As long as I was complaining in my last blog that I wrote just a couple days ago, here I go again. At the risk of offending a very dear friend, I must use an example that features her. She shall remain nameless.
I have talked so many times about how frustrating it is when people don't believe me when I tell them that I have Frontotemporal Degeneration. They say things like, "But you seem fine" or "Oh, I do that too, that isn't dementia!" It's not that I want anyone's sympathy that I have this disease. Actually, I guess when they say things like that, it is a compliment that I am functioning well enough, despite the disease, that they cannot pick up on it. Although, if anyone is around me for any more than a brief moment, they should be able to pick up on at least some of my symptoms. I am not alone in this sentiment. It is one I commonly hear from others with FTD.
As I have written before, I understand this denial because mostly everyone who hears "dementia" hears "Alzheimer's" instead. This is one of the reasons I work so hard to educate others and spread the word. It's part of the reason I write this blog. This reaction is so common, I can usually just brush it off. It is yet another kind of denial that frustrates and hurts me more lately.
In my last blog entry, I elaborated on how I can tell that I am getting a worsening or developing a new symptom. Since writing that just a few days ago, I have had other FTD'ers say that this is true for them as well. That makes me feel better, knowing that I am not imagining it. I do not understand how my loved ones can not see the decline. Even if it is gradual, it seems that those who spend much time with me would pick up the signs. Then again, perhaps, when it comes on gradually, it isn't as obvious.
That dear friend I mentioned calls me nearly every night. Sometimes, I just can't handle it. For some reason, I have hated talking on the phone for the last twelve or so years. Precursor of FTD? Perhaps, I don't know. She called me the other night and I was not very responsive and explained that I was sorry but I was really, really grumpy. I explained that I was sleeping 12-16 hours each night which is highly unusual as well as having more trouble with getting my legs to more properly. Still, on another day, I was still grumpy and she responded with something like "Ah, just smile. You know a frown is just a smile upside down." Now, that is a sweet thing to say and I appreciate her attempt to make me smile but it doesn't help. She is not alone in this, so I really, really hope she does not take offense with this. She just happened to provide me with a great example of the frustrations I get with many others as well.
When I am in that time period when I know something is coming on, my speech problems become much more evident. That alone should be enough to trigger "Uh-oh, what's going on?" If someone is observing a worsening symptom, it should be obvious that there is something FTD related going on. I insisted on explaining after she had kind of brushed it off. I explained what was happening and it was just so frustrating that I was struggling to deal with it right then. Later in the conversation, she did pause and say that, like so many others, she thinks that perhaps she is just in denial because deep down, she doesn't want to believe I really have the disease. Denial does not help me.
She isn't the only one to feel and act this way. It isn't just strangers and acquaintances that I encounter who dismiss my disease. It is friends, family and so many more who know me well. I totally understand. If the tables were reversed, I would most likely not want to believe that someone I love had a life-ending disease and would probably try to ignore or explain away the symptoms. I understand it, but it does nothing to help me. It simply adds to my everyday frustrations.
It is the same for those who read, usually on the internet, or hear on daytime TV or elsewhere of some new miracle cure. It can be a supplement to take, a diet to follow or scripture to read. Unfortunately, while there may be a small modicum of truth to the new discovery, it is usually just bunk designed to sell supplements, to sell a book, or sign up for therapy sessions. Beyond the fact that they are most likely just junk science, they are for Alzheimer's, people, not for FTD.
FTD and Alzheimer's Diseases both cause dementia. They are NOT the same disease. As an example, the medications that do seem to work to slow the progression of Alzheimer's Disease and its dementia symptoms are not helpful for FTD. In fact, it has been proven that these drugs can actually worsen FTD. If it is true with these drugs, does it not stand to reason that it just might be true of all the other supposed "cures" for Alzheimer's? My belief of this is so strong, that I am not about to spend my money or risk my health to try them. This is why I get so angry every time I hear someone with FTD say that their doctor put them on the Alzheimer's drugs just in case they might work. Why would you do that? Why, when there is also a stronger case for them worsening the FTD?
Please remember, when you are trying to make light of someone's symptoms or diagnosis to try to make them "feel better," most likely it will make them feel worse. Dismissing the disease because it makes you feel better or you hope it will help me be an ostrich, with my head buried in the sand, only comes across as though you are dismissing me. Try something like, "Oh, I do not like that news, is there anything I can do to help or to make you feel better about it?" Don't minimize what is happening, don't brush it off. I already feel miserable enough.
I have already shut several people out of my life because of this problem. Anyone with FTD does not need negativity surrounding them. I try to be more patient with those who I know are doing it out of love. It isn't easy. This disease isn't easy.
Sunday, August 27, 2017
Friday, August 25, 2017
Little Things Add Up
I started out last week's blog entry by complaining that I had just done something that caused me to lose a big part of what I had written. I just did it again, but this time, I lost the entire post... all of it! I click "save" every paragraph or so even though it is supposed to save automatically It used to be that if I did lose it, I could somehow get it back as a draft. If only this damned FTD would let me remember how to do that.
Ironically, my entire blog this week was about how it seems to be the little things that upset me the most. To me, this is not a little thing, it's a biggie. I will rewrite what I can remember even though I now have an even worse headache than what I was talking about.
