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.

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.

Helpful Tips: Some New, Some Old

I learn things about FTD constantly as well as how to and how not to deal with it. Many of the things are probably already known by many others, caregivers and FTD'ers alike. I never know, though, if these are things that might help some.

One thing I have a problem with is understanding long or compound sentences. It boils down to the "one thing at a time" concept that I often preach for those with FTD. My brain can grab one idea out of a sentence or string of sentences, but then it starts spinning and can actually make me forget even that one idea that I had grasped. It is even worse when the important words are at the end. In others words, when speaking to someone with FTD, try to use short and to the point sentences. If I need more information after hearing the short and sweet message, it is better if I ask for it.

An example, "Do you remember that fudge, the one that tastes like peanut butter meltaways? We got the recipe at the craft store where we would have to go to get the ingredients. I think it was the one by the pet store. You made some of it for the bake sale at the church." By then, I am pulling my hair out, brain is spinning and I just want it to scream. Finally, the point is made... "Can you make some?" Instead, what I needed to hear was "Can you make some of that peanut butter meltaway fudge?" The first example ends up with me frustrated, angry, screaming and never making the fudge. The second one, I can answer. "Sure, it's easy, we just need to get the stuff."

I have talked about keeping it simple before, but this example seemed the perfect way to explain it. At least I hope so! I should also add that we, or at least I, cannot understand sarcasm. You answer a question with a sarcastic or snide answer, I believe that is the true answer.

Another suggestion to keep peace in the household: I have my quiet space in my room and usually end up in there by 7 or 8:00 in the evening. I need this time to de-stress if I hope to sleep that night. I need it calm and quiet. If your loved one has a space like this, try to honor it. It doesn't help me de-stress if someone pops in and asks a "quick" question that could certainly wait until the next day or a lengthy description of what is happening in the ball game. If the house isn't on fire, no one is sick or I won $5 on the lottery, please don't pop in. Now, if I win the Power Ball, you can come in, but I don't buy lottery tickets. Lottery tickets are one of those things that are not good for an FTD'er to start buying. Since handling money is often a problem, how would I know when to stop buying them? Plus, even if I had the winning ticket, I would most likely lose it before turning it in. I have a habit of putting things "where I can find them" and then no way remember where that was.

I hear many caregivers asking about eyes and why does their loved one keep their eyes closed. I'm sure I have mentioned double vision before but, as mine worsens, I realize how bad the problem is. When you see two distinct images of the same thing, it strains your eyes to try to focus. With FTD, the double vision fluctuates so corrective lenses aren't going to do the trick. If I am looking outside, I see two of everything but one of them keeps moving in and out. So, no, we probably cannot see what you think we should because "it is right there where you are looking!"

The second problem that can occur with eyes is sensitivity to light. I cannot back this up at all with medical fact, but I suspect this has something to do with the eyes not getting the message to dilate properly. Many people get relief by wearing sunglasses, even in the house. It also helps to not sit right by the window or glass door. If I want to watch the birds fade in and out from one to two images, I do it from several feet away from the window. If it is still too bright for comfort, closing the shades or curtains should help. I can remember when my mom was caring for my grandma who had FTD. Mom put her easy chair right by the window so she could look out and always had the TV on for her. When I would stop in, Gram would often ask me to turn off the lights. It never occurred to me that it was probably too much light until I experienced it myself. An interesting occurrence that affects at least me, is that when I try to read, it seems I cannot get enough light. It is almost like having cataracts again. When I try to read the newspaper, I find myself turning on more lights. For those of us who can still read, I find using my Nook or tablet is easier on my eyes than real books. I find the "night" setting best. It is a black background with white letters. I also read in a dim or dark room. Both the double vision and sensitivity to light can cause horrific headaches. They are so bad that closing our eyes is sometimes all we can do. Headache medications don't make even a dent in FTD headaches.

Totally changing the subject, Agave Nectar is one of the best things I have discovered. Those of us with FTD crave sweets and carbs something fierce. One problem with that is it can cause blood sugar issues for me and I am not even diabetic. Agave Nectar is about the consistency of honey and is made from the agave plant. Tequila is also made from agave, so it must be good stuff in my mind. Don't worry, it's not alcohol. Though it has just as many calories as sugar, it does not affect the blood sugar levels the way sugar does. Wherever I can, I use Agave Nectar instead of sugar. I use it in my coffee and tea. I also use it anything I am cooking and that needs some added sweetness. Any time a recipe calls for honey, I use it instead.  I wouldn't recommend trying it for baking except as a substitute for honey.

Everyone talks about trying to get the FTD'er to help around the house with little chores where possible. I am supposed to make my bed every morning. This often resulted in total frustration when I couldn't get the sheets and blankets fixed right so the bed could look okay. We bought a puffy comforter that solved the issue. Now, if the sheets and blankets aren't pulled up straight or perfectly flat, the puffiness of the comforter covers it up and the bed looks great. Don't tell my husband but, sometimes, I only pull up the comforter without worrying about the sheet and blankets and it still looks great.

One thing that can be a challenge when caring for an FTD'er is brushing the teeth. One day last week, I accidentally swallowed some toothpaste. It really burned, especially at the soft palette at the back of the mouth. That burning sensation stayed for a couple hours. I had no idea what caused me to swallow some of the paste but it made me think of the difficulties to come. I also remember the kids' toothpaste I bought when my daughter was first learning to brush hers. It was fruity sweet, didn't burn or irritate and was nothing to worry about if swallowed. The light bulb lit up over my head that children's toothpaste with a children's soft, or adult super soft toothbrush with a small head, just might save some battles. The other thing that can work is the little foam squares on a stick that they use in hospitals and nursing homes. The foam contains something to clean the teeth, is soft and can be easily slipped in between the cheek and gums. These are available on Amazon and, I imagine, at most drug stores as well.

I am learning what to not eat because it will trigger my swallowing difficulties. I only eat canned fruit now because raw fruit is one of those triggers. For instance, peeled apples cut into small pieces is better than whole or large pieces. Applesauce is better. Some of my other triggers are french fries, potato chips, pretzels, the crust on toast and most anything on the dry side. It does help to drink liquid before eating and throughout the meal. Keeping to wetter foods helps a lot, for me at least. I cut the crust off toast and sandwiches. I cut my food into very small bites.  If I put butter, cream cheese, jelly or anything similar onto crackers, I can swallow them easily but not if they are plain. When we order pizza, I get a softer crust and some toppings that aren't dry. I also often make our own pizza to solve the problem. I buy the soft flat bread from the bakery in the grocery. Contadina makes a decent pizza sauce in a squeeze bottle (I'm sure there are other brands, but that's what our store carries) or I use olive oil and a little garlic. Add on plenty of cheese, onions, fresh, peeled, tomato slices or any other soft topping I scrounge out of the fridge, and it makes a yummy pizza that I swallow with no problem. I only bake it until the cheese melts, so the crust doesn't dry out.

Several incidents of trying to juggle my "stuff" happened this week. I find it difficult, while using my cane, to juggle anything else. I have made sure my purse has long enough straps that I can put them up on my shoulder and still leave that hand for hanging on to my husband, or whomever, for additional support. Even with it that way, it still gets awkward sometimes and if you add in one more thing, it becomes too much and overwhelms me. I know I should give up carrying my purse or just use a small cross body one, but how else do a carry a bottle of water just in case, sunglasses, reading glasses and all the other necessities. Unless my husband wants to start carrying a purse, I'm not ready to give mine up.

One instance that happened this week was when I reached out to accept something that someone was handing to me. I totally forgot about my purse and it crashed to the ground. Another time, I was entering a business and two people were being very kind and holding both the front door and the airlock door. One had the right side of the door open and the other the left. For some reason, that confused me. I was trying to switch my cane from one hand to the other. I have no idea why my brain thought that to switch sides of the opened doors required me to switch hands. This is one of those mind boggling things that occur all the time with an FTD brain. By time I was through the second door, my brain was spinning and trying to figure out what was happening.

My point on this is that I need to keep things as simple as possible. I need to carry as little stuff as necessary. Usually, we work it out, but in this case it was pouring rain and my husband had dropped me at the front door since all the handicapped spaces were full. After the confusion over nothing at all, I realized how much I depend on my husband when we venture out. Not enough, though, that I would wait in the pounding rain for him to get to the door.

