The month of July was sooo hot, above 85, 90, and even 95 sometimes most of the days of the month. The hour drive back and forth to therapy was often excruciating. Danny was full-swing into his obsession with fixing the stereo sound system in the car, and each and EVERY trip in the car I dealt with him making me wait an hour or more for him to tinker with it. His sleep cycle was reversed for half the month, and he began refusing to get up and get ready for his appointment sometimes. One weekend that we stayed at Barb's, he again slept all day but was awake at night, and we spent the evenings out on her patio talking.
OCD was still ruling Danny's awake times, but I could handle the occasional things he did that were extreme. He spent about 2 weeks spending copious amounts of time on the computer, and when I would go to use it, it would take me hours sometimes to straighten out the mess he got it into. And often he ripped apart my surround sound system and drug speakers from everywhere to create his own version of realistic sounding music or video games. I would let him go, and just fix everything back the next day.
Along with computer obsession came more fixating on his ex in Germany...writing to her, asking her to visit, grilling her about his old belongings, asking if he could come stay there, telling her how he missed her. It took everything in my power to take all this in stride. I just kept telling myself he was trying to connect with the past, since it was fragmented somewhat and all he could really remember. She wrote to me personally several times. She wanted to know how to handle Danny and his emails. I told her to handle it any way she wanted. I lost my patience when he decided to call her one day though, in Germany, and stay on the phone for almost 3 hours. I was not pleased with the 320 dollar phone bill I received. Luckily the phone company did my a "one-time service" and took it away given the circumstances. I also had international calling removed. He still kept trying to call her, and I would have to remind him every time that I took away the long-distance.
I grew quite close to some of the girls in my brain injury support forum and Danny and I both had the pleasure of conversing by phone with some of them. It was awesome how we all understood and cared about each other.
My car was beginning to have a lot of problems and I feared it nearing its end. The radiator broke, then a rear wheel brake shattered and locked up, along with numerous minor things. More living on the edge....
I was having insomnia and nightmares much more frequently.
I was trying to get Danny's nights and days back to normal, and also wanted to curb the growing aggression he seemed to be starting with. It began to appear as if his prior bipolar issues were returning more strongly, and this was frightening. He still refused to shower but for every week or even less.
At the end of the month ANOTHER different psychiatrist "adjusted" meds again. Alittle Vyvanse was good right? So maybe more will be better. WRONG! Depakote and Seroquel were increased, but the Vyvanse increase was a disaster. Danny now was a nervous wreck, full of anxiety, restless etc....and just not a nice person sometimes...
Summing up July in my journal...
Sunday, July 31, 2011
Tuesday, July 26, 2011
Thursday, June 30, 2011
In June the Fog Lifts
On June 1st Danny started new meds and had old ones adjusted for better evened out affect. The two added meds were Vyvanse, which was the ADHD med he used to be on, and Namenda, which is actually a drug to improve memory in Alzheimer patients. The very day he started the Vyvanse there were dramatic changes, mostly for the better, but side-effects that included restlessness and a severe exacerbation of his OCD. On June 4th I journaled about it on my brain injury support site.....
Med effects/moods
Saturday, June 4, 2011 |
Med effects/moods
Saturday, June 4, 2011 |
Danny started the ADHD and memory medications Thursday AM. He was goin on abt the lost cars as soon as he woke up that day, wanted to call the State Police and sounding like he might get very agitated real soon...but as the morning wore on he seemed to come out from under a fog! He was watching TV calmly and seemed oddly very lucid. For example he was discussing all my spellings and punctuations with me as I was writing a blog, and with 100% accuracy! His conversation seemed WAY more focused too. We were talking abt all sorts of things. Later in the evening he was researching something online and stayed focused on it for 2 hrs. We used to ALWAYS do that before, kinda like a hobby, just look up all sorts of things we were curious abt and learn abt them. He hasnt touched the computer since the accident. We were up late talking abt things and he just seemed so much more "like he was before". Even his wobbly gait improved and yesterday on our trips to drs and therapy, he was more steady and carried himself tall and proud like he used to. I thought, this MUST be my imagination or the power of suggestion. Families of brain injury patients say ALL the TIME that they keep/kept waiting for some miracle moment or epiphany in recovery, but it doesnt come. Recovery is long, slow, difficult for everyone to go thru, and has ups n downs...but it's a steady grind.
Anyway, here n there thru the day he said he felt dizzy, "funny", n once had nausea, and I figure the medication is affecting him to a degree. The Namenda for memory takes days to kick in, so its the Vyvanse for ADHD, which he was on before the accident, that is making him more alert. What I cant figure out is, that he had/has pretty serious ADHD, and the med was helping that before. It is in essence, an amphetamine. They say if you really dont have ADHD, the med will make you "speedy" and it didnt before. But now it must be having that effect at least alittle. IDK. I talked to his psychiatrist's nurse later that day and she told the dr and they are thrilled. He also didnt have the seroquel and depakote thru the day cuz both are at night now and extended release, so those things werent making him sluggish.
