First, let me tell you guys why I decided to hold off on the last bunch of surgeries. It's all about the Botox. You can only have it every three months and because Kevin goes literally spastic when you mention that word - I have decided to sneak it in while he's under for the final surgery. We did manage to sorta sneak it in this last surgery too (and after telling him about it, Kevin was so sure that's why he was so weak afterward and he absolutely refuses to discuss another treatment). So, September will be 3 months and if we are going to get that arm in any way straight - we have to have more Botox.
Personally, I think we need the break too. My body just hurts from all of this traveling and I think we could both use some down time with some sort of routine.
And speaking of routines - Kevin starts his therapies at the new place on Monday! YAY! We go at 11am and again at 4pm. One great thing is that this place is closed on Tuesdays. It will be really nice to have 3 days off a week.
And to be honest - I can only hope that he will even go to therapy. Barbara B - you just wrote that you think I might be too close to enjoy the changes and improvements. If only that were true. I am always just so happy when great things happen and y'all know that I tend to focus on the positives, but frankly - we have hit an extremely rough behavioral pattern. Kevin is pretty much refusing to go to therapy (or do a lot of the things that he needs to do). Sometimes I can get him to go, but if he won't - there's just nothing I can do. First, because he's bigger than I am. And second, because if I could force him it would be stripping him completely of the last shred of his independence.
Today would be a prime example. Yesterday he would not go. PERIOD. Today I did manage to get him to the hospital and by the time we parked and got in there he was in a VERY bad mood. Once the therapists came, Kev did a word search puzzle and when the OT tried on a new splint and it hurt, Kevin just turned his chair around and left the room. Actually he completely left the building. The therapist followed him outside while I grabbed some equipment that we needed and he was already standing up (she must have stopped the wheelchair from moving) and literally pushing her against the wall to try to get around her. I'll be honest - I can't keep up on foot with someone in a wheelchair - it goes so much faster than I can and he has been known to leave and go out into the road. Frankly - if things don't change someone else is going to have to start taking him to his therapies because I honestly just don't know how to deal with him most of the time anymore. He has become very stubborn and rude and just flat out uncontrollable. You just can't imagine what it's like to be with someone 16 hours or more of the day and you only have maybe 1 or 2 (if you're lucky) hours of laughs and good times.
And believe me - I do see the changes. And I do see that his cognitive state has improved tremendously since we went back to PA the last time. But today (and most days lately) the bad behavior is starting to outweigh the good.
So keep us in your thoughts all weekend about the new place. When we went down the other day, Kevin went in for about 2 minutes and then he got mad (for no reason taht we could see) and went outside to the car. He sat there the whole time I was discussing the necessary things with the new therapists and just called me on the phone repeatedly. I just don't know what we are going to do if he won't go to this place either...
First 2 from the Nov kit!
12 years ago
11 comments:
Leslie,
I'm glad Brianna is back with you and Kevin again. Sometimes "two heads" are better than one in trying to figure solutions out to a problem.
Remember men are from Mars and women are from Venus..ha ha. Kevin is getting so much better and possibly a lot of the behavior you are seeing in him is simply frustration. He is able to do so much more now and possibly he is frustrated that he doesn't have the old Kevin back.
He's come so far...it almost sounds like he needs a fun activity to keep himself busy during the day.
You know there is nothing more rewarding than "giving back" and possibly Kevin could volunteer somewhere...helping where there is a need.
I am sure it's too soon for this and you'd have to search for the organization that could use Kevin's help, but I am sure it would make him feel "needed" and helpful.
Remember the ones they give the hardest time to are the Mamas..we're closest to them. Don't take it personally but I am sure it must be very difficult so many hours of the day.
Just my thoughts, but it was something that happened to pop into my head.
I know the doctors said with his brain injury he would be very limited mentally. It sure seems that at times you are not dealing with a child, you are dealing with the 21 year old man that Kevin is. You've proved the doctors wrong so many times.
Good luck to you all. We all need a little break. I'm glad you have a helper coming in now. Possibly talk to Kevin to see how he feels about this too.
Sometimes weighing in on "new changes" and talking about them may help you come to the root of what possibly might be bothering Kevin or leading to this new bad behavior.
God Bless you and still praying as always.
STAY STRONG...sometimes it's so hard.
I also think you have to remember that Kevin has had to "re-learn" everything. He also has to "re-learn" appropriate behavior and yes, this time it is going to be much more difficult than the first time around - he's much bigger physically and he "thinks" he knows right from wrong. Obviously, he's just a little mixed up. This is where tough love and your great mothering skills have to come in. You would have never accepted a temper tantrum from a two yearold and you do not have to accept one from a 21 year old. Please talk to someone as to how to "accomplish" this re-training. Kevin has had to fight for his life for over a year. He has basically been "the man" and now he thinks he can / should get away with inappropriate behavior because of his "condition". If he continues (and you allow it), your life WILL be miserable and so will everyone's life who comes in contact with him.
Bad behavior must not be rewarded; it must be corrected because he is re-learning everything.
Again, I urge you to speak to a behavior specialist or TBI specialist for help.
You deserve better and so does Kevin. You need to be respected in this situation, along with all the caregivers along the way. I cannot imagine the person who was chasing Kevin and who he placed in harm's way because he was acting like he was - he is dangerous to himself and those around him when he acts in this manner.
I have had patients kick, bite, rip my hair out of my head, simply to perform a diagnostic test their doctors have ordered. We are told not to place ourselves in danger and to discontinue the procedure until meds can be given. Is this what you want for Kevin? To be so out-of-hand drugs are used to make a diagnosis.
I know this is hard. You have come through with flying colors so far. Please talk to someone as to how to deal ith this situation.
