Saturday, July 29, 2017

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.

Sunday, July 23, 2017

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.

Saturday, July 15, 2017

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!!!




Sunday, July 9, 2017

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.


Sunday, July 2, 2017

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!"