Friday, July 6, 2012

Tips for our respite provider

David is my respite provider, a.k.a. Dean's helper. He provides Dean an extra pair of hands and helps Dean get some things done in half the time he could get things done on his own which is now a third of the time slower than before his's that for a math

I've talked to other wounded warrior wives who receive respite or are looking into it and have lots of questions about how to find the right fit. Here are some things I've learned by trial and error with David, our respite provider.

I was talking to David's boss about how things were going and because I know what I'm thinking only after I talk about it, I learned a lot of things by having this conversation with him. There were a few areas that I couldn't put my finger on as to how they needed improvement.

The first couple of days David was here, during times where neither Dean or I were talking, David would fill the space with questions or stories. I realized that to be Dean's caregiver you have to be comfortable with silence. Dean can't take constant noise and silence provides him with needed rest. More than just silence, I realized, a caregiver needs to somehow direct their energy in a non-outward direction. In other words, even when someone is silent, if their energy is outwardly focused you can "feel" that they're antsy or like they need you to entertain them. I finally realized that David needed to bring a book or laptop or a project of his own so that when we were in silence he could focus his energy on his own thing. WOW did that help! David's boss conveyed that to him and on the fourth day he brought something to read. I actually got things done that day and Dean did well. I felt like David could take care of himself over there.

Something else I discovered is that it would be helpful if David was watchful of when Dean left the room to get away. If David noticed that, he could ask me "Is there anything I could have done differently"? and that would allow me to give constructive criticism if I had any. Sometimes I would say "no, he just had a hard night last night" or I could say "yes, we have to make sure he has it quiet when he's reading something" (as an example). But if David were to ask that question, I could just tell him honestly and he could learn how to help Dean better.

The last thing I figured out was to tell David that Dean can only handle 2 inputs at one time and that that is his limit! A third input would overload his circuit and he'd not be able to think or talk and may have to leave the room. I explained to David that if little Dean is making noise in the living room (input 1) and David was asking Dean a question (input 2) and then a helicopter was flying by outside, that David should pause his talking until the helicopter was gone. This helped David greatly!

I am definitely taking note of all the little things that help Dean so that whenever we have different respite providers in the future we will have a better grasp of the tips that are helpful for the caregiver.

Isn't he better now?

Since Dean went to Texas for his TBI treatment lots of folks assume that "he's better". I've had to think of how to explain the reality of the situation to people.

Although they helped him at a soul level by giving him hope and happiness again, they could not truly help him in a way that would be evident at home. It's kind of like how playing a video game of tennis is not the same as playing tennis. The video game removes all the hard parts. Project Victory removed all the day to day hard stuff. There was no noise from a preschooler or a wife, no noise from the neighborhood, no unexpected actions going on around him. Everything was like a life simulation. He had therapists whose job it was to help him with one thing each hour for 7 hours a day. They could make sure that he only had to focus on the one thing without any other input. And even without any stress, he still got migraines by the end of the week because the cumulative effect of working each day caught up to him.

Another thing they could not do is build a closeness that he has with me. He could learn to follow their routines and guidelines and he learned how to live within their environment to their expectations. But he was adapting to try to get out of it what he could. Again, it's not like real life. In real life you have to decide the goal to your own day, you have to make all the decisions about everything yourself, i.e. what to eat, what to wear, when to wake up, what to work on, how to accomplish the goal you set, etc. This all doesn't seem difficult, right? Add to those relatively simple sounding tasks that people usually have more than one goal to accomplish in a day.

  • What to wear -- do I wear work clothes or nice clothes, what's on the schedule for the day, what will the weather be like, do I wear shorts or jeans, are my shorts clean, do I have t-shirts.

  • What to eat -- when did I eat last, do I remember that I want to eat healthy food, what is healthy, what is the right amount, what is easy enough that we have all the ingredients to that I can do without much thought.

  • When to wake up -- how do I feel, do I hurt, can I be pleasant if I go downstairs, I think I'm hungry, should I go down just to eat something and then come back up to rest, what did I do yesterday, was yesterday a super stressful day so that today I should take it easy, was there something I needed to get done today.

  • What to work on -- what projects am I in the middle of, oh yeah I have folders, oh yeah I needed to get something, oh yeah I need Karen's help with that, oh yeah I need to fix this first, do I have what I need to fix it, where are my folders, do I have anywhere to go today, is Karen going anywhere today.

Those are all monumentally difficult questions to figure out for Dean and those are just 4 questions he has to start each day with. Project Victory answered all those for him. They set the schedule and controlled how many answers there could be to every question to make it simple. If he didn't ask one of those questions someone was there to remind him.

With all this, I love when people say "didn't that treatment in Texas help him"? Ummmm.....ya, sure, and no.

Now what about BIG issues like losing weight, buying a house, or planning a vacation? Those are so out of Dean's league that he doesn't even know they are things TO think about. I juggle every decision and only give him small nibbles of it as he can handle thinking about it. It makes everything take a LOT longer than it does for most people.

Although you can read my blog about how wonderful Project Victory was for Dean and what a great impact it had on him, reading this blog puts into perspective all that a treatment facility can't do and that only a caregiving wife can do :)