esophageal cancer · Uncategorized

Brain changes, hallucinations, drugs, end of life.

My 65 year old husband recently passed after a two year battle with esophageal cancer. We were luckier than most esophageal cancer patients because we had large windows of quality time. The last two months were the most challenging partly because of his hallucinations and night time escapades. My husband was often a kidder so identifying if he was pulling my chain or not was a challenge.

About three months before his death I overheard him on a business call and I thought to myself – that order is going to be so messed up. He wasn’t taking down any notes to speak of for a very large project. At the time I just assumed he knew what the hell he was doing……looking back this might have been the beginning of the end. That next week he had the stroke and went out on FMLA. There were several work phone calls that he received during this time which indicated there were huge issues with that project.

We often chatted about our assets and whether or not we had handled all the necessary items in case he or i died – we re-visited most of this when he got his terminal diagnosis in June of 2015. One day shortly before his stroke he gave me a smirk and said well I still have part ownership in that gun shop in Arizona with a bunch of guys. My husband grew up a hunter and had liquidated all his personal guns when he became ill. I questioned the gun shop because in 24 years of marriage it had never been mentioned. He stated it wasn’t worth looking into probably not worth anything – couldn’t even remember the name of the guys he owned it with. I honestly could not tell if he was joking or not.

After his second stroke he recognized all of us but felt he was in the 1970s. I am his fourth wife and certainly wasn’t married to him until the 90’s. His daughters and only children were not born until the 90’s. He was able to tell me everything about them and us just his time frame was amiss. He thought we lived in Colorado. He often thought he was in a hospital at a base. He did spend about 4 years in the air force in the 70s in Colorado.

One day while still in the hospital I was there with our oldest daughter and he said I lost a dog on my watch last night. This was the second story about losing dogs during his watch. This one seemed to distress him more. He wanted me to come closer to whisper to me out of ear shot of our daughter. So I did. He sadly said it was Madeleine (our family dog) and glanced at J. This was definitely not the case because J and I were spending each day going back and forth to the hospital and home to take care of the dog. We were able to reassure him and brought videos in each time we went home. He missed his dog.

Our eldest daughter (23) and I had moved our masterbed to the family room while he was hospitalized. From this location he could watch TV and interact with the rest of us. So hard to classify whether the following events are hallucinations, drug induced, or brain changes, or all of the above. Our eldest daughter was here watching Mash reruns, news programs, and some pro basketball games and other movies.

I now understood why everyone said make sure you are getting enough rest – there was never enough. Medicine dosed around the clock….and other events.

When he was discharged after his first 21 day hospital stay he started sleeping on the main floor of our townhouse. He had started wearing pull-ups. Urgency seemed to be a developing issue. He could still ambulate to the bathroom but he often would not wake me up and i was terrified he would fall. He had his antibiotic bag he had to wear for a month because of the staph infection to his craniotomy site. He had a massive incision on his head. He was quite unstable from being in the hospital for so long. I started by sleeping on the couch in the front room which he would have to pass by to reach the bathroom and eventually ended up sleeping in the recliner next to his bed.

In the middle of the night I heard his IV bag alarm going off. I got up and found it disconnected and running all over the place. I asked him what happened and he said he gave it to the other guy he needed it more than him. Such a gently soul. I got a new bag and reattached his medicine.

Another evening he explained to me the IV antibiotic pouch he wore each day 24/7 for a month was an NBA bag of some sort and he wanted to gift the coach of the winning WNBA team some pull-ups. He said all of this with in a serious tone. Bizarre.

The next episode occurred when I was still sleeping on the couch in the front room. I had set my alarm for 3 am or so to give him his methadone. At around 1 am I heard a ripping sound so I asked him what he was doing – His response was “I have it handled” I knew immediately I needed to get up and investigate. I found him sitting on the edge of the bed with his pee soaked pull ups in his hands ripping them into little pieces and dropping them on the floor. (any clue as to what a huge mess this is to clean up dissolving foam full of pee) I got him cleaned up, new pull-ups – the bed cleaned and put him back into bed. He told me we were in Saudi Arabia (I think the news shows had shown Trump traveling there) and it wasn’t him that peed in the bed it was the little boys who were sharing the bed. I asked him why there were little boys in the bed and he said thats how they sleep in Saudi Arabia. Later that morning I heard him again get up and he was coming out of the bathroom without his pull ups and I got up to check on him. He again said be careful in the bathroom the little boys peed all over the floor. Yes there was pee all over the floor. I came to the conclusion in my head it was easy to blame the little boys who often pee in their beds/

One of the most amusing comments he said to me when i was sleep deprived cleaning up the torn apart pull-up was, “you don’t need to get that the servants will” – I thought if only – you are looking at her.

Another night he calls me from his bed around 4am and said can you help me I got stuck stretching. I find him completely sideways on the bed unable to return to his sleeping position. As I returned him to his sleeping position I noticed a two inch blood clot on the bed and quickly looked at his head incision – it wasn’t from his head and soon I was holding his nose for ten minutes – the clot was from when he picked his nose. We had several nose bleeds because he would unconsciously pick his nose. The middle of the night ones were challenging.

Another night I again get up half asleep from the couch because I hear my husband up and I walk into the kitchen to find him stark naked trying to stuff the comforter into our trash/pantry. I asked him what he was doing and he responded I am bringing bodies back from the front lines in Korea and I need to go back and get more. I was able to get him to go back to bed.

One morning when he awoke he said I think I took those pills too early ( I had taken over all medication control months before). I said what pills and why? He responded Ill be gone before my brothers get here. His brothers had trips scheduled to come in and visit. He said the pills to end your life that my friend from NJ gave me. Needless to say he took no pills and he was alive when both his brothers visited.

He told me one morning when he awoke he went somewhere and I just needed to wait because I will be amazed at what modern medicine can do. I asked him and he said we can now go back to before I was sick and be healthy again. He said what he learned had to do with time. He said he would explain it all later….but it was amazing.

Sitting on his bed talking to him one day he told me to be very still…..He said there is a gun pointed at the back of your head. Of course i turned around and nothing was there.

Who is Greg? One day when he was still able to sit in the recliner he said to me Greg is sitting right there. No one else was in the room – he mentioned seeing this Greg several times.

What were these episodes – who knows – sometimes they seemed related to TV shows, sometimes related to nothing, Luckily they were not traumatizing except for the one about the family dog. He accepted and trusted my reassurances.

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