Sunday, August 28, 2016

Conflicting Symptoms

FTD is a fickle disease. It is fickle in many ways which makes it worse. It also chooses when to make the symptoms flare up with no discretion. The symptoms often conflict which each other and I never know which one is going to win the fight to control me each day.

One of the first symptoms talked about with a diagnosis of FTD is apathy. Of course we all know that apathy is not caring, just plain not giving a damn about anything. Yep, I agree, definitely one of the first symptoms. It certainly was with me, at work, at home, everywhere and everything.

One of the other first symptoms is loss of energy. Things that I used to do in two hours now can take me two days. For someone who always took pride in how many things I was able to do, that is a cruel symptom to dump on someone. Because of the loss of energy and often feeling exhausted it is really difficult to accomplish much some days. It has been explained to me that your brain needs rest as much as your body does. That is the reason given that we seem to need a lot of sleep, much more than normally needed.

This inability to accomplish much is one of the most frustrating things I deal with each day. I have written here more times that people probably care to read, but here I go again. I have explained how I have to break up tasks into tiny tasks before I can do anything. I used to clean my house in one afternoon. I still clean something just about every afternoon, but it takes me two weeks to clean the house. I don't even touch the downstairs, which is primarily my husband's "man cave" and the laundry room. I gave up cleaning his room even before FTD because no matter how careful I was, he would always find something that I didn't return to the exact place he likes it. If he didn't keep a hundred things on his desk, it might be easier, but the easiest for me was to tell him to clean his own da**ed room.

As usual, I have digressed. It does take me two weeks to get the house cleaning and, you guessed it, it is time to start all over again. Fortunately there are no kids or pets in the house or it would be a disaster. This inability to get the housework done, not even mentioning any yard work, makes me beg for more apathy! I am always looking around the house and sometimes it seems that all I can see is dust and dirt. The windows need cleaned. I think some of them never got cleaned in the spring and here it is almost fall when I usually wash them all again. Little repairs need to be done. The carpets need to be cleaned but I don't feel up to preparing for the cleaner to come. It involves cleaning baseboards, deep vacuuming and moving furniture. I must break here and assure you that it is safe to eat in my house. The kitchen and bathrooms get cleaned more often than anything else does.

My problem is that I am apathetic about getting things done, but not enough that I don't care what it looks like! Don't get me wrong, my house is not dirty by many people's standards, but it is by my own standards. I don't think anyone comes into my house and says "Ewww, what a filthy house!" or at least I hope not! I see it though. I see the dust bunnies hiding behind the couches. I see the squirrel nose prints on the patio door. That one is okay with me though. Those little buggers entertain me all the time, as opposed to the dust bunnies who refuse to do a single trick.

The other FTD symptom that conflicts with my limited energy and ambition, along with my apathy, is the anger issue. I get so frustrated that things are not done, and that I cannot seem do them anymore, then I become very angry. People with FTD often lash out in anger and that is certainly true with me. I probably look and sound like a child throwing a temper tantrum. It is a vicious cycle. I throw the tantrum which wears me and saps my small amount of energy. I know I should feel terrible about throwing it, but then the apathy kicks in and I don't care. Of course, then I think that I should feel guilty because of the things I said or the things I threw or slammed down. I'm sure you get the picture. It is not a pretty one.

Thole tantrum issue leads me to one of my questions about FTD and the aphasia that comes with it. I often struggle to speak. I try to start speaking and either nothing comes out or I just keep repeating the first syllable over and over until I realize what I am doing. Then I stop talking for a minute or so and rephrase what I am saying. That trick has been working most of the time so far. Sometimes, though, the words just won't come out. Then I get so frustrated that I start to swear. Amazingly, the swear words come out just fine, are plenty loud and quite clear.  I often wonder if the neighbors hear me and what they think. It's okay though, the apathy kicks in and I don't care anymore.

