Spent some precious time w/ Danny @ his mom n sister's, talking n holding eachother.
Funny how Danny has always been my knight in shining armor since he came into my life...he always instinctively knew what the right thing was 4 me 2 do when it came to me n my family n things like that,n he helped me in so many ways with things, habits, and opening up abt traumas in my life that I'd held secret. No one will ever ever mean more to me becuz of those things.
Even w/bipolar and now severe brain injury, and all the awful behaviors and attitudes they carry w/them, he says we both know, that he can no longer come before my children and he knows its wrong and can't do that anymore.
So anyway, I plan to continue to help him getting places and in any other way I can, and we arent cutting ties...neither of us wants or is ready for that...and to be honest, neither of us is sure where exactly we really stand right now or what this is...and how important IS it anyway? Whats important is both of us having the courage to do the right thing even tho its so very painful. Not everyone can say or do that...
,,,,so I guess its just one day at a time.
Wednesday, December 21, 2011
Monday, December 19, 2011
so this is it
Brain injury has stolen the person I love and changed his life and mine.
We are no longer living together...we may not even be together at all.
I was holding myself in one piece somehow until tonight when we talked on the phone. Now i'm just crying and crying.
It hurts so bad. Nothing in my life has ever hurt like this.
I had to draw a line between what is more important, and that has to be my family. I dont want to lose Danny, but we cant live together either in the current state of things.
He is no longer here, and my heart is aching...but I have to put it all in a Higher Power's hands.
A year ago I was sleeping alone and crying because he lie in the hospital close to dying. Now 5 days before Christmas, I am without him again...and crying. I remember thinking the night of his accident when he was so critical, "If I had only known you were leaving I would have held you a little longer...a little tighter last night." Now i'm thinking the same thing. I would have kept my head on his chest all night and listened to his heartbeat. Instead, we were quarreling about some silly shit.
We both know that rationally thinking, it needs to be this way...but our hearts say a whole different thing.
I know I will get to see him, and probably even be taking him where he needs to go, but everything will be different now. And all I can think about right now is our happiness and funny times...our hours cuddled together making silly jokes and laughing...how safe I felt in his arms. How we understood each other without even speaking. And even how we argued with the same amount of passion as there was in our love.
Life and its twists and turns is unfair, and yes, I am angry about it. I am angry at brain injury and how it has fucked up so much worse something that was already so hard to try to overcome...but we WERE.
I don't know what to do with these feelings...the love, the anger, the sadness and the fear. I am just trying to hang on. I couldn't sleep last night, and tonight I've been to bed twice, and then the sobbing hits me. So I am awake...
I didn't think it would turn out this way...
Thursday, December 8, 2011
A YEAR AGO...
Sunday Dec. 4th was one year since Danny's accident. A year ago I was at his bedside night and day, fearing the worst and hoping for the best. I was given the gift of a life experience during which I was able to witness the miracle of near death and the journey back from it. Yes, it was a gift. My love and prayers were undying. I learned about faith, and realized for the first time in my life what love really entails. As things improved and we traveled the rocky road of early recovery, I felt in my heart more and more, that everything would be ok in the end.
My faith is waning at times... my patience, and on some days here and there even my love.
Traumatic brain injury changes brain chemistry...some of it anyway. In the past months we have switched from making slow progress, and have slipped onto a downward spiral. Danny's mixed bag of predisposing issues further complicated by brain injury, has become a nightmare that no one seems to be able to rescue us from.
His lack of motivation has been a detriment. The medications which helped him so much over a year ago no longer work. Its become a routine of trudging from doctor to doctor hoping for some light to be shed. The attitudes caused by his personality disorders, and the attitudes caused by brain injury, are blended together and nearly inseperable. He needs psychiatric guidance, perhaps before additional brain injury treatment has any hope of being successful...but by the same token, its likely that without brain injury rehabilitation, he won't have the ability to absorb any of the psychiatric help offered.
I don't know what is going on alot of the time. It has all become so complicated. So often I don't even recognize this person that brain injury has made Danny become, and I really feel sometimes that he no longer recognizes me as well. He knows that our near two years before the accident happened, but it is sketchy and sometimes only recalled by me giving reminders and clues...then it seems to come back as a memory. But I feel as though he is "on the outside looking in" alot of the time and can not really feel, or remember how we felt. Sometimes I feel I've become a stranger to him, or a "new" person and that what we had is gone. He continues living in the past and pining for an ex in Germany who has gone on with her life and writes asking me to please have Danny stop emailing and calling. Its painful for me feeling as though she is who he remembers most. And where our age difference made no difference to him before, he is looking at it at absurd now. He says it doesn't matter much to him, but he worries about what others think.
