Easter morning, on the way home from church -
Keith: So what all do you have to do to get ready for Easter dinner?
Me: Well, that's kind of a loaded question. What exactly is it that you want to know?
Keith: I just asked what you have to do to get ready for Easter dinner. Why are you acting like I have ulterior motives or something?
Me: Keith, there's a lot in a question like that. Are you asking what I need to do to get the kids ready for Easter dinner? Are you asking me what I need to do to get the house ready for Easter dinner? Are you asking me about the food itself? What specifically are you trying to ask me? Because I could go on for two hours about what all I have to do to get ready for Easter dinner.
Keith: Look, all I wanted to know was if you needed any help when we get home before I leave to go see my dad.
Me: Well, okay. No I don't need any help. But do you see what I mean? Asking if I need any help before you leave is a lot different than asking what I have to do to get ready for Easter dinner.
Lately, this seems to be the way our conversations go most of the time. Keith and I have gone from a couple with excellent communication skills to a couple struggling just to understand one another. I'm not sure if it's the disease itself or the medication, or maybe a combination of the two. Difficulty in communicating effectively is a problem faced by many PWP, and sadly, it is one of many reasons why PWP are often viewed as being stupid, or as one rude person said, "bumbling idiots." This article from e-ParkinsonsPost, is an excellent source for why communication proves so difficult.
In Keith, I see a little bit of everything, with Language Structure topping the list. Often, he only speaks half a sentence but expects me to know what he is saying. He readily admits that many times he barely expresses a thought, with the expectation that we will automatically know what he means. Another problem topping the list is Emotional Processing. This is a biggie and almost tied for the number one spot, mainly because it's such a huge issue for me. A few years ago, when Rielly-Anne was just beginning to talk good and understand a lot of what was going on around her, and when Keith's facial masking became a little worse, we had a talk addressing how to deal with that around the kids. We decided that the best thing to do was for Keith to over-exaggerate his voice and facial expressions so that there would never be any doubt in the children's minds how their daddy felt. Somehow that didn't translate to mom needs it too. Maybe it's because I know the disease and what it does to him; I know all about facial masking, hypophonia and dysarthria, and as an adult I am able to understand that if Keith doesn't smile at me, it's not because he doesn't love me, only that right now, he physically can't. Well, that's what you'd think, anyway.
Nearly everyday when Keith comes home from work I ask him the same thing - How are you? And every time I ask he says one of three things - beat, tired or wore out. Lately, my reply to that has been , I know that. Other than that, how are you feeling? Simply put, mama needs to see the love too. Keith rarely over-exaggerates his voice or facial expressions for me. His blank, frozen, facial-masked face is pretty much identical to his pissed off face. The last thing you want your husband doing as soon as he walks in the door is giving you a pissed off look. Technically, I know why he's doing it. Emotionally, I just want to see his face light up sometimes. Keith has difficulty emotionally expressing himself, and I have difficulty reading his emotions. When you add all that to the problem of having difficulty with something as simple as putting together a sentence, it makes for some pretty tough situations.
Then there are those times when Keith does add emotion or facial expressions to what he says, but that can cause a whole separate issue of misunderstanding. Sure, he can force a smile or feeling into his eyes when he speaks, and he can put emphasis on his words and take the time to put those words together, but that still doesn't guarantee that all those components will come together, forming a perfectly understandable and correct train of thought. For example, just yesterday I got out of bed earlier than usual to sneak off to the Y for a quick workout. Keith was already up when I came downstairs -
Keith: Wow! You got away from the baby and out of bed without waking her up!
Me: Yes. I've done that lots of time. (I was thinking he had forgotten due to memory issues, yet another blog post!)
Keith: I know you've done that lots of times! I didn't say that because I was surprised, I said it because I thought it was good!
Me: Oh. Sorry! You said it like it was the first time I was able to get out of bed without waking her.
Keith: Well, that's not what I meant!
So you see, even if the words and facial expressions are there, it doesn't necessarily mean that they will be interpreted correctly. He spoke the right words, but his inflections, emphasis on certain words, and facial expressions led me to believe that he thought this was a first-time thing. Unfortunately, almost every thing Keith says anymore I must take a moment or two to really try and understand exactly what it is he is saying, or trying to say. I have to admit, sometimes when I am busy or preoccupied with the children I don't take that time like I should, and that usually results in a huge miscommunication, and often some one's hurt feelings.
Yes, we are lost in translation, but all is not lost. Thankfully, we have done a lot of research, we have a great specialist, and some great family and friends who understand. So next time if you happen to be at the bank, or at work, or at the grocery store, and someone is speaking to you in an unintelligible manner, don't automatically assume he's an idiot - he just might be my husband, lost somewhere in translation.