Wednesday, September 9, 2009

Day 468 - Sep 9, 2009

Kevin was in a great mood most of the day. He did really well in therapy - even riding the stationary bike for 14 minutes and doing the steps a long time as well.

He had speech too and the therapist said that Kevin is able to concentrate for longer periods of time and that is just great. I can't remember what words I told you about before, but he is also saying banana and watermelon now.

But this evening Kevin's mood turned sour. No clue why, it just did. I caught him looking in the mirror at himself and I wonder if that might be it, but I can't say for sure.

Hopefully he wakes up in a better mood tomorrow.

I am a little concerned about the aide that has been here. She is really nice, don't get me wrong, but Kevin just isn't accepting someone being in the house with him. I don't think it's personal, but I think I might have to call Maxim and talk to them and see if there is anyone else. I just don't know though. This is the 4th aide and I just don't know if it's going to make a difference to have a different person come in. He really seems to resent having her here, but he resented 2 of the other 3 (the other one we really liked, but she just never showed up one day). The sad part is that he will barely allow her to do anything for him. He still screams "mom' all day and if she tries to take care of whatever it is, he won't allow her - no matter how busy I am. And it was one of our goals to have the aide take him to some of his therapy appointments giving me some free time, but he absolutely refuses to go anywhere with her. Flat out refuses.

So my question of the day would be - do I bother trying someone else or just go with what we have? I just don't know if it's her or if it really is just having someone here period.

And I know the company has been trying to find someone that would also be more the companion that we have all been discussing, but apparently they don't have anyone that fits the bill or they would have called by now.

I guess I'll give it some thought throughout tomorrow and Friday and decide by the end of the weekend.

And now I really need to get to bed - or try to anyway.


Miss Em said...

Hello Leslie,

This morning I know all about the 'try to get some sleep' thing. It's a quarter past 3A and I'm still wide awake.

This is the 4th aide??


**Could it be that Kevin is trying to insert some control in how he wants his life to be lived by deciding who it is that he TRUSTS & wants around him on a constant basis??
And, 'The' only way he has found to truly control some of it is by getting rid of the aids that he does NOT..TRUST..OR those that have privately shown him "pity" and/or have tried to treat him as if he is incapable of thinking, feeling or doing for himself.
**As you well know Kevin is suffering from TBI and probably PTSD but that hasn't stopped him from figure-ing out how to play an X-Box game and a lot of other things either so he has figured out that if he makes the aides go away then it just the people that he TRUSTS the most to be around him all the time.
**Kevin's TRUST is something that HE doesn't seem to give litely. HE TRUSTS nearly everyone that HE remembers before the TBI and very very few afterwards.
**Kevin may not be able to explain it but when you sit down with him with pictures of everyone he knows 'ASK HIM' who he TRUST to help him, understand him and treat him as a MAN and as a FRIEND.
**'ASK HIM' who he feels that shows him pity and treats him LESS than a man and NOT as a friend.
I can't explain it but I truly believe that Kevin 'FEELS' it when people do these things and does NOT like it one bit.

It's a strange thing TRUST. An animal can tell by the vibes you put off if they can TRUST you or NOT. I will lay odds and probably win, that Kevin can tell when he Can or can NOT..TRUST by the vibes all the new people put off and he can NOT explain it either.




A Service/Companion Dog.

I know it may seem like more work but think about it before you NIX it.
Talk it over with Breezy, Mom/Dad/Sis, the theropist and his Doctors. See what they think of the idea. Make certain to ask the family members who would be willing to take on the task of caring for the dog when you have to leave for surgeries.

That's all that I ask.

Best Candidate.....
**An older dog that's had some training in how to be a service/companion dog.
**One that can be trained to trot beside his trike when he's riding.
**One that is not skidish of how Kevin walks.

Remember a dog....
Won't judge Kevin by what he see.
Doesn't care how fast or slow Kevin can walk.
Loves to spend hours in the pool.
Chases things that Kevin throws.
Wants someone to love and TRUST.
And just might be able to help Kevin when he's in his 'DOWN' moods.

Well that's the best that my tired old grey goo-ee matter can come up with at 4:10A.

I off to find that large marshmellow with my name on it.

Miss Em
Austell, Ga.

PS..Hope I at least made some sense in that long winded diatribe.

Anonymous said...

Hi Leslie,
I remember you as NOT being an animal person, but I think Miss Em might be on to something. Ask Kevin what he thinks about a dog, and go by his reaction to the idea. We'll continue to pray for all of you.
Love, Aunt Mona

Bonnie said...

Do you think that Kevin won't let her do anything because he knows that you're still there? I was a babysitter for 11 years and I know it was always 10 times harder to do my job when the parents would work from home. The kids would always know that they were there and wouldn't let me do anything.

You could do a trial of leaving for a very short period of time. You could just take a walk around the block and have the aide call you if it begins to backfire in any way.

