It was 1946, a Friday night and she was 17 and getting ready to go to a school dance, so she asked her grown daughter to iron her dress because she could not do it from her hospital bed. In the alternative universe where people with brain damage live, logic does not always apply. When do you do battle with their delusions and when do you surrender and is there anything you can do to win the battle?

As heartbreaking as it was, many of the delusions both my parents had were funny. My Mom would repeatedly scold me for not answering my Grandfather’s questions. Her Father died before I was born, but to her he was sitting with us trying to have a discussion with his granddaughter, so I would have her repeat the question and I would talk to an empty space. I had to be careful not play along to well, this was not like an imaginary friend for a child where I too could make up parts of his conversation, she saw and hear him as clearly as she saw and hear me. When it is harmless I went along, I was not going to convince her in that moment that she was delusional due to a terminal brain tumor that she did not remember she had. We stopped telling her she early on what was happening to her, why keep telling a person who can’t remember, that they are dying. We simply said she was sick and we were taking care of her and she had nothing to worry about.

My Mom would get upset when she did not understand what was going on, so we came up with “The Plan”. The Plan was a few printed out pages in large enough font for either parent to read without their glasses, it simply spelled out what was going on around her. She was sick but there was nothing to worry about and she and Bill (Dad) were being taken care of, don’t worry. If you don’t understand something ask Bill. We had the weeks schedule listed. Who would be in the house with them, who would be visiting each day (Her Sister’s, Brother-in-laws, nieces and nephews and friends all had scheduled time slots though out the week). I would arrive on Wednesday nights after work (I lived and worked two hours south of them) and my Sister would arrive on Friday (two hours north) and we would stay until Sunday night. We stressed there was nothing to worry about, that we had everything covered and they were loved. The last pages of The Plan was a contact sheet with phone #’s of friends and family that they could call at any time. Everyone had a copy of the plan, everyone involved in her care. We were and are very lucky to have unbelievable neighbors who are more then neighbors and friends, they have become family, and they got a lot of strange calls for help and rescued us every time.

She kept those pages close, in the beginning we would remind her to read The Plan when she had a question that it answered. We wanted to reinforce the use of it for when we were not there to calm her, it worked. By the time the tumor took away too much of her to care about anything, those pages were well read, worn and creased many times.

That worked for Mom, but not for Dad. Mom was confused about her time line and what was happening around her. Dad knew exactly what was happening, he and I were traveling around the world because I was a government assassin taking out the bad guys.

My Dad’s delusions came in three categories; the two of us being a hit team, this is not his room and/or house and he had to go to work. The assassin part came from our shared love of reading mystery/thriller fiction and hours spent talking about the books we shared. To him I was a character straight out of a Tom Clancy or David Baldacci novel. We only had a problem with this reoccurring delusion twice. Once when I was trying to convince him it was night time and he should sleep, I opened the blinds to show him it was dark outside, and he responded that it is always this dark during the day in Oslo this time of year. How could I argue with that, he was right. The second time was when he was fully aware, not delusional, and was about to get a visit from a priest. He was very concerned that he might become delusional while giving confession and confess my wet work to the priest. He made me explain to the priest, who did not know me, that this might happen and I am not a professional killer.

This is not his room/house was pure hell. Sometimes he thought he was in his car in the living room and I needed to get him upstairs to bed. Other times he thought he was in someone else house and they wanted us to leave, or he was in a replica of his room that was downstairs and he wanted to go upstairs to the other room. When I told him he was already upstairs in bed, he would try to get out of bed himself. His body was dying on his paralyzed left faster then his right, any movement that caused even the slightest friction on that side caused tissue breakdown and bad wounds. For 20 years the right side of his body carried his left around. My Dad had always been strong, but that right side was solid muscle and he could work his way down to the end of the bed where the rails ended and try to get up. Those were sleepless nights for both of us and me stupidly trying to reason with him got us nowhere.

He had to go to work was also hell. But it was one morning after a night of keeping him still in the bed trying to convince him that it was not time for work yet and we needed to sleep, that I tried something that worked. He had been going on all night about needing to get to work to send out specialized transformers, he was an electrical engineer, to Germany. It was an emergency order and he needed to get all the paper work together and instruct the shipping guys and other engineers, all of whom he had been naming thought the night. I went to the other room and called my Sister at work. I explained what I needed her to do and she was, of course, on board, remember from an earlier post I told you that you needed a sister who went along with all your hair brained ideas, this is why. I went back to my Dad and told him we could not go to the office today but my sister was already in the office and she was going to handle it all, but he had to make a video to tell her what to do. We made the video and sent it, in about 10 minutes we got a video back. She was at her desk, a co-worker must have filmed her, she held up paperwork, told him she had talked to the shipping guy, who he had named in the video and she also used that names of engineers I had given her that he did not mention on his video. She outlined her calls with shipping and the engineers and assured him that all was taken care of and it was being shipped. He was so happy and relieved, he wanted to make another video to thank her and on that video I found out that I had a conference call with other engineers (now I was an assassin/engineer) later in the day to work on ratios. Just in case he did not snap out of this, I lined u friends to do a fake conference call about ratios.

He snapped out of it later after we both got some sleep and we talked about making a video now for his future self. A video with him explaining to himself what was going on and that he was sometimes delusional and he needed to believe and trust me. We made a couple different video’s for different situations. They worked, not all the time but most of the time. There were times after that before I could grab my phone and cast the video on his TV for him, he would stop and ask me if this was a delusion, I’d say yes and he’d say ok, tell me what’s real.

I did not use the videos all the time, only when he would get angry because I would not help him get out of bed or try to get out himself. One morning as I walked into his room he said “You’re limping, it’s that bullet you took in Italy, you need to get off that leg” and I knew we were going to have a fun day taking out the bad guys.

AFTER - My Plan

I need more structure in my daily routine. Waiting until the end of my day to write is not a good idea, especially when I am ending a bad day with a migraine and lots of anger. I need to get better at self care and better at asking for help.

I need to replace the barrel belt on the dryer, I know exactly what is wrong by the noise it is making and how to fix it because my Dad taught me stuff like that. I know what to order and all the steps needed to fix the problem, I have the tools that are needed. Fixing myself is not so straight forward, and I don’t think it is anything that can be easily taught. Identifying the actual cause of the problem can sometimes be the hardest part, we’ve all had the blues now and then, an off day, with no discernible reason why.

Facebook was just the fuse that ignited my anger yesterday. I think I am still mad at the world, I need to work some of that off at the gym, get back into a routine of actually using my membership.

This weekend I am going to take the time to create my own “The Plan”. Structure my week days better and start of list for more self care during the week and definitely on the weekend.