In the past weeks we have been discussing perhaps moving on. He feels he is wasting my time and my family's, and that I should be looking for someone my age who is good enough for me, unlike he is. And he in turn could eventually move on and maybe start a family of his own. With his aggressive and anxious behavior increasing in the past month, I actually have agreed with him on the fact that we should just call it quits. But then we talk further and end up in tears...both he and I, and don't know how we would actually go through with a break-up, even if it WAS for the best. Danny has always been a jagged pill to swallow, but I am so in love with the golden parts of our relationship...the closeness, the conversation, the crazy silly fun we have. We've always understood each other and make each other laugh. Yes, he also drives me insane...but I love his heart and soul. I feel deep down we belong together.
However...things are not going well for him. He is at a stuck point. One of his doctors and I convinced him to hospitalize himself last week to see if his medication could be adjusted, which they did. He has been much better since, but continues toying with the idea of letting each other go...maybe getting an apartment with his mom. I would continue getting him to his doctors and all I suppose since his family has no means of doing it. I just don't know what's next. His neuropsychologist is still pulling for the brain injury rehab to accept him. He really needs it. His delusioned thinking tells him he can just pick himself up, dust himself off and walk into the sunset.
An added complication is that he was approved for disability, and with a small wad of back-owed money he wants to buy a car, even though he does not have a license and won't be able to get one for some time. His checks come in my name and I am faced with monitoring his spending. How in the world can I do that? I may have to have someone else appointed to do that.
He is the victim of a double-edged sword...
Traumatic brain injury is a monster who can't be figured out, and I fear never conquered. All I can do now is continue to pray for guidance.
My faith is waning at times... my patience, and on some days here and there even my love.
Traumatic brain injury changes brain chemistry...some of it anyway. In the past months we have switched from making slow progress, and have slipped onto a downward spiral. Danny's mixed bag of predisposing issues further complicated by brain injury, has become a nightmare that no one seems to be able to rescue us from.
His lack of motivation has been a detriment. The medications which helped him so much over a year ago no longer work. Its become a routine of trudging from doctor to doctor hoping for some light to be shed. The attitudes caused by his personality disorders, and the attitudes caused by brain injury, are blended together and nearly inseperable. He needs psychiatric guidance, perhaps before additional brain injury treatment has any hope of being successful...but by the same token, its likely that without brain injury rehabilitation, he won't have the ability to absorb any of the psychiatric help offered.
I don't know what is going on alot of the time. It has all become so complicated. So often I don't even recognize this person that brain injury has made Danny become, and I really feel sometimes that he no longer recognizes me as well. He knows that our near two years before the accident happened, but it is sketchy and sometimes only recalled by me giving reminders and clues...then it seems to come back as a memory. But I feel as though he is "on the outside looking in" alot of the time and can not really feel, or remember how we felt. Sometimes I feel I've become a stranger to him, or a "new" person and that what we had is gone. He continues living in the past and pining for an ex in Germany who has gone on with her life and writes asking me to please have Danny stop emailing and calling. Its painful for me feeling as though she is who he remembers most. And where our age difference made no difference to him before, he is looking at it at absurd now. He says it doesn't matter much to him, but he worries about what others think.
In the past weeks we have been discussing perhaps moving on. He feels he is wasting my time and my family's, and that I should be looking for someone my age who is good enough for me, unlike he is. And he in turn could eventually move on and maybe start a family of his own. With his aggressive and anxious behavior increasing in the past month, I actually have agreed with him on the fact that we should just call it quits. But then we talk further and end up in tears...both he and I, and don't know how we would actually go through with a break-up, even if it WAS for the best. Danny has always been a jagged pill to swallow, but I am so in love with the golden parts of our relationship...the closeness, the conversation, the crazy silly fun we have. We've always understood each other and make each other laugh. Yes, he also drives me insane...but I love his heart and soul. I feel deep down we belong together.
