, a beautiful assisted living facility. They’ll be able to be together and they’ll be well cared for. This could go on for weeks or even months and we need to start thinking about ourselves in addition to what’s best for our parents. We can’t stay here constantly on death watch because we have families of our own to care for. It’s completely exhausting waiting all day waiting for Dad to pass. We need to move forward with step one which is to get him out of the chaotic Medicare machine and into a private room. Mom and Dad need some private time together to let each other know how much they love each other and begin the process of closure.
Dean, Christopher, Jim and Nick came from
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When I arrived Monday morning Dad was awake but very tired. Sunday zapped all of his energy. They took him to physical therapy for an hour even though he looked horrible. They had to do the PT to get their Medicare money even though he looked pale as a ghost.
As soon as Dad ate lunch he fell asleep, a deep sleep. He slept all afternoon and struggled to breathe at times. He was shaking uncontrollably at times and we thought this was the end. We all said our good bye’s and convinced my mother to tell him that it’s okay to go and that she would be okay. He finally woke up after 5 hours of sleep and thought it was morning. He was disoriented and confused. It was hard to watch.
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Connie and I stopped by in the morning after dropping Aunt Magda off at church and Dad was sitting in his wheelchair watching his favorite, the Weather Channel. He was coherent and was aware of what’s happening. It was our Dad for another brief moment. Then he told us that Mom spent the night in his room but slept in the chair across the room. He couldn’t figure out why she didn’t sleep in the empty bed next to him. The bed next to him is currently occupied by John who recently had a massive stroke and is paralyzed.
We’ve decided to move forward and get my parents set up at The Quadrangle, a beautiful assisted living facility. They’ll be able to be together and they’ll be well cared for. This could go on for weeks or even months and we need to start thinking about ourselves in addition to what’s best for our parents. We can’t stay here constantly on death watch because we have families of our own to care for. It’s completely exhausting waiting all day waiting for Dad to pass. We need to move forward with step one which is to get him out of the chaotic Medicare machine and into a private room. Mom and Dad need some private time together to let each other know how much they love each other and begin the process of closure.
Dean, Christopher, Jim and Nick came from
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Dad looked horrible when we arrived Saturday morning. He looked tired and drawn. His voice was shallow and weak and he labored to say anything. He struggled to put together his sentences and drifted off into disoriented conversation. He shook uncontrollably and his eyes repeatedly rolled up into his head. It was very difficult to watch.
Dad was so weak that we thought the end was coming today so we called Connie and told her to come right now from
Dad’s appetite is still very strong. He said he ate a full breakfast but we don’t know for sure since we weren’t there. He ate beef stew for lunch but again we didn’t witness it. We brought cheese steaks for ourselves and he ate a full 6” cheesesteak like he hadn’t eaten for days!
A few neighbors stopped by to visit and Dad was excited. He entertained them for about an hour then he had to stop for a nap. He slept at least 4 hours and was groggy the rest of the night. He’s drifting in and out of making sense. He’s conscious most of the time but doesn’t make sense often. It’s so nice when he’s the Dad we know but unfortunately that person only appears occasionally. It’s clear that he’s tying up loose ends and preparing for death. He’s still worried about little tasks that need to be done, most of them not real.
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Dad was disoriented and angry. He was trying to stand up and leave so he could take care of things at home. His mind was racing and he hadn’t slept all night. His hands were in constant motion like he’s fixing something or cooking. He has a fascination with food and he’s always worried about everyone getting enough food.
His hallucinations continue. He’s seeing cats, dead friends, a gold watch his mother gave him, cars, boats, trains and constant activity around him. I get tired watching him!
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I arrive early Thursday morning and sleep only a few hours. I don’t want to go to the hospital and see my father in this state. I don’t want to see him withering away and failing. I want to remember the wonderful man and the happy memories. I know I have to face reality and the first step is going to see him and comfort him. He cared for me for years and now it’s time for me to care for him.
When I walked into his hospital room he was sitting up in a chair. He was white as a ghost and very frail looking. He looked horrible and could barely talk. His blood pressure was on the high side the day before but today it dropped to 80 over 50. He didn’t look like he was going to make it.
The nurse came in at 9 AM with some papers and said he was being discharged at 11 AM. Mary and I looked at each other in disbelief because we knew nothing about being discharged and he looked like crap. We asked if they would still discharge him if his blood pressure was still low and where were they sending him. They said the doctor would make the call and the social worker would be in to tell us where he was being moved to.
We were in complete shock. Here is Dad barely functioning and they’re discharging him to who knows where? Our first reaction was to move him home where he wanted to be so we told the social worker to make arrangements to transport him there. We would have to arrange 24 care, get a hospital bed and prepare the house. We needed a few days to get this arranged and we only had 2 hours.
After calming down and thinking through our options, bringing him home wasn’t going to work. He would try to get out of bed and clean, cook and run the house again. He couldn’t walk any more so this option wouldn’t work. We opted for option B which was moving him to the rehab center that the social worker recommended. We really didn’t have a choice at this point.
