Communication

When I resumed blogging last month, I vowed to myself that I would be more considerate of the feelings of caregivers. I am trying to always keep my caregiver experiences in mind. At times, though, it seems like I am picking on caregivers because they are the ones who are capable of change while the FTD'ers often are incapable of changing.

Communication is extremely important in any situation. With FTD, it becomes even more so. Talking to each other becomes a challenge for the one with FTD as well as the caregivers.

One of the biggest obstacles is that it is very difficult for someone who does not have FTD, even for the best and most experienced caregivers, to understand that while it quite often comes across as though we are ignoring you. Most often, it is quite the opposite. We do try to hear and understand what is being said to us but, as we all know, an FTD brain doesn't work in the same way as a healthy one.

The first issue is that our brains, as well as our bodies, often are slower to react to anything.

When someone talks to me, it takes at least a couple seconds to realize someone is talking, then a couple to realize they are talking to me. By then, the speaker is several words into what they want to say and those are the words that usually clue you into what the subject is.

So, by now, I am lost. I truly am attempting to hear and understand all the words but this is often difficult to do when you have already missed so much of it. I will give you an example: The other day my daughter said what I interpreted as "... ... blah, blah blah... the powder room still is really pink." Later, I remembered what she had said and went to look in the powder room because I did not remember putting any pink in there because it wouldn't go with my color scheme. I didn't see any pink. When I came out, I said "The paint in the powder room still makes it stink." She got upset and snapped "I just said that a few minutes ago!"

I quickly left the room, then returned and told her what my brain had heard. She looked at me dumbfounded but at least we had a good laugh.  

I had not ignored her at all, it was a perfect example of how to not communicate when FTD is involved.

The best way I have found, back when I was a caregiver and now with FTD, is to make sure the FTD'er is aware you are about to talk to them. The trick is to make sure they know you are about to say something. If you are nearby, a gentle touch and looking them in the eye is great. I find that if someone goes to the trouble of doing this, I know to pay attention. If this is not possible, it helps if you say a few words before you say anything on the subject. "I want/need to tell/ask you something," just a few words for their brain to kick into gear to give them the best chance of hearing you. Ideally, you could do both.

Another thing that helps is for the speaker to take a couple good breaths before speaking to ensure the tone of your voice can not be interpreted as hostile. Just the other day, someone told me how his caregiver had verbally attacked him. When he told me what was said and what had led up to it, it was easy to see how this could have been intended as a helpful conversation yet interpreted as a hostile one. I probably wouldn't be speaking in a pleasant tone either but if she had paused and breathed a couple times, she may have been able to control the tone of her voice. It may have kept things calm and not led to the hostile afternoon he described.

Volume and tone of voice make a huge difference and it would be ideal if both caregiver and FTD'er could control their own. Unfortunately, in real life, it often doesn't work that way. Often, I believe the caregivers, as well as family and friends, try to speak more loudly to me. They think that I am not hearing them and that if they speak louder, and often slower, my ears will hear them. If only it would be that easy.  Hearing aids are often of no help either because the issue is with the brain, not the ears. 

Communication is not limited to speaking. Gentle touches, even gentle hugs, communicate volumes. To me, they say, "Hey, I still care about you." Sometimes though, even if the hug is gentle, it can feel too confining. With me, hugs are not the way to apologize to me because I am probably still hurt and/or upset. But gentle hugs or touches are often the best way to say hello or I still love you or I'm sorry you were upset.

One more thing, listening is as big of a part of communication as speaking. There is nothing more upsetting to me than when someone finishes my sentence, thinking they know what I am going to say but that they can say it more quickly. That is often true and more often than not, the finish it correctly.  It can also be interpreted as "you are so stupid you can't even get the right words out."  You don't need to tell us that, we already often feel that way ourselves. Please believe me, it is horrible to feel that way. In fact, my daughter made it a rule that I can never say, "I hate myself" or "I am so stupid!" Instead, I say "I hate this disease!" It has helped because it reminds me that I am not stupid nor worthless. Simple things often do help.

Do I think it is possible in all circumstances to follow all these suggestions, especially when in a hurry or there is a concern? Absolutely not. Believe it or not, I yell sometimes and can not always follow my own suggestions. However, if you do these things most of the time, it won't be as frightening or depressing  to the FTD'er when there is yelling and frustration.