However...things are not going well for him. He is at a stuck point. One of his doctors and I convinced him to hospitalize himself last week to see if his medication could be adjusted, which they did. He has been much better since, but continues toying with the idea of letting each other go...maybe getting an apartment with his mom. I would continue getting him to his doctors and all I suppose since his family has no means of doing it. I just don't know what's next. His neuropsychologist is still pulling for the brain injury rehab to accept him. He really needs it. His delusioned thinking tells him he can just pick himself up, dust himself off and walk into the sunset.
An added complication is that he was approved for disability, and with a small wad of back-owed money he wants to buy a car, even though he does not have a license and won't be able to get one for some time. His checks come in my name and I am faced with monitoring his spending. How in the world can I do that? I may have to have someone else appointed to do that.
He is the victim of a double-edged sword...
Traumatic brain injury is a monster who can't be figured out, and I fear never conquered. All I can do now is continue to pray for guidance.
Friday, November 25, 2011
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...
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...
Tuesday, November 15, 2011
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....
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....
Wednesday, November 9, 2011
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....
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....
Friday, November 4, 2011
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...
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...
Sunday, October 23, 2011
DELAY
Danny's cousin Sherry was not able to get Thursday off to go to the intake appt for ReMed, so I had to reschedule. They will let me know a date during the first week of November. I could have gone anyway without Sherry in order to speed things along, but I really want her to go. She seems to have a supportive way with Danny...an ability to "diffuse" some of his talk, and besides, she's his family, and I think its important she be involved. His sisters and mom, well, to be honest I havnt made them aware of this new turn of events. I have my personal reasons. When he is set to go and all plans are in place, then i'll inform them. In actuality, its been only myself and my family dealing with this, and his immediate family does not call or ask how he is doing....I just feel if thats the case, then I dont owe a blow by blow description of every detail as it happens. I feel very very alone in this. I wanted to bring Danny back home, and still want him here. I do not want to lose him, or the relationship, or put him outta my life.......but if things reach the point of no return, then I may be forced to place him in their laps. I almost feel as tho sometimes, that they somehow KNOW it may very well come to this, and are kinda "hiding" from this. I cringe to think of his future once that happens, but I cant put him before my family. My mom got wind of the police incedent, and some of the other goings on, and altho she doesnt understand, she IS right in her feelings I believe. ...
So I'm hangin on...we are all hanging on.......
So I'm hangin on...we are all hanging on.......
Thursday, October 20, 2011
http://www.rogercoomer.com/
Within the first two weeks after Danny's accident, I found my way to Daily Strength (http://www.dailystrength.org), a website offering support group forums for probably hundreds of diseases, conditions, situations, bad habits, etc. I found there the brain injury forum. At first I was of course a stranger, posting random questions to find out if behaviors Danny was having were normal or not. Its very scary when you have no clue what to expect. I always received replies to my questions, but not just impersonal answers...the folks offered encouragement and support. They were real friendly, and of course in many various stages of their brain injury journeys, so I could relate both to what I'd already experienced so far, was seeing at the present, as well as could be better prepared for the coming changes too.
After awhile I began to develop closer connections, especially to the people there who were the wives, girlfriends, families and caregivers of the brain injured. Although I received support and information from the victims themselves, when communicating with wives and caregivers etc, the connection we all felt was amazing. It was like finding people who "get it" in a world full of people who DONT! The behavior problems, mood swings, memory loss, etc etc etc....we all were going through almost the exact same things in one way or another. We understood one another in ways no one else would or COULD!
We understood the "mourning" for a person who is gone but yet still here in the same body (or a very broken body for some) and how you are trapped in a mourning "limbo" because there's no real closure. We understood the extreme exhaustion many of us have because the caretaking of a brain injured person is ceaseless and emotionally draining. "Regular" people dont "get" this, and may think its just a matter of making sure someone is clean, fed and doled out their medication. In actuality, even when all the physical things are healed, the repercussions mentally of brain injury reach into every aspect of our lives. Many of us, myself included, have gone literally days with practically no sleep, and have had to follow, chase, protect, plead with and even physically battle, our brain injured loved ones day after day. Day in and day out listening to confabulated stories and delusions, hiding keys and other harmful objects all around the house until we ourselves cant even remember where we have put them, playing referee between the brain injured and the rest of the family whose last nerve he may be on. Pleading with them to take their meds, eat right, write things down, check the calendar, take a bath, go to their therapies...
