Are They Really Out To Get Me?

I don't think there is anything more frustrating to someone with FTD than to be told they look like there is nothing with them.  I know how much it frustrates and irritates me because I know I don't look nearly as good as I used to.

Yesterday was a glorious day, so much so that I went outside and sat on the wall along our driveway to soak up some  sun. Our neighbor saw me and came over. We spent a few minutes talking about the new neighbors and the progression of my husband's Alzheimer's Disease. After a few minutes, he looked at me and said, "Cindy, you are looking good." I replied that it was because FTD doesn't always show in the face until later stages. His reply, "No, you really look good."  After bristling a bit, I replied "Thanks, I guess the strain and fatigue of caring for someone with dementia when you have your own kind of dementia just doesn't show on the face."  That was my polite way of saying "Stuff It!" I guess he got it because he walked away shortly after that.

This really bothered me, as usual. I was angry and felt rejected as a person, not just as someone with FTD. Then this morning, I read a caregiver's post on one of the support groups about how her loved one is so paranoid.  My immediate reaction was "Oops!" I consciously realize that I do suffer from paranoia. My FTD friends have often remind me of it when I am questioning them about how someone has treated me. That is why I reacted to my neighbor the way I did. I did not believe him that I looked good, even if he was implying that I was looking good despite all I was dealing with. I probably did look better than I usually do because I had been sitting there relaxing and probably even had a little color on my cheeks for a change.

Responding to this caregiver's question really made me think inwardly. So, why do I suffer from paranoia. A huge part of it has to be the anger and frustration I feel at not being able to do the things that I was able to do pre-FTD. Not being able to, and, not having the energy to do them even if I could.

I know I have previously talked about the loss of my artistic talent and how that has affected me. I hate it! I loved my painting, my ability to create gorgeously decorated cakes and the awards I have won for my ceramic art. Perhaps I took too much pride in them, I don't know. While I loved my accomplishments, I always down played them to others. I think it is more that I experienced self-satisfaction from it. It was more a part of my self-identity. We all need to feel appreciated and that we can accomplish things that we want to.

When FTD robbed me of these talents, my identity, it was beyond frustrating and I realize created a lot of the anger I had toward the disease. Now, whenever anyone talks about my artwork or sees some of it, I cringe. I don't want to hear about it. In fact, most of my artwork is hidden in the basement. Seeing it makes the feeling of loss much worse.

In addition to the loss of my artistic abilities, I have lost my ability to cook the way I used to, not to mention baking. Again, I felt people identified me by these abilities. I do recognize that, for someone with dementia, I do look fairly good. Plus the fact that I still smile easily helps some as well. However, when someone says that, I believe they are lying just to make me feel better. Yep... paranoia!

Does FTD cause paranoia?  It surely can.  "Paranoia is sometimes a symptom of certain physical illnesses such as Huntington's disease, Parkinson's disease, strokes, Alzheimer's disease and other forms of dementia." (Quote from Mind, For Better Health website."

Paranoia can be much more than just thinking someone is "out to get you". Yes, it does often manifest itself in that way. However, it does a whole lot more. It strips a person's confidence and can leave them lonely and frightened. It can cause panic attacks and the tendency to worry about absolutely anything and everything. People with paranoia often appear to be selfish and self-absorbed. Those with paranoia often push people away and when that starts to work, they believe this is proof that they were right all along.

Another point is that depression and anxiety can cause or worsen paranoia. I don't know of anyone with FTD who does not have some degree of both depression and anxiety. You can see, therefore, how these things just compound each other.

So, what do we do?

Advice for the caregivers:  Understand what paranoia is and look for the signs of it in your loved one. Many people with FTD need constant assurance that they are okay and that they are still loved. They can also have a fear that their loved ones will leave them. Myself, I realize when I am being obnoxious to my loved ones. I don't mean to be, but I also cannot stop that behavior. I have the behavior variant of FTD and there are a lot of behaviors I cannot stop before I act out on them.

Also, as difficult as it is, try to realize that the nasty things they can say, accuse you of doing or nasty things they might do, are possibly stemming from paranoia. Try reassuring them even more that you love them and will always be there for them. Come think of it, this happened in my life just a couple weeks ago. My husband's anxiety level was going through the roof and I was at my wit's end. After I calmed down, I sat down with and talked. I ended up reassuring that I had no intention of putting him in a nursing home and that the only reason he was in one for a couple months was a separate illness and once it was under control I had fought everyone there to get him home. He was so much calmer and I could only wonder why it had not occurred to me sooner that he was worried about this. Now, I wonder if his anxiety was from paranoia causing him to think I was trying to get rid of him.

My advice to those with FTD is basically the same. Try to learn what paranoia is and what things that are frustrating you just might be a feeling of rejection that are being caused by paranoia. Also, paranoia, depression and anxiety can all feed off each other making each worse. Do not be afraid to seek counseling to help you through. Therapy is covered by Medicare or there are often free or reduced cost mental health services available. 

Personally, I see a psychologist, at least once a month, and she has no problem telling me that what I am complaining about is really my own paranoia. Seeking help or recognizing paranoia, anxiety or depression does not mean you are crazy or that you have a mental illness. It can be symptoms of FTD. Talking about it with a confidential and neutral person helps me immensely.

Also, for those with FTD, stop and think if perhaps some of the problems and/or anger between you and your, family members, friends or caregivers just might be signs of paranoia. Many with paranoia firmly believe, not just think possible, that no one wants anything to do with you. Then, we convince ourselves that, "See, I am better off alone," and pull away from others even more. It can be a vicious and endless cycle. Look for ways to end that cycle. Talking to each other calmly, talking to a neutral psychologist or even a friend just might help you realize that you are looking at things through glasses formed from paranoia.

For me personally, it is a good thing I am scheduled to see my therapist soon. After researching this topic, I know I have a lot more to talk to her about!