Well at least we didn’t think we had a choice. According to law, the hospital is required to give us 3 options before discharging him If we didn’t like the options we could keep hi in the hospital until they gave us an option we accepted. Another Medicare scam! The hospital would no longer receive Medicare money since they stabilized my father, if you can call blood pressure of 80 over 50 stable. They railroaded us out of their facility without giving us 3 options and explaining the law. They would have to eat the cost of his care if he stayed in the hospital so they called around until they found an empty bed for him. The
When we arrived at the
As we were leaving for the night we told the nurses to watch Dad because he was trying to stand up and walk out. The only problem was that when he stood up his legs weren’t strong enough to hold him up so he would fall. The nurse in charge of Dad was on the phone slamming it down and yelling at someone in frustration. She’s an angry person that hated her job. One nurse listened to us when we warned them about Dad trying to leave but his nurse just looked at us with dagger eyes and didn’t say anything. She really hated her job. She wouldn’t even take my cell phone number. She only wanted our local number.
Of course Dad tried to stand up and fell down. They called us at home and left a message while we were on our way home. We decided someone should spend the night with him so Mary, Charlie and I went back to the facility to check on him. Charlie volunteered to watch Dad overnight but Dad kept calling out to me so I had to stay.
It was the worst night of my life. Dad didn’t sleep at all. His mind was racing out of control with unfinished tasks. He was hallucinating and thought he was standing on the edge of a pit that was pulling him in. Down in the pit were various possessions of his that fell in including a gold watch that his mother gave him.
Dad was hanging onto the sheets like he was holding onto a railing. He kept moving his feet to the footboard of the bed to regain his balance. Throughout the night he kept yelling to me to help him get things out of the pit. First he wanted a bowl of macaroni. I told him we were in the hospital and the kitchen was closed. He insisted that he could see it in the pit and he grabbed it with his feet and dragged it up to his hands. Then he wanted a spoon. Then butter pecan ice cream. I called the nurse for help and she brought a cup of ice cream but he said he wanted butter pecan. He didn’t even taste it but he refused it.
Throughout the night various people came to visit and different emergencies arose. Dad said he had to change all of the light bulbs in the facility from 40 watt to 60 watts because it was dark in his room. He made vegetable soup. He worried about the heat wave and told the nurse to make chicken salad, sliced tomatoes and hard boiled eggs for everyone so she wouldn’t have to use the oven and heat up the building. He was so busy making sure everything was taken care of. Typical Dad helping everyone out and doing everything for them. It was sad to see him work so hard all night long.
Finally at 4 AM his cousin Junior came to visit. Junior passed away a few years ago. Dad wanted Junior to go down the street to a restaurant with him for dinner. He kept calling for Junior and said “let’s go”. Eventually I turned into Junior in Dad’s eyes and he started yelling at me to take him home. He kept yelling “Come on Junior, you have to take me home because people are waiting for us.” For two hours I was Junior and Dad kept working his ass off to make others comfortable. At around 6 AM Mary came back to relieve me because Dad was so upset with me and agitated. Once Mary came, Dad calmed down. The worst night of my life for sure.
[youtube:http://www.youtube.com/v/leB0-EO3jKw]
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My flight from San Francisco to Philadelphia was delayed by bad weather so I didn’t arrive until well after midnight. Today I’m going to see Dad at the hospital. He’s being moved from the hospital to a rehab facility today so he can strengthen his legs enough to walk again. The doctor told my sister yesterday that he probably won’t ever walk on his own again since his cancer is stage 4 and spreading rapidly. Today we have to decide whether to move him into assisted living or to bring him home with 24 hour care. He desperately wants to come home so we’ll do what it takes to comfort him.
My wife Ellen called last night and said her mother was admitted to the hospital yesterday with kidney failure. She’s in critical condition and there are no children near to help out with her father who needs constant attention. Both Ellen’s parents and my parents live far from their children and it’s time to get them closer.
I’m off to the hospital now to see Dad and hopefully get him home as soon as possible.
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Today I’m flying back to Philadelphia to see my father who was diagnosed with inoperable stomach cancer. The cancer has spread rapidly and it’s too late to do anything…we think. The problem is that we’re not getting any information from the doctor. Very vague, quick passing comments but no frank discussion about my father’s condition. It’s frustrating to see my father suffering and we don’t have the facts to know if we can help him.
Today is going to be the worst day of my life when I see my father at the hospital. My father wants to go home so badly that they’ve had to strap him into a chair. He’s frustrated and weak. We know he’s very sick but the doctor isn’t giving us enough information. Should we line up hospice now? Does he have a week, a month or a year left? We need to know what’s going on.
I know millions of people are going through these same frustrations every day because of our broken health care system. Very vague communication and no details. I’m going to use this blog to document the rest of my father’s life and share our process so maybe we can get our politicians to fix our broken health care system.
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