Saturday, May 28, 2011


In May the issue of the lost cars was at its worst. During this month we drove around countless times searching for them. Danny was confused about so much, especially his past. He had many confabulations that he was "stuck" on, like asking where the "camp zone" was that we had been at recently. It was always "2 weeks ago" and questioning how could I possibly not remember being there. He described the place, "where the cabins are", and said its like an army basic training place but yet different...all of us playing things like tug-of-war and going hiking. As a young kid and teen he and his extended family used to go to World's End, which was a family camping place, and I thought he might be thinking of this...but he'd say no, that the same two male cousins that "have his cars" were there too. I kept trying to unravel what he was talking about, but to no avail.

He asked me at least once a day when we were lying in bed, "Isnt there a door in that middle bedroom that leads up to my room in the attic?" I'd tell him no, that this is OUR house and that there's no attic in this house, but he'd insist his bedroom was up there, and he'd describe it in detail. The house he lived in as a young teen did indeed have a large two room attic which was his bedroom, accessed through the middle bedroom. Many times I had to take him into my son's bedroom where he'd excitedly follow me to the window saying "...and the door is right around the corner here." And then he'd look and there'd be no door. The most troubled look would come over his face and he'd say, "..but I could've SWORN..."  This was heartbreaking but tiring too, because the procedure was the same every day and we'd come to the exact same end, but the following day we had to do it all over again.

He was calling me by the name of his past girlfriend in Germany, and also by other ex-girlfriends' names. He often believed we were in Germany. Much of the time he thought it was ME that he lived with in Germany, and that we had been together for at least 8 or 10 years. He'd say "I remember you always being there."
He went through a phase of thinking there were TWO of me also. This was REALLY mind-boggling! He'd say there was me and then there was the "other" Kathy. Sometimes he was so very adamant about it. He'd say the other Kathy has a daughter Shannon, and two sons Chris and Nick etc, describing details about me, and I'd say "But that's ME!"  
Once when we had the house to ourselves we had spent a lovely afternoon in bed. Suddenly he jumped outta bed and threw my clothes at me when he heard a car door outside. He was frenzied, saying, "You gotta get dressed and get outta here cuz it sounds like Kathy's home!"  This was comical in some ways, but also unnerving and yes, hurtful too. Like many partners in this situation, I felt as though I wasn't important enough for him to even know or remember who I was. Thank God for my brain injury support group and the women there sharing their similar stories. One of my friends there wore a piece of tape on her shirt with her name on it for almost a year because her husband had no idea who she was!!

Along with these stories and confabulations came increasing agitation. He would become so upset when I told him which things were false and which were true. In desperation I would call his uncle Jack and aunt Judy to ask if they'd talk to him. On the phone he'd go on about what he believed and would tell everyone that he couldnt remember the past 8-10 years. Once when he was out of hand I called his sister Kim and her and their mom came to pick him up and take him overnight. Danny said he was only staying one night, then he said he was staying a week. In front of the house before he left he kissed me and told me he was leaving because of me. Then he was crying as he got in their truck. When he was gone I felt sad for him...for us both. In 15 minutes they were back, and he handed me a bag. His sister told me he made them stop at the Dollar Store so he could go in to buy me presents. In the bag were 3 small mirror plaques with poems on them. One held a tea light. Before he left he told me he loved me and didn't know when he'd be back. That night he called twice to talk to me and sounded so sad, and told me that I must not love him or else I wouldn't have let him leave. 
The next morning he called bright and early for me to come get him. I spent the day with him there at his sister's before we came home. He was still going on about the camp zone thing, as well as the cars. The first time that I truly realized it's better to just agree was that day. He was demanding in front of his mom where the camp zone was that we'd been at, and he was threatening to kick me. Suddenly I just made up a place on a highway near us and said it was there, and yes, we were there 2 weeks ago. He calmed down in a flash, looked at his mom and said, "See? THATS where we were."

That was early in May. When Mother's Day weekend rolled around mid-month, I cooked a nice dinner and had Danny's mom and sister to visit. The meal was nice, the kids played, and it was a good visit. Danny however would not sit at the table to eat with us... I don't know why. And as usual when we had company, he retreated to our bedroom occasionally due to the overstimulation in the environment. Just as they were ready to leave he announced he'd be going with them. He tossed a ridiculous amount of clothes and belongings into a huge garbage bag. I was kinda dumbfounded, but said nothing. I got three days medications ready and gave them to his sister. Out front, he decided he also needed to take his subwoofer box from my car and bring it along with him. The box is unbelievably heavy and clumsy, and his mom and sister had to maneuver everything inside the truck to wedge it in. Then off they went again. And again, bright and early the next morning he was ready to come home and off I went to go pick him up.

                    Danny n his mom on Mothers Day

Danny finally started to eat better, and although he was still obsessed with eating salads two, sometimes three times a day, we got the news at his primary care doctor visit that he had gone from 151lb to 169lb in just a month!!

He was starting to get bored and frustrated with the trips to cognitive therapy and began refusing to go sometimes. He was a nightmare to get out of bed in the morning and get ready, and when we did make it there we were always late. This was how he was before the accident as well, with his OCD forcing him to primp all morning with his hygiene, we never got anywhere on time. Then there were stops on the way there to use a public restroom, and then once there he would visit the hospital restroom as well. And he would be in there sooo long. After a while all the therapists knew he'd be in the bathroom forever and all of us would knock to try to hurry him. 

