April brought changes...increasing OCD symptoms, calmer behavior at times, small strides in memory improvement, and more professional help.
Before Danny's injury he was an impulsive spender, which was a symptom of his OCD, and this returned for a while. Walmart used to be a nightmare trip, with Danny spending copious amounts of time reading labels and comparing items and prices. I have in the past, before his injury, had to gently take him by the hand and lead him out of a store after waiting unbelievable amounts of time for him to complete a shopping task. In April, the few times I first ventured to take Danny into a store and out in public among crowds, it was of course Walmart, and good old OCD kicked in. One night we started out going looking for his "lost cars", but got side-tracked with visiting his aunt and uncle, and after that we ended up at Walmart. There we remained while he started piling all sorts of things into the cart, most of which neither of us needed or could afford. I convinced him to put most of it back, but he bought a bottle of expensive cologne that he liked, and a set of speakers for our rear dash in the car, which he installed in the parking lot at 1am. After that we started talking about our lack of privacy at home, and since Nick was away with his dad for the weekend, we decided it would be fun to get a motel room for the night so that we could have some time completely alone. We found a room and checked in....
Danny spent our time there looking for "our" fridge and the salad he had in it, and looking for the doors to our kitchen and bedroom. He was telling me every hour or so that "Kathy (me) is going to be so pissed off when she finds out we spent the night in a motel together..." He became very disoriented and I spent the night comforting him and "talking him down." Bad idea at this point I learned.
On the 7th of April we were finally cleared to remove the neck brace. He looked so different. As a result of the CT scan to determine that his neck vertebrae were healed, they picked up an enlargement of the right thyroid. This led to a battery of tests and more appointments, for blood work, MRI and thyroid re-uptake testing. He was found to have abnormal nodules growing on the right side, which turned out after biopsy to be non cancerous, but did show hypothyroidism, and he was subsequently put on yet another medication to adjust that.
In the second week of April we started making some small strides with memory. Here is my support site journal entry regarding that.....
In therapy we have been using techniques such as repeating over and over and over, information, and using tools to help "remind" him and make "connections" in order to help recall. This is going very slow but is working. Wednesday we were shown a new tool, where we have a sheet of paper with hour by hour entries, and Danny and I (preferably him) write down all events of the day....where we go, what he does, eats, visits, etc etc. Then we go back over it numerous times as we go along thru the day. Well we did it on Thursday and it went GREAT! He was able to remember what his dr said abt his neck being healed, instead of speculating abt what he said. He was able to recall details of what we bought to eat at a gas station, and many things. Today in therapy when Lisa went over the sheet he was STILL able to recall things, even details abt what the dr said abt his thyroid being enlarged, simply because he had written on the sheet that his dr must check is thyroid. So this is something very exciting for us right now. It is retraining his brain, learning to utilize techniques called "compensation", which are tools he can use to remember events. And eventually as memory improves, these tools will become less necessary. That is our goal. Wish us luck and plz continue sending prayers for Danny :-) Thankyou
..Mid month Danny's aggression was worsening. Car rides were becoming worse again, and a few times in an agitated state, Danny gave me a stab to the ribs with his knuckles. His moods seemed to be clustering into distinct modes, rather than a constant cloudy but even monotone of ups and downs. Throughout April his good moods were improving somewhat, but his bad moods were becoming more isolated and severe. One day on the way to therapy he started to really flip out, and I was pulled over while he was frenzied and trying to make the stereo work and had given me a rib jab. I called ahead to the rehab, crying, that I needed help...something more had to be done for Danny. When we arrived they had a neuropsychologist waiting for me to gather information and listen to my desperate plea for help. They had brain injury neuro psych specialists there, but our insurance wouldn't cover this expensive specialized treatment. I pleaded until they revealed the fact that they have "charity funding" for extreme cases, and I was given an application. I wanted the best that there was for Danny.
Danny's memory and mainly SELF-AWARENESS was improving a bit. He was starting to REALIZE he had been injured and that he had a brain injury, and that he was lost in a world of memory loss. I believe it was frightening him immensely, and perhaps feeding into his anger and agitation. Mid month a new psychiatrist from our own area adjusted some meds and I seemed to see improvement at times. Near the end of the month we were accepted for "charity care" and Danny was started with a brain injury neuropsychologist at the rehab. Dr. D. was and is GREAT!!!.....
