I think the hardest part of all of this is the frustration. It is just so damn frustrating trying to get Kevin to understand how important things are. He went to therapy today and Pam wasn't there so he didn't want to do his therapy. He just doesn't understand people needing a day off and he doesn't understand how important therapy is either. So he left.
It's even more frustrating to me because I DO understand. I just can't get Kevin to - no matter how hard I try. This causes both of us to go to our corners and cool down for a bit, but then what? Nothing. Because he still doesn't understand and to be truthful, he's already forgotten that we didn't agree on an issue.
And this is just one point of the day. Here's another one - he hurts. I give him pain pills. But they don't work immediately so he wants more. One minute he will watch the clock (knowing there's a 30 min window before they will work), but then he starts screaming because they haven't helped yet. It's like for a second his brain works, but then it doesn't. I have to stand next to his bed sometimes for a half hour just trying to get him to remember that his pills take time and that he just got them 5, 10, 17 (or whatever) minutes ago.
And then there's dinner. Kevin has dinner patterns. For example - we must find a Taco Bell with KFC included. He MUST have a large popcorn chicken with honey mustard sauce and a soft taco with mild sauce. If one thing is missing - he won't eat any of it. Yesterday they didn't have the honey mustard sauce. So I had to hold up the drive thru while we returned all of the food. I tried to get him to eat the taco, but he was not gonna do it in any way, shape or form.
It's frustrating. SO, SO FRUSTRATING!
And then there's his pills. The meds are different here in a military establishment than they are in a VA hospital. You might have one pill in FL, but here you need 4 to get the same dosage. Kevin just REFUSES to take pills that are different. He checks them over each time he needs to take them to see if they are right. One of them is ok because a long time ago he had green pills. When we discharged from the VA they were brown (went through all this then too) and here they are green again. He was so excited to see the green ones - almost like he found an old friend.
And let me tell ya - I don't know how many doctor appts that we just left from because he doesn't understand the waiting part sometimes. I play this juggling act trying to get docs to understand that Kevin really can't wait long and that we can't get there in the early morning because it just takes too long to get his morning routine taken care of. Sometimes the docs hear me. Sometimes they don't. Sometimes he will sit there and wait. Sometimes he won't.
And let me just jump in here and mention that someone posted a few weeks ago that Kevin needs to learn who is in control...
I actually was surprised when I read that, but then I realized that that person just doesn't have a clue. I have really tried to educate everyone on what this is like, but I just think some (very few) people either don't want to hear the truth or just can't comprehend it. So think of it this way - would you say that about a person with Downs Syndrome? Or a mentally retarded person? Honestly? I doubt that you would. And to be blunt - Kevin is mentally retarded now. He lost function in half of his brain, which is essentially brain damage.
So please, this is just me ranting about a crappy day. I don't need any negative comments, what I need is advice on how to work through the frustration that is with us every, single day.
After all, Kevin is not gonna change overnight. Maybe someday it won't be like this, but for now - it is.
First 2 from the Nov kit!
12 years ago
30 comments:
This blog is a blessing.
Rant away. Honestly, unless we all walk in your shoes, all we can do is try, well attempt, to give suggestions when in "feeling" your frustration, try to help by giving suggestions. Nothing we can do or say will help you. Maybe some of the suggestions help sometimes, but hopefully this blog just helps you get some of your frustration out. Let's just hope.
Rant your heart out. It makes me sad that you need to ask for people not to leave you negative comments. But that is another story.
Onto the topic at hand. I can't imagine how hard this is for you. Especially the pain stuff. Man.
With my nephew it is different because he is younger...but he can be frustrating and unreasonable too. I'm sure you already do this, and maybe with Kevin's injuries it doesn't quite work this way, but for us it is all about picking our battles. There are non-negotiable things that are medical and safety based. He's figured out that those things are just not optional...he still tries to pitch a fit sometimes, but he doesn't get away with it. But other things like the area rugs he wants to bring with him in the car, or the complete darkness that he wants in the house (in all rooms) during the evening, or the exact temperature that food needs to be etc are things that we just work with, even if they are frustrating for us sometimes.
Does Kevin negotiate at all? Or is that not possible at this point?
I cannot imagine how hard it is to deal with that sort of issue - one minute with his brain 'on', the next 'off'.