I have a theory. I have alluded to it before but since I have absolutely no scientific evidence or others' experiences to back me up, it is just a theory. I truly believe that my brain knows when it is about to lose more function. I develop the worst of my FTD headaches... the ones that no pain medication can touch. They are kind of like my worst migraine x5. These headaches always seem to be a precursor to worsening symptoms. The other indicator to me is the need for sleep. All of a sudden I will be needing much more sleep than usual.
I have had the headache for a week or so now. Then, yesterday, after an exciting afternoon out of getting a haircut and having a late lunch at our usual restaurant (Yes, you are right, not exciting and should have not worn me out either,) I needed to lay down as soon as we got home. That was about 4:00 in the afternoon. I usually don't do naps so that I am able to sleep through the night. I woke up about four hours later after the phone had rung so I got up and had something cold to drink, visited the bathroom and went back to bed. I tried to read for a little while, but soon fell back asleep. This morning I was up before the crack of noon. Okay, it was 11:45, but that is before noon. FTD has killed most of my math skills, but I still think that was about 16 hours of sleep.
My thought at that point was that with that much sleep, at least I was rested enough to face the day. I wish! I settled down on the couch with my coffee and newspaper and except for some of the dreadful news, I was nicely relaxed. Then my husband prepared himself a little lunch, sat down on the other sofa and turned on the TV to watch a game show. It was only after it was on that he asked if it was okay with me. I thought it would be fine since now that he has hearing aids, he sets the volume so low that I can barely hear it even though my hearing is pretty darned good for a 64-year old. I was being pretty successful at blocking it out when he started asking "What did he say?" repeatedly. I was not exactly kind when I answered "I don't know, I can't hear it!" I took out my frustration by mopping the kitchen floor, so maybe it was a good thing anyway. After doing that, I retreated to my room which is my sanctuary.
My room does not have a phone and since my husband hates to answer the phone even though he can now hear on the phone. I usually bring a handset in with me. A couple hours after coming in here, the phone rang and I answered it. It was just someone calling to confirm an upcoming appointment. Half way through this brief conversation, he stuck his head in and asked who it was. I ignored him, said goodbye and hung up. He then goes on to explain that he was waiting for a call from Don. That was all the info I needed, but he elaborated that he had called Don and he wasn't home so he left a message. He explained what had prompted him to call and what answer he wanted for his question and all his reasoning behind it, including past experiences and the benefits it would bring him. He was greeted with a very rude "Whatever!!!"
That was enough reason to take a break so I went out to the kitchen to get a drink. Since I was calm by then, I stopped by him and explained how and why it would have been better to simply have said, "I am expecting a call from Don." Period, end of story. I wish. No, then he had to explain why he thought I should know all the minutiae again. To top it off, I spilled part of my drink while trying to pour it. That was the proverbial straw that broke the camel's back. I then said "Maybe I should just go somewhere and curl up and die." He laughed. I simply turned and said "When I say something like that, I am saying how I am truly feeling." No response.
It is not at all unusual for someone with FTD to have the feelings of wanting to escape it all but don't worry, I am not going to do that. My daughter would kill me if I did. Yes, that is a feeble attempt at humor. Seriously, after my father's suicide ripped apart our family, I did promise her I would never do that to her. Of course that was before FTD, but I know what it did to me and I would never do that to her, no matter how bad it gets.
The daily frustrations that mount up and ruin the day can be simpler things as well. Too many calls from a telemarketer, not being able to remember something, being unable to come up with the words you want, stumbling too often or just about anything else can do it. I hope my husband will forgive me for telling of today's events. It is only because we are always together that our daily life so often provides examples for what I am trying to talk about.
I will stop complaining now about how the little things add up into a huge frustrations. I will stop because all of a sudden, I need a nap. Plus I need to post it quickly so I don't lose it again.
PS: I don't believe this! After I posted this blog, I found the draft of it I had written before along with the one from last week. So I'm happy to know that I was saving it, but still wonder where the heck it was hiding!
Ironically, my entire blog this week was about how it seems to be the little things that upset me the most. To me, this is not a little thing, it's a biggie. I will rewrite what I can remember even though I now have an even worse headache than what I was talking about.
I have a theory. I have alluded to it before but since I have absolutely no scientific evidence or others' experiences to back me up, it is just a theory. I truly believe that my brain knows when it is about to lose more function. I develop the worst of my FTD headaches... the ones that no pain medication can touch. They are kind of like my worst migraine x5. These headaches always seem to be a precursor to worsening symptoms. The other indicator to me is the need for sleep. All of a sudden I will be needing much more sleep than usual.
I have had the headache for a week or so now. Then, yesterday, after an exciting afternoon out of getting a haircut and having a late lunch at our usual restaurant (Yes, you are right, not exciting and should have not worn me out either,) I needed to lay down as soon as we got home. That was about 4:00 in the afternoon. I usually don't do naps so that I am able to sleep through the night. I woke up about four hours later after the phone had rung so I got up and had something cold to drink, visited the bathroom and went back to bed. I tried to read for a little while, but soon fell back asleep. This morning I was up before the crack of noon. Okay, it was 11:45, but that is before noon. FTD has killed most of my math skills, but I still think that was about 16 hours of sleep.
My thought at that point was that with that much sleep, at least I was rested enough to face the day. I wish! I settled down on the couch with my coffee and newspaper and except for some of the dreadful news, I was nicely relaxed. Then my husband prepared himself a little lunch, sat down on the other sofa and turned on the TV to watch a game show. It was only after it was on that he asked if it was okay with me. I thought it would be fine since now that he has hearing aids, he sets the volume so low that I can barely hear it even though my hearing is pretty darned good for a 64-year old. I was being pretty successful at blocking it out when he started asking "What did he say?" repeatedly. I was not exactly kind when I answered "I don't know, I can't hear it!" I took out my frustration by mopping the kitchen floor, so maybe it was a good thing anyway. After doing that, I retreated to my room which is my sanctuary.
