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.......
Sunday, October 23, 2011
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
Monday, September 26, 2011
LOOKING BACK
The present date is September 26, 2011. The journey so far has been one of many ups and downs. No one or nothing can prepare you for what happens with brain injury recovery. At the time, when your loved one is hurt, almost dies, lies in a coma, battles infections...then begins to wake, and learns all his own vital functions and daily needs all over again....you think this is the worst part. This is your nightmare. And it is indeed a nightmare...but I've come to learn that it does not compare with the daily task of caring, guiding, teaching, coping with and living with this "new" and different individual.
Life has become a daily span of 24 hours, with a need to "set" an attitude in the morning, and a goal of reaching bedtime with as little drama, confusion or chaos as possible during that day. There were several months of very extreme confusion, Danny almost in a "zombie state", and each day was a revolving door of trying to get the proper medications into him, often against his will, getting him to and from appointments while dealing with extreme behavior, helping him to manage his hygiene, his continence, his eating. He was lost in his own "bubble" of memory loss. He confabulated all day long, which is when a brain injured person tells "tales" about all sorts of things...not purposely. It is a result of all the shuffled and misplaced memory files coming together and mixing up, plus the fact of not having true and clear memory about facts...the brain sorta just "makes up" its own versions of what has happened in the past and what is occurring now. Basically one might call them delusions.
As the months passed we had some breakthroughs with memory, some of it returning more and more, and some realizations between what was true and false. Thinking became clearer and Danny ever so slowly was appearing more "normal." This normal appearance showed outwardly to others, but they werent and arent in his therapies with him...living daily with him, listening to what he really felt or thought about himself and the world.
Danny's predisposing conditions, his bipolar and OCD, began to be magnified as well, and at present, even after many medication adjustments, are rearing their ugly heads.
As of right now, I find myself at a point where I am not sure I can continue to deal with the plate set before me. God knows I love this man with all my heart, but things are not good. Oh we have good days, dont get me wrong...in fact all in all, except for a crisis every maybe 3rd day, our days are manageable. But there are days when I fear for him, for myself...days when he seems so out of context, and can be so very arrogant, disruptive, chaotic....annoying....and it has caused troubles on the home front. It becomes a question of whether it is fair to affect my family in this way. I am full of confusion.
Danny as of late has been expressing the thought that he is "giving up." He is bored and depressed. He is saddened that he is being "told" he cant work or drive. He is angry that he has welding school under his belt, and war time service in the military with training there as well, and now he is being rendered "useless" due to his brain injury. Yet he is refusing to perform the exercises therapies teach him for memory repair. He is in denial that there is anything wrong with his memory, even when its clearly shown to him daily that he cant recall even the day before most of the time unless I give him such blatant clues that I am almost giving him the answer.
Through the Pennsylvania Head Injury Program, I am working on getting him admitted into a residential facility that his neuropsychologist says is necessary now. It could be stay of anywhere from a few weeks to a few months...but he needs to move forward and he is not doing that anymore. I've done all I am capable of doing...he needs to be forced to do for himself or he isnt going to get any better. My heart is breaking over this. There he would receive intensified treatment by therapists, and be taught independence. As it stands now, he depends on me for EVERYTHING. He won't get anything for himself, or do things for himself. He won't initiate his own bathing, schedule, medications etc. He refuses to use the calendar to track his daily activities. This needs to be changed, and I believe by getting him into this exceptional facility, we have a stab at least of turning this thing around. And in addition, perhaps with their expert staff, they can figure out the mess his meds have become. His case is so very very complicated with the disorders he already had and then a brain injury on top of it. His doctors and therapists dont know what to do or say anymore. Its time for action. Recovery levels off at the one year mark. It is frightening to me to realize we are 10mo. post-injury and after that things will progress slower, or possibly barely at all.
The love I felt as Danny lie dying, and recovering, remains still as strong as it ever was, but as happens with all brain injury, slowly your outside support and help fades away, and you are left with the devastating reality that this doesnt go away...and that if you really love this person, you must fight for the best you can get for them. I feel I've done this...given my all. I also must face reality though too, and realize I can only do so much, and that I can't allow this to overshadow the welfare and family health and structure of my own children. This is a terrifying realization.....
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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!