Does Kevin remember anything short term, or is it just sporadic and unpredictable what he'll retain? Perhaps the part of the brain that was damaged was short term memory.
I don't know how Kevin is with writing, but perhaps you could have him write down when he takes his pain pills? Or use some sort of 'countdown' to signal the 30 minutes the pills take to work. (Moving blocks/squares from one side of a table to another, or something?)
I'm just thinking out loud here...and don't know if any of these ideas are feasible at all.
Rant away...it's better to get this frustration out than hold it in. We're all pulling for you and Kevin, and hoping for the best.
Leslie, this is the best place to vent. If people don't like it they don't need to come back and read about our hero. they aren't true friends. keep up the good work. God is watching over you.
The last post said it best. Say anything you need to and if someone doesn't like it then they can stay away. Praying for some good days to make the tough ones easier to bear.
Aunt Mona
Yep, rant away. Above responses cover most of my thoughts. Bless you, Leslie.
As time goes on and there's no change or an increase in the 'have to have it this way' issues, perhaps something like a med for obsessive/compulsive disorder might help. Now, I have no idea if that would be an option and adding another med may not be an option, but if the behavior prohibits his going to therapy etc, it may be worth discussing with his doc. Just a thought that came to mind.
Would setting a dial type timer help as Kevin waits for meds to kick in? Something where he could see the time frame decrease to when he should start feeling relief? Again, I write this not knowing for sure if he would comprehend the concept itself.
We'll never fully understand the complexity of your days and nights. You're sailing uncharted waters. Prayers for wind beneath your wings.
Here's a tissue for your issue. DEAL WITH IT!
Here's a tissue for your issue. DEAL WITH IT!
You are being very patient when it counts. It's ok to "rant". That's what this place is for.
Keeping you and your family in my prayers.
A.
Leslie, after 3 days of being with my son, who had just gotten out of surgery, left me drained and emotionally raw. The effect of the pain and the meds he's taking caused him to constantly need attention and yet be unsatisfied with much of anything. The person who left their blunt and callous comment to "DEAL WITH IT," got my goat and is frankly an IDIOT. I'm sorry, but that is the kindest thing I can say. In defense of having only a small taste of what you and Breezy and Kevin must face (minus the fact that my son has no TBI) you deal with this AMAZINGLY! I admire you and know that you deal with the results of Kevin's injuries better than most anyone that found themselves in your situation. WHOA!
Janet
I couldn't agree more: Anonymous 7:35 and 7:45 is just plain ignorant and destructive.
A.
It's so easy to be "tough" when sitting behind a computer screen. I wonder if the same toughness would be carried out with helping take care of Kevin on a daily bases. I highly doubt it as it's always an annonymous poster that can't be "tough" enough to post a name behind such ridiculous comments.
Leslie and Breezy are "dealing" with Kevin on a daily bases. You are not. If you are so interested in Leslie's blog to read maybe you should offer something substantial to help. Your comments come across as being very childish and rather embarrassing.
Keep up the good work Leslie and Breezy! We're here for you!
Take care,
Kathy in IA
WE ARE ALWAYS PRAYING FOR ALL OF YOU.
MELISSA ION
Hello Leslie,
Long-time RN stole my thunder.
I will say this about the timer. Get two of them of different colors.
Decorate one for theropy/doctor appointments with Air Borne stickers or other items that say Air Borne. When you walk in the door set the timer for an hour. Let Kevin know that as an Air Borne soldier he has to wait for the timer to go off before he can leave before seeing the theropist or doctor.
On the Second timer decorate it by hanging on it medical items or putting on it medical stickers. Then at night or any other times set the clock for the 30 minutes it takes before the pills kick in.
When it goes off the meds should be working.
I know it sounds strange but I have noticed from this posting that Kevin gets in to a routine that is set in stone. Any change in this routine cracks his confidence in what he does understand. I'll bet it also gives him the feeling that no one care about him any longer strange as that sounds.
By getting him use to using a timer for certain things it will allow him hopefully to understand that waiting for a small amount of time is a challenge between him and the timer.
Also let the person who is there behind the desk know that when the timer goes off that means that Kevin won't be waiting any longer.
Hopefully as Kevin gets this into his routine it will help to ease up on some of those frustration you both are dealing with right now.
