Feeling Useless

From reading posts on Facebook, it seems I am not the only person with FTD who experiences this problem.  I cannot still do all the things that I used to be able to do.  This frustrates me to no end. Some days I feel totally useless. There are two things that compound these useless feelings.  The first is when family members, and in some cases, friends refuse to recognize this fact. They assume that I can still do all the same things.  What makes this so bad is that they ask me to do something that I am no longer comfortable doing, usually because I have been embarrassed by trying to do the same or a similar thing previously.

I have a friend who admits that she is in total denial that there is anything wrong with me. The coincidence of this is, that one of the first things that clued me into the fact that there was something wrong happened when we met for lunch a few years ago, before diagnosis.  We were sitting in at a table in our local Applebee's when I realized my shirt was inside out.  Now, I probably wouldn't see anything wrong with that, but back then it really embarrassed me.

My husband is so very supportive of me.  He readily admits that I have FTD and that it has progressively worsened.  But he tends to think of me as I was before FTD.  I tend to think of this as the love filter.  He desperately wants me to be the same.  He doesn't want to face the horrid facts of the disease. He also thinks I can still do a lot of the things I used to be able to do.  I try to cook every evening and he tries to help out, but I am not sure that he realizes that there are days when I just don't feel like I can do it or want to make the effort. On those evenings, he will gladly take a bigger role in helping or will run out to get something, but I don't think he gets why I can't make the effort sometimes. Plus, I am so very reluctant to ask for help, because I don't want to admit to myself that I can't do it.

The biggest problem we have, is that he still thinks I can take care of "things."  He was a busy executive in the healthcare industry and worked very long hours, and often on the weekends. I, fortunately had been taught by my father to be self-reliant and could do a lot of household repairs. What I couldn't do, I was good at arranging it to be done. I managed everything.  Problem is, he still thinks of me as able to do all of it.  He willingly encourages me to hire people to do all the stuff I used to do, don't get me wrong. Problem is, I have had trouble, for the last two or three years, making phone calls.  Some days I can't handle talking on the phone either.  Part of this is the difficulty I have getting thoughts or words out so I end up stuttering or just coming up blank.  Still, every time something needs to be arranged, he turns to me to do it, whether on the phone or online. When I appear reluctant and say that I don't want to, his response is usually "But you do it so much better than I do!"  I know, I should just refuse to do it, but then it falls into that category of feeling useless. It is a never-ending cycle. I end up doing it successfully, albeit totally uncomfortably, so he continues expecting me to do it.

The other compounding factor is that some days I convince myself that surely I can still do this easy task.  I end up having to ask for help (this has always been difficult for me to do) or don't ask and then end up breaking down.

It all boils down to total frustration, disappointment in myself and usually depression for days.

I have seen so many caregivers of persons with FTD complaining on Facebook about their "loved" ones being just as I have described, unable to do the things they used to do or that the caregiver wants them to do.  Some of them say horrible, horrible things.  I have tried explaining to them that their loved one is just as frustrated as they are and that it is not that the person is choosing to not do something, it is that they cannot do these things anymore.  I cannot imagine what indignity these people with FTD are suffering. It angers me beyond belief.  It defies logic for them to think that their loved one is intentionally messing their pants and that they just don't want to bother going to the bathroom or cleaning themselves up.  No one would make that choice.  It just seems cruel that they would think that and I can only imagine what abuse they are heaping on their so called loved one.

Please, please, please, if you are caring for someone with FTD, please realize that we slowly lose the ability to do things.  This disease is fickle and most of us with it vary in what symptoms we develop, so you can't really compare one to another.  But trust me, not one of us loses our abilities intentionally.  Believe it or not, it frustrates us as much, if not more, than it does you, the caregiver. We also are aware that we are progressively losing abilities, both physical and mental, and developing new pain. I cannot begin to describe the headaches. Think of the worst headache you have ever had and multiply by at least three and you might start to get an idea. We also recognize what a horrible death we are facing and each new symptom that we develop scares the living crap out of us. But this depressing topic that I will save for another day.  After all, if I don't think or talk about it, it won't happen... right?  Please?