There are some side-effects tho. Along with being more alert, that night and yesterday he also became weepy at times, kinda depressed. He expressed fears that his life will be "nothing" now because of this brain injury, and worries he wont ever be normal etc. He is saying he is very scared. I look at this tho, kinda as a good thing and step forward too. I dont want him to be scared or sad, but BEFORE he didnt even have an AWARENESS of how he is now. He didnt even use the words brain injury before, like he really had no clue what he had. So I'm hoping things even out with these med changes and then the drs can work on tweaking them. Maybe he will need something more for depression, or something. The neuropsychologist said yesterday when we saw him, that he agrees with what the psychiatrist changed, and he still wants to reduce all the meds he possibly can, but first they will tweak and get everything good, then slowly start cutting it all down and down.
Today will be day 3 on the meds. I'm actually anxious for him to wake up today so I can see how he is, what changes, if its even better as the Namenda kicks in. I know I really have my hopes up, but it just seems miraculous to me. It means he is capable of being less confused. Also I wonder if a low dose amphetamine has ever really been tried with TBI, to increase alertness, awareness and lessen confusion. It seems like something that should or could be tried.
Well anyway, just wanted to update you all on how its working. I will keep you posted. Love to all!!!
As we moved thru the month of June, so many things seemed better as far as alertness and memory, but some seemed so much worse. The OCD raged stronger and stronger, and he seemed discouraged and upset so often...
My chronicling on Facebook described the daily happiness as well as frustration. Things seemed to become very complicated very fast....
JUNE 3rd....Yesterday was an emotionally draining day. The new med 4 adhd seems 2 have lifted a fog. Danny took no naps yesterday (unheard of) n he has exploded back into his nonstop talking mode. Theres been conversation all last nite n 2day, deep insightful stuff on both our parts, and also some negative n hurtful exchanges. The journey continues 2 twist n change.
Today was good. Dannys talkin ALOT, 2 the point of lookin n gettin anxious. Also real weepy n fearing 4 his life n future 2 B "nothing" cuz of this. Hopin in few days meds level out, n if not more tweaking 2 B done.
JUNE 4th... Dannys been sleepin all day, but thats alright. He just had the very first 2 days since he's been home in 4 months, to be up all day with no naps at all and active. He is exhausted obviously, and that brain of his wants to heal so bad and needs rest to do so....so sleep my love.
JUNE 5th...Tonight we talked and watched a movie n some TV, ate dinner, and we went to sleep for awhile on the sofa. He watched the discovery channel. Still alert, little weepiness, less mention of "the cars"
Danny is very engrossed in all the menus/settings on the cable box. He's pressing all sorts of buttons...I hope he knows what he's doing...but I can see he doesnt.
JUNE 9th...Danny got 2 sleep@1am I think, but neither of us slept well w/the heat (our bedroom AC broke last fall) Now its 5pm n he hasnt gotten up yet, refusing his pills n wont come downstairs where its cool. Guess I cant force him but geez, he hasnt eaten either. N we'll be up all nite again. I feel he's depressed 2day...he fears 4 his future n feels worthless. If only he believed how very much he's worth 2 me!!
Dr D says 2 hang in, keep encouraging, and that Dannys welcome 2 call him anytime 2 talk. Nick n I visited Barb 4 a bit. We got 2 see a Lamborgini on the highway on the way home...Nick was thrilled! When we walked in I was met with a huge, hug and teary-eyed kiss cuz he missed me so :-)
JUNE 22nd...Dr is tweaking meds a bit more 2 try 2 boost motivation, correct sleep cycle n eliminate depression, was impressed by Danny's current state. CeCe the nurse there spoke to us(mostly Dan)for over an hour. She is sooo good, patient, knowledgable, but just plain comforting...geez it makes me wish she were my mom, haha. She's so good with Danny. I'm thankful 4 the wonderful ppl we have found 2 help guide us thru all this.
JUNE 23rd...A little stressed....a bit frustrated...pretty baffled...and right now trying for Danny to track down money he got when his dad died. It was blown...all of it... blown in Germany...but he doesnt believe that, but IDK, and its bothering him. I just feel like I need to help him find out what happened to it
JUNE 26th...My car wont start. Im broke. My amnesiac bf thinks im just his "buddy". I mean really...what next?
JUNE 29th...Muddling through...difficult stuff...relationship tangles and confusion for Danny and so also for me...memory loss is an awful thing, seeking to destroy what was, and trying to mess up what is. Its hard for me, for us, and all I can do is keep waiting and trying to get through it day by day, and what will be will be...
I didn't know how to weigh these things against eachother...was it better to improve the memory with a stimulant and have him more alert? Was it a fair trade off in that he now was more aware of himself and was feeling depression as well as more OCD and was driven to do "projects" at an alarming rate? No one had answers for me, and I only could do what I felt each day was best. This was all uncharted territory for me, and actually pretty much so for the doctors too since Danny had so many predisposing conditions...
