The Ups and the Less Ups : May 22, 2011

More or less back to square one. Pop has fallen off in his progress during these past three weeks. Mom is still in Verbank but leaving for Kansas on Wed.

Well last time I was writing this blog we had had a really good week or two, felt hope. We felt that there was a bit of light in Tal's progress.

That was three weeks ago. Moms trip back to Verbank is coming to and end and she will be going back to Kansas, this coming Wed. So perhaps when Mom gets back we will hear a little more detail about what has gone on these past few weeks.

Because the news isn't good. Pop has gotten back onto the "I cant do it" bandwagon of this physical therapy. We know this because we got an email from the social worker person out at the nursing home that "we would start thinking about "long term" care. Does that mean that Dad stops the physical therapy? Is there really no use in his continuing to do this?

We don't know but the fact remains the Tal says that the physical therapy is still "almost impossible" (yes, his words)!

Yes I know Moms presence/absence probably has alot to do with this. But somehow I'd really feel a whole lot better if Pop felt the drive to work on his rehabilitation for himself. If you didn't have to be the coach, if Mom wasn't the only one he was doing this for.

Because that is potentially a dangerous position for her to be in. Can you imagine just how much she puts into helping him and trying to make the slightest little progress for him? And then the fall back down when the next day it all falls to pieces again? Every day whether it is good or bad for that matter leaves you absolutely emotionally exhausted.

For Mom and I, speaking on the phone with him this month has been very difficult. This is the first time Mom has experienced this and I feel very sorry for her. The first month Dad was in the hospital, I too took his inability to speak with me on the phone as a personal problem between us not as a brain trauma related problem.

But that was before spending time with him. Yes there were off days but there were also the wonderful days where we were really able to communicate profoundly. And the fact of matter is he can be really introspective and carry on quite an incredible conversation, if you are there, alone in the room with him!

So it was very reassuring to read an article in the Economist about cell phone usage, drivers and accidents.

Thought I would copy in an excerpt here.

"The human brain has to work harder to process language and communication with somebody that is not physically present (Conversation with passengers is much less distracting because those passengers are also aware of the traffic situation and moderate their conversation.)

A study by Carnegie Mellon University using brain imaging found that merely listening to someone speak on the phone led to a 37% decrease in activity in the parietal lobe where spatial tasks are processed. "

Perhaps more than just his being "tired", this stroke trauma complicates any phone conversation! He has real difficulty responding to you. Yes he can talk a mile a minute about a subject that he is interested in but there is little or no back and forth like a normal phone conversation with someone. So I am kind of relieved to find that out.

We will find out more about his situation too, hopefully, at the end of the month when Dad goes back to visit his neurologist, Dr Kumar, for his first check up since leaving the hospital!

Thanks for your messages and your good thoughts. Both Mom and I are incredibly lucky people.

Thought I might copy in an email here from one of his far away friends,

"...it's good to know you've all been on home territory and surrounded by friends. Tal is my oldest friend, but he has some that predate me! (Not really surprising, because he's the kind of person everyone wants as a friend.)..."

So wish I had better news! It isn't easy to write what I have written but I think it is only fair to share the real situation. Mom and I both feel totally out of our league here at times. And who knows? Perhaps there is totally something else going on out there!

But we will deal with this too. We aren't looking for a miracle. Those days are decidedly over. But there has to be a road that we haven't yet turned down that will lead us to a better place. That is my hope, Mom's hope too I think.

Lissa (in Paris)

4 Message(s)

Posted May 26, 2011 7:24am

by Abigail Jeffries

Dear Lissa and Romig
I can really empathize with the emotional ups and downs, the exhaustion, and the hope for some new perspective or avenue. For Mom, becoming a long-term care resident did mean no more PT and no more medicare paying for her care. I am so glad that you have each other and your support network. Are there stroke centers of excellence? Does Tal respond to a change of setting -- being outside? Thinking of you every day. Love, Abbie

Posted May 22, 2011 11:18pm

by Raymond Rathert

Lissa. Don't give up. Head injuries are so frustrating to deal with. That was the case with my daughter when she had her accident back in 1979. We let them put her on a trial drug for people with such injuries and we didn't know whether it was the real drug or not. She was acting so strange and out of character that we finally decided to stop the drug and find out whether it was the drug or placebo. Unfortunately, it was placebo so all the out of character things she was doing were just her current condition, not caused by the drug. Turns out, there was no drug in sight that would or could help her. She had to start writing little notes on small sticky pads and tear them off and put them on a mirror or her dresser so she could remember what to do next. Things like brush my teeth, comb my hair,turn off the lights, turn off the stove etc. Of course, wanting to do something is one thing but if you decide you don't want to do it then you have to think of something creative to get them to do it. Maybe you can find a "back door" to his thinking process to get him to try to do something. When all the traditional procedures don't work try to think outside the box to look for something that might just inspire him. Give him a reachable goal and see if he can reach it. You are probably in for a longer care situation. Maybe it would be better for him if he were in a more familiar environment, like his home but I realize that is probably a couple thousand miles away from Manhattan. I'm sure his doctor will have some recommendations for you to consider.Of course I share your concern for Tal and I understand how hard this is on both you and your mother. Frustration and the inability to communicate or convince Tal to attempt a task may seem hopeless, but sooner or later something will probably come around and improvement will be noticed. If that doesn't work for Tal in Manhattan then you may have to consider other options. Just keep thinking positive and don't be discouraged. We are keeping you in our prayers and I still think things will change for the better in a matter of time.

Thanks for the update and keep us posted.

Sincerely,

Ray & Barbara Rathert

Posted May 22, 2011 4:48pm

by Adele HARS

Thanks for the update, Lissa. Call when you can.
xo
a et al.

Posted May 22, 2011 3:02pm

by Marie Cash

Let us hope that Tal is just missing his other half and that once Dorothy Ann is back next to him, he'll perk up!