Reading Between the Lines

First of all, I apologize for not being more regular at posting blogs. I am not finding the energy or impetus to write. Thanks, FTD.

One good thing, at least I think it is a good thing, I have noticed since having FTD is the ability to see through all the crap people present us with. When someone says something to me, I can sense hidden undertones in someone's voice, their body movements and can see the changes in their eyes. This helps me to distinguish between the lies and the truth, as well as hidden agendas.

This goes beyond recognizing when someone is lying to get out of a social event with me, the "one with FTD" who might embarrass them. That happens often enough that it doesn't take much to sense that. I think all of us experiencing FTD develop that sense. Like after pictures from a "family" event pop up on Facebook that I was never invited to. I don't have many filters, so I am likely to make a comment like "Oh looks like I missed a good time." or "Damn this disease, I must have set the invitation aside to respond to and then totally forgotten about it." It is actually a form of entertainment for to see them squirm in their responses. Not as entertaining are the ones who openly say they didn't invite me because they didn't think I would enjoy it or other such nonsense. This affects the caregivers as well as those of us with FTD.

I must admit that I have always been an empath. I could sense people's feelings or feel the negative "vibes" in a space. This is not something I was open about. I never shared it with many people at all.  This sense has become stronger since FTD. I attribute that to FTD ridding me of so many filters. It seems they affect both incoming and outgoing thoughts and words. I have always been able to sense things by looking into a person's eyes. Those senses have been accurate enough that I do believe in that ability.

I will give you an example. Back when I was still working, I didn't start until mid-day. When I approached the employee entrance, I touched the handle and immediately pulled my hand back and realized I did not want to go in there, that something wasn't right. When I did go in, I quickly learned the boss had gone on a rampage and had fired three of  his six employees. Fortunately, I worked for the person who rented office space from him, not him, but the mood was black for several days.

When someone asks if I want them to do something for me, I see the "Oh, please, please say no, please, please." in between the lines. This is right along with the ones like, "I didn't know you like to go fishing, I would have asked you to come along." Substitute fishing with any other activity. Thinking about it, I don't think I would like to fish anymore.

I have no explanation for this and also do not know if others with FTD have noticed this with themselves. I would truly appreciate feedback from those with FTD as to whether they have experienced this increased awareness. 

After getting so far into this and after an interruption, I am scratching my head and trying to remember what point I was aiming to make. I guess no point, except to let people who care for or know someone with FTD know that it is not safe to believe they don't know what is going on or what you are saying to others when in earshot of you. They can probably also sense when you say things like, "Oh, you wet your pants again, come on and we'll get you changed again." you actually are thinking, "Oh, damn, wet pants again. Does it ever stop? Why do I have to deal with this?"

I am learning to use this increased awareness in my role as a caregiver as well. I am becoming able to slow down and think about what is causing a behavior or what he is needing and can't express. 

I have started letting him sleep as long as he needs, or wants, to in the morning. Well, to a certain extent anyway, If he is still in bed at 3:00 in the afternoon, which he often is, I do go and start to wake him. But I do it gently now. I will crawl up the bed and lay next to him and put my arm around him. Sometimes he says "that feels nice." or "I love you." Don't get me wrong, there are still days when he says, "No, I want to sleep some more." or "Leave me alone." When that happens I try things like "Well, you do need to come out and take your medications. If you do that, you can come back to bed or nap in your chair." 

I also no longer take for granted that he can NOT do things. If he asks for a snack, I will get it and put it on the counter. I give him a few minutes to walk over and get it. If he doesn't, I ask if he wants me to bring it to him. Never, "Aren't you ever going to come get this snack you wanted?"  I have decided that he knows when he has the energy and when he does not or when his legs feel steady and when they aren't just like I know my own limitations at any particular time. I am very aware of that since FTD gives me the same problem. I never know when my legs will work.

I am also more observant of his activities and movement. If he is has had a good evening, I will go to bed before he does. He has a list of what needs done and I go over it before I turn in: turn off the heat on your chair, turn off the TV (both red buttons), close the lower lock on sliding door, turn off all lights except the one on your table. I will admit that I do not go to sleep until after he goes to bed and I go out and check everything, especially the heat feature in his recliner. It doesn't not automatically shut off like his old one and I worry about fire. I feel, though, that I am helping his sense of independence.

On the other hand, if I recognize that when his evening has been stressful, I stay up and help him get ready. We are at about 50/50 on this right now. 

It is not all peachy though. A few nights ago, he got out of bed for three different reasons and fell three different times. When he falls, he just looks at me like "Okay, pick me up." Uh, sorry that just won't work.  I have been using the techniques I wrote about a couple blogs ago. I coax him to lie on his belly, move his legs and arms forward until he is in a crawling position and have him crawl to a sturdy piece of furniture where I can assist him in standing. The looks I get could kill because I won't pick him up. 

The morning after the three falls, he was fine. I had a really painful left hip, a large bruise on my right leg and arm, along with a very sore shoulder. I talked to him again about how he cannot stiffen his body and expect me to lift him. Then I showed him again, while he was awake and alert, how he can get himself up with me aiding him. 

I don't expect miracles and I know that as his Alzheimer's Disease and my FTD worsen, it will become more and more difficult. It is really a dirty trick to give us both dementia, but I will manage as long as I can.