Monday, June 20, 2011
My Decision to Blog our Journey
In June I decided so much time was passing by, and it was probably out of my scope of ability any time soon to write a book about this journey, so I decided to start this blog....
The Reason for my blog...
by Kathleen Quinn-Farber on Monday, June 20, 2011 at 12:23pm
My recent but eventual ambition was to someday write a book about Danny's and my TBI journey, in fact I've always wanted to write a book. I excelled in journalism since I was as young as elementary school. In '75-'76 at the age of 12 I had an over 400 page novel started abt flying saucers called "The Ultimate Encounter". Ironically in 1977 "Close Encounters of the Third Kind" was released. My mom threw my project in the garbage on one of her wild cleaning rampages :-( In 6th grade I wrote a play abt conservation starring African animals, and I actually got to choreograph it, create costumes, practice and put the play on for the school. I took courses thru the mail back in '94-'95 and my teachers all told me I have great talent for writing. And those of my friends and family who have read what Ive written thru the years have praised my work as expressionful, creative and with the ability to paint emotional pictures for people. Unfortunately money didnt allow for me to pursue that dream, nor an art career, and then as life went on I got side-tracked and well, its all history now.
So anyway, I realized there is such a lack of information out there on brain injury...for victims as well as families. To really find books and reading material to help ppl feel not alone in this problem, is difficult. The few books and movies I found, I soaked up like a sponge. And if you dont find a support group as I did, it all can become extremely overwhelming. So I wanted to write a book, someday, but thats not realistic right now. I'd have no idea where to start, how to do it, or where to find the time or money to do it correctly. Not at this point anyway. So I started a blog last night.
After Danny's accident in Dec, I used my Facebook as a way to chronicle things in order to keep family and friends abreast of the day to day changes and happenings. From family, friends, co-workers, old schoolmates, I received an out-pouring of love, prayers, and eager requests for updates as they followed what was a miracle. So I started going back to all those posts and copy/pasted them in my private journal on my online support site, and will use them, as well as adding all my other memories and so forth. I just got thru the introduction last night, and a couple more entries this morning. It will be a therapeutic, as well as enriching and creative endeavor for me. And for ppl going thru the same, or ppl who come across it in a search for help, it will help others as well.I'm really excited abt this :-)
http://dannysjourneyback.blogspot.com
Wednesday, June 15, 2011
ANXIETY? Post Traumatic Stress Syndrome? Fears for myself....
Ever since the accident, I had been having occasional bouts of anxiety...i'm guessing it was normal given what we'd been through so far. In the beginning I visited the tree where Danny had crashed a few times, only because I was looking for his lost cell phone. It was hard as HELL to go there. Then for weeks...a few months actually...I wouldn't drive past the site, OR where he had gone over a wall and continued on a few minutes later to the crash site. When I DID finally start going by there, and still to this day, my eyes are drawn to the tree and the spot where the bark is sheered off the tree.
In the ensuing months I became obsessed with the safety of my family in cars, and even my young son and granddaughter...falling down, at playgrounds, on their bikes etc. I also would feel anxiety when seeing photos of people in ICU afer injuries.
I started to experience panic attacks or anxiety attacks at the oddest moments, like once when we thought, through hearsay, that one of my son's friends had been injured in an accident, and recently when a friend's sister was killed in a motor vehicle accident.
One time that it was particularly bad, and quite shocking to me, was my reaction after a fun event I had taken my son to see. It was happening alot and really spooked me....
Update on Danny 6/2/11
by Kathleen Quinn-Farber on Thursday, June 2, 2011 at 11:09am
I knew first thing yesterday AM that it was gonna be one of those days. Coming home from work at 715AM I drive up our street and see my 19yr old son's car ahead of me stopped in the street, and an SUV right in front of him sideways. My son was also coming home from nightshift. I panicked and knew he had had an accident. (These days im seeming to have more and more anxiety and fear when I see or hear of auto accidents...OR when I see pix of ppl in ICU looking like Danny did...AND I get consumed w/fear and paranoia abt Nick playing outdoors without me and out w/his friends) and seeing it being my son made it feel awful. Well it was a fender bender and everyone was ok.
A few days later I took Nick downtown to see BIGFOOT crush cars. I was fine until right before we left and I was taking pix of Nick n my granddaughter real close to it, and suddenly when I was seeing the crushed cars I got really sick, started shaking and almost started crying. I quick told my daughter it bothered me n I hadda go. I felt so stupid! Whats wrong w/me???
Saturday, May 28, 2011
MAY
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 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....
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
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Wanting to walk to a friend's house also IS an accomplishment for him in the motivation area. It is bothering me NOW, because I am set to return to work this week, and have it in my "worry-bank" that instead of taking for granted that he always stays inside unless i'm with him, I'm worried he will go someplace and get lost while i'm at work. Thank heavens most of the shifts will be 11-7 nightshift. Snap and I were IMing last night and discussing that an ID bracelet with his name, "brain injury/confusion", our address and phone would be good to get for him. I know he wont wanna wear it all the time, but maybe he'll agree to just when I'm not here.
WIRES