During a particularly bad weekend mood wise, Danny's cousin Sherry and I think his sister Tara came to get him to give me a night off. They took him to eat and to visit his aunt and uncle. I used the time to spend with Nick for some quality time, and we went to the mall to play in the game room and get fresh soft pretzals. Danny called wanting us to come though, and we ended up going to Sherry's along with him for the rest of the weekend. I was seeing that he was very lost without me with him, and becoming overly dependent.
After the med adjustments, Danny ended April having many more good days clustered together at a time. I also was busy using time on my brain injury support site learning in particular how to diffuse agitated scenarios. "Ignore bad behavior". "dont feed into it" and "walk away" I practiced this when I could. It was extremely difficult but worked sometimes. I also tried to praise all his good behavior as well.
There were family issues too about mid way through the month. I knew (and know) Danny's immediate family had no way of realizing what we were really going through. Unfortunately its the same in most all families of the brain injured. Its not really their fault. But I DID resent their lack of even calling a few times a week to see how he was...especially considering the fact that they were doubtful about him coming back home with me after discharge and acting as though I could not give him the best care possible. I dont think to this day, that they realize the love for Danny that drives me to cope and persevere with him, and to believe that he can be better. I also know they are clueless as to what this is really like and all about.
Thursday, April 28, 2011
Sunday, April 24, 2011
IMPULSIVITY and FILTERS
At the end of April over Easter weekend we had an experience in impulsivity and lack of filters....
As I said Danny's been calm and almost pleasant most of the time the past 2 weeks. We are at my best friend Barb's for Easter weekend. He helped Nick dye eggs last night just a little. Couldnt get him to really participate. He went back to bed. Well when Nick n I went in to bed, Danny is sittin there with a bottle of Robitussin DM that was on Barb's bedstand, readin it. He started askin me how much he should take n I was telling him none. He kept persisting. I tried to ignore. Nick n I got in bed. Well then he took the lid off n said he was gonna drink the whole bottle. I started to get outta bed saying I was gonna tell Barb then. He stands up and splashes/pours almost the whole bottle on Nick n I cuz he was mad and irritated that I wouldnt let him have the medicine and was gonna tell Barb. What a mess. Hadda wipe us off, change the sheets etc. He felt alittle bad and was in the bathroom with me trying to wipe off my neck n hair with a wet washcloth. It was so sticky and hard to get off. Nick didnt cry, but he had this awful sad and kinda mad expression and told me he is afraid Danny will "do something" to me. I tried to explain impulsivity with brain injury...how for example he might FEEL like dumping a glass of milk on his 4yr old niece when she pisses him off, but that our brains stop us and tell us its inappropriate, but the TBI person often loses that control or ability to judge what is correct to do. IDK. I wasnt expecting it. I wonder what today will hold...Still planning on a nice weekend and will deal calmly with whatever.
Thursday, March 31, 2011
March... maddening for both of us
March was a maddening flurry of activity and I was feeling real overwhelmed. I didn't know at the time that nothing was going to slow down either any time soon. I had started working again 3 nights a week 11-7, and with doing that, trying to get adequate sleep, the grueling routine of the trips an hour away to therapies three times/week, plus other doctor appointments, and then keeping a routine set for Nick with schoolwork and studying...well, I was getting "burn-out." I wasn't prepared for how busy I would be, and where it was exhilerating at first, I was now starting to feel the candle melting on both ends. Trying to keep house, and then dealing with Danny and his preoccupation about his lost cars, was taking it's toll. I had no time for quiet and myself. When I did have a spare moment I was consumed with "busy work" like countless applications to brain injury associations, state waiver programs and funding sources for better doctors and treatments. I also was trying to have Danny do at home all the things he was being taught in his therapies. No easy task. His attention span was short and he had little motivation.
I was still trying to get him to eat better and gain weight. He would eat one or two things on his plate and leave the carbs. He also was asking for salad alot, but there wasnt much to fatten him up in that. The rehab nurse said to try to push pasta, potatoes and such.
