June 27, 2008

The Aphasia and Apraxia Challenge for Caregivers

Yesterday Don and I had a half hour 'conversation' about something he really wanted to tell me but the only words he could get out during the entire time were: feet, baker, dad, and gone. And, of course, 'yes' or 'no' as answers to my questions. When my questions got too far off track to what he wanted to tell me, he'd repeat those four words as if saying them over and over again, with increasing the volume, would bring me perfect clarity.

Those of us who routinely deal with someone with severe language disorders know that we start our guessing games with generalities, trying to pull out more details in hopes they will lead us where we need to go to understand what our care recipients are so intent on telling us.

"Is this about something you just read or saw on TV?" ---- No.
"Is this about your dad?" ---- No.
"Is it about someone you know personally?" ---- Yes
"Relative?" ---- No
"Friend?" ---- No
"X-coworker?" ---- No
"Neighbor?" ---- Yes

Thank God, we had a meaningful clue! Then I listed all the places Don had ever lived and found out that the neighbor was from his childhood. I did a mental groan because the stories from before I knew my husband are harder for me to pull out of him than the stories from time frames when we have some shared memories. But he is stubborn and so am I and I've learned since his stroke that there is no way we're going to avoid this aphasia/apraxia driven dialogue. So I sat down for the siege, knowing nothing in the world is more important to Don at that moment that getting me to understand the connection between those four, tiny words: feet, baker, dad and gone. It was at that point that Don did a gesture with his hand, like drawing a knife across his feet and he repeated the word: gone.

Over the half hour I was able to figure out that a neighbor kid of his from when they were both approaching their teen years was held down by one guy while another axed off his feet. Don somehow knew the people who did this to the kid and he told his dad which resulted in the bad guys getting hung. Why this story was on Don's mind is still a mystery. I asked him if he saw something on TV that reminded him of the event and he said, "No." I was afraid to dig too deep into whys and wherefores for fear it would take another half hour to figure it out. But I was curious. I still am and if his brother was in town I'd probably call and see what he knows about the story.

It occurred to me afterwards that if Don had told this same story in his pre-stroke days he would have drawn it out with rich details and made the story last the same half hour that it took to tell it now in his post-stroke language disorders way. He was a gifted storyteller with a million stories like this one and he hasn't lost the desire to share them. The difference, though, is that now the 'listener' does so much work to draw the bare bones of the story out that it's mentally exhausting. All of us who have been there, done that know exactly what I mean. ©

P.S. Some of you might remember that I entered a writing contest a while ago that had a $5,000 prize. I didn't win---didn't really think I would---but here's a link to the article I wrote for the contest. I'm proud of the way it turned out. Disaboom: a Web Company Making a Real Difference to People Touched by Disabilities.


Anonymous said...

I think I've figured out the perfect xmas gift for you: a Deerstalker hat from the British Isles in Grey Herringbone, plus a pipe. Tom

Renee said...

I cannot imagine how frustrating that must be for you husband to have so much to share and to struggle to tell the smallest points. As someone who is very verbal I think that it would really depress me. How does he keep his spirits up?

The Aphasia Decoder.... said...

I get frustrated far sooner than Don does. He just keeps at it until I finally figure something out, rarely gets upset or frustrated at the process. As to how he keeps his spirits up he's really a pretty happy guy. Some of it's the anti-depressant he's on and some of it's just his natural character to accept things and make the best of them.

Jellen said...

Been there. With my aphasic husband, I ask that he give me a topic word -- one word that gets me in the ballpark. But if I had a dollar for every question I must ask per day to communicate with him and help him communicate, I'd be rich.

QVC said...

well i am waiting for chrismas

The Bee Folks - Lori Titus said...

I completely understand where you are coming from. Honestly, I'm glad that someone else feels the same way! Even more honestly, I'm kinda glad it was you. You are almost always so upbeat with your posts, where even the most frustrating thing has an upside. Yet, even you talk about how this is not fun any more...

With Dave, he is ok when he is rested and calm. Many people have told us that they have not noticed a speech impediment - always astonishing to me, because I rarely hear him give a complete, real sentence when talking with others.

Right now, with the triplets - let's just say that lack of sleep and stress of caring for multiple kids has not helped Dave's communication skills. I usually have to get him to stop multiple times and give me a topic so that I have an idea what he is talking about. The topic is often wrong, and I have to get him to start over. This is new, and I think indicates how tired he really is.

Sometimes I feel one of us should sit down and right a book about coping strategies with aphasic patients!

mums the word said...

Curious is anyone has experienced and can give advice on Intensive Aphasia Programs. We have been accepted at University of Michigan in March but want to get best value for the price. Any/ all advice and experience profoundly appreciated.
Happy Everything

The Aphasia Decoder.... said...

Mums the Word:

One of the guys from Don's group speech class actually went through that intense speech program---I'm thinking it was in Lansing, MI, but I'm not 100% sure on the location. He and his wife said it was a waste of their money and time, that he didn't improve at all. They found the teaching college where we met them to be more helpful and that only cost $20.00 for an hour session, twice a week. HOWEVER, everyone is different and experience with intense speech therapy seem vary a lot from person to person; that's the impression I've gotten from talking on-line with different people. One person I talked to was very pleased. About five others I'd talked to were right in the middle---not really excited about their progress or especially disappointed.

The guy I know from group class has both aphasia and apraxia in a severe degree like Don. Of the others I know on-line I really don't know what their starting points were except for one woman. Her son said she couldn't say anything before the program and could do single words afterward. He was the one who was most pleased and felt the program was worth the money.

Best of luck with the program. Work hard and hopefully, that will pay off for you.