They understood the hurt of someone not remembering who you are even when you have been the ONE there for them through it all...and they understood the anger and resentment of husbands and boyfriends being stuck in the past and missing old partners or lifestyles. There's just SO much more...but the point is...they understood like no one else...like you cant know unless you live it every day of your life.
Eventually we "girls" formed our own private group where we could vent, share, laugh, cry, scream, and whatever else, more freely. We call ourselves a "sisterhood" and thats what we are. We can write, and many of us are in phone contact, always knowing someone who understands is at the other end of the line.
Enter my friend Kiki. Her husband left the house for work one spring morning this past April, and just a few moments later answered her front door to a woman asking if Kiki knew who the man lieing crumpled at the end of her driveway was. It was Kiki's husband Roger. It is assumed but not known for sure if he was hit by a car. No one has ever come forward as a witness or perpetrator. Very sad. Roger wasnt fortunate enough to make the remarkably rapid recovery Danny has. He lie for 4 mo in a coma, and after 2 mo more "wakeful" is just now responding more appropriately, trying to speak. He is immobile. More tragically, he has been riddled with infection after infection all along, and for every step forward he's gone several steps back. He is too healthy for a hospital and not far enough progressed to be eligible for brain injury rehab. His option has been nursing home care, and frequent hospital admissions all through the way.
Kiki is a special woman. Her and Roger adopted two special needs children and had a full and very busy life. Kiki is one of those people who is always doing for someone else. She has devoted every spare moment to being with Roger and using stimulation therapy on him daily...exercising his extremities, playing favorite music, talking and reading. She has been tireless. Kiki is special to me because I feel she gives gives gives soooo much to others, but is struggling terribly herself. She has spent several hours talking on the phone to both myself and Danny. She has a patient loving way. It literally broke my heart to realize she was so kind in giving herself, her thoughts, love, advice, support to US, while she was suffering the most horrific crisis herself!
Kiki needs to bring Roger home. She will need help with his care since he does not move. She needs a vehicle that accommidates a wheelchair, and a special exerciser for his muscles. She needs help with all of this. Financial help. I am hoping that you can see and feel the wonderful nature of Kiki, and visit the website for Roger. Pass it to your friends as well. With the tiniest donations from folks who care, it will add up to help my friend Kiki and her husband Roger....Thank you from the very bottom of my heart...
the link is.....
www.rogercoomer.com
After awhile I began to develop closer connections, especially to the people there who were the wives, girlfriends, families and caregivers of the brain injured. Although I received support and information from the victims themselves, when communicating with wives and caregivers etc, the connection we all felt was amazing. It was like finding people who "get it" in a world full of people who DONT! The behavior problems, mood swings, memory loss, etc etc etc....we all were going through almost the exact same things in one way or another. We understood one another in ways no one else would or COULD!
We understood the "mourning" for a person who is gone but yet still here in the same body (or a very broken body for some) and how you are trapped in a mourning "limbo" because there's no real closure. We understood the extreme exhaustion many of us have because the caretaking of a brain injured person is ceaseless and emotionally draining. "Regular" people dont "get" this, and may think its just a matter of making sure someone is clean, fed and doled out their medication. In actuality, even when all the physical things are healed, the repercussions mentally of brain injury reach into every aspect of our lives. Many of us, myself included, have gone literally days with practically no sleep, and have had to follow, chase, protect, plead with and even physically battle, our brain injured loved ones day after day. Day in and day out listening to confabulated stories and delusions, hiding keys and other harmful objects all around the house until we ourselves cant even remember where we have put them, playing referee between the brain injured and the rest of the family whose last nerve he may be on. Pleading with them to take their meds, eat right, write things down, check the calendar, take a bath, go to their therapies...
They understood the hurt of someone not remembering who you are even when you have been the ONE there for them through it all...and they understood the anger and resentment of husbands and boyfriends being stuck in the past and missing old partners or lifestyles. There's just SO much more...but the point is...they understood like no one else...like you cant know unless you live it every day of your life.
Eventually we "girls" formed our own private group where we could vent, share, laugh, cry, scream, and whatever else, more freely. We call ourselves a "sisterhood" and thats what we are. We can write, and many of us are in phone contact, always knowing someone who understands is at the other end of the line.
