The last four days, I have been feeling, more hurt and angry than ever before, but, even worse, that I do not matter to the person closest to me. With FTD, it is common to feel like you don’t matter. You can't do the things you used to do or, if you still can do something, it takes at least three times longer to get it done. You often lose the ability or authority to drive a vehicle, which kills a lot of spontaneity and eliminates a lot of choices in your day to day life. You have to wait until someone can and will drive you, hopefully to your first choice of where you want to go and not a substitute that suits the driver better. Every thing has to be scheduled well ahead of time... no spontaneity, as I said.
The biggie, though, in feeling like you don't matter is having your options taken away from you. Decisions are made without asking your input. Suggestions you make are dismissed. Your desires are no longer validated, but I will get more into this problem later in this blog entry.
The first place I, and others who have expressed the same situation, felt like I don't matter anymore is when my friends started ignoring me. Oh yes, promises are made... "We will get together soon". "I will call you". It gets to the point where I simply say, "Yes, that would be nice" knowing full well that I won't hear from them. When, on the rare instances that I do manage to get together with one, especially if it is in a restaurant, it isn't long before they start fidgeting in their seat, which tells me they don't want to be there. One guess that I have as to why is that they are afraid someone they know will see them sitting with someone who is stuttering and having difficulty speaking or who no longer has the best table manners. I will sit and pick apart my food, remake my sandwich to my liking, etc. With my lack of impulse control, I will often say the "wrong" or "politically correct" things, and often quite loudly. It comes down to the fact they are embarrassed to be seen with me. So, to all my friends and family who avoid me, I miss you, but I do understand. I forgive you. But... don't bother calling now, it's too late. What is interesting to me and others with FTD who have experienced the same thing, the worst offenders are those from our churches. I no longer attend church because of my inability to deal with crowds or control speaking out if I don't like or agree with something. I have, however tried to remain active in the women's group of our church. It gave me a place to socialize and keep in touch with those I considered my friends. I no longer attend those meetings either. The past few meetings, I have come away feeling like a social pariah. Don't get me wrong, not all of the members were like this, but enough that I will never go back. Enough who caused me to be totally embarrassed, worthless and unwanted, that it is not worth attending to see those who were still friendly.
Another thing that makes me feel like I don't matter, is when people don't hear me. I know I have blogged about his one before, but it is important. One of the things I have developed with FTD is sometimes non-stop chatter. So I do understand, somewhat, why people block out my talking. This becomes very hurtful as it makes me feel that they don't care what I have to say or that it's not worth listening or responding. I have reached the point that when they turn and say "Huh?" or some such thing, I just say "never mind" or "it wasn't important". Then the blame gets turned around on me somehow and I hear "No, no, don't do that to me, what did you say?. Me, not do that to you? Excuse me? You have just indicated to me that I am not worth listening to and you want me to repeat it?
This past week, we were facing a major life decision that would have a large effect on the rest of our lives. My daughter wanted us to move to the state where she lives so that she could help care for me and support her dad in doing so. She and I had both laid out our reasons why this would be a good and smart thing to do. We were even starting to do things that would be necessary before we moved, before we put our house on the market. Then, I was told that we must discuss this. The discussion involved in my being told why this would not work, why he did not want to move and all the negatives as he saw them. Then the discussion was over and he announced that "we" had made "our" decision. All the reasons why I wanted to move, primarily to spend quality time with our daughter while I still can, were rejected outright. I did not matter.
I don't like to blog about such personal situations, unless it is not obvious whom I am talking about, but I made an exception this time. Fortunately, I have a very strong, albeit small, support system and I will get through this disappointment. The anger and resentment will most likely stick around for a long, long time. I do not like that I no longer matter.
I hope this can be eye-opening to all of you who are caregivers to someone with FTD or to anyone who has someone in their lives who has FTD. Don't be quick to dismiss them. FTD is not like Alzheimer's, we still remember and we still are aware of what is going on around us. We still hurt and we should still matter! To those with FTD who read this, I hope it helps you to feel less alone, and that you DO matter!
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