My room does not have a phone and since my husband hates to answer the phone even though he can now hear on the phone. I usually bring a handset in with me. A couple hours after coming in here, the phone rang and I answered it. It was just someone calling to confirm an upcoming appointment. Half way through this brief conversation, he stuck his head in and asked who it was. I ignored him, said goodbye and hung up. He then goes on to explain that he was waiting for a call from Don. That was all the info I needed, but he elaborated that he had called Don and he wasn't home so he left a message. He explained what had prompted him to call and what answer he wanted for his question and all his reasoning behind it, including past experiences and the benefits it would bring him. He was greeted with a very rude "Whatever!!!"
That was enough reason to take a break so I went out to the kitchen to get a drink. Since I was calm by then, I stopped by him and explained how and why it would have been better to simply have said, "I am expecting a call from Don." Period, end of story. I wish. No, then he had to explain why he thought I should know all the minutiae again. To top it off, I spilled part of my drink while trying to pour it. That was the proverbial straw that broke the camel's back. I then said "Maybe I should just go somewhere and curl up and die." He laughed. I simply turned and said "When I say something like that, I am saying how I am truly feeling." No response.
It is not at all unusual for someone with FTD to have the feelings of wanting to escape it all but don't worry, I am not going to do that. My daughter would kill me if I did. Yes, that is a feeble attempt at humor. Seriously, after my father's suicide ripped apart our family, I did promise her I would never do that to her. Of course that was before FTD, but I know what it did to me and I would never do that to her, no matter how bad it gets.
The daily frustrations that mount up and ruin the day can be simpler things as well. Too many calls from a telemarketer, not being able to remember something, being unable to come up with the words you want, stumbling too often or just about anything else can do it. I hope my husband will forgive me for telling of today's events. It is only because we are always together that our daily life so often provides examples for what I am trying to talk about.
I will stop complaining now about how the little things add up into a huge frustrations. I will stop because all of a sudden, I need a nap. Plus I need to post it quickly so I don't lose it again.
PS: I don't believe this! After I posted this blog, I found the draft of it I had written before along with the one from last week. So I'm happy to know that I was saving it, but still wonder where the heck it was hiding!
Sunday, August 20, 2017
Trying To Do Some Good
Grrr... I did it again. I had this post almost completed then somehow deleted it. I wish my FTD would allow me to figure out how I keep doing this! Oh well, I will go with the belief that by having to redo it, I will find even more inspiration.
At the risk of sounding like I am tooting my own horn, I am going to talk about a wonderful event that happened two days ago. Our local newspaper, the Altoona Mirror and a large medical practice sponsored their annual Health O Rama at the local mall. In addition to speakers throughout the day and free testing that was being done, there were close to 50 table displays by medical related organizations, including a few non-profits. When I first contacted the newspaper about setting up a display for the AFTD, we were welcomed with open arms.
We had a lot of information and handouts for the attendees and I had my sister, also a volunteer for AFTD, to help. The newspaper estimated that approximately 1000 people visited the event. We had a significant percentage of those stop by our table for more information. It was a very rewarding experience for both of us and we already have signed up to display at an event next month at a different location.
When I was preparing for the event, I kept saying that if we reached just one person who needed to know about FTD, it would be worth every bit of the effort. We had several people who were extremely interested and they were planning to either contact the AFTD helpline or go to their website for more information. The biggest reward came in the last ten minutes of the event. A woman came running up, literally running and out of breath. She was staffing a different display at the other end of the mall and someone, knowing her family was struggling with someone who was displaying "strange symptoms," mentioned our display about a "different" kind of dementia.
The light bulbs just kept going on above her head the longer she talked to us and read the information. She kept thanking us for being there because she was definitely going to insist that the family member be evaluated for FTD. Like most of us with FTD, the family member was not displaying the recognized symptoms of Alzheimer's yet they were convinced there was something wrong. I will not say that I hope they get a diagnosis of FTD, because I would not wish that on anyone. I do hope though that they will pursue in getting a proper diagnosis.
It was not easy for me to do this event, to organize it, set it up and talk to people for four hours. By the fourth hour, I was often having to turn to my sister to finish saying what I was trying to say. When we packed up and got home, I realized that I could not lift my right foot. I had to step with my left and drag my right. It is the same side that the brain does not always communicate with properly, so I wasn't too worried. I slept over twelve hours that night and by the morning it was back to my usual "normal". I am sure there are lot of ways I could have improved the event, but I don't care (and it's not just from my overload of apathy) because I know I made my goal of reaching at least one person.
This experience of worsening symptoms occurring when stressed and/or tired is something I forget to mention much. It does happen and it is always a huge relief when I bounce back once I am rested and de-stressed. This is why those of us with FTD remind each other that when in a stressful situation, to take a break, find a quiet spot and recharge. If we try to push through it, the signs just keep getting worse.
