THANKSGIVING...

    I had Thanksgiving dinner at my house. My mom had invited me "and the kids" as she doesn't approve of either Danny or my daughter's boyfriend. The relationship with my mom has been in turmoil since I was a preteen, and her narcissistic behavior has torn me to shreds for years. Its a long story that does not belong here, but anyway, I told her I was having my own dinner in my home for all the members of my family and friends and that she was welcome. I received an onslaught of nasty letters...well...I have grown kids and traditions to start and keep, and there's no time left in my life for senseless head games.
    Danny has the mistaken belief that he has spent Thanksgiving with his aunt and uncle every single year for years. In truth that is false, but the week before Thanksgiving he got into a big discussion with his neuropsychologist about it, and about having me drop him at their house for dinner...unannounced I might add...because he is "expected" to be there. The Dr tried talking to him about "appropriateness", which Danny has a huge problem with. Dr. D. explained that you wait to be invited somewhere, and you never assume people are going to do things only because you expect them to. We finally hammered out a plan of action where we agreed Danny would call and ASK first, and that if ok, I could run him a half hour away to their house in the morning, but would be unable to pick him back up before our own dinner. He also needed to call early enough in the week. Well, he mentioned it alot during the week, but ultimately waited until 9:30pm Thanksgiving eve to call and ask. His aunt was caught off guard, and said their dinner was at 1pm and since mine was at 3pm maybe it wouldn't be the best idea. Thats what Danny told me was said anyway.
    My dinner went nice. Its always a bitter-sweet thing when family relationships and situations are out of balance, but it is what it is. I tried to present a beautiful dinner table for my family and my friend Barb and her son and grandson, who also came. I am always amazed afterwards about how much time and effort we put into these holiday event out of love for our families. Two full days and nights of cooking and preparing and another 6hrs of dishes and clean-up, for a dinner and visitors that lasted around two hours. Same thing at Christmas. But at least this year I tried to be relaxed as possible and enjoy my company. Never mind that Danny's inappropriateness caused him to attempt to have dinner in a dingy white T-shirt with a hole in it and sweat pants he had on for 3 days...I made him go change...and he sat through dinner with a big wad of slightly blood-tinged tissue paper stuffed into and hanging out of his right nostril. Oh well...

    The day before Thanksgiving a package arrived for me. It was from one of my friends in the brain injury support group...an older woman from Oklahoma whose husband got his brain injury almost 4 mo. after Danny got his. She is a wonderful sweet woman, who like most of the girls in our group have gone and still are going through all sorts of assorted behavior, cognitive and physical problems with their brain injured loved ones. Her husband was strikingly similar to Danny in some of it, and her and I are very alike as people too I believe.  Well, thinking the package contained a book to read since she sent one a few months earlier, I opened it to find a cute little hand crafted note card. It read...


                                 "Just for you Blue-so you will
                     remember that you are loved and cared
                     for.  This has been broken and mended
                    as all of us sisters have been...but I
                     wanted you to have it as I have no
                         truer sister...love you, Sybil"


My eyes welled up as I lifted a beautiful statuette out of the box. I felt an odd awareness that this was one of those moments that will stand out in my heart more so than most. The figurine was two angels facing eachother, and was inscribed...


"Some sisterhoods don't happen at birth...but grow in the hearts of people who completely understand each other."

How remarkably beautiful and appropriate...in the support group we call ourselves a sisterhood, and we understand this journey we are on, and each other, as no one else possibly can. Over the past many months some of us have grown closer than others, and have found so many more similarities between us...in our lives, experiences, hardships, traumas.... 
One wing lay in the box...obviously had been glued but came off again during shipping. We ARE angels with broken wings...but with love and patience and support, can mend ourselves and each other. 
It was ironic that the wing was off. It seemed almost as though there were some message coming from somewhere that was meant to be heard. There was definately a lesson therein. 
My first thought was "super glue"...the easy, quick and fail-safe solution. My son ran for some at the store for me. Well, the surfaces wouldnt even slightly bond...it was as if I had put a drop of water there and expected it to work like glue. Ok, so the quick easy fix doesnt work. It doesnt work when we try it in real life either. Life requires work in order to progress, to change. So out came the slow-drying Elmers School Glue. Long story short, I glued and waited, over and over again. It seemed to get tacky and stick, and then with the slightest movement as I tried to set the figurine down, off came the wing again. As it ended up, I actually sat and held the wing in place for a full hour until it was dry enough to set down, and then I pain-stakingly balanced it on the counter top and left it alone even longer. Hours later, I applied another layer of glue. It is fixed, but not without much patience and care, some level of intense frustration, and a great deal of perseverance. All the while, I was aware of the lesson being taught about life.
My wonderful friend made my Thanksgiving holiday. I cant even reMEMBER when I've received an unexpected gift, and one so meaningful and very precious. Thankyou Sybil for all you've taught...