Enter my friend Kiki. Her husband left the house for work one spring morning this past April, and just a few moments later answered her front door to a woman asking if Kiki knew who the man lieing crumpled at the end of her driveway was. It was Kiki's husband Roger. It is assumed but not known for sure if he was hit by a car. No one has ever come forward as a witness or perpetrator. Very sad. Roger wasnt fortunate enough to make the remarkably rapid recovery Danny has. He lie for 4 mo in a coma, and after 2 mo more "wakeful" is just now responding more appropriately, trying to speak. He is immobile. More tragically, he has been riddled with infection after infection all along, and for every step forward he's gone several steps back. He is too healthy for a hospital and not far enough progressed to be eligible for brain injury rehab. His option has been nursing home care, and frequent hospital admissions all through the way.
Kiki is a special woman. Her and Roger adopted two special needs children and had a full and very busy life. Kiki is one of those people who is always doing for someone else. She has devoted every spare moment to being with Roger and using stimulation therapy on him daily...exercising his extremities, playing favorite music, talking and reading. She has been tireless. Kiki is special to me because I feel she gives gives gives soooo much to others, but is struggling terribly herself. She has spent several hours talking on the phone to both myself and Danny. She has a patient loving way. It literally broke my heart to realize she was so kind in giving herself, her thoughts, love, advice, support to US, while she was suffering the most horrific crisis herself!
Kiki needs to bring Roger home. She will need help with his care since he does not move. She needs a vehicle that accommidates a wheelchair, and a special exerciser for his muscles. She needs help with all of this. Financial help. I am hoping that you can see and feel the wonderful nature of Kiki, and visit the website for Roger. Pass it to your friends as well. With the tiniest donations from folks who care, it will add up to help my friend Kiki and her husband Roger....Thank you from the very bottom of my heart...
the link is.....
www.rogercoomer.com
Tuesday, October 18, 2011
3 AM...
3 AM
3 am... the streetlight outside our bedroom window
slices this October evening with its hazy glare
intruding on our darkness
peeking through green lace curtains
and casting its path across the carpet
and over our sleeping old dog
on the floor
at the foot of our bed.
You... in deep peaceful slumber
your snoring
a roar
in the stillness of the night
as you rest and I lie awake
pondering long trails of endless thoughts
memories.
Remembering... evenings seeming long past
arm in arm here
clinging close
comforting one another
through our storms.
Now... continuing whirlwinds
sadness and fear
so many trembling promises of hope
weaving in and out of our days
while we wander visionless
searching for our passage
through this ruthless maze.
Missing you... your beating heart
my constant
your kiss
your hands still as warm when they touch
yet now you are different
the fragments of you now shuffled
and the pieces of me as well
swirling like shaken oil and water
seeking our old places
but for the ever-moving unfairness
that unsettles the very ground on which we stand
hoping to steady ourselves
both alone
and as one.
Together... once nearly
almost taken for granted
now uncertainty
a clear sky
with which a strong breeze
turns dark
blowing clouds over our souls
then ever so swiftly
sweeping in brightness once more
day in and day out.
My heart... attentive, weary, waiting
desiring an uncomplicated end
a fresh day for us
wondering where will our paths lead...
will they continue trailing intertwined
or part ways
like the sea is forced
to recede from the sandy shore.
3 am...
K.M.Q.F.
10/18/11
Sunday, October 16, 2011
Intake setup
Thursday the 20th of Oct. we are set to make the trip to almost into Philly, to go through a 3 hr intake interview at ReMed, the brain injury rehab center. We will sign releases for records from Good Shepherd and then take a tour. The following Monday they have a committee meeting and make a decision on acceptance into the program, and then it will be just waiting for bed availability. Also, I was told I have to sign a "disposition" before he's admitted, agreeing he can come back home here when the treatment is done. Apparently there are people who at the end of their ropes take loved ones there for treatment and then decide they dont want to bring them back home. Of COURSE I want him back home. I also do know though that if he doesnt try to make progress anymore and doesnt improve behaviorally, I will need to discuss with his family the need for them to take him. I cant have my home upset any longer if he continues the way he is going...
The place sounds nice...in a suburb called Paoli, and the building is actually a renovated old farmhouse. Sounds simple....
Its not going to be that simple. While Danny was receptive to the idea initially, he now keeps saying he's not going cuz he doesn't need something like that. There's nothing wrong with him he says.