As for Pam his theropist, ask her if there is any way that one or two of her relief theropist can sit in on some of Kevin's theropy and even take part in them. Maybe by doing this Kevin will get use to haveing them there as part of the routine and would be willing to work with them.
It seems that that break in routine is what is causing the problem.
I know I should not have to remind you that when the routine is set in STONE it is very hard to deal with the chips and cracks AND for Kevin, HIS ROUTINE IS DIFINITELY SET IN STONE.
Hope my 2 suggestions might work for you, Breezy and Kevin.
Take care of yourselves and get as much rest as you can.
Miss Em
Austell, Ga.
Your blog.........your right to vent, rant, scream and cry! The reality is most of us have never been in your shoes, I DO understand your frustration. I so admire and pray for you daily.
I read your blog often, it grounds me! Many thanks for being AUTHENTIC.
Laura
Leslie ~ In dealing with TBI, the strength of the impatience is directly proportionate to the age and size of the patient. You have your hands and days full.
The timer (Long Time Rn and Miss Em) is an excellent idea. You may want to supplement that with a writing pad. (Been there, done this). Write down the time you took the medicine, and the time it will kick in. He cannot read, but the visual configuration will be there. Then do a count down. When the timer "dings" it will coincide with the number written down.
Appointments, I know you already do this, but reinforce his set schedule (As Miss EM said) with the receptionist. Then, if possible use the timer.
It is all very exhausting. Anyone who has worked with anyone in rehab of any kind knows this.
So vent as often as you can. Otherwise you will implode.
And Leslie forgive me for this next paragraph, I use your blog to respnd to someone...As for "the deal with it" post, I say this directly to you, Anonymous, (although you never read the controversy you stir, because you cannot take criticism), you failed to rile me, upset me, anger me, or otherwise pull negativity into my day. What you DID do, was cause me pause for such a wretched, sad, miserable, unfullfilled, angry and lonely individual. The joy you get by harboring ill will, and randomly spreading your disfunctional thoughts, is scary, because dear one, someday, you will in fact, have to deal with a tragedy of such magnitude it will probably destroy what is left of your shrinking soul and blackened spirit. That is if, in fact it already hasn't happened. So, keep writng if you must. Just know that when you do, the world and I do mean world, shakes their collective head in pity and disgust.
Ok, then. Leslie, you are magnificent, benevolent and grand. And I send nothing but love, prayers and hugs. Always.
Well said Patricia. I feel that Leslie has done a wonderful job dealing with everything. Leslie you have more strength than anyone I know. Everyone needs to rants and blow off steam, it helps us make thru our toughest of days!
What about getting him some sort of activity to do while waiting for the doctors? It sounds like he gets inpatient with the wait and if he had something to occupy his time maybe it would be easier on you both.
By responding to the 7:35 and 7:45 blogger, the "get a tissue" person just makes any of us as bad as that blogger. IGNORE IT and eventually it will go away. Possibly that blogger is not as you say at all, Patricia, but maybe someone that knows deeper than we know and just wants to vent themselves. Simply ignore it and eventually it will disappear. Be the bigger person. Many prayers for your sanity and good health to return to Kevin. Hang in there.
I sometimes wish people had a clue before they post things. My brother is no longer the person I remember leaving on July 19, 2007. He isn't easy to tolerate sometimes. I notice my mom is a very patient person who tries her hardest to keep her head up and move on to the next issue. It upsets me so much that she has a blog to vent on and has to ask to not have negative comments and yet some ignorant person gets on here and still leaves a rude comment. How bout this you "anonymous" poster? I'll switch you my life for yours for just a few days and then whenever you can't handle it I'll switch back. Sound good?
Breezy
Living on assistance....wow that's a hard life to switch. I know your not collecting any huh? Yeah right you and your mother can't live off of the money that people donate to your lifestyle. It's not like you can't get help from the VA to help take care of your brother YOU TWO just refuse it and say he don't like who comes in to care for him be the ADULTS and make him deal with it we all don't like things at times but sometimes we HAVE to accept things weather we like them or not.I know YOU TWO wanna be the HEROS.
Leslie,
Is there a way you can set this blog so that comments are moderated and must be approved before posting?
I know that's extra work for you, but unless the volume gets much heavier, it would only take an extra minute or two to filter out the super negative comments so they never get posted here.