Devastated :-(

TUES. NOV.15    7:00 am


Yesterday at quarter to 5pm I got the call from ReMed. I was napping so it was a voicemail.

Danny was not accepted into the inpatient brain injury program.

I dont know why, and wont until I speak with them later this morning.

All I know is that I am absolutely DEVASTATED! I had all my hopes pinned on this, all my eggs in one basket. I had so much confidence that this would be something in Danny's life to finally help him...that just MAYBE there was somehow a plan by God for having him acquire a brain injury. His doctors and I have spent the past almost 2 mo. convincing him with all our might that this is needed and can help him. He finally WANTS to go.


 Idk if its cuz he talked abt wanting to "hurt" or beat up ppl (but I would think they should be somewhat accustomed to brain injured ppl talking irrationally) or if maybe they feel his psychiatric problems are too big. Maybe they think he needs psychiatric treatment before brain injury rehab will work for him. They are the experts...they know, not me.

The message also said that they only received the requested medical records from 1 of the 3 places they asked for them from. None from the acute trauma center and none from the outpatient rehab. That really pisses me off. It irks me that as a nurse I always prioritize and do the quickest most efficient work I can knowing ppl's lives are being affected....but what the hell gives?  I'm putting in a call to both later as well as Dr. D the neuropsychologist. GOD, there's GOTTA be something someone can do.


I didnt sleep at all last night...cried a bit, just kept wracking my brain, wrestling my fears, contemplating my next move. Wondering if its something I did or said to ruin it. Maybe they don't like their facility mentioned in my blog....I dont know :-(


 Danny finally WANTS to go, and I gave him the news and he still keeps saying "WHEN I go this" and "WHEN I go that". Its thrown him for a tad of a mental loop I think. He was going on abt that they HAVE to take him cuz he has a brain injury and thats what they are there for...to help him. He said he WANTS them to help him.  I explained that "no" they dont have to take him. They use much criteria to make the decision and apparently something just isnt what they want. But he doesnt understand reason...his injury puts his mind on a single-lane one-way track. At one point last night in aggravation I even raised my voice and blamed his dumb talk during the interview for ruining his chance of acceptance. I know he's blameless in reality...he cant help the way he comes across...

I am really scared, cuz we cant go on this way. I dont know what to do or who to call. I want to "FIX" this...the exact words Danny said to me this AM..."Kathy you've got to "fix" this, and make it so I can go on living and get help"  It made me cry.


I will know more later and they will give me their recommendations I guess. And then I'll finish this blog...

I feel so down....




5PM


so I talked to Annawyn. My suspicions were mostly...well almost exactly correct. Because of Danny's "fighting" attitude, they consider him to be a possible danger to the other brain injury patients. This hurts me cuz I know he is no danger. Danny "mouths off" around those he is close to, but put in a position of therapy and help, I am absolutely certain he is no danger to anyone else. I know him better than anyone else on this earth. He does not want to be this way. He cries. It is not fake. It is not false.
Also, because the outpatient  dept didnt send the records to ReMed, they just didnt have a clear idea of what is going on exactly. ReMed told me that as of right now, the answer is "no", but that doesnt mean the door is CLOSED. I talked to Dr. D. this evening and he plans to make sure the records get there STAT, and also to speak with the team at ReMed and give his view. Dr. D. knows how this could help Danny, and that it is definately worth a shot. I mean, if Danny would cause a problem, they could call me and I would be there in a heartbeat to get him. His life is going to be Shit without intervention at this point. I am just praying and hoping and wishing and relying on some higher power to help him seek, have, and make use of this gift. ReMed is a wonderful facility. I respect them immensely. I know if Danny were given the chance, it is worth a shot. This is a human life in the balance.... 

Sadness...