Life with FTD is always an adventure for those of us with the disease and all of our caregivers. This blog entry reads a little disjointed. Then again, my FTD brain is also disjointed. I hope some of these things can help you.

Trying To Work It Out

Since being diagnosed with FTD, one of my mantras is "One Thing at a Time." I have talked about it and written about it many times. My usual fallback to explain the principal is baking a cake and how it is no longer just one thing to do, it is broken down into at least a dozen things to do and it can be overwhelming. This week, it came to me that it might be easier for caregivers to understand if I take in backwards.

When the person with FTD lashes out in anger, it is often a result of too much stimulus. This can be noises, questions, lights, trying to do things, on and on. My husband was asking questions of me one day this week. They were simple questions one leading to the next. After four or five questions, I snapped and yelled something like "Figure it out yourself!" If he had just observed that I was getting stressed and/or frustrated and backed off with the next question, it would have been much better. He could wait until later, if possible, to ask more questions. Watch for frowns, squinting eyes or blank stares to see if they are confused or are no longer following what you are saying. I start waving my arms to chase away his words. You know your loved one better than anyone else and are best able to learn the signs from them.

Now, I can even insert my other favorite mantra "It's not that I won't, it's that I can't."  The questions he was asking weren't very difficult ones, but as one led to another, I reached my breaking point. I did not intentionally get frustrated or yell out. It just happened. I ended up feeling upset that I had let him down. I would have liked to be able to help him by answering all the questions, but I reached my limit and could not continue. So, now, I was angry at both of us.

When things like this happen, I think if might help if the caregivers backs down. Don't argue back, just say "Okay" or "I'm sorry" and back away. Once the caregiver steps away from the situation, it is time to look back at what just happened. What caused the overload and how can it be prevented the next time.

What helps with me is, as I said, keep the point short and sweet. Don't build up to it with long sentences setting the scene. Ask the question or make the statement as short and sweet as possible. Also, try to remember that things we used to do before FTD are not necessarily things we can still do. If we don't have the answer you want the first time you ask, drop it.

It is not helpful to ask the same question over and over or by rewording it. Several times over the last two weeks, my husband has asked me to try to remember something that happened 40 years ago. He obviously could not remember so I'm not sure how he thought that I might be able to.  In addition, if I could not remember the first time he asked, what was the likelihood that two days later I would be able to. I got angry around the fourth time, but my reaction was not as bad as in my previous example.

Another trap for caregivers is to keep requesting your loved one to do something. If you ask them to take out the trash or feed the cat, whatever, and they don't respond, wait a bit and calmly ask again. If they resist. Odds are that the cannot do it, even if it is one of the small chores they are usually able to do. It is not always easy for the caregiver to pick up on things throughout the day that are building up in their loved one and leaving them at the point where they just cannot seem to focus on doing anything at all. Again, they may want to (and you certainly would like them to) but they cannot. If you keep forcing the issue, it still won't get done and one or the other of you will reach your breaking point.

The worst part about reaching the point that I cannot go on and lose my patience, it leaves me worn out, usually with a headache and irritable for the rest of the day. I can't do anything like fix a simple dinner or enjoy doing anything at all. From reading comments by caregivers, it seems to be pretty much the same for them.

Now, it probably sounds like I am picking at my husband. I really am not. He takes great care of me and is always ready to jump in and help when I will allow it. When he makes mistakes with me it is that sometimes I seem like my old self for long enough that he forgets. I don't blame him one iota for that. I wish I could be my old self as well. I use so many examples that involve him because he is the one I spend the most time with. Plus, he won't get upset that I use examples with him like my friends and other family might.

We try to do what I am suggesting all caregivers to do. After the fact, when we have both backed off and settled down, we talk about what happened. We discuss how things built up to be too much and what we each could have done differently. I also try to explain what my level of frustration is and how worn out the event has left me.

The best part of these learning experiences is that we always give each other an encouraging hug afterward.

When FTD Takes Over (UPDATED 7/18)

I have mentioned, many times, in previous blogs about how so many things can become way to complicated for someone with FTD. This past week has been a perfect example of this. My brain is not working well after a week of frustration, so I hope I can relay this so it makes sense.

We have used DirecTV for about 10 years and we were pretty happy with it. Then they merged with AT&T. I could no longer call and speak to someone in the U.S. This was never a problem pre-FTD. I was good at understanding dialects and accents, but not anymore. Also, even if someone knows how to speak English, they don't always understand the proper meaning of some of our words. So, for the last five years or so, I would request to speak to someone in the U.S. if it was difficult to understand them.  Since the merger, they could no longer do that.  They did transfer me to three different people at their location until I got one I could understand. Oh, and this was after the first one hung up on me.

The language issue was livable. It was frustrating, but I got through it. The worst part was that now that I was getting a separate bill from Direct instead of it being on my phone bill, I realized that a discount that I was promised a few months prior was not reflected. $45. a month was worth complaining about. They kept saying that "he should not have done that." Okay. But he did do that. They also kept saying there was a record that I called, but not of what was said or done. That was a huge clue that something was wrong. Even with FTD I figured out that how could they be saying he should not have done that, if they were not seeing a record of what he had done. Plus, I have always been amazed at the notes they enter with every call.

The entire experience was one frustration after another. I must admit here, that since I have had FTD, I get angry more readily. I was actually surprisingly calm on the phone with them. However, I was angry enough that I contacted Dish Network and signed up for service with them. I even spoke with someone in the U.S.! We worked out a good package for our needs and we will be saving nearly $50 a month. Pretty darned close to the $45 discount that Direct was refusing to acknowledge. I asked my husband if he was in agreement and he had no problem with it.

Two days later they came to install Dish. Oh, first I should say that I called that morning to cancel DirecTV and they offered me even a better deal to stay with them, but not enough to change my mind. The interesting thing, remember that $45 discount I was promised? Miracles of all miracles, he could see the record that I was promised that and insisted it was handled incorrectly and we should have received the price reduction all along. Duh! Anyone who knows me knows I am just a tad stubborn (read that as extremely). I still discontinued Direct.

That afternoon, the install went really well. They guys were really nice. The picture quality was amazingly better. They gave me a very quick explanation about the remote that went totally over my head. I was quite confused but was reassured that I could use the instruction card for the remote and that there was channel somewhere that would help. Believe me, neither one helped. It's been three days and I still have trouble even watching anything.

I need a remote where I can push the Record button if I want to record and the Delete button to delete something. Certainly need a single button to watch a show I have recorded. No, that takes five clicks of different buttons. To delete a recording, it takes three. To record takes at least three.

The stress of having two guys there working in three different rooms plus the garage and outside was enough. I was frazzled beyond belief. There were questions about where to put things, where they could access connections and more. It turned out that their dish had to be moved 12 feet away from the old one. There were boxes of old equipment, new equipment and a pile of instruction books. I had to decide where they should put all of the equipment. They needed a short extension cord. We could not find our box of extension cords. We ended up taking a 2-foot cord off something in the basement until we could find them. When they were done, they gave me a quick rundown of using the remote. They realized I wasn't comprehending so they assured me all the instructions were in the remote guide. Note to self: just because there are instructions, it doesn't mean you can understand them.

In my already frazzled state, I tried to operate the system. I kept trying and trying. I know, I should have waited until the next day when I wasn't so exhausted and frazzled. But, come on now, the Pirates were playing. I had to find them and figure out how to record the game so I could watch it later.

By time I gave up, it was nearly 9:00. We had not had dinner. Come to think of it, I don't think I had any lunch either. I could not talk sensibly. I was stuttering and struggling at the beginning of every word. I was skipping words and struggling to find the right ones. My husband kept trying to help me, but that made it worse. A friend called and I explained that I could not talk and would talk the next day. She wanted to discuss our lunch plans for the next day. I could not find or get out the right words that, no, I cannot talk... literally. I finally said "Call tomorrow." It was extremely frustrating for me.