Danny was becoming clingy toward the end of March. He was very emotional, and wanted me to hold him all the time. He called me sometimes at work begging me to come home, and a few times he called and left voice mails on my phone but was calling me the name of his old girlfriend in Germany. As the month wore into April and May the mistaking me for other old partners increased. I found it hurtful, even though logic told me he couldn't help it.
Life was a true juggling act, my segments of time revolving through the air as I tried to balance more than I felt I could manage at times. I cried a lot. I cried sometimes for no apparent reason even. My days were peppered with spurts of anxiety and depression.
Mid month we stayed the weekend at his cousin Sherry's. She tried to work through the car thing with him, and we had to continue what I did at home...telling him he could not drive and hiding my keys. Saturday night Danny went outside saying he was going to drive my car. We knew he didn't have the keys so we weren't worried. Imagine our surprise when we heard my car start! Sherry ran outside to the driveway like a bat outta hell, reached inside, and out of the ignition she pulls a PUMPKIN CARVER! You know, the ones that come in those little carving sets you can buy to make your jack-o-lantern!!
I took Danny and Nick for haircuts at Walmart at the end of March. I was surprised he tolerated it well. A day... a week later, he had, and still has no recollection of it.
Physical, and later occupational therapies stopped at the end of the month, the therapists saying he'd reached all his goals with balance, strength, and mobility. Speech (cognitive) therapy would continue, indefinately as this was Danny's severe disability.
My journal entry from my Brain Injury Support site...detailing my desperation that month....
Wednesday, March 30, 2011
The CARS...and other lost items
On the balmy day of March 11, Danny casually asked me a question, which I chalked up to another confused delusion that wouldn't amount to much...."Where are my cars?"
"What cars?" I asked. What do I MEAN, what cars? He went on to say that he had 6 or 7 cars which he gave to someone to sell when he left for Germany...or did he just give them to this person to watch over, or fix? He went on and on about it later in the day. He named the types of cars they were...his dad's Bonneville, a Camaro, a Mazda RX7, a black Jeep Eagle and several others. Some of these I knew had existed in the past, and some I hadn't heard of.
The next day he started up again about it. He thought 2 of his cousins, who he incidently never had any relationship with, had them and had agreed to sell them...but he was given the first 400 bux and never a cent more. He was angry about it.
As the days wore on, he talked about it more and more. It became an obsession. He became radical about it. He started following me room to room ranting about it all day long. They wont give them back. They are hiding them. I am telling them not to give them back. I have the keys to them, etc.
We made calls to his aunt, uncle, sister, mom, cousins. They explained what happened to the cars they knew of...smashed, broken and junked etc. Danny wasn't accepting the explanation.
As time progressed and we moved through the month of March, more and more cars were added to the list, until there were about 13 to 16 of them, and ones that I KNEW he never had. A Lamborgini, TWO RX7s, two camaros, a TransAm, an Eclipse etc etc.
Danny went on from morning til night about this, only letting it rest sometimes for a day here and there, and when he was sleeping. He was becoming irate. He wanted to call the local police, the state police, his command post in the army, the CIA and FBI. He was on and off with his coat, ranting and complaining. He called other relatives....the ones he actually said HAD all the cars. They of course were clueless.
After awhile it became so that Danny would pile us into the car and make me drive all over the countryside looking. Maybe they were at his boyhood/teenage house...he remembered seeing them there. Or some garage where he used to live. Or on a mountainside near the "camp zone" (another mythical place from within his juggled memory). We visited more people asking questions. I felt so embarrassed for him as he told people about this. Most knew he'd been in a wreck and was injured, but they had no clue that he was this way. I would try to shoot them "looks" so Danny couldnt see me, to try to get them to realize he was so very confused, but that he actually believed what he was saying.
This went on for almost two months straight...daily. So many car rides to look for them, so many discussions and debates. I began to realize that altho his cognitive therapist and doctor said to try to "orient him to reality", this would only anger him and escalate the situation. I decided it best just to agree when possible. It wasn't like I was going to make him believe something that wasn't true...he believed it anyway! I was sooo exhausted and irritable from the constant search. He wanted to drive my car to look for them and I had to start hiding my keys all the time.