Sunday, August 21, 2016

The Anger Issue

Anger is one of the symptoms of bvFTD. Even it wasn't, wouldn't you get angry because you are saddled with having FTD? There are different types of anger. The basic one is when you get angry at something and but are able to keep it to yourself. Next and worse is when you get angry at something and you verbally lash out about it. The worst one of all is when you get angry and lash out physically.

Fortunately, I have not experienced the worst one. I will admit, though, that there have been a few times when I was lucky that I could rein in that reaction. I experience the other types much more often than is healthy or that I want. I know that FTD is going to cause anger. I try to not reach the second step of verbally lashing out. I wish I could say I succeed. I rarely succeed.

I used to laugh at my husband for arguing with the television. Now, I do it worse than he ever did. Some days I must simply turn off the television or change the channel. The news channels are the worst for me. Oh, I also yell at the newspaper... not sure it hears me though. Of course neither does the television. I waste way too much of my limited energy on anger some days.

Worse than sitting there yelling at inanimate objects is when I snap at people. It can be at people I don't know (especially at the grocery store where I am over-stimulated the entire time), as well as at people I love. Think about how many times a day you look at someone or listen to someone and think "what an idiot" and keep on going. It's that keep on going part that I lack. I think it, I say it. I think you have done something in an incorrect way, I say it.

There is one situation where I often act out inappropriately. If I am trying to do something such as reading, watching TV, cooking, coloring pictures or anything that requires any brain power at all, I cannot handle any other stimulation. I can have soft music in the background because I don't have to pay attention to that. What drives me over the edge is other types of noise. These can include someone eating something crunchy, clunking around in the kitchen and the list goes on and on and on.

One habit of my husband's is often unbearable to me. Since the invention of DVR's we have recorded all the TV shows and sports shows so we can watch them at our convenience and fast forward through the commercials. That works for me. What doesn't work is when he is watching a sporting event and fast forwards through until he sees something he deems worth watching. This habit causes unbearable over-stimulation and if I don't walk away and go to my room soon enough, I snap. The absolute worst is during a baseball game. I have always loved baseball and still find it relaxing to watch. I often joke that it is my favorite sport because it is slow enough I can follow along. I cannot enjoy watching it in bits and pieces.

All of this is reiterating things that I know I have written about before, but for a good reason. People try to understand what I am talking about when I first explain this FTD symptom. Sometimes I think they truly do understand and other times I can tell they are just agreeing to shut me up. The problem comes when these people may "get it" but don't seem to store it away. I find myself having to re-explain the condition quite often, at least as often as every time I lash out.

I do realize it is a difficult condition to grasp. "What do you mean you can't help it?" or "Of course you can stop yourself." How I wish that were true. After I lash out or walk away in anger, I know fairly quickly that I have acted inappropriately. I regret what I did or said, but I also know that it was the FTD that caused it. FTD can change your entire personality and it is horrible realizing that you hurt the other person or people involved.

I try to, after I settle down, go back to apologize and explain what happened and how it built up to cause my reaction. That is when I need the person to actually pause and think, to realize that I would not have done this pre-FTD and to understand. It doesn't help when they do not really listen to my explanation, just shrug it off and say it is okay. No, it is not okay. I hate it and often hate myself because of the way I react. What I need is for someone to say "I understand" and truly mean it.

What it boils down to is that while I do need what most call a caregiver, it is really a care partner that I need. I need someone who can support me, to listen to my frustrations, to forgive me when I offend and to understand when I need assistance and when I do not. A care partner reads about FTD but doesn't stop there. A care partner remembers what they have read and heard about FTD. A care partner realizes that FTD is not going to go away and that it is not something I chose to have or did anything to cause it to happen to me. A care partner learns to shrug off the bad and to seek out the good in me. There is still a lot of good in me. It is what I tell myself when I look in the mirror and cringe. I tell myself that I am still in there somewhere.

