I was thinking of posting this under Burn Out for some of the new Caregivers, but figured someone might need that spot and this is kind of discussion more than anything.

I am counseling a new stroke family at work. They are asking some of the questions we have seen here of late: how long? when this, when that? how soon? will he ever or is it gone?

So often we as stroke-affected families get so many conflicting prognoses from doctors, therapists, counselors.

I used this example from Bruce's own recovery as an example.

Bruce, like so many survivors, was in love with the TV. Many of our survivors here shared with me as to why this was and it certainly helped me understand and make it less of an issue. But the volume people! I know now, from everyone here, that volume usually doesn't enter into it, even if there are no hearing-related issues from the stroke. They honestly don't notice it.

Every day, all day during the early recovery days "Bruce turn it down, Bruce the volume. Now, in all fairness, TV programming has much to do with this. He would get the volume good for a nice movie and then BAM a commercial would come on or he would change channels-loves to channel surf-and I would be on the ceiling, or blast out of bed or off the couch, knowing something was wrong or he was on the floor, only to find out it was the TV. Laugh tracks and synthesized background music are the worst for me. Hopefully in 2012 this will be resolved.

There were times I just turned the TV off and took the remote. Nights I cried I was so tired and could not stand another moment with the thing on. I threatened only to have that last about 5 minutes. I punished-no sense, I know now, he had no clue what I was talking about. Only rule that was consistent from day one home was TV off when I came to bed.

As the days, months went by, I found just saying "Volume" in a normal tone of voice, brought him to realization that it was too loud. I explained that if you channel surf at low volume, then turn it up when you get to where you want to be all the time.

We are at 2 1/2 years stroke and finally seeing a great improvement. Bruce is up at 5am. I leave the TV on the Weather Channel, volume 2 when I shut it off. So that is where it is at when he turns it on at 5. Apparently new rules for the TV programming kick in at 6 am. Bruce has figured this out and makes adjustments so as not to wake me. Nap is better. Sometimes he falls asleep only to a program change that is louder and at night, when I get home (he usually waits for me) volume goes down and lately he himself is turning it off about 9:30pm or so.

This is stroke recovery. It is individual to us, that I know. But it is an example of just how long this all takes. Something as simple as volume control on a TV.

As my understanding of this improved, so did my patience with the more important, more complex issues. He can pay the bills and balance a checkbook, he can function well at work-which is all math-but he can not understand a simple concept of too loud. All strokes are individual as to the damage in what areas of the brain. But this is a clear, easy example of what survivors and their caregivers live with every day and the length of time it may take to get to a true level of recovery. Debbie