I love the idea of an animal companion. I am a little biased though because I'm a huge animal lover. Even if you're not an animal person, I think a dog that's been trained as a companion would be a lot easier to cope with. The training that therapy dogs have to go through is very similar to the training that seeing eye dogs go through (from what I understand). So, even though (like any creature) they'll have energy bursts that need to come out, their job that they've been trained to do is the most important thing for them. Plus, if it's a lab (and you don't have a liner on your pool) they're a water dog too.


Anonymous said...

Miss Em, you are amazing at 3:00 a.m. I especially agree with you re: Kevin's desire for control and him prefering YOU (or Breezy)to be there with him rather than the aide. As you know, you will not always be able to be there. I would suggest that you not replace this aide right now. Sit down with her and see if she is up to the task of being with him when you are not in the house. If yes, then go somewhere close by, at first. She can always call you if he starts getting unmanageable and you can get there in minutes. Make sure you have locks on the doors, too, and give her an extra key while she is on duty.

I love dogs and a nice, unconditionally loving dog can bring so much joy to all of us. These dogs are so wonderful, loyal, and very talented. Also,they can sense the moods of their very own special person who they love totally. Please don't discard this idea lightly! Give it some thought.



Anonymous said...

Hi again,

I have contact info. for a lead on a dog.
Local (Florida)contact: Jean Shields

Just in case....

Cathy M

Anonymous said...

Although I think the dog thing is a great idea. Maybe a cat you all loved the cat you had before. And when Kevin was here think how he reacted to Milo. Don't laugh Leslie but we just got a new puppy, Annie, she ( we had to get a she because to many males in this house to begin with) is a lot of work and I'm thinking it may be to much for you at this time. But if Kevin would take the initiative to take on that task it may be a good idea. And a "trained" companion dog would be great. The downs to it would be there is not much of a yard to play in, but maybe a trained dog would have other needs, walking a dog daily would be good for Kevin and the dog. A dog is sometimes also a good greeter that maybe someone who would not approach Kevin for whatever reason that we don't understand but they may approach to a cute dog. What about a big brother program? Have you checked into that yet? I'll have to pro and con this idea some more talk with you later. Love you all, Miss you all.

Tracy A. Jack

Anonymous said...

I agree with the dog as a good therapy for Kevin, not just for Kevin but for the entire family.

With most inground pools, there is no liner; therefore, a trained dog would provide great companionship for Kevin to hold onto and swim around with. They have saved many a lives too.

A dog can become a persons very best friend, but they cannot get a drink of water and food all by themselves. They need care. They also cannot be scolded if they need to go out to go to the bathroom and no one lets them out. They also don't clean up their own poop.

That's a pretty good exchange - food, water and bathroom duty for ALL of the love, companionship and yes, work and love they give in return.

Good luck. It is a big decision to make.

amy grace said...

When my mom was dying of brain tumors, she wouldn't let anyone but me take care of her (not even other family), so I *HAD* to have a night aide so I could sleep. I think we went through at least 5 or 6 before we finally found THE ONE that worked for my mom. It's a personality thing...some aides really *get* how to deal with certain types of patients and their particular needs.

Even with the good aide, we had to work with my mom, constantly reminding her that I was "off-limits" when I was sleeping. Mom generally would agree most of the time that I really should be allowed to sleep. However, especially in the beginning, often times she'd just flip out until the nurse had to come wake me. We ended up working out some weird arbitrary made-up system with a painting of a panda bear. I honestly don't remember the details, I think it mainly had to do with establishing a visual/verbal cue to remind her that I needed to be allowed to sleep. So that the nurse could use the code word "panda bear" or show her the picture to remind my mom to calm down and let her be the one to help rather than waking me up, and to calm down. The picture and code word were associated with ME telling mom that I gotta sleep, instead of just the aide laying down the law.

Brains are complicated even when they're healthy :) You WILL find the right combination of factors that will help Kev mitigate his dependency on you. It will take some trial and error, and time.

Obviously, very different medical conditions, but boy-oh-boy is the dependency part parallel. Definitely about trust as Miss Em was saying...I was really honored to be the ONLY person my mother fully trusted with her care. But...a girl's gotta get a rest every now and then :)

Anyway...things will get better! As he seems to be getting more aware, his ability to comprehend boundaries and the importance of YOUR needs hopefully will improve, too.

Take care, I think about y'all every day.

Amy Grace

Jessica said...

It's always good to hear that Kevin is still into doing his therapies and is progressing. I'm especially encouraged that his concentration is improving!

It's interesting that Miss Em brought up the companion dog because my mom was telling me just the other day about news segment she saw on TV. A soldier with PTSD had problems interacting socially and therefore didn't like to go out, so he got a companion dog who was trained to sort of put himself between the soldier and other strangers. It got him to relax because then the focus would be on the dog, not him. Of course the dog was really cute and friendly. It was also trained to help him in a store that had aisles by peering around the ends of the aisle to alert the soldier if there was someone coming so he wasn't caught off guard. Pretty amazing stuff!

I'm praying and hoping this aide will work out in the end, or that you can find one who will. It's got to be hard having a stranger come into your home like that. I'll be thinking of you all and praying for you. Take care.