I try really hard to keep my spirits up and to downplay my FTD when I am around others. Those of us with FTD still want to have some fun and enjoy some bits of a normal life. It is difficult to enjoy being with people when they are acting like I am going to die next week or that I am imagining the disease. That is one end of the spectrum. The other end are those who ask how I am doing but when I start to explain some worsening symptoms, they zone out. They don't want to hear that. They want to hear me lie and say everything is just great. It becomes pretty darned difficult to keep a smile on my face some days.
There are several different categories people, depending on how they react to my FTD. I am pretty darned sure it is the same with the others with FTD as well. It is important to know that I am not in this alone and remind you that nearly 20% of all dementia cases are caused by FTD. They are not all Alzheimer's Disease related.
The first type of people is one I have talked about many times. These are the ones that when I tell them I have the disease they argue with me. They argue that I look too good or I remember too well or I wouldn't be able to do things so well if I had dementia. Many of these people have no knowledge of FTD and don't care to listen. I believe they truly think I don't know what I am talking about. These I call "The Disbelievers".
The second type are the friends and family who are frightened off by the disease. They have disappeared from my life in droves. This is something I hear often from others with FTD. Some times I actually think they believe it is contagious. I suspect that it is more that have cared for or known of someone with Alzheimer's Disease. Since most people think all dementia is Alzheimer's, they are not wanting to deal with it again. Some find excuses to stay away. I don't think this is to explain it to me. It is simply easier to stay away if they convince themselves there is a reason. I admit it is difficult to be around me or anyone else with bvFTD at times. We can end up coming across as being pretty darned obnoxious more often than I would care to admit. Yet, I believed my family and friends would be with me and support me through this journey. Don't get me wrong, there are still a small hand full who totally support, have learned about the disease and try to help. Other than these few, I call them "The Deserters".
I thought these first two groups were the worst. They were the worst in the earliest years of my disease. However, now that most of them have removed themselves from my life, I deal with them being out of it just fine. I understand why they walk away or avoid me, I truly do. It hurt at first, but like the old adage, you learn who your friends are.
Now we come to the next group... "The Ostriches". These are the people who have stood by me but are in denial of my FTD and the resulting dementia. They still think I should be able to do all the things I used to do. Part of this comes from me trying to keep a happy face. Add in the fact that I do push myself to do as much as I can. If someone sees me out doing some yard work or sees that I have baked or cooked something really yummy, they still rave that it is wonderful that I can still do these things. What they don't know, or choose to ignore, is that my energy stores are quickly used up each day. I have about a 2-3 hour window, usually midday, where I can be productive. The things I manage to do are nowhere even close to what I used to be able to do. I am pretty much limited to one activity a day, whether it is spending an hour pulling weeds, cleaning the kitchen floor or going out to lunch. That is it for the day and, sometimes, wears me out enough that I can't do anything the next day either. The ostriches don't see that because they choose not to, whether it be a conscious decision or not. Sometimes they hurt me worse than the ones who have distanced themselves.
The past two weeks have been particularly tough for me. Several of my symptoms have worsened. My legs are getting worse and cause me to stumble and lose my balance more often. Some days, usually toward evening, my right leg will drag. I must step with my left leg, then drag my right leg along, holding on to things as I go along. My headaches have been nearly unbearable and pretty much constant. No medications help them. My speech problems have escalated to the point that it is often too much of an effort to carry on a conversation. I have had trouble swallowing more and more often. I actually became panicked in Sam's Club last week after tasting a food sample and beginning to choke. Fortunately, my husband was with me and kept me calm until I was able to clear my throat. My double vision is significantly worse and never corrects itself anymore, it is constant and adds to the headache issue. It is also extremely frustrating. It used to just double my distant vision, but it is now affecting my near vision. I am frightened that I will no longer be able to read.
The ostriches in my life choose to ignore these changes. I was silly enough that when a friend asked how I was doing, I told the truth. The reaction was "Oh, to me you seem just like you always have." said in a condescending way. I don't believe this person was deliberately brushing my disease aside, but rather was denying it to themselves. The other frustrating thing that occurs is when someone will ask me to do something. I say that I don't want to or would rather not. What I get is those wonderful words, "But you've always been so good at it, much better than I am!" I end up, full of anxiety, and loudly explaining that, yes, I used to but not anymore. I compound this problem by eventually giving in nearly every time. I know I shouldn't, but it becomes easier than arguing or listening to them whine.
The last type of people I will discuss are those who, while having a basic understanding of FTD, do not comprehend the symptoms of it. For instance, the lack of empathy that I have often explained. If you call me to tell me your problems, I will listen, but I don't really care. I have no feelings of empathy or sympathy. I also tell it like it is which comes from the lack of filters between brain and mouth. If I know you are wrong about something, I won't tiptoe around it, I speak it out loud and proud. In addition, if you start complaining about something like a headache you have had for two days, a sore leg or being tired, it doesn't mean much to me. These people are kind of like the ostriches in my life. The difference is that they don't deny there is something wrong with me, they just really, really don't want me to have it. The biggest difference, though, is that they are here for me when I need them.
FTD blunts most emotions which can truly offend people who won't take the time or effort to learn about the disease. I was shocked last week while watching the rescue efforts following last week's hurricane in Houston. Everyone was raving about the wonderful rescues of people and their pets. I was happy they were rescued, but not really touched emotionally like I would have been pre-FTD. One event actually made me shed tears. One of the volunteers risked his life and went into a destroyed house to rescue an animal. He spotted a wooden display case containing a folded U.S. flag. Knowing that it was most likely a treasured keepsake honoring a loved one, he continued to risk his life and got it out. I have one of those flags on my fireplace that was presented to me at my father's funeral and know how much losing it would mean to me. I was so touched by this small act of kindness by one of the heroes.
It is interesting how every once in a while, something will make it through to my emotions. It was a touching, sad yet happy moment in someone else's life that finally allowed me to shed a few tears. That is the way it is with FTD. Yes, we are still the same person we used to be. We just are unable to behave the same way, speak the same way, move the same way or live without pain. Others may not be able to see that we are still in there, but it truly is their loss. When they see someone doing their best to cope with FTD (and other life ending diseases), they should be in awe, not afraid to remain in their lives.
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