Sunday, August 14, 2016

Can't Keep Up Anymore

I have tried many times, even in this blog, to explain to someone how a task like fixing a simple dinner is, for those of us with FTD, not one task at all. One step of that task is, in reality to us, a task unto itself. There are just so many tasks our brain can handle in one day before we crash.

I have tried several different scenarios to describe this to family and friends but it just doesn't seem to come across right with the way I explain it. It is like we have a set amount of energy in our energy bank each day. The more tasks we attempt, the quicker we run out. Tasks that require several steps, like the example I usually give of baking a cake or cooking a meal, gobble up our energy at a really fast pace. A friend from our private online support group just wrote an excellent piece explaining this. Hopefully, it will get published often enough to educate people.

I intentionally started this blog entry by repeating this frustration of trying to explain how quickly I get worn out. Unfortunately, it doesn't ever seem to get any better, it just slowly worsens.

This problem has made me realize that I just cannot take care of our home anymore. Between my limitations from FTD and my husband's limitations from his various issues, it has just become too much. He tries to keep up with the yard work but it is never ending. He is having to do the yard work that he has always done, plus having to pick up a lot that I have always done. We have a decent sized lot which demands a lot of work, plus it is hilly and uneven in many areas due to a lot of rocks in the non-grassy areas. With my tendency to fall all the time, I try to do some of the work while using my cane, but it is pretty difficult to do yard work one-handed. My husband has nerve damage in his feet and lower legs so that he has less than 10% nerve function. He cannot feel uneven surfaces which creates a hazard for him as well.

It is not just the outside work, it is the housework as well. My husband is a wonderful man. He does the laundry so I don't have to go up and down the stairs or try to figure out how to operate our new washer. It's not like it used to be where we would turn a dial and pull it out to turn it on. Plus, I am just short enough that I cannot reach all the way into the washer. I didn't do this on purpose when we bought the new washer, honest!

He also takes care of running the dishwasher and unloading it. I think he likes things being put back where they belong which is a problem for me if I empty it. I never have to worry about an empty roll of paper towels or an empty box of tissues. As soon as they are empty, they magically are replaced. He does what he feels capable of around the house.

On the other hand, I cannot keep up with the rest of the housework anymore. I have to break cleaning the house into 8 or 10 projects and can only do one a day. Cleaning bathrooms one day, kitchen another, kitchen floor a separate one, on and on. I must do house cleaning every day to try to keep up with it. Doesn't that just sound like fun? It's not, believe me. Each task is a challenge, trying to remember how I do each thing.

One day last week, I decided to vacuum. My husband usually does that for me after I beg enough times. I swear he thinks if you vacuum twice a year that is enough. I had an unbelievable amount of trouble vacuuming. It probably could have won a prize on that funny video show. I cannot tell you how many times I found myself totally tangled up with the cord. I must have bumped into every piece of furniture and doorway at least twice, judging from the number of new bruises I had the next morning. I fell twice while wrestling with the vacuum. Thankfully, both times were when I was next to a bed. I pulled a couple muscles and made my back rather sore, but no real damage. Plus I didn't break anything, so I was pretty successful!

When we moved ten years ago after my husband retired, we downsized. Our house is the smallest we have ever lived in. Just 3 bedrooms, 2 baths, living room, dining room and kitchen with a small family room at the end of the kitchen, where we spend most of our time. Then downstairs in the finished basement, my husband has his man cave and the laundry room. Rooms are not big, it is a small house. I would have given up long ago if we were still living in any of our previous houses.

I guess we can basically take care of it, but we cannot keep it up to my standards of appearance. Plus the task of doing it has become too overwhelming for me and is a 24/7 frustration. I have the solution. I want to sell and move the part of the country where our daughter lives where she would be able to help us. Plus there would never be snow to shovel!

If you have any ideas on how I can convince my husband to do this, I would surely appreciate you letting me know!

Sunday, August 7, 2016

Cookie Monster

After two days of barely eating anything, today seems like a good time to address dietary issues and there are a lot of tjem!