My husband offered to go pick us up something to eat but I could not think of anything. He kept trying to suggest that I go with him but finally backed off that idea when I yelled "No, cannot." Not sure how forceful it comes out when it sounds like "N-N-N-N-N-N-No, ca-ca-ca-ca-ca-cannot." I am not a big fan of fast food, but I finally got out "Big Mac, you go."

People get new TV equipment installed every day. Five years ago, it would have been a drop in the bucket of my day. Instead, I was so frustrated, embarrassed, exhausted and broken that I was done in. I admitted defeat. I knew I should take a couple days and do nothing to get recharged, but felt I must go to lunch with my friend. She had gone through an upsetting event that week and I knew she needed to spend some time with someone who loves her. I enjoyed the time with her, but just going out to lunch and talking wore me out very quickly.

Today, two days after the install, I am still struggling for words, still cannot figure out the remote and am totally weary. Tomorrow and maybe the next day, I will do nothing so I can try to recharge. Well, unless something comes up.

I contacted Dish Network to see if they had a different remote that was easier. Of course not, that would be too easy. So now, I think all the way back to being upset over the bill and realize that I should not have let that anger allow me to make a questionable decision to switch. Now I wonder if I should contact Dish Network to see how much it would cost us to get out of the contract or if they would be kind enough to let us out of it because I can't use it. I don't have much hope on that last one.

I did, though, send an email to them to see if they can provide me with straight forward step by step instructions on using the remote to accomplish the functions I need. That might do the trick. Oh, and I haven't even mentioned needing to learn all new channel numbers. Ei-Yi-Yi, thanks FTD!

UPDATE:  Wow! I talked to Dish on Monday. They sent me to the office of the President. I spoke with a young man there who spent at least 2 hours on the phone with me. By that morning, I was so stressed I could barely speak and was stuttering all over the place. He was so patient and actually listened. He said he would let me out of the contract if necessary, but could we talk through it and see if he could come up with an answer that would work for me. Long story short, the local technician brought me out an old style of remote that is so much easier, more like what I was used to. One button for records, etc. The young man called me yesterday evening to check up with how it was going and promised to call me again in a few days. Now, that is the way service is supposed to be!!!

When to Help

Life can be a conundrum. How is that for a ten cent word coming from someone with FTD?

A question kept arising this past week. When does a caregiver step in and help, offer to help or just step aside and let someone with FTD do it alone? It seems that sometimes, at least in my life, that a caregiver walks a pretty narrow line between any one of the three. This is not limited to just my husband who lives with me. It is also true for my daughter, friends and other family members.

This isn't a cut and dry issue. People are all different, react differently and behave differently. What guidelines help with one person with FTD may not work for another. Like we often say "If you have seen one case of FTD, you have seen one case of FTD." If someone has been confrontational all their lives, odds are that they are going to be confrontational in their life with FTD. If they like to do things alone, they probably will still want to do it themselves. You get the idea, I'm sure.

The person with FTD most likely wants to feel that their life is still worth living. Because of that, the caregiver should not take over everything or do things because it is easier than to let the one with FTD try. I want to  keep cooking as long as I possibly can. I usually enjoy doing it but even that can overwhelm me at times. On the other hand, cleaning house is very low on my list of things to do that require use of my dwindling energy.

So, when does the caregiver step in and when do they back off? Like I said, it is tempting for the caregiver to take over just because it will done quicker and probably better. Some times it is pretty obvious that I have to do it myself. If I am agitated because a couple shrubs are overgrown, I will most likely get to the point where I grab the clippers and go outside to trim them. We limit my access to only the small handheld clippers that would only allow me to chop of the end of a finger, not the ones that would cut of my whole hand. In this circumstance, with these limitations built in, it is best for my husband to back off and allow me to do it. He does make sure to tell me that when I am done, he will take the clippings into the woods to dump them so that I don't try that. He also keeps an eye on me and if I am looking tired, legs shaking, stumbling or falling, he immediately comes and forces me to stop. If he doesn't make me stop completely, he at least makes me stop for a few minutes and drink some water. I no longer have the ability to know when I need to stop. I can no longer make that decision for myself. I would keep going until I injured myself.

It is the same way with cooking. He tries to be in view of the stove when I am cooking, just in case. He lets me do it myself but reminds me often that if I need help, he is there.  He is also a great cleaner-upper and does not complain when I make a mess. Of course he does get to eat the results, so there is a reward for him to back off and let me do it. He is learning to observe and step in when he sees I am struggling.

How does he know? Most of the time, when I need the help, is when I am becoming greatly frustrated. There are obvious signs when it comes to working in the kitchen. I will often be turning in circles because I cannot remember where something is kept or if I have set it down somewhere out of place. In this case, it is pretty obvious that I am struggling. There are more subtle signs as well. When I get stressed or frustrated, my speech abilities, as well as my balancing and walking, may worsen. It is the same basic principle when I am doing anything.

Now comes the difficult decision. Does he step in and take over? Does he come over and offer to help? Does he just let me do it because odds are I will lash out at him and insist on doing it myself? Ahh, if only there was a protocol or handbook for such things. On top of that, what works one day may be the worst thing to do the next.

First of all, be observant. Look for worsening FTD symptoms or slamming doors or doing things like turning in circles or yelling. Am I liable to hurt myself? Am I using a knife, clippers or something that will hurt me. Do I have something on the stove that might burn? Am I destroying a bush? Start off with the least invasive option. In the kitchen, for instance, ask if I could use some help. If I refuse, but the problems worsen or continue for long, it might be time to come over and help whether I want it or not. If it gets worse, it would be time to force me to sit down and take a breather. That is risky, because I may lash out.

It is important to realize that when someone with FTD lashes out, it is most often due to frustration, not the anger that it seems to be. This is when I need to be reminded, just as I am always telling everyone, that it is "One Thing at a Time." Something like, "Lets slow down and do this one step at a time." Sometimes, it helps to just tell me to stop and then give me a hug along with an assurance that we can do this together. Other times, I will reject any touch at all.

To try to break it down and to have something resembling protocol, we do this one step at a time as well. First of all, approach the problem, pay attention to the words and actions that are happening. By the same measure, be careful to use words that are not threatening, demeaning or liable to come across as belittling the FTD'ers abilities. React in an appropriate manner. If I am not endangering myself, others or the environment around me, provide assistance but do not take over. If things escalate, that is when you take over.

Above all, remember that we are doing the best that we can. We are trying to maintain dignity and a sense of worth. Wait for a response before jumping into the next level of assistance. Try to remain as calm as possible and as reassuring as possible. By you remaining calm, there is a better chance that we will as well.

Remember that we are still the same inside. We may not walk as well, speak as well or even control our bowels as well, but we are still a person and not a disease. When caring for my mom, in the late stages, I actually looked into her eyes and asked her if she was still in there. I would love to say that she looked into my eyes and squeezed my hand. It didn't work that way, she didn't react at all. I then put my hand in her peripheral vision and clicked my fingers. She moved her eyes to the side and looked at my fingers, then looked back at me with a questioning look. I imagined her saying, "Are you nuts or something?" That was the mom I knew and she was still in there.

Accentuate the Positive, Eliminate the Negative

I spend a lot of time on my computer every day. I'm guessing at least 2 hours a day. Of course I go through my emails. I also play several games that stimulate my brain. Most are word games because I know how devastated I will be when I can no longer read and/or continue writing. I keep trying math games, but it is sad to watch the decline in the results. It is strange to me that any math problem that involves 7's, defeats me.

The best part of my computer time is the time I spend on the online support groups. There is one group that is strictly for those of us with the disease. We have all become like family in this group and I rely on it tremendously. It truly is a support group, not just a place to feel sorry for ourselves. I truthfully don't know what I would do without it.

I have developed almost a phobia of phone calls. I never pick up the phone to call a friend or all but a small handful of relatives. Because of this, I rely on the computer for much of my communication. It's pretty simple to figure out why. If I type something incorrectly, I can fix it. Spellchecker is my best friend. If I can't think of a word, I can sit here and think of what it was or come up with a different way to say what I wanted to. With phone calls, I don't have the luxury of mulling over my words before I speak them. If I start struggling to speak, it is quickly obvious to the person I am talking to.