Things are worsening here at home with him, and my patience has worn very thin. As much as I love him, if he is determined to resolve himself to giving up any hope of progress now, and stay in this awful state of denial about what's wrong in his brain...well I simply can not accept that. He has become so overly dependant on me for everything, and there is no motivation to do anything, including even to shower regularly. His attitude is, "I died and this is how I am now, so I'm just going to live...eat, sleep."
No, I dont think so. He is capable of getting better, and this place can and will help him. His short term memory is slowly regressing, largely due to the fact that he refuses to either go to therapy, as well as do what they tell him to in order to exercise his brain cells and help them re-connect. His medication situation is horrible also. In my opinion he is on way too much medication and all it does is make him sleep, and then when he is awake he gets agitated about the false things he believes to be true. He doesnt want to eat correctly and is obsessed with eating chocolate, to the tune of 12 hershey bars a day. He is gaining so much weight. He's letting himself go. I refuse to accept this behavior when there is help out there for him. I am basically giving him an ultimatum...he needs to go or else he will need to move to other family. I've done everything humanly possible to help him, but I wont just nurse him for the rest of my life. I wont tolerate his nasty talk and actions either. My youngest boy is affected and the line must be drawn. No one is more important than my children.
When I look back at the early times right after the accident, and the terrific progress he made, it makes me heartsick. To love someone soooo much, but cant make it better FOR them....
The place sounds nice...in a suburb called Paoli, and the building is actually a renovated old farmhouse. Sounds simple....
Its not going to be that simple. While Danny was receptive to the idea initially, he now keeps saying he's not going cuz he doesn't need something like that. There's nothing wrong with him he says.
Things are worsening here at home with him, and my patience has worn very thin. As much as I love him, if he is determined to resolve himself to giving up any hope of progress now, and stay in this awful state of denial about what's wrong in his brain...well I simply can not accept that. He has become so overly dependant on me for everything, and there is no motivation to do anything, including even to shower regularly. His attitude is, "I died and this is how I am now, so I'm just going to live...eat, sleep."
No, I dont think so. He is capable of getting better, and this place can and will help him. His short term memory is slowly regressing, largely due to the fact that he refuses to either go to therapy, as well as do what they tell him to in order to exercise his brain cells and help them re-connect. His medication situation is horrible also. In my opinion he is on way too much medication and all it does is make him sleep, and then when he is awake he gets agitated about the false things he believes to be true. He doesnt want to eat correctly and is obsessed with eating chocolate, to the tune of 12 hershey bars a day. He is gaining so much weight. He's letting himself go. I refuse to accept this behavior when there is help out there for him. I am basically giving him an ultimatum...he needs to go or else he will need to move to other family. I've done everything humanly possible to help him, but I wont just nurse him for the rest of my life. I wont tolerate his nasty talk and actions either. My youngest boy is affected and the line must be drawn. No one is more important than my children.
When I look back at the early times right after the accident, and the terrific progress he made, it makes me heartsick. To love someone soooo much, but cant make it better FOR them....
Saturday, October 1, 2011
SEPTEMBER 2011
September....
School started the second last day of August. That helped me sooo much to get back in the saddle. Back to routines and schedules. I started sleeping better eventually, and my ambition was returning. I cleaned the house room by room, started the process of cleaning out my musky cluttered cellar. My depression was lifting.
My car was close to finished, but I tried to keep hope that something would work out. I worked on it myself alot, and did quite well actually.
I started reading 12 step literature and applying it to brain injury coping ability. I needed to come to terms with my role in this ordeal, in life, and in spirituality....
Changing mySELF First (thru the 12 steps)
Sunday, September 4, 2011 |
School started the second last day of August. That helped me sooo much to get back in the saddle. Back to routines and schedules. I started sleeping better eventually, and my ambition was returning. I cleaned the house room by room, started the process of cleaning out my musky cluttered cellar. My depression was lifting.
My car was close to finished, but I tried to keep hope that something would work out. I worked on it myself alot, and did quite well actually.
I started reading 12 step literature and applying it to brain injury coping ability. I needed to come to terms with my role in this ordeal, in life, and in spirituality....