First, I will address the two days of barely eating anything. This happens sometimes, don't know why, don't know when, it just does. All of a sudden, I will look at food and not only does it not appeal to me, but my stomach will actually feel queasy. It is never that I am sick or have a stomach bug, it is simply that food has lost its appeal. Actually, I wish it would happen for longer periods of time as long as I could force myself to eat just enough to be nutritionally sound. I could actually lose weight.

This total rejection of food usually only lasts two or three days. My husband will practically force-feed me. He will mention any food in the house or from a nearby restaurant. Last night, he actually got me to eat three chicken mcnuggets. This is not something I would normally eat, but I think my getting tired of him trying made me give in. Today, it was a slice of cheese.

I tend to drink more coffee during these periods and I always put half and half into my coffee, so surely I can consider that to have nutritional value. It covers dairy and fat, right? Then, you add in the major food group of caffeine, and I have it covered.

The only thing that appeals to me during these days of finding food abhorrent, is cookies. Just about any sweet thing is acceptable, but mostly cookies. It is difficult to resist eating too many, but sometimes my knowledge that if I overdose on sweets, I will feel sick for the next twelve hours or so will make me stop.

That leads me into another food issue... carbohydrates! From what I hear from others with FTD, I am not alone in the craving for them. Before FTD, I was not one to crave sweets. If anything, I craved salty snacks. Not that I didn't eat sweets, I surely did, but I didn't overdose on them. Since FTD, sweets are a major craving. Hide the cookies! The cookies are the absolute worst. I don't care if they are homemade or prepackaged. During the holiday season, I make close to a hundred dozen cookies. Most are for family and friends who have all come to expect them from me. It used to be that I would eat maybe a handful of these cookies through the entire baking process and holiday entertaining. They were delicious and fancy cookies, but I was okay with that. I think it was that after making so many, they lost their appeal. Not so anymore!

Sometimes it doesn't have to be sweets. Give me a plate with a steak and potato, I will eat the potato first. Carbohydrates, in moderation, can be a good thing. When that is all you want to eat, that is a bad thing.

In one way, the sweets do some good. One of the most horrible problems with FTD is the swallowing difficulties it causes. I will be eating, then all of a sudden my throat refuses to swallow. This leads to disgusting meal times as I cough, gag and often need to spit out the food. Swallowing difficulties lead into worse problems. It gets to the point that someone with FTD may aspirate their food, into the lungs, and cause lung infections. Often times, liquids become a problem to swallow and the liquids need to be thickened in order to be swallowed. Fortunately, that hasn't happened to me yet because that just frightens me.

The link I make between carbohydrates, sweets and swallowing is a strange one. I don't seem to have difficulty swallowing the tasty treats. I cannot recall choking on them even once. The only idea I can come up with is that possibly the sweet foods produce more saliva. I have no idea if there is any validity to this, but it is the only thing that I came up with..

The swallowing issues can be many. The aspiration of food is probably the worst, right along with not being able to get enough nutrition. Yet the indignity of it is also horrid. I am still able to go out to restaurants occasionally, but am in constant fear this will happen. When I am out, I am extremely careful and take tiny bites so that if it suddenly happens, I don't have a huge mouthful of food. I will also stop eating and wrap up the rest of my meal. It is not just in a restaurant setting, it is in any setting where others are there to witness it happening. If it is repulsive to me, I can only imagine how disgusting and frightening it is to observe.

Many doctors will refer their patients with swallowing issues to a speech therapist. From all those with FTD who experience the swallowing problems and have seen a speech therapist, it did not help. Sometimes a little improvement at first, but nothing lasting. I get so tired of seeing medical professionals, that I have resisted trying this. As long as I can continue to cope, I am satisfied.

I apologize for getting into such an unappealing subject, but sometimes we have to keep it real. In the meantime, do you have any extra cookies?