There is also the dreaded problem of lacking a filter between brain and mouth. If I think it, I say it. Apparently I did that for several years before being diagnosed without realizing that it was happening. Friends mentioned that to me a few months ago and I was not only shocked, but rather humiliated. They told me that they still joke about some of the things that I used to say and that while some were funny, others were kind of mean. They call it their "Cindy-isms." Now I fear that I have probably offended a lot of people through the last decade or so. Because of this lack of filter, I feel more confident communicating on the computer than I do verbally.

The computer is usually an escape for me and a place to find some good laughs. I always detested Minions but now find all the Minion posts to be very funny. It is also a great place for me to track the growth and life of new members in my group of family and friends. I love watching the kids grow up. Because it is difficult to travel or even visit, I love this part of Facebook!

Okay, you've got the gist. As usual, I have blathered on.  I often use my computer time as incentive to get some things done. Things such as that I cannot go on the computer until I clean the kitchen floor. I impose this on myself because it is the best incentive I have for encouraging myself to do things that are difficult for me or things that I just detest on general principle. Honestly, who like to clean bathrooms?

Now that I have waxed so eloquently (Stop laughing!) about the benefits of my computer time, I come to the negatives. It took me a long time to realize that on many days, I am actually depressed after spending time on the computer. There is just too much negativity out there and I cannot handle it.

During all of last year, most of it was all the political hatred being spewed. Even the spewing by those with similar political believes as me were too extreme. I wish I could say that this ended after the election, but it hasn't. The constant negative comments from both sides, and downright hatred, actually forced me off Facebook for a couple months. I had come to realize how depressed I was feeling and that this was the bulk of the cause. I would go on FB long enough to go to my support groups and that was all. It still amazes me how some of my FB friends can weave a nasty political comment into just about everything that is being talked about. It seems that many people assume that everyone on their friends list have the same political beliefs so that it is okay to disregard and disrespect everyone else.

It isn't just the political nastiness. Often it is the support groups that are open to those of us with FTD as well as their caregivers. Every so often, I must stay away from those groups because of the horribly nasty comments caregivers will make about the person for whom they are caring. I am talking really nasty, heartless and mean. Some of the members seem oblivious to the fact that the group is also open to those with the disease. I am betting that there are groups out there that are strictly for caregivers to vent about the horrible things that those with FTD can do. The life of a caregiver can be dreadful and defeating. I understand that. The hatred and negativity, though, frightens me that this could be my future and end with my caregivers hating me. I don't want that for them.

I just cannot deal with negativity. I fight the negative feelings constantly. The disease of FTD can be depressing enough. I am constantly battling with myself to stay positive. Negative energy is not good for anyone. It is even worse for someone who has battled depression for 25 years. I used to be winning that battle, but since being diagnosed with FTD, it is a different and much more difficult fight.

I have finally learned that some days are just not the right days to be on Facebook. On those days, I need to stay off or shut off the computer totally. I am finally starting to notice when it is depressing me and do one of those as soon as I get the inkling it is .

Today was one of those days. There were some very uplifting things both on Facebook and in my support group that is just for us. There was just wonderful news about things that had been looking so difficult and had finally changed for the better. I was feeling elated and hopeful for them as well as in general. Unfortunately, after leaving the support group, it was a different picture. There were several nasty political" cartoons" on my FB feed. I have trouble calling them cartoons. My image of cartoons should still be watching Bugs Bunny and Yogi Bear on Saturday mornings. Then there were snarky comments by a couple people and more negative memes. I didn't stay on very long at all.

The obvious answer would be to just quit going on Facebook at all, but I don't want to miss the good stuff and the support I have from my friends in the support group. Plus, I am extremely stubborn and refuse to run away from a place where there is good to be found. It's all about weighing the good and the bad. It is also about learning when it is time to back away for a bit. There is no way to change other people's attitudes, but I can do my best to change my own from negative back to positive.

Thank you, Mr. Bing Crosby, for the title of this blog. Now I will be singing the song in my head for a few days. That's a good thing, now I can keep it going with "Latch on to the Affirmative!"

This One is for the Caregivers

It is about time that I write another blog entry dedicated to the caregivers. The role of caregiver or care partner is one of the most difficult jobs there is. You need to have the utmost patience, a mind reading ability, the muscles of a body builder and the ability to go without sleep. It is often a thankless job as well. I have extreme admiration for most caregivers. I will not address the caregivers that I find do not care or are totally lacking because their numbers are not nearly as large as the good ones.

I would like to address several issues. Some are questions that I am often asked by caregivers and some are just things that I truly wish could be handled differently.

One of my pet peeves and a habit that many caregivers need to break is the use of the words "won't", "insists on doing", "refuses to do" and any variation on them. It can be something as extreme as "s/he won't swallow her food, just hoards it in her mouth." It is not that s/he won't swallow, it is that s/he cannot swallow. It isn't always something as extreme as that example. It can be something like "s/he refuses to brush his teeth. It is most likely that he cannot brush his teeth because he does not remember that he should or how to do it. Some caregivers will put notes on the bathroom mirror to remind their loved one to brush their teeth. That is great in concept and probably makes a difference in the early stages. Unfortunately, eventually, they will not understand why the note is there, what it says or how they are supposed to do that anyway.

The FTD brain works much differently than a healthy brain. It reaches the point that "brush your teeth" is too overwhelming. It can only handle, "find your toothbrush, put a small dab of toothpaste on your toothbrush, wet the toothbrush, etc." It is not only overwhelming, but it can be extremely frustrating as well. When the FTD brain gets frustrated, lashing out often follows. It can be yelling, throwing the toothbrush away or just refusing to do anything.  It is not that they don't want to brush their teeth because they probably feel a little furry, they just can't. The same principals apply to trying to get them to bathe or shower, make their bed or just about any activity you want to encourage them to do. Sometimes, it might help if you stand and brush your teeth at the same time so they can mimic what you are doing. I hate it when someone compares taking care of someone with FTD to caring for a child, but I am going to. It does help to remember how you would teach a child to do whatever it is you are wanting them to do. Please, though, do not talk down to the FTD'er or treat them like a child!

I remember, way back in my high school days, an assignment given to us by my favorite English teacher. She would have us write a description of common items and to describe it as though someone came from outerspace and had absolutely no clue about what it is. The one I remember being the most difficult was "water." I would often think about that when I was acting as a caregiver for the family members who dealt with FTD before I did.

So often, caregivers do not totally understand that too many things going on quickly become overwhelming and prevent the brain to do much of anything. I call it "going into the spin cycle" because, to me, it feels like my brain is spinning but can't find a place to stop where anything makes sense anymore. Music, pets, children, television, lawn mowers, anything that makes noise or anything that draws the eyes away from what they are trying to focus on are all things that a normal brain takes for granted and just blocks out. Temperatures can do it too, like if they are sitting near the air flow from the air conditioner or heat vent. The FTD brain cannot block the distractions out.  I know of one caregiver who would put her mother in a chair in front of the television and leave her there most of the day. She truly thought that entertaining her mother with the television was a good thing that she was doing. She would also open a window next to her mothers so she could "get some fresh air." After a couple hours, her mother would become very agitated and start yelling. She didn't know how to explain that the television was overwhelming her and she could not handle it. It was exacerbated by the noises and commotion coming in through the window.

Caregivers often complain because their loved one acts inappropriately at restaurants or in other social situations. They may even accuse their loved one of trying to get attention. Assuming that the loved one is not taken to restaurants several times a week, the odds are not very good that they will remember how to act in a restaurant. It is a strange place, with a lot of strangers around, perhaps music playing in the background and other people talking. Add in having to make a choice from the menu and having to talk to strangers. I don't say that you shouldn't go to restaurants. My husband and I go out at least once a week. We do not, though, go to "fancy" restaurants anymore where I might feel embarrassed. Yesterday, I was at a restaurant with three friends. I was on the far side of a booth, so the waitress had handed me a bowl of soup. I joined in to the conversation and totally forgot I was holding the soup. It ended up splashed all over my clean white shirt. Of course it was tomato based so it showed up quite well. We were in a family-style restaurant and it was no big deal. The waitress grabbed a stack of napkins and offered to help. The three friends with me all know that I have FTD and care enough to have learned enough about it to realize that it wasn't a "stupid" thing that I did. It was just one of those times that boils down to the "one thing at a time" concept. I should have set down the soup before trying to talk to someone, but my brain was not going to realize that. It really helps if the caregiver pays attention to the one with FTD. If that had happened to me in a fine dining restaurant, I would have been mortified. If I had been out with my husband, he would probably have helped me set down the bowl as soon as I had accepted it from the waitress.

