Sunday, September 13, 2009

Day 472 - Sep 13, 2009

A couple of days ago (and again today) someone posted a comment about us needing to have a schedule to get Kevin to sleep at night, in turn allowing myself to sleep. I wanted to post a response to it, but knew it would be lengthy so I just never got to it - until tonight.

Patricia pretty much rounded it all up in her comment:

I want to address the one comment about structure. More for clarification, than anything. I understand, in theory, that is what many would think. Set the day as though there are jobs, have a schedule. However, in dealing with TBI, and to the extent with which Kevin has been injured, our real world solutions often do not work. When the brain is injured, and memory loss occurs, that means that everything that once was habit or cycle of life, has been erased. Sleep is erratic because the medication often changes personality and therefore changes the routine. Just when one thinks they have a routine down pat, the slightest occurrence can trigger a change of attitude in the TBI patient. It is like a game of Matching Pictures, but in this case as much as you concentrate on the matching set, you turn it over and it has changed. Although structure is definitely suggested, in textbook references, it is also advised that the caretaker must be prepared for these changes, and adjust accordingly. Which is what Lesley and Breezy have done. Remarkably well. Especially since neither are registered surgeons trained in the recover of a TBI patient. It is a daily learning experience, and one , which quite frankly, can scare the crap out of even the most qualified.

Every single night Kevin goes into his room at a normal hour (9-10pm mostly) to go to sleep. At this time I have to take an Xbox controller and block the light shining off of the brand name on his tv which glows. I then have to take a DVD case and put it in front of the digital box so that he can't see the light from the clock. I take all 8 throw pillows off of his bed and organize them 'just so' on his floor and we start all the kisses and hugs and 'I love you moms' until Kevin feels suitably ready to sleep. I close the door and I take a blanket and block all the light that could shine under his door so that his room is utterly and completely black. Within 2 minutes...'MOM!' and so it continues every minute or two for sometimes hours. In the space of time that I typed the last 3 sentences, I have gotten up six times.

Kevin cannot see any light from the living room and he can hear nothing. I rarely watch TV so I sit here in total silence and type the blog. Noise and light are definitely not the issue.

As for him feeling like he has a job during the day so he can sleep at night - I guess it's best for me to say that he does have a job M-F. We drive down and back to therapy at least twice a day - sometimes 3 times a day. Which means we get up at 9, shower, eat a little breakfast and head out the door for therapy number 1. We come back, he rests and then we drive the 15 mile round-trip journey to therapy again and then we come home and either rest, run an errand or do whatever is necessary. Now that he is doing better, we have been going three times a day and we are mostly running from 9-4ish every day. Pretty much a full time job, I would say.

Kevin really doesn't sleep much period. He does 'rest' often throughout the day, but he rarely sleeps. He also rarely sleeps at night, sometimes not at all, often times about 2-4 hours, and once in a while he will sleep a whole day or a whole night. There is absolutely no way to know which one is going to be the way it is on which day.

I really wish there was a way to have some sort of structure or schedule, but it's just not the way it is with a TBI patient. And it's all the harder because I am a control freak and a planner and I have absolutely no control over how our day is going to go. I really can't 'plan' anything because you just never know if things will work out.

It's hard - it really is. But this is just the way life is for us now and none of us have any choice but to adjust to it.

Now it is 12:59 and I invite y'all to see what time this post was posted (it lists the time I started typing). That will show you how much time I just spent getting up with Kevin as it really would have only taken about 15-20 minutes to just sit down and type this all out with no interruptions.

And for your information - he is still wide awake in his room. Oh - and it doesn't matter if I am sleeping. If I don't hear him call my name, he just calls me on the phone (you should see how many calls I get from Kevin in a 24 hour period. Friday I left him with the aide and I was making stuffing in the kitchen and he left me 5 voicemails. He was - at the most - 20 feet away).

So anyway, this is why I don't sleep much. I get awakened constantly and I just can't fall back to sleep all that easily. I just find it easier all around to stay up until he does go to sleep. And as soon as I hear him snoring - I RUN to my bed!

I sure hope it's soon...


Gretchen said...

Leslie, you honestly are my hero. It's like being in that newborn baby stage but with no end in sight. I feel for you! *HUGS* Maybe this would be too much stimulation for Kevin, but thought I'd mention it cuz it helps with the baby - I use a fan for white noise. It's not like we need it at night when everyone is sleeping, but it seems like it has a calming effect on him. Maybe it would for Kevin too?

Tracey from Pittsburgh said...

I wanted to comment exactly as Gretchen about your situation being like having a newborn. The difference now is that there is no light at the end of the tunnel, at least that you can see anyway. God Bless you Leslie!

Holee said...

Well, I don't have a brain injury but I do take meds. They wreck sleep. Any change in meds or even taking it 20 minutes late will change sleep totally. Most of my posts are done in the middle of the night, so I sort of understand this part.

I think my suggestion for a "job" had nothing to do with sleep. When I think back to the day you first gave Kevin his wallet when he was still very sick, his reaction was to offer the money to you.

Then recently when you had a child visit, Kevin wanted to give his out grown clothing to this child.

Somewhere in what he remembers and what he doesn't seems to be the things we learn as we grow up..paying, sharing, giving. Just be useful to someone else. I just think that Kevin might react to knowing he is doing something for someone. I think it might make him feel good to know he is "working" or sharing or whatever it is that he feels from the past that made him want to give.

It certainly won't help with sleep but it might help to connect those feelings he gets. It might wake up the ones he has forgotten.

I think when he gets the bike that might help with sleep or at least wear down his engery enough to rest and let you rest more.

Anonymous said...

I have no suggestions, Leslie. I cannot image one of your days. My thoughts and prayers that it gets "better" somehow and that Kevin continues his progression. Brains and TBI are such delicate situations. As an x-ray tech, I have seen CTs of peoples' brains that you would think they could not function and yet they were walking around just like you and me. When my father had his stroke, I couldn't even see it on his Ct yet he was totally devasted - unable to talk, walk, function and lived 11 miserable months in a hospital bed while I prayed for God to take him (he was 90 years old and had 89 GREAT years). My point is you never really know. My husband had a TBI 1986, total left side paralysed. Seventeen days later he regained most of his function. They said hewould never work again. He's been working ever since to include heavy labor.
In medicine, we don't know real life, we know whose hands we are actually in . . .not a MDs but the good man upstairs.
May you have strength to get through this and may you have the ability to treasure your days with Kevin, no matter how trying, no matter how many times you are up and down. You will get that strength and Kevin will continue the baby steps to being "better".

I just wish I could reach through the screen and say, "I'll help you" but Ford City is many miles away.

God bless you! I'm thinking and praying for your family,

Anonymous said...

Leslie...people just don't understand TBI. Having a brain injured son myself I know the hell you are living through! It is a never ending pain. Micah is 9 years post severe TBI. Everything you mentioned is EXACTLY what goes on with my son. They CAN'T hold a job...they can't concentrate for any period of time. I feel your pain Leslie...and unless you have lived it, I really don't think you can have any concept of what TBI is like.

God Bless you all
Clarion, PA