Tuesday, September 27, 2011


Residential treatment? Mood
Saturday, September 17, 2011 | A General Update story
So...when we were at the neuropsychologist Friday, we were thrown a curveball. Dr. D thinks Danny should go/would benefit from some time away in a residential treatment facility for brain injury. He didn't say for how long, but mentioned the phrase "several weeks" a couple times. Danny is "stuck" in his brain injury recovery...he has a severe denial that there is anything wrong with his memory at all, even when its proven each and every day by how he cant remember the simplest things. He wants to get to the point where he can either work or go to school, but wont get it thru his head that he needs to improve his memory and all the other stuff that goes with it. He refuses to do what the therapists tell him to, like write things down, use the calendar, use the other compensatory skills they are trying to teach him. Half the time he wont even get outta bed and get ready to GO to therapy. So I guess the dr's thinking is that by going into this place for awhile, he would have intensive everyday therapy done with him, and be helped to learn some skills to be more independent. Right now he depends on me to tell him to do every little thing...EVERYTHING. He of course denies this. The dr said "ok Danny. If Kathy were to say, 'I'm not reminding you anymore', and had you track your appts on a calender yourself, set your own alarm, get up and get showered and ready on your own, and then tell her you were ready cuz its time to go...would you be able to do that?"  Of course Danny said "yea"  OK...he doesnt do anything unless I remind, coax, threaten, nag, sometimes yell.  Another plus would be that there is a neuropsychiatrist there, and maybe this mess that his meds are in could be straightened out.
The Pennsylvania Head Injury Program would fund the stay if he'd be accepted. Dr D is looking into it and highly recommends he do this. I dont think Danny really understands what it entails. I dont even wanna talk abt it with him yet cuz I think he will just say I'm "putting him away" or worse, he will think I want to carry on with someone else while he's gone, cuz thats how suspicious he gets. He did say he thought it would be good when Dr D talked abt it, but i'm sure he's forgotten now. So I will allow time for it to be brought up by the dr some more. The process will take a fair amt of time to come to fruition anyway if it does happen. The program will receive a referral, has to send to the rehab for his records, come to the house to assess him, etc. By then maybe Danny will become comfortable with the idea.
So the place is in Philadelphia, and its called ReMed. I went on the website briefly to see (remed.com) but have to take some time to read in detail. Just playing it by ear for now....


  1. blueguitargirl
    Also...I think the drs and therapists can see that we are slowly reaching a crisis point here, and that I need a bit of a respite as well. We cant go on this way...we are at an impasse.
  2. wtd13
    Assuming this is a decent facility, I think this would be a great idea. It would give you a much-needed break AND I think it would be helpful to have others, without any emotional attachments, work with him. Also, the program may help him get into more of a routine doing the things he needs to do on a daily basis.
  3. normaeh
    It sounds likea good way to havehelp for hi. Wadewas in rehabfor over 2 onths I think this is why we get over the hurdles
  4. macdingolinger
    It sounds like it might be a good idea at this stage in the game. I know it is a difficult decision, but if they can get him over the hump it would be great... and you wouldn't be the "bad guy."
  5. Lyndee1968
    I think that is wonderful Blue.... if Danny would just agree to it.... get SNAP to talk to him about it..... or KIKI..... :)
  6. PearlyLegg
    Yes I believe Danny does need that same rep everyday same time rep will really help him . OT, Pt, ST would be great for him . I think sometimes we the care givers have a hard time to let go and Let the professional do their work .Which will make a big improvement. Just keep in mind your not abandment him but looking forward to the furture having him back at home as Danny before the accident happen or close to it. But it doesn't happen overnight it does take time getting him in there . It's been 3months now For Rick and he has got placed yet on a waiting list .Hopefully next month. Good luck . Pearl & Rick
  7. Kiki123
    Ohhh! I LIKE this idea a lot, Kathy! And I think letting the doctor be the one to "get him" there is the way to go. I'm glad that he responded favorably to the doctor suggestion.

    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!
  8. wildflowercat
    That sounds so good, Blue. It has seemed from what you have said that Danny is stuck. I certainly dont think it would harm him and he might realize what you actually do for him. Be like Kiki and dont stop until you get what you need.!
  9. ZenobiaSnapDragon
    This could be the extra boost that Danny really needs! And a much needed respite for you as well!!! I think it is a great idea!!!
  10. tiffany81409
    o wow. i mean i guess it's a good idea if he just kinda gave uphope, ya know? bceause you do everything in your power everyday to help him. & you have done that from the start. if he doesnt want help here then he isnt going to take it ifthat makes sense? when you do tell him i could see him getting angry. &; with your other entry how his sis said "we'll talk about it..." i'm sorry but thats just downright being a bitch. like thats your fricken brother and you have to "talk" about it?!?!?! like wow... they need a slappin around or somethnigg.

The neuro doc wants to get him in a residential treatment center. I think...I KNOW thats best. He needs intensified treatment. I dont want him to think i'm giving up on him, but really and truly, if he is giving up and wont try to get better, I have to go on without him. I have done everything in my power to get him thru all this. But I cant live in a state of limbo where he gives up and thinks this is as good as it gets and live with the daily drama. I am not gonna have my smaller child, as well as my 20yr old son, believe that I will keep doing this and put them thru it. I am so confused.

I told Danny last night that he is going to this residential place, and if they tell me he isnt trying or isnt getting better, then his family will have to take him and do whatever. Idk what else to do. I love him sooo much, and NO ONE cares abt him like I do...no one has tried to believe in him like me....no one has been more patient and perservering....I wanted him to get better. Before all this happened he was getting better on his bipolar meds etc. We were starting to set goals....a house of our own...a life....perhaps even a child despite my age. Now it all seems like a cruel joke. I have a hard time admitting that I cant do ANYTHING abt this....cant MAKE HIM SEE....

Monday, September 26, 2011


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.....