I'm glad Kevin will start his new therapies on Monday and hope everything works out there. :) I'm sorry you've been having problems with Kevin refusing therapy. It's to help him but I suppose after all this hospital business, surgeries, therapies, etc. he is probably getting tired of all of it! I know I would be. Now that he's 21 he's probably thinking that he can make some of his own decisions now and therapy isn't one of them. It seems like men don't ever want to go to the dr. anyway let along for this length of time. I can see both sides. But I do know that this is important for Kevin and that he needs it so I hope he will give in a little and make it easier.
Have a great weekend and I hope Monday goes great! :)
Take care,
Kathy
Since Kevin is still on "active duty" maybe he will need to be "ordered" into therapy...That way it's not "mom" telling him what to do and since you have said in the past how serious and proud Kevin was to be a member of the armed service he will respond better to that then to you...Sometimes outsiders have more success with getting through to our kids than we do...Prayers are with you that the new therapists can "win" him over and help him continue to gain ground...
Leslie,
I so totally agree with others comments! Everything! I do feel that you need to get some help on how to deal with Mr. Kevin - someone who has worked with TBI patients - not that they are all the same, of course.
Also, you being JUST the mom, he can be more stubborn, as he knows he can get away with it. A power struggle of sorts. Having another person take him, preferable a man, would be a good approach to take. It may be not so much that he does not want the therapy but that he is showing his independence in a childish way. I believe he wants to get better but he prefers to prove his independence (and dominance)by refusing to go. He needs to realize that the therapy is for HIM not for you.
Hang in there,
Cathy M
Hi, Leslie! Yes, I'm still reading your blog. Just not commenting. But reading today's post, I think you inadvertently hit on something. Maybe you do need someone else to take over taking Kevin to his therapy. I know this would be hard for you, but I think it might be a good thing. I did many years of behavior management, and often one of the best things I would do for someone was change their care giver. And if that caregiver were mom or dad, the change was, most of the time, just the jolt they needed! It was always a fight, and sometimes I had to actually ban the parent from the session, but in the long run it was almost always the best solution! I know this is harsh, and I'm sure you've thought of it...but you aren't going to be around forever. And the stress you're putting yourself through is not good for your health, mental or physical. And I know that "no one can do it like Mom", but sometimes, we have to face up to the fact that we have to let someone else do for our loved ones occasionally. Just a thought...
Hi Leslie- First of all Kevin has been blessed with an amazing mom and sister. Possibly there is a support group in the community that you can go to (possibly - not even military related). Sometimes they even help arrange respite care for the caregivers - and of course I know that you are guarded about new people coming in - I understand that - there is no doubt that Kevin is still here because of the care YOU have given him. If they don't have respite care possiblilities there may be a supervised "fun related" activity for the injured family member while the caregivers discuss issues. Another possibility is the EFMP program through the regular military hospitals. I know that has been helpful to many people in the past (not necessarily war injuries) but a TBI is a TBI.
Leslie - I just wish I could be there physically to help but the distance between my home and Tampa is over a thousand miles away. You, Kevin and Breezy are in my thoughts and prayers daily. Hopefully some fun and moments of relaxation can come your way soon.
Wishing you, Kevn and Breezy the best.
Army Mom
Maybe it is time to let someone else be the "boss" about PT and such. Leaving you to be his MOM at home.
You are wearing many many hats right now. Maybe hand the "mean guy" hat off to someone else.
Also the Army can still force him to go right? As in maybe hand him over to a commanding officer about these behaviors.
Last thought as I see you have many here to think about posted by others.
This ALL could be out of Kevin's control. It could all be about the TBI. Therefore he would NEED a behavior specialist to help him.
Oh Leslie, I'm so sorry! What I meant was his appearance. He is looking so handsome! That last surgery so "normalized" his facial expression, and I was afraid that because you are with him for so much of every day you didn't get to enjoy the spectacular changes that we at a distance do with each new set of photos you post. The difference between the new pics and the earlier ones is stunning.
I do understand somewhat the behavioral problems you have to deal with. Although no where close to the same level. My mom has a lot of the same stubborn, angry behaviors. Just getting her to take a new medication is almost impossible...lots of tears and tantrums over one little pill. And if her coffee cup isn't filled as quickly as she wants it done, she starts tapping it loudly with her spoon and yelling. Quite the diva! And so unlike my pre-stroke mom, just like your pre-injury/post-injury Kevin's differences. The mind is good, the temperment...not so much. And maybe it's just their way of over-exercising what little thread of control of their lives they have left. I don't know.
I wonder if you would be able to find a guy from the local Disabled Veterans or American Legion who would be willing to be trained by you to take Kevin to therapy. Kind of like a Big Brother for recovery. Do you think he'd be less likely to act out in the presence of another military guy? You could hang around out of sight for awhile to see if it works. And if it does, you'd gain a bit more down time for yourself, and Kevin would gain a new buddy to hang out with. What do you think? Barbara B.
I agree with what some of the others have said. Is there a way to get "official" orders for Kevin to report to therapy at the appointed times? I think it's a great idea about asking a vet to take him to therapy, or maybe just hang out with him a few times a week. Cause lets face it, you're right in the middle of it, but you yourself don't REALLY know what Kevin's going through. Maybe someone who's been in a similar situation and can tell him "Yea, it sucks. It's not fair. I hate life sometimes too. I know just where you're coming from." Maybe it would give him a new perspective, or just someone to commiserate with.
It sounds like a good idea to hold off on the surgeries. I know I'd be exhausted with all that traveling and stress. Kevin's obviously tired of it all, too. Hopefully the new therapy place will work out. I will definitely keep that in my thoughts and prayers. I can't imagine how frustrating it is for you and Kevin not to be able to understand exactly what he's thinking and how he feels.
Take care. You'll both be in my thoughts and prayers.
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