Another complaint that crops up a lot is communication difficulties. I am not qualified to talk about the FTD'ers who have aphasia and have severe difficulties speaking because I have not reached that point and the family members I cared for prior to my diagnosis did not have it either. I do have trouble speaking, though, and it gets much worse when I am stressed. I can not get words out and it sounds like I am stuttering and I will leave out words. Instead of saying "close the door for me" it will come out as "cl, cl, cl, cl, close d, d, d, d, door."  I also forget words and it can take me a while to remember the word or find one to substitute. When someone tries to fill in the words for me, it does not help. It actually makes it worse because I become more frustrated. Odds are that the other person comes up with a totally different take on what I am trying to say. It also distracts me enough that I can not focus on what I am trying to say. It is not unusual, when someone is "trying to help" that I will just quit trying. It is interesting to me that when I do that, I make a motion like I am trying to erase a blackboard, or whiteboard for those not old enough to remember blackboards. I even remember when the blackboards were actually made from slate!

I am afraid I have not provided many answers here. The bottom line is to keep it simple, break things down into steps (the one thing at a time concept) and do not expect more than your loved one can offer. Also, it is important to observe what is happening so that you may understand why they are reacting the way they are or why they are lashing out. Oh, and try to find that patience of Job.

It is also a good idea to discuss any new developments with the doctor. They may indicate something to the doctor that we would not think of. One of the biggies is UTI's. I did not understand why people on the support groups would quickly ask if they had checked their loved one for a urinary tract infection. It seemed like that was a stretch at best. Then I read something that changed my mind. It explained to me that older people and people with chronic diseases have much lower resistance to infections. The infections also have more impact on their bodies. If their body is busy fighting off an infection, especially a UTI, it is depleting their ability to work properly in other areas. It can increase just about any symptom of FTD, increase agitation adding to the stress of the disease. It can also cause just enough discomfort to distract their brain from functioning as well as it had been. The good news is that once the UTI is cleared up, they most often get back to where they were before the infection. It also helps that you can now buy urine test strips in just about any pharmacy so you may be able to avoid trips to the doctor.

Also, respite care is vital for the caregiver. You cannot do it all for very long until you become worthless to yourself, the one you are caring for and everyone else in your life. It can be difficult to ask for or to accept help. You must force yourself to do it. Ask friends to come sit with your loved one for an afternoon so you can go have a massage or just sit in the park. Ask family members to come stay with them for a weekend. Check out respite care that may be available in your area at nursing home or other places. Adult day care is often an answer as well.

This had not crossed my mind when I started this blog entry, but did just I was wrapping it up. Here is the link to a brochure I wrote, called "Coping with FTD." It contains some pretty basic and common sense tips that I have after being the caregiver for family members who had FTD and now with me having it as well. I hope it helps.

www.theaftd.org/wp-content/uploads/2016/12/CindyODell-CopingWithFTD-Dec2016.pdf

Way Too Stubborn

FTD has a way of making our lives extremely difficult. Speech issues, mobility issues, social issues, medical issues and on and on. I don't think I need to go into details on each one since I have done that repeatedly in the past. There is one that I need to talk about and that is anger and frustration.

I get angry and frustrated because I have difficulty communicating through speech. I get angry and frustrated by not being able to walk well. I get angry and frustrated because I can no longer satisfy my incessant need for independence. I get angry and frustrated when I have to ask someone else to do just about anything for me. I guess that goes hand-in-hand with my need to be independent and to do it all my way and by myself.

A couple weeks ago, I wrote my blog entry about finally accepting that I can not do it all myself anymore. I was diagnosed back in 2010. So it took me seven years to finally admit it, not to bad for me. I have broken down and hired someone to clean my house, do the yard work and the landscaping work (trimming, weeding, mulching). Now, I admit, I am quite picky. I want everything done the way I want it and when I want it done.

The house cleaner came the first time a week and a half ago. The best way I can sum it up is that she did an adequate job. I accepted that, touched up a couple things she missed and made a note of what to explain further to her next time. To begin with, I was really proud of myself for accepting that I needed help with it and really proud that I was not critical of what she did. It helps that she is a super sweet older lady.

I have been hiring a friend for several years now to come trim all the shrubbery, kill the weeds and spread a lot of mulch. It's kind of funny, actually, that we pay him to spread a ton of mulch (not literally a ton, just seems like it) then turn around and have our yard guy do a fall clean up before winter. He comes with a really strong blower to drive all the fallen leaves into the woods. Unfortunately, he also sends the mulch right along with them. See, I can accept some things!  Back to the friend, it's been a month and he has not come to do the work. In his defense, it seems to be raining five days out of seven and he works long hours at his real job. Despite that, it was really getting to me that our property was looking a little ratty.

I came up with a compromise. I had already pulled weeds and trimmed in the back of the house that I see all the time from the family room and deck. That helped sooth me for a while. Then it started bothering me how ratty the property at the end of the driveway looked to anyone driving in. So I asked the lawn guy to weed whack the hill while he was here mowing. Now, this is not a huge piece of property. We're probably talking a 10' x 12' slope and he has done this a couple times a year for the past several. My husband asked him to do it this week. The next time I went out and saw it, he had trimmed the grassy area above it and had not touched the area that was getting to be overgrown. Did he not look?

So, this morning, after a few days of getting angry and tied up in knots every time I was in the driveway, I went on a weeding rampage. I crawled and scooted myself all over that hillside and got it to be looking presentable. God love my husband, he didn't say a word, just kept coming and emptying my weed bucket. He even took me out for an early dinner once I finished. I think he did it to keep me from going into another frenzy.

Now, after this long winded story of my stubbornness and not so much ability to accept that which I cannot do, I will get to the point. I get so frustrated and angry that it actually worsens my FTD symptoms. I had a lot of trouble walking from the car to the restaurant and through to our table. I had trouble ordering and making requests to the waitress. I know it will be a few days now until my FTD symptoms revert back to how they were, if they fully do, before my rampage.

Those of us with FTD pay a huge price for pushing ourselves to try and be like we used to be before FTD. The price is both physical, with worsening symptoms, and emotional when realizing all over again that we have limitations and can no longer do what we want.

One good thing this week... My sister is always offering to help and I am always refusing. I am supposed to be the strong one who does things for the rest of the family, at least in my mind. This week, while we went to an out of town doctor's appointment, she came and scrubbed the outside of all the gutters around the house. This was pretty much an all day task and one that we could not do. When she was finished and was packing up to go, she looked me in the eyes and said "Thank you for allowing me to help you."

I am tearing up just typing these words. It probably won't make much of a dent in my resistance to accepting her help, but "Wow," maybe I am just a tad too stubborn. Maybe if it happens another 50 times?

I Need an FTD Filter

One of the problems with FTD is that I cannot figure things out anymore. When a person without FTD wants to solve a problem, usually they seek more information to do so. For me, and others with FTD, seeking out more information may actually make things worse. The AFTD has a webinar on its site right now about the 4 different types of bvFTD (behavioral variant) they have isolated. I finally sat down to listen to it. It started out fascinating me, but after less than10 minutes, I had to stop listening. As the speaker kept presenting more and more information on the study and its results, I could feel my brain becoming overloaded. I had developed a severe headache in my left temporal area. As each new piece of information was presented, the pain worsened significantly and the new info was not being absorbed. To put it simply, my brain could not handle any additional information and was at the point that my entire brain felt scrambled. Nothing made sense at all, not just the new information.

My mantra, as I have written many times, is "One Thing At A Time." I also stress how each "one thing" must be a short simple step, not a process. Trying to assimilate this new knowledge was too much. After giving up, I thought that if perhaps it had just been broken down into small key points, I might have been able to grasp the info. I needed a filter to block out the unimportant stuff and just let me hear the important part.

This past week, something happened that, to me, seemed to parallel this thinking.