I was determined to display at this event even though I usually avoid the mall at all costs I only shop at stand-alone stores or online. The mall has too many stores, too many colors, too many noises and just too many people. Add in background music and the vibration in the floor that they keep telling me is normal, and it leads to a quick overload. Looking back to before I was diagnosed with FTD, there was a warning sign I missed. I was at the mall with my daughter and my sister. We were on the top floor (the one that vibrates), it was crowded, too much noise and too much stimulation from all the stores. I stopped in my tracks and just kept saying "Get me out of here" over and over. They did and I was fine once I calmed down. It is experiences like this one that make it difficult for those of us with FTD to know exactly when the signs of the disease started. There are situations that occurred 25 years or so ago that, looking back, seem like they could have been precursors to the disease.
I have digressed, as usual, from the point of this blog entry. While doing this display was rewarding beyond belief, there were also some frustrations. They were the same frustrations that I, along with most of the other FTD'ers I know, experience way too often. I had the people who walked up and said that they are dealing with 'it' also. It only took a sentence or two of them complaining about their loved one with dementia to realize that they were dealing with Alzheimer's. It was wasted breath to explain how FTD is different.
One woman in particular came back three times and wanted to talk about Alzheimer's and how to deal with situations, like sundowning. It was obvious to us that the way she said she was handling it was probably worsening it rather than helping. We kept suggesting that she go online and look it up or go to one of the many Alzheimer's sites for help or to even go to the AFTD website. Often times, caregivers just need to vent and have someone listen to them, this is totally understandable. but this woman went beyond that. I will admit that I said a little prayer of thanks that she was not my caregiver! I was so proud of myself that I didn't blow up at her. I kept talking calmly and repeating the suggestion to go to the websites and wishing her well. I also kept explaining that my experience was with FTD, not Alzheimer's, which she either could not or would not grasp. Not bad for someone with FTD dealing with one of our most usual frustrations. At least no one came up and said "Yeah, I do that too!"
I am so happy that I took the AFTD's volunteer training 18 or so months ago. I am also happy that they realize that even though I have FTD, I still have abilities and value. I am touched beyond belief that my sister has also become a volunteer. What a sign of sisterly love! There is just something about this disease that makes many of us become determined to educate the world and try to do something to help solve its mysteries. I'm sure they, as well as I am, are determined that if they have to have this horrid disease they are going to make some good come out of it if they can. As long as I can talk or write, I will be trying to spread the word about FTD and the work of the AFTD.
At the risk of sounding like I am tooting my own horn, I am going to talk about a wonderful event that happened two days ago. Our local newspaper, the Altoona Mirror and a large medical practice sponsored their annual Health O Rama at the local mall. In addition to speakers throughout the day and free testing that was being done, there were close to 50 table displays by medical related organizations, including a few non-profits. When I first contacted the newspaper about setting up a display for the AFTD, we were welcomed with open arms.
We had a lot of information and handouts for the attendees and I had my sister, also a volunteer for AFTD, to help. The newspaper estimated that approximately 1000 people visited the event. We had a significant percentage of those stop by our table for more information. It was a very rewarding experience for both of us and we already have signed up to display at an event next month at a different location.
When I was preparing for the event, I kept saying that if we reached just one person who needed to know about FTD, it would be worth every bit of the effort. We had several people who were extremely interested and they were planning to either contact the AFTD helpline or go to their website for more information. The biggest reward came in the last ten minutes of the event. A woman came running up, literally running and out of breath. She was staffing a different display at the other end of the mall and someone, knowing her family was struggling with someone who was displaying "strange symptoms," mentioned our display about a "different" kind of dementia.
The light bulbs just kept going on above her head the longer she talked to us and read the information. She kept thanking us for being there because she was definitely going to insist that the family member be evaluated for FTD. Like most of us with FTD, the family member was not displaying the recognized symptoms of Alzheimer's yet they were convinced there was something wrong. I will not say that I hope they get a diagnosis of FTD, because I would not wish that on anyone. I do hope though that they will pursue in getting a proper diagnosis.
It was not easy for me to do this event, to organize it, set it up and talk to people for four hours. By the fourth hour, I was often having to turn to my sister to finish saying what I was trying to say. When we packed up and got home, I realized that I could not lift my right foot. I had to step with my left and drag my right. It is the same side that the brain does not always communicate with properly, so I wasn't too worried. I slept over twelve hours that night and by the morning it was back to my usual "normal". I am sure there are lot of ways I could have improved the event, but I don't care (and it's not just from my overload of apathy) because I know I made my goal of reaching at least one person.
This experience of worsening symptoms occurring when stressed and/or tired is something I forget to mention much. It does happen and it is always a huge relief when I bounce back once I am rested and de-stressed. This is why those of us with FTD remind each other that when in a stressful situation, to take a break, find a quiet spot and recharge. If we try to push through it, the signs just keep getting worse.
I was determined to display at this event even though I usually avoid the mall at all costs I only shop at stand-alone stores or online. The mall has too many stores, too many colors, too many noises and just too many people. Add in background music and the vibration in the floor that they keep telling me is normal, and it leads to a quick overload. Looking back to before I was diagnosed with FTD, there was a warning sign I missed. I was at the mall with my daughter and my sister. We were on the top floor (the one that vibrates), it was crowded, too much noise and too much stimulation from all the stores. I stopped in my tracks and just kept saying "Get me out of here" over and over. They did and I was fine once I calmed down. It is experiences like this one that make it difficult for those of us with FTD to know exactly when the signs of the disease started. There are situations that occurred 25 years or so ago that, looking back, seem like they could have been precursors to the disease.
