Getting There

I take two steps forward and one step back. I'll eventually get there, but I'll be dancing.

"The nerve fibers from the cells were severed, but the cells themselves remained intact." Nerve cells that have not died can form new connections. It goes on to say, "The new research suggests that instead of the sudden recovery Wallis seemed to make when he began speaking and moving three years ago, he actually may have been slowly recovering all along, as nerves in his brain formed new connections at a glacial pace until enough were present to make a network."  http://usatoday30.usatoday.com/news/health/2006-07-03-brain-rewired_x.htm                                   

You may be able to do it one day, but not the next. That's alright. Your brain is rewiring. You can't see what is happening in the brain. When you can't do it again, try as much you can to finish. If a therapist is there, they will help you...correctly. 'You can't do it' is probably the brain making neural connections. You have started rewiring, making a groove, and you are making that groove deeper by doing it again.  http://thoughtfulveg.blogspot.com/2013/03/groove-me.html

Rewiring won't be fast. The person above was 19 years before it was noticed. I, myself, have taken years before notice.
  

The original reports are on Terry Wallis:

http://www.jci.org/articles/view/27021

   
http://www.jci.org/articles/view/29172

For more on Norman Doidge, the person who gives the tracks in the snow ("making a groove") analogy:

The Brain That Changes Itself

 

Tracks In The Snow (photo by Don Yegge)

What To Do All Day?

Inspired by Judah Woodard. His mother made sure his day was stimulating for him- not too much, but just enough.

When time for school is up, sometimes there is something else, sometimes there isn't. Programs after your child is out of high school is limited in some places. An adult child struck with injury may have nothing when coming home from the hospital. It may be a parent, and there is definitely nothing.

These are just some basic guidelines. You don't have to do them if you are happy with your current situation. Also, you may be happy, but want to add something. Pick this apart, and take what you want.

You will have to learn from the hospital basic care needs. Before discharge, spend an entire day with your loved one. Training may only be an hour. You can't put a whole day in an hour. By itself, the training may be inadequate. If possible, more than a day may be required of observation for the learner.

If your loved one is in school, you already do personal care needs. You can just start the day later (not too late, or this can cause disruption).

If in school, find out what they are working on. It will be much easier. Take notes. You might get ideas on making a schedule by sticking to the class schedule. Again, it may take more than a day to learn everything.

Make a general schedule ahead of time. This can be divided into morning, noon, and night. You will know "this" has to be done in the morning, "that", needs to be done at lunchtime, and then you have "this" every night. I ended up dividing my night into two parts: evening out-of-bed, and night in bed. A schedule like this is so general, it can be flexible around doctor and therapy appointments.

The caregiver might do all the home duties, but certain things can be set aside, like making the bed. This task may be set aside as a real living learning task. (The task should fit the person. This is not for someone in a wheelchair or unable to move.) This task may take a person 2 hours every morning. It doesn't have to be all the way done, or even done perfectly. A "Good try" can be said and then the caregiver can re-make the bed.

Meal prep is a good time for life skills training. Maybe they can set the table for every meal. Is there a certain cooking task that was being worked on at school? If so, continue that. Higher skill levels can work on recipes.

Laundry is good. I think I started with folding towels. One day I was given a sheet. I was just getting good at towels! Progression was also in the task. That's all I did for a half-hour; just fold. If I finished early, the nurse got more.

Other household chores are appropriate. This may entail the person tagging along with the caregiver or just starting a task. If that person can complete a task, then good. It may take twice the time, but they should do it daily. It can be re-done if necessary.

MOBILITY TRAINING
This won't even apply to some. For those who do get around, and the community has one, they do need to learn how to use the community transportation system.

Here is a map of Centers of Independent Living, http://www.ilru.org/html/publications/directory/ Click on your state. Hopefully your community has one. Usually these places have some sort of training. That is why they are IL, or Independent Living. If not in your community, but you can get to one, ask if you can see their curriculum to give you some ideas.

With a therapist helping, this can be set up, http://braininjuryknow.blogspot.com/2010/12/rehab-at-home.html Exercises can be done throughout the day.

Caregivers also experience a great deal of stress. Please contact your local county mental health to see if they offer support. Individual counseling and support groups help.

Don't think of this as a program. It's a way of life. You are alive...so live!



 
*This was completed with the help of Denise Holladay.