My daughter and I have been badgering my husband for at least five years to get his hearing checked. This past year, it has become significantly worse. I will repeat things several times. By the fourth or fifth time, I am practically yelling it. His response is always "You don't have to yell!" It has been horribly frustrating and it didn't make sense to me. To me, it made sense that if I said it louder, he would hear it and understand. Often, when I say something, he will pick out a word that rhymes or sounds similar to one I have said and often make up a sentence to go along with the word. While it can be amusing at times, it is almost beyond frustrating.

The good news is that this past week he finally saw an ENT doctor and had his hearing tested. Low and behold, severe hearing loss in both ears, most likely from being next to and inside of race cars for over 40 years with no hearing protection. It doesn't matter why, it only matters that it can be corrected.

The most interesting part to me is when the doctor was explaining that while volume is an issue, his biggest problem is clarity. The doctor explained how that can be corrected by hearing aids now just as volume can. It truly fascinated me how the ear, and the hearing aids, can work that way. To keep it simple, the hearing aids filter out the bad stuff and clarify the good stuff. The doctor was extremely patient with me while explaining it and didn't react like he thought I was stupid for asking the same questions repeatedly. By me needing it to be explained several times, it enabled my husband to thoroughly hear it. Obviously, I still didn't understand it very well or I could have explained it more effectively here.

The best news is that he is scheduled for a hearing aid evaluation and trial period in another 10 days. Hallelujah, there is hope!

I know that if his hearing can be clarified, it will immensely help with our ability to communicate. With FTD, frustrations quickly lead to blow ups. While I am having to repeat things over and over, I do snap at him. After three or four times, I often begin to forget what I was talking about anyway and decide it isn't important enough to continue to try to repeat it again.  He does not want me to give up because he truly wants to know what I have to say. Quick path to a blow up every time.

Communication between the person with FTD and the care partner is critical. We both must know what is happening with the other and keep on top of what the other needs. When the communication is jumbled, it creates many problems. Hopefully, for us, the hearing aid will be an aid to our communications.

If only there was a filter or aid for those of us with FTD, our lives might be a lot easier. We could filter out the distractions and distracting noises that overwhelm us and filter out the information we do not need.  Now, that would be awesome!

Okay, I Cannot Do It All

I have finally accepted that I cannot do it all. I have hired someone to come in and give my house a good cleaning once a month. I figure I can keep up with it in between with quick dustings. She is coming for the first time this week so now I have to work on accepting that no one else will do it the same way I do. I figure some of her ways will be not as good as mine but just as many will be better than how I do it.

This may seem like a trivial thing to be doing, but it is one of the most difficult things I have done since being diagnosed six or seven years ago. It is really tough for me to admit I need assistance. Admitting that seems to be like giving in to the disease, this disease I have been fighting tooth and nail. Even though I know I am being ridiculous, it's tough. I will have to stay out of her way, not to mention keeping my husband out of her way. I will admit, though, I already told them that no way will I make anyone clean my toilets. They found that quite funny and insisted they were used to it but I will be cleaning the toilets before she arrives just the same. I'm just not ready to take it that far.

Hopefully, taking this step will stop me from looking around and feeling helpless and worthless because I can't keep up with the house.

Next challenge is the yard. The friend who comes and trims my bushes and spreads mulch has committed to doing it, but is working long hours and has not made it yet. Every time I look out my sliding door to the deck and every time we pull into the driveway, I get extremely stressed that it hasn't been done yet. Yes, I could hire someone else, but he does it very well and very inexpensively.

I am dealing with the stress of this issue a different way. Every day for the past week, I went out and did a little trimming and weeding. It took me a full week because I can only manage an hour or so each day before my FTD body and brain give out. What I have done is trimming and weeding the area that I can see out my patio door to the deck and the area at the back of the driveway that we see when we pull in to it. I finished doing that yesterday so hopefully I can relax a little about that. I also keep up with my flower garden beside the deck so I can even go out onto the deck and relax for a while without stressing.

This leads me to another phenomenon. I am sensitive to most anything... laundry  products, soaps, lotions, perfumes and on and on. Oh, and poison ivy, definitely poison ivy. So far this year I have avoided that. (Insert Knock on Wood here.)  Mosquito bites have always been worse for me than most people. They stay puffed up, red and itchy for about a week. Now, as I have said before, FTD magnifies any problem or irritation for me. My brain reacts more strongly to distractions, irritants and anything that triggers a reaction in the brain. That is why I avoid crowds (meaning more than 2 or 3 people), loud noises, even action packed television shows.

I know all this, but I never thought about something as simple as mosquito bites. When I get them now, it is akin to a constant zapping of an electrical stimulation along with the itch. It is constant and my brain cannot ignore them and is in a constant agitated state. I hope this is an adequate definition of what it feels like. I have been driven several times to taking a mild sedative to calm down the nerves on my skin and in my brain. This is not something that would have occurred to me as a possibility and is new to me this year.

I accomplished something this week that really boosted my confidence in my ability to still do things. I saw a recipe online for Roasted Garlic Rosemary Artisan Bread. It had a lot of steps to the recipe but they were all simple ones. It is a no-knead bread which made it even easier. Even though it was a 24-hour process, it went very well and I got only one burn. That may be a record for the past couple years. It was also delicious. That first slice after it came out of the oven, slathered with butter, was scrumptious!

I will admit that I have not shared any with my husband. When I offered him a slice when it was fresh from the oven, he requested peanut butter and jelly on it. Did I mention it was roasted garlic/rosemary bread?  So, baking that bread also offered some comic relief to the day!  Oh, and please don't tell my husband I told you this part of the story. Hopefully when he reads this blog entry, he will get tired of it before the end...

Catastrophic Reactions

Today, a friend posted something from ThePurpleSherpa.org which is an excellent resource for caregivers. I am often encouraged by their website because they often include descriptions of why we with FTD react the way we do. It is heartening to know that people do understand what we are dealing with and why we are the way we are.

What she posted today was "Catastrophic reactions are emotional reactions or outbursts that are out of proportion with the stimulus. They are common among people who have dementia and are usually a sign that the person is overwhelmed, frightened, unable to cope with a change. To avoid them, speak calmly, avoid giving too many choices and identify what triggers your loved one."

They get it. They really, really get it! This is something I repeatedly try to explain to my caregiving husband, my family and friends. I wish I could say that I never have reactions like this, but they are almost a daily occurrence.  The most frequent cause for me is the one at a time principle that I am often preaching. If I am doing most anything at all, when you add something onto it, I go into overload. I will not respond properly to questions or understand what is being said. This has been getting progressively worse along with the disease itself. If I am trying to read, listening to music or most any thing that seems innocuous to observers, it is taking all of my concentration. If you break it down, not only am I doing the task I mention, but often also thinking about things. My reduced brain capacity is totally occupied because that is what it takes to do what I am doing. Trying to ask even a simple question takes the risk of me exploding.

As this quote says, it is because it is overwhelming, plain and simple. It can cause me to become frustrated or angry (at the world, usually not at the person asking). Part of the reason is that I know that I should be able to deal with it and cannot. Most often the frustration and anger is at myself and at the disease. It is important for everyone around me to know that when I do explode, it is not necessarily directed at them. It is just that the one more little thing being presented to me is the proverbial straw that broke the camel's back.  While the one interrupting me understands this in theory, it is difficult to remain calm when I am yelling, slamming things or worse.

It was a such coincidence that my friend posted this today because it is related to what I was going to write about today. I was planning on using this past week as a perfect example of me not being able to deal with more than one thing.

Three weeks ago, I had a medical test performed on me. That was a stress for that day, but the next 10 days waiting for the results were not because I knew it was a "just in case" test that was performed plus there was a very valid reason for the results taking so long. When I finally got the call with the results is when it started getting stressful. They wanted another test because something had shown up on the first go around. This was a little more than a week ago. They got me scheduled for the second test just two days after that call. I still wasn't concerned and was not feeling anxious  except for the disruption to my schedule by the unexpected medical visits. Any disruption in routine can be frustrating.