I have digressed, as usual, from the point of this blog entry. While doing this display was rewarding beyond belief, there were also some frustrations. They were the same frustrations that I, along with most of the other FTD'ers I know, experience way too often. I had the people who walked up and said that they are dealing with 'it' also. It only took a sentence or two of them complaining about their loved one with dementia to realize that they were dealing with Alzheimer's. It was wasted breath to explain how FTD is different.
One woman in particular came back three times and wanted to talk about Alzheimer's and how to deal with situations, like sundowning. It was obvious to us that the way she said she was handling it was probably worsening it rather than helping. We kept suggesting that she go online and look it up or go to one of the many Alzheimer's sites for help or to even go to the AFTD website. Often times, caregivers just need to vent and have someone listen to them, this is totally understandable. but this woman went beyond that. I will admit that I said a little prayer of thanks that she was not my caregiver! I was so proud of myself that I didn't blow up at her. I kept talking calmly and repeating the suggestion to go to the websites and wishing her well. I also kept explaining that my experience was with FTD, not Alzheimer's, which she either could not or would not grasp. Not bad for someone with FTD dealing with one of our most usual frustrations. At least no one came up and said "Yeah, I do that too!"
I am so happy that I took the AFTD's volunteer training 18 or so months ago. I am also happy that they realize that even though I have FTD, I still have abilities and value. I am touched beyond belief that my sister has also become a volunteer. What a sign of sisterly love! There is just something about this disease that makes many of us become determined to educate the world and try to do something to help solve its mysteries. I'm sure they, as well as I am, are determined that if they have to have this horrid disease they are going to make some good come out of it if they can. As long as I can talk or write, I will be trying to spread the word about FTD and the work of the AFTD.
Saturday, August 12, 2017
Impulsive Behaviors
This morning, while lying in bed but wide awake, I wondered what subject I should write about today. I came up with a few ideas and really liked a couple of them. Just as some things seem to happen, a couple things occurred today totally changed my mind. Last week I attempted to describe how and why we blow up or break down. This week, I want to talk about something that also occurs in the life of someone caring for or being someone with FTD.
One symptom of bvFTD, as well as all the other categories under the FTD umbrella, is increased impulsive behaviors. This is also sometimes described as the loss of filters between the brain and our actions. One example that I often use is the day I decided to go out for our mail. Our mailbox is across the little street we live on. I exited my house, walked up the drive and began crossing the street. I totally forgot about the huge and heavy trucks that sometimes travel our road to get to and from a quarry. I learned 3 things that day: these trucks do not stop on a dime, the horns are very loud when the driver is laying into them and those same drivers have a very vast variety of swear words in their repertoire.
I was very lucky that day. If that driver had not been paying close attention, I would have become roadkill. This event was a total result of impulsive behaviors. I knew I wanted to get to the other side of the street but gave no thought about any risks involved.
That increased impulsive behavior is also why many of us with FTD make poor financial decisions. We see something in a store or on the internet and think it would nice to have or it's pretty, so we buy it. We don't stop to think about whether we have the financial resources to be able to afford that purchase or whether we will still be able to purchase groceries the next day. We also don't bother to figure out if we have any use for it, but danged if it didn't look good! This can be even worse. Many with FTD become shoplifters. They do not intend to break the law or steal. They simply see something they like and pick it up and take it. It's an impulse. There is a defective or missing filter between brain and actions. We see it, we want it and now we have it. Not only does this cause huge arguments between the caregiver and the one with FTD, it also can cause huge legal issues as well.
Another large part of this FTD symptom is spewing out words without thinking about how they might offend, be inappropriate and just tick people off. This is easiest to explain as the lack of a filter between brain and speech. We no longer have the ability to think before we speak. I have experienced this problem hundreds of time. If I think it, I say it. A friend is wearing a green shirt. Instead of saying something innocuous like "You look nice today," I may say "that color looks awful on you." I have also developed a very large vocabulary of inappropriate and offensive words. This is not in character for me. I have been known to cuss a time or two or a few hundred but I never used the horribly inappropriate and offensive words that I use now. If I get angry, you are going to hear the "F word" at least a couple times. This was not my norm prior to FTD.
Another big part of inappropriate speaking can be of a sexual nature. This can be telling a dirty joke to your friends at church or in the workplace. It can be making sexual innuendos to people, even strangers. Just like shoplifting, this can get you into huge trouble.
Another issue for increased impulsive behavior can be wandering. Why those with dementia often think they need to go home or need to go somewhere else is an involved problem. Part of the answer is that they just do not feel comfortable in their surroundings anymore and want to go find their home where they remember they loved to be, even if they are still in that same home. It is difficult to eliminate the impulsive behavior problem from the wandering issue. Things like is it day or night, do I know where I am going, am I dressed appropriately, will anyone know where I have gone and so many others do not occur to them before they wander off.
These activities, the wandering, the swearing, the shoplifting, the impulse buying and the insults, are not intentional. This is difficult for many who do not have FTD to understand. Responses are often things like "It goes against logic. What do you mean he doesn't know that what he just said to me was an insult?" " Of course she knew we couldn't afford that new sofa." "He just doesn't bother to stop and think." "Of course he knows it was wrong to take that box of cookies without paying for it."
"How in the world could she say such a thing to me? She knew I would be hurt." "He's just doing that to irritate me."
Hearing someone explain that "It wasn't them doing that, it was the disease!" gets old really fast. It is human nature to be insulted and frustrated, even angry. Think of the impulsive things that a child does or says because they have not yet learned that it wrong to do so. This is the same idea, but in reverse. They used to know but that knowledge has been stolen from them by the disease.