Others  around me were amazed at how I took all this annoying behavior at face value and rarely got upset, but truth be told, it was very frustrating and I lost my temper more often. 
I was so busy as well with paperwork, and we had an appeal process in the works for disability, which was a case he had started a year earlier due to his mental disorders. The pace was picking up now and it seemed to be me and not the lawyer who was doing most of the work, going from facility to facility trying to find old records, and fax hundreds upon hundreds of papers to the attorneys office.

On the home front, my daughter and Earl had separated and he was out of my house, and now Shannon was talking about moving out as well. Her and Danny didn't get along and argued sometimes. Danny was an antagonist with his behavior I knew, and she reacted in anger most of the time, not grasping the manner he had to be handled. I was now faced with not knowing if I would have someone at night to watch over Danny while I worked, and this weighed heavily on my mind. As it turned out, I was laid off from my night shift case at the end of the month. I was able to collect, and hoped deep down I'd be able to just stay off and collect unemployment until things were more stable and organized at home.

At the end of the month we had one of our first visits with Dr. D, the neuropsychologist. It was a relief to be given some better guidance, and some insight into the story-telling behavior known as confabulation....

Some hope from the neuropsychologist Mood Friday, May 27, 2011 | An Inspiring story
So the neuropsychologist says Danny has a disorder called "confabulation" which was caused by the brain injury. I feel relieved, because it has a name, is a real diagnosis, and with passage of time and therapy, can be resolved for the most part...Danny will see the Dr weekly, work on reducing some of the too many meds the doc says he is on, introduce Aricept for memory, and continue therapy. Danny needs to be encouraged to journal his activities each day as well.I copied and pasted some good info abt this subject here. I feel so much more help now...
  In psychology, confabulation is the spontaneous narrative report of events that never happened. It consists of the creation of false memories, perceptions, or beliefs about the self or the environment—usually as a result of neurological or psychological dysfunction. When it is a matter of memory, confabulation is the confusion of imagination with memory, or the confused application of true memories. Confabulations are difficult to differentiate from delusions and from lying. With respect to memory, wild confabulations about one's past are rare in the absence of organic causes (e.g., brain damage), and the term "confabulation" is often restricted to these types of distortions. Berlyne (1972) defined confabulation as "...a falsification of memory occurring in clear consciousness in association with an organically derived amnesia". He distinguished between:
* "momentary" (or "provoked") confabulations—fleeting, and invariably provoked by questions probing the subject's memory, sometimes consisting of "real" memories displaced in their temporal context. * "fantastic" (or "spontaneous") confabulations—characteriz ed by the spontaneous outpouring of irrelevant associations, sometimes bizarre ideas, which may be held with firm conviction. Patients who have suffered brain damage or lesions, especially to the prefrontal cortical regions, may have confabulation of memories as a symptom. Confabulation is defined as the spontaneous production of false memories: either memories for events which never occurred, or memories of actual events which are displaced in space or time. These memories may be elaborate and detailed. Some may be obviously bizarre, as a memory of a ride in an alien spaceship; others are quite mundane, as a memory of having eggs for breakfast, so that only a close family member can confirm that the memory is in fact false. It is important to stress that confabulators are NOT lying: they are NOT deliberately trying to mislead. In fact, the patients are generally quite unaware that their memories are inaccurate, and they may argue strenuously that they have been telling the truth. The exact causes of confabulation are unknown, but basal forebrain damage may lead to memory impairments, while frontal damage may lead to problems in self-awareness. Thus, the patient may have a memory deficit but be unaware of his deficit. In the example above, the patient was asked what he ate for breakfast and reported having eaten eggs (a plausible but false memory). It may be that, confronted with the question, the patient experienced a memory gap, and retrieved a related memory about a different morning, in which eggs were served. Being unaware of his own memory problems, he assumed that the retrieved memory was accurate, and answered accordingly. In this sense, his answer - and the memory it was based on - may have been quite accurate; the events simply did not happen at the time he claimed. Confabulation sometimes resolves spontaneously with the passage of time; in other cases, therapy can help the patient become more aware of his tendency to confabulate and reduce the instances of confabulation.
The frontal lobes are important to the "executive" functions of the mind, including self monitoring, or awareness of one’s own behavior. In confabulation, self monitoring is crippled. This is what allows a confabulating patient to recall impossible or improbable events without realizing it. The picture of human memory emerging from research on confabulation doesn’t match the popular misconception of memory as a computerlike system that simply stores and retrieves information. Instead, Dr DeLuca emphasizes, memory is a "reconstructive process" that pieces together rough drafts of an event based on a lifetime of experiences and perceptions. And being imperfect, human memory needs something to check up on it: call it the executive within. Deprived of this executive within, the confabulating patient mixes fact and fiction and the order of particular events. DeLuca is quick to emphasize, however, that patients who confabulate are not deliberately attempting to deceive anyone. Some psychiatrists, he says, still assume that confabulation is an amnesic patient’s way of filling in lost details to save face. However, DeLuca sees little evidence for that in his research. "They REALLY BELIEVE with conviction that what they're saying is absolutely true," he says. At the Kessler Medical Rehabilitation Research and Education Corporation, where DeLuca and his colleagues conduct their research, neuropsychologists, physicians, and therapists help people with confabulation to become aware that some of the memories they recall, believe, and even passionately defend are inaccurate. As awareness of the confabulation grows, the person confabulates less. Just how and why this happens is unknown. But gradually, over a period of weeks to months, most patients stop reporting inaccurate memories. The amnesia generally persists, but the executive within has returned to his desk.

Dannys 30th birthday, eating cake with my granddaughter Sarah, and opening his cards