Unfortunately, that second test was inconclusive and I was told the next step was a small surgical procedure. This particular testing is only done one day out of every two weeks, but they had room for me in the testing day coming up in five days. On that day, I was home within six hours of the time I reported to the hospital. It was just stressful enough that the rest of that day plus the following day, I felt confused and had the feeling that something was wrong. Fortunately, my husband did understand that all the times I blew up at him was me being overwhelmed. We have made an effort since then to not add anything to my schedule and not tried to add any activities here at home.

We still have two days to wait for the results so we will continue this relaxed schedule.  My sister stepped up to the bat and took me in for the procedure because my husband was unable to do so. My wonderful friend also offered to take me to the appointment. It is awesome to have people to rely on. My sister also brought us a lot of food that we have supplemented with carry out food that my husband has gone out for so I was able to follow the 3 days of restrictions. Finally, today, I am cooking, but it is one of our favorite and easiest to prepare meals and one that is conducive to us doing it together. My husband has been perfectly following the advice given by ThePurpleSherpa.org even before I saw it. He has tried to keep our routine a little more relaxed than usual and has been understanding about the extra stress this has caused me.

It was such a coincidence that I saw this post shortly before I was going to write this. It made it a little long but, hopefully, made both the helpful advice and my actual events easier to understand. To the caregivers out there, please take this advice to heart. It is a necessary thing to understand if you want any calmness in your lives. It is also necessary for my husband and I to continue remembering as we go through the next few days.

I Wasn't Hiding a Thing

I promise to try to keep this as least a little upbeat.

I have been down in the dumps ever since returning from the conference and the extra few days playing tourist with my daughter. After a week or so, I realized it was due to the fact that I look forward to the conference for several months. Really, really look forward to it. Not only do I learn more about the disease, but I know I will be surrounded by people who all understand it. Adding in the mother/daughter time and it is as close to Nirvana as I seem to be able to reach with FTD.

I think it is pretty much normal to feel down after enjoying that time so much. The same thing happens to me for a week or two after Christmas. Same reasoning applies.

I did not realize just how miserable I was coming across until this morning. I truly believed I was doing a decent job of hiding it.  A couple hours ago, I pulled a package of hotdogs out of the freezer. I was determined to have picnic food even though it is cold and rainy. Have to have picnic food for the Memorial Day holiday. Not sure how it relates to honoring all who sacrificed their lives to defend our country, but tradition it has become.

For some reason, the old (very old) jingle for Armour hotdogs popped into my mind and I started singing it. It is pretty scary when you realize all the non-politically correct it would be today.  "Hot dogs, Armour hot dogs. What kind of kids eat Armour Hot Dogs? Fat kids, skinny kids, kids who climb on rocks. Tough kids, sissy kids, even kids with chicken post love hot dogs, Armour hot dogs, The dogs kids love to bite!"

See what I mean? No way it would play today! Back to my point, we did not have Armour hot dogs, just two different other brands. My husband and I cannot agree on the best hot dogs, so we have two brands when we have them. Personally, anyone who doesn't love Nathan's hotdogs doesn't have good taste, but I will leave that up to you.

The reason I have gone through this long hotdog story. When the song popped into my head, I had to sing it, with gusto! My husband looked at me like I was crazy. Well, there is that, but let's ignore that. He couldn't remember it and, I suspect, forgot that FTD has not affected my long term memory. After I had retreated back to my computer, he stuck his head in the door and said "It's good to hear you be upbeat, even if it was just for a hotdog jingle."

I thought I had been hiding how down I had been feeling. Virtual slap in the face, girl... you haven't hid it at all!

I have little reminder signs in a few strategic places in the house to remind me to smile and think of good things. I guess I need to start actually seeing the signs again. So, today, when I see the signs, I will think of the lunch out with my friend yesterday and the sinful dessert that I brought home and was able to make into 3 portions to spread out the yummy. It really was 4 portions, but I was extremely generous and let my husband have one.  I had the last one as my lunch today. You would have been selfish too if you had tasted this mini caramel cake.

Staying upbeat is going to be difficult this week. After an MRI two weeks ago then an ultrasound yesterday, on Wednesday I must have a biopsy. Then I have to wait an entire week for the results. Mentally, I am not nervous and don't really care. What could be worse than FTD, right? Yet, that tiny little bit of fear keeps sneaking in once in a while.

The good news is, they are doing the procedure at 8 a.m. I don't wake up until noon, even if I am out of bed hours before then. I'm hoping that I will sleep right through it! I know I won't, but a girl can dream!

Now, I ask you all if you remembered the jingle? Guess what? If you did, you are really, really old, right along with me! So, sing along with me: "Hotdogs, Armour hotdogs..."

Not So Amusing or Inspiring Today

I normally don't post an entry more than once a week and certainly not two days in a row, but today I must.

After a few days of forcing myself to do too much work, my FTD mind and body are telling me to stop for a while. It did this by awakening me this morning with a really bad FTD headache. After reading as much of the Sunday paper as I could, I retreated to my room and started scrolling through Facebook. Usually, this is a good idea... to catch up with what friends are doing and maybe to laugh at some funny memes. Just doing this can sometimes ease the discomfort.

In hindsight, I now know that today was not the day to do this. The first thing that upset me was the post from one of my fellow graduates from high school. Yesterday, she had posted a tattoo that she had gifted herself to celebrate her 65th birthday. Today, she posted the results of one of those mind-numbing quizzes that told her, along with the rest of the world, that she still acted like she was 26. It then went on inviting me to take the quiz, asking "How old do you really act?" Reality hit me in the face because I know that since FTD hit, I act much older than my 63 years.

There is no reason for her to not post these things. She was proud of them and darned well should be. She is one of the most active new "senior" citizens that I have ever known. She volunteers, travels and is just an all around nice person. The problem was that, feeling as exhausted and unable to do anything today as I do, it hit me hard. Her posts made me feel like I was missing things that I wish I could do. I actually cried and had a little pity party until I realized how silly I was being. Now I am just happy for her, as I should be.

Just when I was feeling better, I came across a meme posted by a friend that read "God will always lead you to be where you need to be. In His time not yours. Just trust and believe." Okay, I believe in God and talk to him everyday. I refuse to believe that God has lead me to have this horrid disease. I refuse to believe that He deliberately steals more of my functioning abilities every day. I refuse to believe that He is deliberately leading me to a slow and painful death that will take months or even years to finally end my life. If it was God's will that I should suffer from this disease, should I believe that he has prevented all the top scientists and doctors from finding treatment or a cure?

Yes, I know I over reacted once again. I totally understand the beautiful words she was sharing, hoping to encourage everyone reading it. Unfortunately, though, I believe that if I am to literally believe these words, I just might start doubting my faith. I kicked myself in the butt again for twisting this beautiful sentiment into something disturbing. I realized, once again, it was the fact that my body was rebelling against me today that had skewed my reasoning.

Then, came the final blow and this one has no justification for it being posted. A friend had shared the post of a comedian. In the video, a woman in what appeared to be a power wheelchair needed to get up a level in a busy place. I am imagining it was an airport or shopping mall. She attempted to ride an escalator, in her wheelchair, to the next level. You can imagine the horror of what happened. She, almost immediately, tipped over.  It appeared that she was unable to separate her from the wheelchair and was being hurt as she was being held down against the escalator by the chair. It was reassuring that others came to her aid. But... there was also a video running of a comedian. He just kept repeating that he would not comment on this, making it obvious how badly he would like to make fun of it but he was not going to do it. Wow, what a saint!

I cannot believe he posted this or that so many others have shared his post. Why do people not realize that those in wheelchairs are not necessarily burdened with "just" a physical impediment. I found it necessary to respond to this one. I wrote that I am also forced to use a cane or ride in a wheelchair. This is because my brain is unable to communicate with my legs when and how to move. FTD, right along with the walking issue, steals the ability to process circumstances and make proper decisions to stay safe.

I pray, to the God I still believe in, that I will never find myself in this woman's position. I also pray that if I do, that those witnessing the accident will see it as the dangerous result of a deteriorating brain, and not find it so amusing.

I will end my rant here. I usually like to conclude my blog entries with something amusing or at least light-hearted. Nothing to be found in this one provides me with anything for that today. Some times, the things people find hysterical or uplifting result in just the opposite.

