Please Understand Me

Enjoying SFSU Campus

There is a book on our shelf called "Please Understand Me" its about our character and personality traits. They give you a survey to determine your traits and then discuss how these affect the way you see the world and interact with others. I haven't taken it in years, but I think I was an "ENFP". I remember Patrick's survey being almost the opposite of mine. Truth is, we communicate and see the world differently. I think it's been a strength and a weakness in our marriage, as well as on this ALS journey. Communication in ALS over time has become one of our greatest challenges. In every marriage, being heard and understood is very important. Couples go to counseling to learn to be better listeners and speakers. With ALS you must add on the problems of simply being heard, having words translated correctly and recognizing emotion and sarcasm with no way to recognize inflection. When you add these in, there are always misunderstandings.

Patrick's ability to communicate verbally is extremely limited. I understand him at best about 5% of the time. And this 5% likely has more to do with me anticipating his needs versus really understanding what he's saying. This 5% is hindered by a ventilation mask that he wears throughout most of the day. I suspect every ALS patient/caregiver creates some of their own communication systems. We use a system that was presented to us by our speech therapist, Amy Roman at Forbes Norris ALS Clinic. The system is designed to work with a card you hold up in front of the patient and they select letters through eye movements. Letters are grouped by the vowels A-E-I-O-U. We don't use the card, but we do use the system of A-E-I-O-U - here is a video showing the use of the card (go down on the page to the video entitled, 

AEeyeOU :  A Very Easy Low Tech Communication Method for People with only Eye Movement

When Patrick doesn't have access to his Tobii communication device this is the best we have. As a caregiver, it forces you to really think about what you are translating, because it's done letter by letter. Frankly, it's hard to remember the first five letters when you're on the sixth and pen and paper is not always readily around. You have to focus on identifying each letter and if I'm in the middle of something I have to stop and devote all my attention to the translation. If I have a headache or I'm tired, this is almost impossible without pen and paper. 

Sleepy drugs and the A-E-I-O-U system really don't work well together. Patrick takes Ambien to help sleep each night. It's an effective drug, I'll tell you that. Each night we watch a bit of the Tonight Show with Jimmy Fallon right before bed. He was quite frustrated one night and was trying hard to tell me something. I was tired and it was not a good moment for me to be translating but, he was so insistent that I kept trying to decipher what he was trying to tell me. I realized, after about 10 minutes, that he wanted to see Barry Manilow who was the guest coming on to the Tonight Show. So, I left the TV on for him to watch. I didn't realize that he was such a Barry fan - news to me. The next morning I turned on Barry Manilow music and said, "hey you'll enjoy this." He gave me the oddest look. After talking with him later, he had no recollection of our "stressed out" A-E-I-O-U discussion. Yep, it was the Ambien. I've read now that Ambien makes you do all kinds of things and it is recommended that you don't take it alone. Apparently, it makes you a Barry Manilow fan (for the record, I was already a fan of Barry's).

At an ALS support group very early on in Patrick's diagnosis, there was a caregiver who abruptly stated that she now was the driver and her husband had become a backseat driver, and she wished he would just "shut up." It was a tense moment in group and another caregiver commented "be careful what you wish for." Now before you judge the first caregiver too harshly, I will tell you I've had the feelings of both these caregivers. Before ALS, Patrick was always the driver in our family. I was perfectly content enjoying the scenery, singing songs on the radio and managing the ins and outs of stuff in the car. I'm now the driver and this was a difficult transition for him and me. Yes, when this transition occurred he was a backseat driver (still is, sometimes) and it did annoy me. But as with all things we adjust.

At the mall near SFSU

Patrick hasn't driven in about four years, when the first area you lose is your hands your ability to drive ceases very quickly. His speech was not impaired at this point so he could readily give me his opinion on the route I took, the lane I chose and the speed at which I was going. For me, it was pretty annoying and stressful driving with him. For him, it was a tremendous loss of control and independence. The conflicts in ALS between caregiver and patient are not always resolvable, all we can do is to try to recognize the other person's perspective which is not often easy in the moment. 

So, he's had to mellow out and I've had to manage the stress of always driving. We talk very little, it just isn't possible. When necessary I will translate through A-E-I-O-U but it's very difficult to concentrate on driving and translate at the same time. Recently, we've gone to and from San Francisco a couple times to get Caitlin set up for SFSU in the fall. Driving in the city is stressful for me and I don't look forward to it. On the last trip, I spent time translating for him while driving, only for Patrick to tell me "I'm right." He was referring to the lane change he suggested and I wasn't sure about so I didn't follow his direction. In the moment, I was not amused. No, this was not our finest hour.

As I've discussed in prior blogs, Patrick uses a speech generating device created by Tobii Dynavox. This device allows him to communicate by eye tracking. Modern technology is pretty cool. But just like the A-E-I-O-U system, it has it's limitations and challenges. It's greatest challenge is the practicality of using the device - it takes a bit to set it up so you want to do it when he's settled in. It's not practical to set it up during his morning or evening routines of showering, dressing, bathroom etc. It sits in front of his face so we don't keep it up when he's watching television. Really, the greatest time on the device is in the afternoon and he stays on it for about five to six hours a day. The Tobii doesn't work well or really not at all outside. The sun light reflection interferes with eye gazing. I've had discussions with the Tobii representatives and this appears to be a known difficulty. The Tobii is like any other computer - it has a battery life, it has to be updated, it locks up sometimes and on occasion it just doesn't want to work properly... So, it's an amazing tool, but not a perfect solution. 

Yes, sometimes Jake gets in on the act.

The ability to tell sarcasm or joking can be challenging - it's much like when you get a text and you are trying to tell if the person was serious or being funny. Patrick's good friend Johannes - where the J sounds like a "yo" comes out as a "jo" on the Tobii. It's kind of funny - Johannes, if you're reading this, ask Patrick to say your name.  

As the disease continues to progress, our communication becomes more and more basic. At night, to understand what he needs (he rolls over a couple times each night) - I simply say, "if you want "________" make a noise. That is probably our simplest form of communication, not pretty, but effective.  If I'm being honest, the prospect of future communications does make me a bit anxious. One of his fears is being "locked in" - which is when the ALS patient can no longer move, including the eyes so no form of communication is available. Give that a little thought - it's a scary notation. 

When we go out, we don't often use the Tobii - it's not practical. We went to the movies a couple weeks back and got home late and settled into our evening routine. Because of this Patrick didn't wind up being on the Tobii for almost 48 hours. When he did get on the Tobii, the first thing he said was, "do you know what it's like to not be able to communicate anything significant for 48 hours?" My initial thought was to be defensive - I took it as he was complaining. I'm really no saint, but once I took a step back, I said to him, "I have no idea what that's like." I've thought about this comment since then and really I can't imagine - can you? Communication is critical to the self, it gets your needs met, allows you share your feelings and thoughts and keeps you connected to the world. We adapt to the challenges as best we can but it's not the same - it is truly one of the greatest of losses for an ALS patient and their families. 

I hope you are having a day filled with great people and good conversation. Today is a nice day, the dog is sleeping and we are enjoying the sunshine. Hope all is well with you and yours.