It is important for caregivers, loved ones and anyone else involved in the life of someone with FTD to try to stop before reacting. The one with FTD does not have filters, but the ones affected do. Take a deep breath and count to ten before you react. Remind yourself that it IS the disease. Would the person they were before the disease have done/said that? Reacting in anger and frustration is not going calm the issue, it will make it worse for both of you.
On the other hand, if you do react with anger, frustration or any other way that escalates the situation, don't beat yourself up. Some days, it all adds up and takes its toll or even one event is too much to deal with. Last time I checked, all caregivers were humans too. Just like the one with FTD, the caregivers have limits to what they can deal with at any particular time. I am not going to go into things like the importance of respite care in this blog. The needs of the caregivers is a huge subject on its own that will have to wait until another blog entry.
This blog came about after a couple things happened to me today. Someone was telling me how I was saying the wrong things and not properly thinking about things before I said them. Duh! Why didn't I think of that? Another was questioning why I reacted to something the way I did. The totally honest answer of "I don't know" was apparently unacceptable. The scary part is that these same people claim to others that they FTD. To them, I would like to say that just because you know someone with FTD, have read a few articles or even live with someone who has the disease, it does not mean you understand what we are going through. Your life experiences are interesting and I like to hear them but they just don't apply. I truly appreciate your effort to understand but, please, do not try to tell me, after the fact, what I should do or how I should react to things. There is no way for you to give me back my filters. I wish you could.
One symptom of bvFTD, as well as all the other categories under the FTD umbrella, is increased impulsive behaviors. This is also sometimes described as the loss of filters between the brain and our actions. One example that I often use is the day I decided to go out for our mail. Our mailbox is across the little street we live on. I exited my house, walked up the drive and began crossing the street. I totally forgot about the huge and heavy trucks that sometimes travel our road to get to and from a quarry. I learned 3 things that day: these trucks do not stop on a dime, the horns are very loud when the driver is laying into them and those same drivers have a very vast variety of swear words in their repertoire.
I was very lucky that day. If that driver had not been paying close attention, I would have become roadkill. This event was a total result of impulsive behaviors. I knew I wanted to get to the other side of the street but gave no thought about any risks involved.
That increased impulsive behavior is also why many of us with FTD make poor financial decisions. We see something in a store or on the internet and think it would nice to have or it's pretty, so we buy it. We don't stop to think about whether we have the financial resources to be able to afford that purchase or whether we will still be able to purchase groceries the next day. We also don't bother to figure out if we have any use for it, but danged if it didn't look good! This can be even worse. Many with FTD become shoplifters. They do not intend to break the law or steal. They simply see something they like and pick it up and take it. It's an impulse. There is a defective or missing filter between brain and actions. We see it, we want it and now we have it. Not only does this cause huge arguments between the caregiver and the one with FTD, it also can cause huge legal issues as well.
Another large part of this FTD symptom is spewing out words without thinking about how they might offend, be inappropriate and just tick people off. This is easiest to explain as the lack of a filter between brain and speech. We no longer have the ability to think before we speak. I have experienced this problem hundreds of time. If I think it, I say it. A friend is wearing a green shirt. Instead of saying something innocuous like "You look nice today," I may say "that color looks awful on you." I have also developed a very large vocabulary of inappropriate and offensive words. This is not in character for me. I have been known to cuss a time or two or a few hundred but I never used the horribly inappropriate and offensive words that I use now. If I get angry, you are going to hear the "F word" at least a couple times. This was not my norm prior to FTD.
Another big part of inappropriate speaking can be of a sexual nature. This can be telling a dirty joke to your friends at church or in the workplace. It can be making sexual innuendos to people, even strangers. Just like shoplifting, this can get you into huge trouble.
Another issue for increased impulsive behavior can be wandering. Why those with dementia often think they need to go home or need to go somewhere else is an involved problem. Part of the answer is that they just do not feel comfortable in their surroundings anymore and want to go find their home where they remember they loved to be, even if they are still in that same home. It is difficult to eliminate the impulsive behavior problem from the wandering issue. Things like is it day or night, do I know where I am going, am I dressed appropriately, will anyone know where I have gone and so many others do not occur to them before they wander off.
These activities, the wandering, the swearing, the shoplifting, the impulse buying and the insults, are not intentional. This is difficult for many who do not have FTD to understand. Responses are often things like "It goes against logic. What do you mean he doesn't know that what he just said to me was an insult?" " Of course she knew we couldn't afford that new sofa." "He just doesn't bother to stop and think." "Of course he knows it was wrong to take that box of cookies without paying for it."
"How in the world could she say such a thing to me? She knew I would be hurt." "He's just doing that to irritate me."
Hearing someone explain that "It wasn't them doing that, it was the disease!" gets old really fast. It is human nature to be insulted and frustrated, even angry. Think of the impulsive things that a child does or says because they have not yet learned that it wrong to do so. This is the same idea, but in reverse. They used to know but that knowledge has been stolen from them by the disease.
It is important for caregivers, loved ones and anyone else involved in the life of someone with FTD to try to stop before reacting. The one with FTD does not have filters, but the ones affected do. Take a deep breath and count to ten before you react. Remind yourself that it IS the disease. Would the person they were before the disease have done/said that? Reacting in anger and frustration is not going calm the issue, it will make it worse for both of you.