There were other items he was missing as well...like a credit card he insisted he had given me to hold for him that had a tiger on it...or sometimes he said plants were pictured on it. At times he thought it was an army debit card, at other times it was just a regular credit card. Then he came to the conclusion that he had used this particular card to purchase all "the cars" over the internet and that he was now so in debt because they were withdrawing the payments from this (apparently bottomless) card.
He wanted to know where his big black box of cds was (I never saw any of these things), and his military ID card...where was THAT? And his black cell phone...not the one he had at the time of the accident, but another one he insisted he had since the accident.
He eventually got so radical about the cars that I had to schedule an emergency appointment with a doctor. I was near nuts. I could imagine the folks in his family, shrinking when they look at their caller ID, KNOWING it was Danny to go over the whole car thing yet again. Family would ask "Has Danny been asking about 'the cars' today?" THE CARS, as it became rather affectionately called....well, I guess thats the wrong word.
As time went on he mentioned the cars less and less. He would discuss it more and more calmly. About two months ago (July) he was mentioning it barely at all. In August he would ask me when he started asking about cars that he had, and just today I asked him if he still believes he had a Lamborgini. He said "no"...I asked if he thinks its POSSIBLE he had one...he said "Yes...I'm still wondering if I could have bought them."
"What cars?" I asked. What do I MEAN, what cars? He went on to say that he had 6 or 7 cars which he gave to someone to sell when he left for Germany...or did he just give them to this person to watch over, or fix? He went on and on about it later in the day. He named the types of cars they were...his dad's Bonneville, a Camaro, a Mazda RX7, a black Jeep Eagle and several others. Some of these I knew had existed in the past, and some I hadn't heard of.
The next day he started up again about it. He thought 2 of his cousins, who he incidently never had any relationship with, had them and had agreed to sell them...but he was given the first 400 bux and never a cent more. He was angry about it.
As the days wore on, he talked about it more and more. It became an obsession. He became radical about it. He started following me room to room ranting about it all day long. They wont give them back. They are hiding them. I am telling them not to give them back. I have the keys to them, etc.
We made calls to his aunt, uncle, sister, mom, cousins. They explained what happened to the cars they knew of...smashed, broken and junked etc. Danny wasn't accepting the explanation.
As time progressed and we moved through the month of March, more and more cars were added to the list, until there were about 13 to 16 of them, and ones that I KNEW he never had. A Lamborgini, TWO RX7s, two camaros, a TransAm, an Eclipse etc etc.
Danny went on from morning til night about this, only letting it rest sometimes for a day here and there, and when he was sleeping. He was becoming irate. He wanted to call the local police, the state police, his command post in the army, the CIA and FBI. He was on and off with his coat, ranting and complaining. He called other relatives....the ones he actually said HAD all the cars. They of course were clueless.
After awhile it became so that Danny would pile us into the car and make me drive all over the countryside looking. Maybe they were at his boyhood/teenage house...he remembered seeing them there. Or some garage where he used to live. Or on a mountainside near the "camp zone" (another mythical place from within his juggled memory). We visited more people asking questions. I felt so embarrassed for him as he told people about this. Most knew he'd been in a wreck and was injured, but they had no clue that he was this way. I would try to shoot them "looks" so Danny couldnt see me, to try to get them to realize he was so very confused, but that he actually believed what he was saying.
This went on for almost two months straight...daily. So many car rides to look for them, so many discussions and debates. I began to realize that altho his cognitive therapist and doctor said to try to "orient him to reality", this would only anger him and escalate the situation. I decided it best just to agree when possible. It wasn't like I was going to make him believe something that wasn't true...he believed it anyway! I was sooo exhausted and irritable from the constant search. He wanted to drive my car to look for them and I had to start hiding my keys all the time.
There were other items he was missing as well...like a credit card he insisted he had given me to hold for him that had a tiger on it...or sometimes he said plants were pictured on it. At times he thought it was an army debit card, at other times it was just a regular credit card. Then he came to the conclusion that he had used this particular card to purchase all "the cars" over the internet and that he was now so in debt because they were withdrawing the payments from this (apparently bottomless) card.
