Everyone Needs Encouragement

I don't know if it is the paranoia FTD has given me or if people really are becoming so much more "me" oriented in their lives these days. If this is the new normal, then I am glad that I am no longer considered normal. I can only be what is normal for me and have no desire to conform to the standards of others any more. Too many people don't seem to realize that everyone needs to be congratulationed and encouraged.

I was recently invited to participate on a task force for the state of Pennsylvania. I felt, and still feel, honored to be able to do so. It involves the state's role in responding to the issues involved with dementia. I had previously volunteered to be considered for the role, so it is not like they scoured the state and came up with me. I say that because I don't feel like this opportunity makes me any better than anyone else dealing with dementia. There are many more of us in the state who would also jump at the opportunity. I know it will be a struggle for my brain to do this but I am doing it for the same reason I advocate for those with FTD and the Association for Frontotemporal Degeneration. The more we are out there spreading the word and the more people hear about FTD, the more likely it will get attention from the people who can help.

I am honored to be able to speak on behalf of those affected by FTD, but it is not something for which I would look for kudos. I did not start telling everyone in town about this opportunity. I told the support groups that I visit, the AFTD, and just two family members in addition to my husband and daughter. Almost all of these people seemed just as happy about it as I did and provided a lot of encouragement. My happiness comes from the fact that the state is taking into consideration, FTD and other dementias in addition to Alzheimer's.

After a week or so, I mentioned it to four other people who I thought of as friends. One was even a friend from church, one was a family member and they all know I have FTD. The first one said, "I hope you are able do it." The next, "Good luck with THAT!" The next said nothing at all, just started talking about how she had served on a local board for 10 years. The final one said, "Interesting" with no enthusiasm at all, then changed the subject. Yeah, I am done telling people about it. I will just do it and hope and pray that some good comes from it.

This brings me right back to the subject of toxic friends and family that I wrote about a couple weeks ago. All four of them are now on my list of those to avoid. I talk about toxicity again because it just confounds me. I do not understand how other people care so little or do not realize how much their reaction affects the other person. They cannot realize how much people need those words of encouragement. Can they possibly not care about what goes on in someone else's life?

I have always been just the opposite. I always got excited for people who accomplish or achieve something. This is for everyone, even someone I talk to in line at a store. I appreciate people, recognize their worth and like to take the time and opportunity to encourage them. I know there are others who do not. There are always a few who are jealous of anyone's achievement or really just don't care about anything or anyone. I always thought this was a tiny minority but now I wonder just how rampant it is. Even with FTD, I still recognize that need in others. Even while battling the loss of sympathy and empathy and fighting off the total apathy, I care. Since FTD, I may not be enthused about what someone is telling me, but I still recognize their pride and remember to smile and encourage them, even if it is bit more forced now. Yes, I do realize that in the future I may no longer be able to still do this.

Isn't what I am talking about just common decency? Even if you do not care at all about what someone is telling you about, is it no longer the right thing to do to encourage people? Isn't it the same principle as when someone is wearing the most ugly shirt you have ever seen and they ask you if you like it? We are supposed to learn early in life that you don't say that it is ugly, you find something good about it, like "I love the colors." 

It is well know that those of us with FTD have no filter between brain and mouth. If we think it, we are likely to just go ahead and say it. Even with that loss of filter, I still find myself being nicer than many people without any brain disease are. I do still say embarrassing things from time to time, but I don't believe I say things that are downright nasty or inconsiderate.

My loss of filter is more likely to be something like, "You've been here long enough, I want to take a nap." or the favorite one I did in a store, "What the f**k are all these people doing here?" If I do say something inappropriate that insults someone and I am told about it or recognize it myself, I apologize. Even if I did think it and meant it, I still apologize because I realize they may have been hurt by what I said.

My psychologist, who totally understands FTD, insists that I don't have total apathy, at least not yet. She says this because I can realize that I have said something inappropriate and apologize afterward. My senses of empathy and sympathy are definitely significantly blunted and sometimes non existent. It seems to be the same with the apathy. It is blunted rather than nonexistent 

If I can battle through with the lack of these emotions, as well as the downright meanness that often comes with FTD, I really cannot understand why there are so many people who were right there to pop my balloon when I talked about this opportunity that was so exciting to me. 

That is when I must come back to the toxic people I wrote about before. I must learn to stop involving myself with this kind of people. Family members are no exception. Of the four I mentioned, one was a family member, one is someone from my church whom I considered a friend and the other two were professionals whom I have been dealing with for fifteen years and have become quite friendly with. We have even socialized outside of the professional relationship. There is nothing that says that after being insulted or hurt that you have to stand there and beg them to do it again.

The first time I saw a psychologist was 25 years ago, following a tragic event. She was a former nun who was married to a former priest. She was the most prim and proper lady I think I have ever known, at least in the past 40 years. She also gave me the best advice ever. She sat there, back straight, hands in her lap looking lovely, and said "Cindy, do you ever get tired of being a tit to the whole world."  In other words, knock off worrying about everyone else before you worry about yourself. There is no way I will ever forget her advice because the words were shocking, coming this lovely lady. Sometimes, I have to remind myself of her words and remember to put myself first. I must learn to not provide this kind of people the opportunity to do it over and over. 

A caregiver needs encouragement to keep going. Even if it is someone who is not offering to assist or give you a break, the fact that they recognize all that you are doing can possibly boost your spirits just enough to go on for another day. Of course the opposite is true as well. If someone is criticizing what you are doing, that is someone you don't need around you or listen to. 

Someone with FTD needs encouragement as well. If we manage to accomplish something, a word of acknowledgement or celebration is appreciated. It encourages us to keep trying. If someone notices that we are really trying even if we don't succeed,  acknowledging how hard we are trying can allow us to continue. If we get upset or depressed over things that we can no longer do, reminding us of what we can do just might improve our mindset for a while.

Like most things, it is just common sense (and common decency). This is why the term "care partners" came about. We are a team and if we don't acknowledge and encourage what the other is doing, we are no longer a team.