On the other hand, if you do react with anger, frustration or any other way that escalates the situation, don't beat yourself up. Some days, it all adds up and takes its toll or even one event is too much to deal with. Last time I checked, all caregivers were humans too. Just like the one with FTD, the caregivers have limits to what they can deal with at any particular time. I am not going to go into things like the importance of respite care in this blog. The needs of the caregivers is a huge subject on its own that will have to wait until another blog entry.
This blog came about after a couple things happened to me today. Someone was telling me how I was saying the wrong things and not properly thinking about things before I said them. Duh! Why didn't I think of that? Another was questioning why I reacted to something the way I did. The totally honest answer of "I don't know" was apparently unacceptable. The scary part is that these same people claim to others that they FTD. To them, I would like to say that just because you know someone with FTD, have read a few articles or even live with someone who has the disease, it does not mean you understand what we are going through. Your life experiences are interesting and I like to hear them but they just don't apply. I truly appreciate your effort to understand but, please, do not try to tell me, after the fact, what I should do or how I should react to things. There is no way for you to give me back my filters. I wish you could.
Sunday, August 6, 2017
How My FTD Brain Fails Me
It's not been a good week for me, at least FTD-wise. It is common for FTD symptoms to worsen. Sometimes the change happens quickly, sometimes slowly. My speech difficulties seem to occur in spurts. It will plateau, then noticeably worsen then level off again for a while, sometimes even for weeks or a couple months. A week or so ago, it definitely took a step down. I have been stuttering and have been unable to come up with words much more severely than it had been. I eventually get my thoughts out as long as the person I am talking to has enough patience to listen.
Also, this week, I kept experiencing pain in my right hip. The pain was not severe, but it reminded me every so often that it was not happy. I could not remember anything happening that could have caused the pain, nothing at all. Then this morning, I went outside to talk to my friend who had brought some mulch over to spread out for me. The longer I tried to talk to him, my speech got worse and I got more and more angry at FTD. It wasn't long until I stomped my right foot in sheer frustration. This cycle of speech problems and stomping my foot continued the longer we talked. If there ever was an ah-ha moment, this was it. I'll bet my friend even saw the light bulb click on. This was why my hip was hurting. Every time I got frustrated with my worsening speech, I was spreading the irritation straight to the hip! All this without knowing I was doing it.
Even though I am now aware I am doing it, it is not going stop me from stomping that foot. FTD does not allow me to reprogram my brain. In addition, the frustration seems to need to find a way out.
Another incident happened earlier this week. I had a huge meltdown. It totally ruined the day for both my husband/care giver and me. To be honest, I do not even remember at all what triggered it. My husband was there so it was probably me getting frustrated because he was ignoring what I was saying or I felt he was just not listening to me. I must break for a second to tell you something that I find funny.
After several years of many people haranguing him, my husband actually got hearing aids. Some of the amusing things about it is how he keeps turning down the television, complaining that my sneakers are squeaking on the kitchen floor or asking things like "Are the birds always singing so loudly?" Now, I finally have the answer to the claim that men have "selective hearing." He now hears everything... except me talking.
Now, back to my meltdown. My speech problems always escalate when I have become upset or frustrated. Sometimes my balance and walking worsens as well. This day, however, the effects were much more pronounced than usual. I could barely get any words out. I would get stuck on the first syllable of a word for minutes at a time or just was unable to come up with any of the words I needed. That isn't so unusual, but it was much worse than it usually is. In addition, my head kept making small movements, almost as if I were shaking my head "no." Then, my right leg started twitching. The closest I can describe how it felt was that it seems as if electrical pulses were zapping down my leg every minute or two. It frightened me and frightened my husband perhaps even more. It was probably a good thing that I had seated myself before it escalated to the point my leg was involved. Once I calmed down, the symptoms eased. The speech difficulties stayed, but the twitching stopped. I was totally exhausted when the twitching had stopped.
I sure hope that these symptoms do not start becoming regular for me, progressing just like my speech and movement issues have progressed over the past few years. It would be easy to shove the incident aside since it happened when I was having a meltdown. The problem with this is that the meltdowns are caused by FTD. Things, that used to just irritate me a bit, but I was able to accept or ignore them, and they would not become huge issues.
My FTD brain is so occupied with trying to just deal with daily life that there seems to be no leeway on dealing with anything that involves emotions. If we go back to some of the earliest symptoms of FTD, we get "changes in behavior," "showing poor judgement," "no consideration of the feelings of others," and the biggie "no filter between thoughts and speech or impulse control resulting in offending others." Yep, these symptoms were all involved that day. I said whatever thoughts came to me, disregarding whether the words would hurt my husband or not. The more he tried to not react adversely came across in my brain as though he did not care or was not interested in what I had to say. The anger and frustrations just kept feeding off each other, leading to the severe symptoms.
Could I have prevented this from escalating the way it did. The answer is a big, fat, NO! I was not capable of stopping it. I kind of remember realizing I was over reacting but even that would not stop what was happening or even slow it down. Did my husband respond in the best way possible? Probably not. He just kept telling me to calm down and to stop. It might have been better if, along with telling me to calm down, tell me that we can work it out or talk it out together and that he is there for me. Maybe, maybe not. On the other hand, if I had someone screaming and acting with so much anger, I would not known how to deal with it either.
I wish I could say that this incident was something that does not happen often. I wish I could say that it will never happen again. I wish I could say that I will work on preventing it from happening. With FTD, it's impossible for any of these statements to be true. The dead and dying brain cells can't do it. The cells cannot repair themselves or regrow. The effects of these dying cells depend on which part of the brain is involved.