He wanted to know where his big black box of cds was (I never saw any of these things), and his military ID card...where was THAT? And his black cell phone...not the one he had at the time of the accident, but another one he insisted he had since the accident.
He eventually got so radical about the cars that I had to schedule an emergency appointment with a doctor. I was near nuts. I could imagine the folks in his family, shrinking when they look at their caller ID, KNOWING it was Danny to go over the whole car thing yet again. Family would ask "Has Danny been asking about 'the cars' today?" THE CARS, as it became rather affectionately called....well, I guess thats the wrong word.
As time went on he mentioned the cars less and less. He would discuss it more and more calmly. About two months ago (July) he was mentioning it barely at all. In August he would ask me when he started asking about cars that he had, and just today I asked him if he still believes he had a Lamborgini. He said "no"...I asked if he thinks its POSSIBLE he had one...he said "Yes...I'm still wondering if I could have bought them."
Monday, February 28, 2011
Saturday, February 26, 2011
A SOBERING MESSAGE...my letter to the editor, Times News, Feb 2011
A sobering message
Published on Saturday, February 26, 2011
Dear Editor:
I would like to take this opportunity to thank all those involved in the early morning Dec 4 response and rescue to the vehicular accident in Tamaqua involving my boyfriend Daniel Peletsky. Namely, our local fire and ambulance, EMS crews, Hopes Collision and Towing and Pennstarr Medivac, for the quick work they all did in the rescue. I would especially like to thank Hope's and my employer Bayada Nurses for holiday kindnesses and compassion extended to my family and I.
It means more than you know. In addition I want to express my heartfelt thanks to St. Luke trauma center, ICU and intermediate critical care in Bethlehem, along with the nurses and doctors who worked tirelessly to sustain Danny until he could sustain himself without life support. Finally I need to thank the staff at Good Shepherd Rehab hospital in Allentown for the absolutely miraculous work they did, as Danny emerged from a two week coma, could not walk, speak, eat/drink or think, and after just over a month there, has come home, able to walk and talk and is on his way recovering from the most severe type of brain injury possible.
He is a different person, confused, and fighting an incredible battle to regain the memory and mind that he has lost. His life, and that of our families, has been altered forever. But he is a fighter, and knows we love him dearly, and he will regain himself over time ... not necessarily in the same capacity as he once was, but to my son Nick and I who love and need him, just having him home again and alive is a wonderful miracle given the fact that we nearly lost him a few times throughout the whole ordeal.
My important message here, besides my thankfulness to those who played a part in saving him, is that I hope everyone remembers NEVER to get behind the wheel of a car while under the influence of alcohol. Life is fragile and so easily snuffed out, and so many people just don't realize that serious consequences can happen. No one thinks it will happen to them, but it does.
People like Danny will have their lives altered forever, or maybe won't make it through at all. Danny and I are both so grateful that no one else was injured in this accident. Please remember Danny, and others who are injured or killed because of their poor choice to drink and drive, or because someone else made that choice and hurt an innocent person.
Lastly I want to thank family, friends, co-workers, as well as those to whom Danny is just a faceless person they may have heard about, for their endless prayers and encouragement through our ordeal.
With respect and thanks,
Kathleen Quinn-Farber, Daniel Peletsky,
our families and friends
Tamaqua
Friday, February 25, 2011
TRAVELING BY AUTOMOBILE
For the first month home, riding in the car was an ordeal to say the least! Danny would not stay seated, keep his belt on, would not stop talking, complaining, hollering, and GOD, trying to take the inside of the car apart. Thankfully my daughter's boyfriend Earl traveled with us those first few weeks. We put on the child safety locks and made him sit in the back. He would try to open the doors, and reach up front to grab the wheel. He took apart the back ashtrays, tried to disassemble the windows and handles. He would yell for us to stop and get him a drink with vodka in it, or a beer, and Earl would tell him there was vodka in the drink we brought along, which would quiet him awhile. He would yell "God DAMN it the bumps!" every single time we hit a tiny bump.