    Of course it's PMS time for me, and I AM overly emotional....but today n tonight I feel a deep sense of sadness....for Danny. He just seems so lost n confused. We saw CeCe today, the wonderful nurse at the psychiatrist's office, so that she can call in refills on his meds. She is a sweet older woman...perhaps 65 or so...charming, loving and patient. She's had many encounters with Danny in the past months, watching him progress from a somewhat zombie-like person, slowly through his stages of awakening and changing. She, like me, appreciates his good heart, his charm, humor, and can make light of his quirky behavior. But things have worsened, and today, after a long conversation with me abt 2 weeks ago, she saw and understood what the real essence of what is going on here is like. She pulled no punches...tried reasoning with him. Long story short, she believes, as do I sometimes, that he really has no control at all over his feelings and actions. I know he is so tired of not remembering day to day things, of not remembering where he was, what dr he saw or why, being told he cant do this and cant do that. He has been suffering great anxiety and stress, and takes it out on those around him. I have said before that i'm at my breaking point....yet I LOVE him. I GOT a glimpse before the accident, of who and what he could be....and I know all this wild talk and threatening babble, and so on and so forth, CANT be who he really is. I am on eggshells each day, not knowing what reactions or actions or emotional outbursts to expect. I want a future with him, yet deep down I feel so convinced that maybe he is too far gone....that he is really not who I thought or want him to be.


    He wants relief. He begged CeCe to make it that he could have some sort of sedative...that he's afraid he will hurt someone. Really and truly I dont see that happening. He talked tonight about going out to a bar for a few drinks and to shoot pool. Its a hard thing to not be able or allowed to do anything that he used to do....yet the red flags wave in my head and I'm scared. He's been asking for me to go out with him one night.  I would LOVE to go shoot pool and listen to music...but i'm not just yet comfortable going into a bar or club. I dont want to drink anymore, and I dont know if I want to even be in that atmosphere...the atmosphere where we last were the night of his accident. The ppl there and the surroundings just are creepy to me now. I would love to go dancing with him. I WANT him to be able to do what he enjoyed. But I'm scared and confused.


    He wanted money to go out tonight, and before it escalated into an argument, I went and got it out for him. But he is lying up on the bed. I know he really doesnt want to go, and he knows it too. He is just all over the place with everything. I am praying this rehab comes through soon. I don't think either of us can take much more.
I wish there were more I could do for him. All I can do is listen, keep my mouth closed, and hold him tight....