Changing mySELF First (thru the 12 steps)
Sunday, September 4, 2011 |
Step 1 - We admitted we were powerless over our loved ones TBI - that our lives had become unmanageable
Step 2 - Came to believe that a Power greater than ourselves could restore us to sanity
Step 3 - Made a decision to turn our will and our lives over to the care of God as we understood God
Step 4 - Made a searching and fearless moral inventory of ourselves
Step 5 - Admitted to God, to ourselves and to another human being the exact nature of our wrongs
Step 6 - Were entirely ready to have God remove all these defects of character
Step 7 - Humbly asked God to remove our shortcomings
Step 8 - Made a list of all persons we had harmed, and became willing to make amends to them all
Step 9 - Made direct amends to such people wherever possible, except when to do so would injure them or others
Step 10 - Continued to take personal inventory and when we were wrong promptly admitted it
Step 11 - Sought through prayer and meditation to improve our conscious contact with God as we understood God, praying only for knowledge of God's will for us and the power to carry that out
Step 12 - Having had a spiritual awakening as the result of these steps, we tried to carry this message to other families/caretakers of TBI, and to practice these principles in all our affairs.
Ok, so first of all, the first step is admitting I am powerless...not just over the TBI itself, but all the behaviors and insanity that go along with it.
Ok, so first of all, the first step is admitting I am powerless...not just over the TBI itself, but all the behaviors and insanity that go along with it.
HAVE I admitted that? NO!!
I keep thinking I can WILL it to change, PRAY for it to hurry up and get better, etc etc. This causes stress and anxiety. AA says to "Let Go and Let God", and this is what I must do...also, it will in turn I think, sorta release me from feelings of anger and resentment toward the TBI and towards Danny as well. Yea, he's got some old bipolar crap coming back that is hard to deal with, but (hangs her head in shame) lately I have resorted to yelling at him, demanding he stop doing things, calling him names even at times, and accusing him of only remembering what he chooses to. Where I once felt I was doing a good job, I feel lately like I have been falling short every day. In harsh reality, the answer for ME lies not in what HE does, or how he changes, but it lies within ME!! I need to let go...detach with love...AA says to live one day at a time (I've got that one down pretty good) but it also says that in times of hardship or struggle, your only task that is manageable is to KEEP DOING THE NEXT RIGHT THING!! Reacting in anger or immaturity gets me nowhere...I need to slow down and breath...every moment if I need to, and just keep doing the next right thing. It IS hard work...esp for someone on the lazy side like me when it comes to self-help. I can ONLY change mySELF!! And as many a wives in al-anon have learned, that loving change SOMETIMES induces change in the other person.I need to work on changing my own actions...after all....with or without Danny, I want to be a better person right? At the present time, this is what I have chosen to do...caring for this TBI....well, I will MAKE it a learning and growing experience for me....soooo....thats where I'm at today....will keep you all updated....
After our August incident with the police I had started to withhold Danny's ADHD medicine. I experimented with off and on days and could see the apparent negative behavior when he took it. I notified his neuropsych Dr. D. that I was doing it. Danny was just too much of a handful on the med...so full of anxiety he was up all nights and days, actually stamping his feet and waving his arms in the air all the time in his restlessness and anxiety....crying sometimes. Well in Sept. when we visited the psychiatrist, he stopped the Vyvanse (as I had already done) Danny was FURIOUS! For days he became angry, smacked me a few times over it, cried, hollered, demanded immediate dr visits to get it back or get a nerve pill. The truth of the matter was, he was so much better without that medication...but he didnt see it that way. I began to fear that his addictive personality really only wanted that medication as a form of "speed"....and he talked often about wanting to buy cocaine and speed. It was upsetting.
He had talked about buying alcohol too, but I always talked him out of it, but one day when we were out running errands and things, he had his own money in his pocket and went into a store and bought some. That night he didnt finish it (it was only a quart of beer) Another night soon after he decided to get ready and walk to a bar at 1am. He stayed an hour and came home. He hasnt drank since (its Oct 13)
What it was boiling down to is that Danny has stalled in his recovery, isnt motivated to try, has given up.....
In the 3rd week of September we had a HORRIBLY frustrating and busy week of appointments, and of course this was when my car finally decided to kick the bucket for good. We broke down on the interstate and had to hitch hike part way home and my son brought us home the rest of the way. The following day was Danny's disibility hearing. Barb took us. The day was one of the most nerve-wracking with Danny I can ever remember. He was a babbling, nervous wreck in the car, yelling, reaching into the front of the car, carrying on, almost crying. What a day. Barb, like so many others, said she didnt know how in the world I possibly kept so strong as I did.
Tuesday, September 27, 2011
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If it is a good facility and they are able to help him, just think how much nicer life would be for both of you as a result!