Dad was great again today. We spent a few hours with him until Mom got very sick. We had to rush her home and Dad was very concerned about her. He was very coherent today and his neighbors stopped by which made his day. Connie said he was a little confused after dinner when he got tired which seems to be the norm. I’ve been watching him sleep and he’s having a lot of trouble breathing. He stops breathing for long periods of time then wakes up gasping for air. I don’t know if this is related to the cancer or if he has a sleeping disorder like sleep apnea. I’m going to check with his doctor to see if he can tell me more.

Mom was very sick and nauseous. She didn’t eat dinner and went right to bed. I’m very concerned about her and she really wants to go back and see Dad even though she can’t stand up with getting very dizzy.

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Dad was fantastic all day today. We watched a movie with him and he followed the movie without falling asleep. He was aware what was happening and commented frequently. We had normal conversation with him almost all day. When he gets really tired he starts making up stories and seeing things that aren’t happening. Today we enjoyed a long day with him and it was the best day in a long time. We really needed something to lift our spirits.

We noticed they never check his vital signs or do any blood work at the rehab center. I asked the nurse why they don’t check him and she said they only check if there are obvious problems. Since he is stage 4 they are pretty much ignoring him. They give him his meds every day and that’s it. He may still be anemic or his blood pressure may be high or low but we don’ t know. We need to move him to another facility as soon as possible so his own doctor can care for him. Right now he’ s under the care of the facilities doctors who visit once a week. It’s a remote control operation and it’s ridiculous seeing the doctors billing Medicare when they’re never on site.

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Dad was much better today. He was still talking about getting on the plane soon but for the most part he was pretty coherent. It was so nice to actually talk to my father again because I didn’t think he would ever reappear. Every day I don’t know what to expect when I arrive at the rehab center. I go in expecting the worst and love it when Dad is happy and coherent. He seems to be getting stronger from the physical therapy and he enjoys the activity. The downside is that he’s getting stronger and wants to get out of bed and walk again which he still can’t do. His doctor said we would never get strong enough to walk again. It’s so hard to watch him sitting there knowing that he’ll never be able to go home again because he won’t be strong enough.

We started contacting facilities to see if we can get Dad into a Skilled Nursing Facility and Mom into Assisted Living. We thought he was going to get into the Quadrangle facility by now but there are no openings. When he took a turn for the worse on Tuesday and Wednesday we thought he wouldn’t make it out of this facility so we stopped looking. Now he’s bouncing back and he may live for a while so we need to get Mom and Dad settled so we can get back to our families. It’s a long holiday weekend so we have to wait until Tuesday to call the facilities.

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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 Washington to visit today. Dad was so happy to have company. He just smiled and tried to add to the conversation when he could. His speech is slow and limited but he tried his hardest to participate. It was great to see him enjoy himself all day. He never napped or took a break. He just kept going and going. When we left he was settling into bed to watch Sunday night football.

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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 Washington to visit today. Dad was so happy to have company. He just smiled and tried to add to the conversation when he could. His speech is slow and limited but he tried his hardest to participate. It was great to see him enjoy himself all day. He never napped or took a break. He just kept going and going. When we left he was settling into bed to watch Sunday night football.

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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 California. As soon as we talked to Connie, the occupational therapist came in to do his daily routine. Dad could barely sit up, couldn’t talk and shook uncontrollably and the therapist still took him for his workout so they could collect their Medicare fees!

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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