ReMed Intake Interview and Tour

    Yesterday was the intake interview and tour of ReMed. Danny was up til almost 1:30am on the computer but for a change got up when called and got ready. How nice! We were ready and waiting when his cousin Sherry arrived to pick us up. The drive was nearly two hours. Danny of course talked most of the way.
    The meeting took place not at the actual facility, but at their administrative offices. We were taken into a board room, offered something to drink, and shortly there after Annawyn, the admissions coordinater, came in. She and I had spoken on the phone and emailed several times in the past weeks. Funny how it is when you imagine in your mind how someone might look just by their voice and what they do, but then they turn out to look nothing like that at all. I had envisioned a smallish woman in her forties with dark blonde straight hair, a heavily made-up face and an overly professional air about her. Annawynn was tall and dark, very pretty but so natural looking, and had a deep soothing voice. I could sense she was a very honest and down to earth person, which was the one thing I kinda picked up on accurately through our emailings and conversations. She briefly explained the program and admission process, telling us the typical stay is 90 days, gave me a packet of literature, and emphasized to Danny that the program is fully voluntary. Then we waited for Scott, the clinical director, who stepped in a moment later. He was friendly and warm, but calm and soft spoken. He conversed with such patience. I felt so nervous for Danny, but yet my mind was all over the place (a quite common thing for me as of late) I searched my mind for an actor Scott resembled to me....Richard Gere...yes, that was it.
    Scott talked to Danny and did an in depth history, mostly of his bi polar and OCD issues. As the conversation went on I found myself fearing that Scott was going to form an opinion that Danny's issues were too complex and of a more mental nature and that he would not be appropriate for brain injury rehab. Danny's latest fixation is about "fighting"...wanting to pick fights with others and even getting into "professional" fighting...but they are fixations, lasting usually about two weeks, and then its on to something else...but he fixated on that during the interview as well. At one point Scott noted that one of his responsibilities is to protect the other brain injury survivors in the program and that no one perceived as a "danger" to them could be admitted. What was so frustrating to me though was that Danny is a "talker" and says alot of things, but inside he is just a pussy-cat. I told Scott that in almost three years together I have never seen him be anything other than friendly and sociable with others. Sherry agreed. Danny did indeed have fighting problems in his school years, but many boys do. His only acts of aggression were aimed at me, being closest to him and maybe being the one trying to direct his actions and activities throughout the brain injury healing process. I also explained that Danny's "hitting" when directed at me, was a jab in the ribs or occasionally the side of the head. It was almost exclusively unprovoked (although Danny felt it WAS provoked). I didn't want Scott to picture Danny dragging me around by the hair and throwing punches or physically hurting me. The emotional hurt and threats when he is spealing off at the mouth, is what bothers me, and I know is very wrong and harmful. I also know from my association with the other survivors families, that this behavior is very common in about half the cases, especially if one had aggression problems in the past.
    Scott went over his drug and alcohol history as well. Danny talked alot about wanting Ativan (another more recent obsession) and complained over and over that he needs to have that given to him for the anxiety he feels come over him multiple times a day. Scott explained that it is their policy basically to avoid the use of benzodiazepines and such, and instead teach coping skills. I liked the way this place thought! Danny was on his way to real addiction problems a couple times in his life, and I feared him falling into that again. As Danny talked more to Scott, and later to Annawyn during the tour, I felt such a sense of sadness for Danny. 
The coping skills he needed for real life were never taught to him and he reminded me of a child who was so very frightened and had a tough shell on the outside...a wall all around him, to make sure he didn't leak out and that others couldn't get in. The confusion and loss of self from the brain injury was compounding that.
    I had emailed Annawyn an in depth description of all that has happened and what was going on since, and she had forwarded it to Scott, so I kept pretty quiet during the interview and allowed him to get all his perceptions straight from Danny. I filled in here and there with pertinent information. Danny has been a pro at talking and acting with doctors and therapists in the way he thinks they WANT him to, but today he was very honest and true. It scared me in a way, yet I was so glad. The time for honesty was upon us.
    Scott wrapped it up by explaining more about the program and that all the disciplines there such as psychology, OT, PT, medication management etc, come together to work on the whole person. There would be medication trials, formal neuropsychological testing, work on becoming motivated and independent and teaching of coping skills. Danny flip-flopped back and forth between saying he wanted the help and did not. The length of the stay was an issue. And at one point he got a very flippant attitude and laughing, told Scott this would just be a "vacation" for him and an opportunity to "have fun." It was one of those moments I wanted SO to shove a sock in his mouth.
    We followed Annawyn in the car to the facility for the tour. The grounds were spacious and there's a big pond with fish. She kinda warned us before we went in that the facility is an old farm house actually, and it isn't fancy. Inside we followed her through halls and poked our heads into rooms. She was right. It was very modest...quite plain really, but clean and organized. She showed us a room with a computer at which point Danny asked a million questions about being allowed to use chat sites etc. I already knew what was going through his mind...enough said. We saw a bedroom and she explained that you had to bring a TV if you wanted one, and we saw kitchens for staff and one for patients who are safe enough to cook when allowed. She told us about the meals and that extra snacks had to be brought yourself...haha, I was thinking about where they would store a two week supply of 84 Hershey bars since you can't have food in your room. That habit would have to come to a screaching halt as far as I was concerned...the focus is on healthy eating. They did have smoking areas though...I was hoping he might quit while there. In one area there was loud yelling and cursing from a patient and it bothered Danny. He complained and said that would agitate him and cause him to fight. Annawyn calmly went over coping skills...he would have to remove himself from the area if it troubled him. He said he cant do that and she explained again and reemphasized that its all up to him...if he wants the help then he will try the things told to him, and if he doesn't, thats his choice as well. It is time to change even as a person and start to find productive ways to live life. I am acutely aware that this opportunity is a huge blessing dumped into his lap. It could change his whole life in so many ways...I hope and pray he lets his walls be torn down.
    Monday the board meets to decide if he is accepted, and then the Pa Head Injury Program approves the grant money, and then its just a matter of waiting for a bed to become available.
    The three of us stopped at Boston Market to eat on the way home. Conversation was light. On the way home Danny had a yelling episode directed at me, which I ignored to the best of my ability.
    Later at home, his memory of the day was already sketchy. He didnt remember where or why we were there and kept saying that all along he had no idea it was a place for brain injury but instead thought it was a drug and alcohol rehab. I think its the word "rehab" that keeps making his mind shift that way. Anyway, today we see the neuropsychologist and cog therapist in Allentown, and will go over it again I assume. I hope he gets up and is willing to go today...