The frontal region of the brain is what controls social behaviors and emotional behaviors. It is the part of the brain that tells us it is not appropriate to talk back to the pastor during his sermon. Yes, I did do that. It is also the part of the brain that tells you not to stick your finger in a pot of nearly boiling water to determine if it was hot yet. Yep, I did that one too. When the frontal lobe is damaged, we tend to focus on unimportant things or details and not recognize the important ones. The frontal lobes also affect our language skills, including finding the right words. They also affect motor function.
Obviously, the frontal region of the brain is the "fronto" part of Frontotemporal Degeneration. It's not difficult at all to determine that it was the front of brain that failed me that day.
Also, this week, I kept experiencing pain in my right hip. The pain was not severe, but it reminded me every so often that it was not happy. I could not remember anything happening that could have caused the pain, nothing at all. Then this morning, I went outside to talk to my friend who had brought some mulch over to spread out for me. The longer I tried to talk to him, my speech got worse and I got more and more angry at FTD. It wasn't long until I stomped my right foot in sheer frustration. This cycle of speech problems and stomping my foot continued the longer we talked. If there ever was an ah-ha moment, this was it. I'll bet my friend even saw the light bulb click on. This was why my hip was hurting. Every time I got frustrated with my worsening speech, I was spreading the irritation straight to the hip! All this without knowing I was doing it.
Even though I am now aware I am doing it, it is not going stop me from stomping that foot. FTD does not allow me to reprogram my brain. In addition, the frustration seems to need to find a way out.
Another incident happened earlier this week. I had a huge meltdown. It totally ruined the day for both my husband/care giver and me. To be honest, I do not even remember at all what triggered it. My husband was there so it was probably me getting frustrated because he was ignoring what I was saying or I felt he was just not listening to me. I must break for a second to tell you something that I find funny.
After several years of many people haranguing him, my husband actually got hearing aids. Some of the amusing things about it is how he keeps turning down the television, complaining that my sneakers are squeaking on the kitchen floor or asking things like "Are the birds always singing so loudly?" Now, I finally have the answer to the claim that men have "selective hearing." He now hears everything... except me talking.
Now, back to my meltdown. My speech problems always escalate when I have become upset or frustrated. Sometimes my balance and walking worsens as well. This day, however, the effects were much more pronounced than usual. I could barely get any words out. I would get stuck on the first syllable of a word for minutes at a time or just was unable to come up with any of the words I needed. That isn't so unusual, but it was much worse than it usually is. In addition, my head kept making small movements, almost as if I were shaking my head "no." Then, my right leg started twitching. The closest I can describe how it felt was that it seems as if electrical pulses were zapping down my leg every minute or two. It frightened me and frightened my husband perhaps even more. It was probably a good thing that I had seated myself before it escalated to the point my leg was involved. Once I calmed down, the symptoms eased. The speech difficulties stayed, but the twitching stopped. I was totally exhausted when the twitching had stopped.
I sure hope that these symptoms do not start becoming regular for me, progressing just like my speech and movement issues have progressed over the past few years. It would be easy to shove the incident aside since it happened when I was having a meltdown. The problem with this is that the meltdowns are caused by FTD. Things, that used to just irritate me a bit, but I was able to accept or ignore them, and they would not become huge issues.
My FTD brain is so occupied with trying to just deal with daily life that there seems to be no leeway on dealing with anything that involves emotions. If we go back to some of the earliest symptoms of FTD, we get "changes in behavior," "showing poor judgement," "no consideration of the feelings of others," and the biggie "no filter between thoughts and speech or impulse control resulting in offending others." Yep, these symptoms were all involved that day. I said whatever thoughts came to me, disregarding whether the words would hurt my husband or not. The more he tried to not react adversely came across in my brain as though he did not care or was not interested in what I had to say. The anger and frustrations just kept feeding off each other, leading to the severe symptoms.
Could I have prevented this from escalating the way it did. The answer is a big, fat, NO! I was not capable of stopping it. I kind of remember realizing I was over reacting but even that would not stop what was happening or even slow it down. Did my husband respond in the best way possible? Probably not. He just kept telling me to calm down and to stop. It might have been better if, along with telling me to calm down, tell me that we can work it out or talk it out together and that he is there for me. Maybe, maybe not. On the other hand, if I had someone screaming and acting with so much anger, I would not known how to deal with it either.
I wish I could say that this incident was something that does not happen often. I wish I could say that it will never happen again. I wish I could say that I will work on preventing it from happening. With FTD, it's impossible for any of these statements to be true. The dead and dying brain cells can't do it. The cells cannot repair themselves or regrow. The effects of these dying cells depend on which part of the brain is involved.
The frontal region of the brain is what controls social behaviors and emotional behaviors. It is the part of the brain that tells us it is not appropriate to talk back to the pastor during his sermon. Yes, I did do that. It is also the part of the brain that tells you not to stick your finger in a pot of nearly boiling water to determine if it was hot yet. Yep, I did that one too. When the frontal lobe is damaged, we tend to focus on unimportant things or details and not recognize the important ones. The frontal lobes also affect our language skills, including finding the right words. They also affect motor function.
Obviously, the frontal region of the brain is the "fronto" part of Frontotemporal Degeneration. It's not difficult at all to determine that it was the front of brain that failed me that day.
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