Then there was the getting out of the car. He would start by saying we had to stop and let him out. If I didnt do so immediately the asking would escalate to yelling. One time he was even hitting me over the head with a paper folder while I was driving, but there was no where to pull over!
He would get out and either just stand there, or start staggering all around pointlessly. I would run alongside him trying to convince him to go back to the car.
Some of the times he needed to stop to go to the bathroom. This was a time-consuming endeavor, for he could be in a public restroom anywhere from 15 to 45 minutes. What he was doing in there I can only imagine. There've been "accidents" he's attempted to conceal himself, and experiments with seeing how much paper toweling can go down a commode before it clogs and floods.
At the end of Feb. I started taking Danny by myself in the car to his dr visits and therapies. In the front seat he was finally over the "opening the door of a moving car phase" (except for twice) but there was much more to get into up front. My cd player hadnt worked for months, but each and every time, 3 times a week for over 3 months, he brought a stack of about 30 cds, and tried every one, complaining that it didnt work and then tossing it on the floor. It didnt matter how many times I explained the player didnt work, he continued the routine anyway. After the appointment, same routine.
After a week or two he added more activities to his maddening routine in the car, fussing with the radio and stereo, disassembling it completely from the dash, twisting wires together etc. He was forever on and off with the heat, up and down with the temperature, changing the direction of all the vents, adjusting the radio volume, the bass, treble, balance. Clicking and unclicking his seat belt. It went on and on, every moment of the trip, while still yelling every time we hit a bump and asking to stop at a bathroom.
Sometime in March car rides calmed down a tad and sometimes he would actually doze for a short while. He still played with all the controls in the car, but he was calmer. He soon started another habit in its place though, of having me pop the hood and trunk so he could "work on" his subwoofers and amplifier. They didnt work correctly, and eventually not at all, but we had to wait every trip while he worked on them....connecting and disconnecting wires, tightening bolts, switching connections...there were times it took an hour....and times when it was just too much to bare!!!
Then there was the getting out of the car. He would start by saying we had to stop and let him out. If I didnt do so immediately the asking would escalate to yelling. One time he was even hitting me over the head with a paper folder while I was driving, but there was no where to pull over!
He would get out and either just stand there, or start staggering all around pointlessly. I would run alongside him trying to convince him to go back to the car.
Some of the times he needed to stop to go to the bathroom. This was a time-consuming endeavor, for he could be in a public restroom anywhere from 15 to 45 minutes. What he was doing in there I can only imagine. There've been "accidents" he's attempted to conceal himself, and experiments with seeing how much paper toweling can go down a commode before it clogs and floods.
At the end of Feb. I started taking Danny by myself in the car to his dr visits and therapies. In the front seat he was finally over the "opening the door of a moving car phase" (except for twice) but there was much more to get into up front. My cd player hadnt worked for months, but each and every time, 3 times a week for over 3 months, he brought a stack of about 30 cds, and tried every one, complaining that it didnt work and then tossing it on the floor. It didnt matter how many times I explained the player didnt work, he continued the routine anyway. After the appointment, same routine.
After a week or two he added more activities to his maddening routine in the car, fussing with the radio and stereo, disassembling it completely from the dash, twisting wires together etc. He was forever on and off with the heat, up and down with the temperature, changing the direction of all the vents, adjusting the radio volume, the bass, treble, balance. Clicking and unclicking his seat belt. It went on and on, every moment of the trip, while still yelling every time we hit a bump and asking to stop at a bathroom.
Sometime in March car rides calmed down a tad and sometimes he would actually doze for a short while. He still played with all the controls in the car, but he was calmer. He soon started another habit in its place though, of having me pop the hood and trunk so he could "work on" his subwoofers and amplifier. They didnt work correctly, and eventually not at all, but we had to wait every trip while he worked on them....connecting and disconnecting wires, tightening bolts, switching connections...there were times it took an hour....and times when it was just too much to bare!!!
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Umm, the other thing is - even if he act's like a toddler and you have to give him guidance, tryy to remember who he was and hold on to that... he'll need it later and as he recovers. People that need help don't want to need help, that's for sure.
You know that. I'm glad you reach out to us.