Of course, you (or Breezy) would still have to see them, but I don't like to see your comments section being used for flame wars between those of us who *have a clue* and the anonymous cowards who don't. That said, I feel compelled to reply to Anon 6:02pm:
Dear Anonymous: I hope you never have to go through what some of us have, with a loved one who refuses care from certain individuals. Those of us in the know understand that not only is it cruel to enforce such an unwanted relationship, but it can also potentially escalate to physical incidents, particularly when brain damaged, yet strong patients are involved. Really, you don't want to know what it's like. And trust me, the last thing a primary caregiver wants is to be a hero. Mostly what we desperately want, need, and can never get, is a short break, or a good night's sleep, or a moment's peace. The very *last* thing we would EVER do is to refuse assistance when it's offered, for any reason, unless it's *not_good_for_the_patient*.
Love you all, keep on keeping on, Leslie, Breezy and Kevin.
-AG
You're doing such an amazing job, Leslie. Keep up the great work!
No one should even pretend to know what you're going through and assume easy solutions unless they have been there, and frankly, it's a position I could not wish on anyone. You live this life the best way you know for your son, and that should be good enough for everyone else, too.
Big hugs for you and your family!!!
~Katie in Maryland
If the blog is "moderated and screened" before Leslie posts it, isn't she still going to be frustrated in seeing negativity anyway ? Many do not post their name anymore and we are nice. If you say one little thing that someone might think is a wrong suggestion, you get your head bit off, even if you are trying to help her. Sometimes we, the nice anonymous, are the only ones who comment on this blog anymore anyway. Don't get the two anonymous' mixed up. Free speech must not exist anymore. The cursing is bad in this blog. It just shows what side of the tracks some people come from and some children read this blog in their classroom. If they are going to moderate some things, the bad language should be one. Leslie needs to use this blog to get all of her frustrations out and Breezy too, period. If they ask for help, we should be able to suggest.
Many of our suggestions are and have been helpful. I'm glad you liked the CNN brain article I suggested and hope today is getting better than yesterday. Prayers as always.
I feel sorry for you 6:02p.
No understanding with a hate-filled and black soul.
I don't pray to Satan so I guess your stuck with what you got.
Miss Em
Austell, Ga.
Leslie, it must be hard to remember how little other people can really understand what it means to walk in your shoes. I for one, know that I know not one ounce of the troubles that you have been through. I can't imagine what it must be like to live your life everyday. As for advice, of course I know nothing of your situation, but I think that continuing to take time for yourself every once in a while is a must. Maybe do some scrapbooking about some of your messier, uglier feelings to help work it out, continuing to be honest and venting on your blog. And when you are in those difficult moments where you feel like the bottom has fallen out, try to get a hold of your emotions maybe by meditating. One way that my boss has taught me is a combination of breathing low and slowly, deep breathing right into your pelvis and out, up into the heavens and imagining myself in a spinning ball of light, you should also include Kevin in this ball. I always picture my breathing being the momentum that drives the ball of light. This is energy work and can have a calming effect on people around you. I do this in the middle of everyday situations. You don't even need to close your eyes to do it after a while. Sorry I don't have anything better.
I'm sending Kevin, you and Breezy my best thoughts every day, Leslie...I can't imagine how hard your lives must be and I have nothing to offer but my prayers that tomorrow and tomorrow and tomorrow will be better- and that Kevin's infection will soon subside.
(and although they should not even be acknowledged I cannot help but mention that some of the anonymous posters are absolutely beneath contempt...)
Some of Kevin's symptoms remind me of autism. My daughter has Aspergers, which is a high-functioning autism. They too depend heavily on routines and rituals and suffer from overstimulation and uncontrolled outbursts.
Perhaps you could find something helpful to you in literature about handling autism.
Best,
mamaworecombatboots
My heart goes out to you and Breezy, having to go through this. I hope you can find some solace here and some good advice. I'm glad you have a place to rant, it's too bad the trolls like to come out when you do! What goes around comes around though.
I love the timer idea and hope it works. I'm praying for you, that God will continue giving you wisdom and strength to deal with Kevin's issues. And of course, for Kevin's continued healing and coping. Your special family is in my thoughts and prayers every day. Take care.
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