Unpredictable Weather, Unpredictable Brain

There is an old joke that if you are in Pennsylvania and you don't like the weather, just wait ten minutes. It is not quite that bad, but our weather can indeed be unpredictable. We had three days of unusual temperatures over 90 degrees this week. We are not used to August weather in May! Now, today, it is down into the 50's with lower humidity.

This week, my days with FTD were just as unpredictable as Pennsylvania weather. The first two days of the heat wave, I did not have any energy or ambition. My head hurt with its usual FTD headache and I wanted to just sit and do what a do a lot of days, accomplishing absolutely nothing. Well, if you consider sitting on the couch looking out at nothing as something, then I do accomplish something. For once, my brain told me that it was stupid to do that because I know that if I was able to get something done, even if it was a small thing, I would feel better. My head would still hurt, but since it wasn't as bad as they sometimes are, I decided I could do it.

The first day, I had my husband take me out to buy some herbs and flowers, along with some potting soil. When we got back, I went out to the deck and planted them all in planters and pleaded to the chipmunk gods that they would not eat them all this year. I hid the basil from them because they seem to eat that the quickest. For three years now, knock on wood, they have not found it growing on the front porch. It didn't take long, an hour and a half including the trip to get everything. That was a good day and the deck was starting to look better. It was a good choice of things to do, it just seemed right on a beautiful "summer" day.

The next day, my friend drug me to a meeting of our church's women's group. It was an interesting program and I got to see a lot of women I had not seen for a while. It also did my heart good that they seemed to be sincerely happy to see me! When she brought me home, I was worn out. Socializing can can be exhausting to someone with FTD, especially in crowded and/or noisy surroundings. I was happy that I had made it through and had a good time.

When I arrived, my husband was just going out to dig up a couple small bushes I wanted gone. I decided to go out and keep him company, but then started cleaning out all the dying daffodil and tulip leaves from the flower beds. I ended up with a barrel full of them, but it was a much easier task than it sounds because they snapped right off. The sun had gone under some clouds and a soft breeze was blowing which made it almost enjoyable. I was back inside in less than an hour.

By taking my own advice and accomplishing something both of those days did bring me out of my funk and, thankfully, my FTD headache was easing a bit, So I decided I could do something again on what was the third day of the heatwave. I usually keep a squeeze bottle of balsamic glaze in my refrigerator. It is simple to make. I just pour in a bunch of (yes, this is an acceptable exact measurement) balsamic vinegar and a bit of sugar or agave syrup into a saucepan and simmer it until it reduces by about a half. I usually test its readiness by putting a drop on the cool countertop to see if it spreads or remains a bead. My FTD brain told me that since I am having to wipe the counter so often, just put that drop into the palm of my hand. What made sense to my FTD brain was downright stupid. Who would put syrup that had been boiling for a couple hours onto their skin?

I survived the burn with just a tiny blister, the syrup was ready and I poured it into a squeeze bottle. FTD brain says, "Give it a shake." Not a good idea at all. The hot syrup softened the plastic enough that some splashed out from under the cap, all over the wall, counter, everything on the counter and my shirt. As soon as I got all that cleaned up, I shoved that bottle right into the frig to stay. Good news is that a bottle usually lasts me six months so I should be safe for a while.

I had a little lunch and still had some energy. I went out onto the deck, armed with cleaning supplies and tackled cleaning the deck furniture. It was going well, I was getting soaked but it felt good since it was so hot. I had quite a few pieces scrubbed and placed where I wanted them, then started to tackle a pair of chairs that were really dirty. The dirt resisted even the soapy scrub brush, so I decided to use some full-strength cleaner. It worked pretty well, but the old FTD brain did not stop to think that I should recap the bottle. I knocked over and spilled half a bottle of Mr. Clean. I should have hosed it off, I know, but I didn't and I quickly slipped and fell. I imagine that it would have looked like slapstick comedy if anyone had seen. I wasn't hurt, probably just had a few new bruises but that seems to be the case everyday.

After that, I decided I had better not try anything else. Plus, doing just these two tasks had me exhausted. Have I mentioned lately how much FTD sucks? I went back into the house, sat down and stared out the window. At least this time, I had clean furniture to look at! I should also thank God for my husband. Come dinnertime, he suggested the leftover, cold tortellini salad from the refrigerator so I was safe from any more burns.

Today, our weather has changed again. The temperature is in the low 50's and the humidity is down from what it was as well.

Just like the weather, FTD can be totally unpredictable. We can go along for months and then it will suddenly take a down turn. I can be speaking very clearly for an entire day, yet the next day not be able to get words out without getting stuck on the first syllable until my brain realizes what is happening and I stop and start over. I can have good mobility for days, then all of a sudden my limbs stop getting the messages from my brain and I will end up standing with one foot up in the air until I focus hard or take my hand and give the leg a push. Some days, I can have a positive frame of mind and get some things done. Other days, it is back to the sofa and staring out the window. Unpredictable indeed!

Back to Reality

Life can be demoralizing sometimes. When you have been looking forward to something for a long time and it is over in one day, it can leave an empty space inside you. Take Christmas for example. We spend weeks preparing for the holiday. We decorate, we shop, we wrap, we bake and on and on. Then it is over, all those preparations and anticipation, all gone in one day.

It was like that this week. The annual AFTD Education Conference that I have been looking forward to for so long happened this past Friday. We actually started on Thursday night with a casual dinner for those of us with FTD and our caregivers. This night is so much fun. Get a bunch of us together when we don't have to worry about being judged by anyone and we really let our hair down. I started of by falling while trying to get into the door of the pub. That would not have been so bad, but once I got up and tried to navigate the low step again, I fell just like I did the first time! Now, that did become a bit embarrassing as a customer and an employee tried to come to my rescue. We didn't let it stop us. I was at the head of a group of about eight or ten of us. My daughter just grabbed my arm and told me to slow down and focus. We both focused and watched me lift and move my foot and I was in.

It got worse, once I was through the door, I asked, I think three times. how we get to the 2nd floor. Again, I hear, "Mom, we've got it." Duh, stairs or elevator. Go figure! The good part, no one laughed at me. Well, I was laughing at myself and my daughter was trying desperately to hold it in!

This wonderful dinner and chance to visit with so many of our FTD friends started the event off perfectly. The actual conference the next day was extremely well organized and informative. My friend from our online support group gave a wonderful welcoming speech to get things going. There was a lot of good news on things being done to help advance research into FTD and on things to assist those of us with the disease.

My daughter and I were one of three pairs of FTD'ers and their care partner. We rocked it! The session went very smoothly and was extremely well received.

Soon, the conference was over. I had learned a lot and met a lot of new friends. Yes, my daughter and I stayed a couple more days to see the sights and enjoy each other's company. But... the conference was over. This really hit as soon as my flight home was over. Just like my example of Christmas, it was quite a let down. I was back home to the same routine of every day life with FTD. No more being surrounded by people who truly understand what this life is like and by those who know much more about who generously shared their knowledge.

I was back to the people who don't understand or just don't care to understand. A couple days after returning, I went to our local hospital to have an MRI performed. This was for another part of my body, not my brain. I had been "pre-admitted" so all the questions had been asked and answered. Just as I gowned up, a young man steps up to the dressing room and starts asking me all the same questions. Obviously, he has been over the list many, many times. He was asking all the questions rapid-fire. I put my hand up and explained yet again, that I have dementia. I told him he needed to slow down and ask me one question at a time. He then started reading the questions at a very loud volume, but just as quickly. I stopped him again and said "I have dementia, I am not deaf!" He responded in anger and tried to tell me that was his normal way of talking. We eventually got through all the questions and he turned and started talking to one of the other techs... you guessed it, in a voice that was in a very normal tone and volume.

It is getting more and more difficult to put up with people like that. Especially with him being in the medical field, he should be able to understand. When I first asked him to slow down, I was very calm and polite. The second time, not so calm but still polite. If he continued to be the tech to work with me, I can bet that I would not have been so polite anymore.  Ah.... life in the real world of living with FTD.

But, there is good news!  Next year's conference is a month earlier, in March, in Chicago. I only have eleven months to wait!!!  I must take a second here to thank the AFTD for all the work organizing and putting on this conference. I learned a lot and had a really good time!