We Are Someone, Not Just Someone With FTD

Last week, things had calmed down just enough in  my life that I was able to pay more attention to all the others out there with FTD. I don't know if it was just my perception, but it seemed there were a lot  more complaints about rifts between the person with FTD and their caregiver. This was coming from both sides of the equation. Since I was also having more and more issues with this same problem, I decided to do some research to perhaps come up with some suggestions on how to deal with this issue and to try to translate between those with FTD and their caregivers. 

I did a Google search on "FTD caregiver versus patient,"  "FTD caring for loved one" and several other variations. I was greatly saddened, that the only two things that came up that fit the criteria were my blog entry from November 18, 2017, "We Don't Do It on Purpose, Truly!"  The second one was the publication I put together, "Coping with FTD".  Link for that is https://www.theaftd.org/wp-content/uploads/2016/12/Coping-With-FTD.pdf  Maybe I should have felt proud that the only two from the FTD point of view were mine, but all I felt was sad.

Truly, that is all I came up with, everything else was slanted toward the caregiver. I readily admit that caring for someone with FTD can be a constant challenge and a difficult road to haul. What needs to be remembered though is that having FTD is just as difficult.

Most of us with FTD start out with no one believing there is anything wrong with us. Almost all of us go through several attempts at finding a doctor who knows enough about FTD to diagnose the disease. At least for me, the diagnosis was a relief... "See there really is something wrong with me?"  Isn't there a joke about that being carved in someone's tombstone? Then, reality hits. " Not only is this no treatment or cure for this disease, but it is going to kill me!"

Having this disease is a constant battle for the person diagnosed. Often depression hits, making us come across as angry. I like to say "Wouldn't you be horribly depressed and angry if you had FTD? Fortunately, depression can be addressed. First, though, it is often the caregiver who has to realize that depression is part of the problem. It can make many of the symptoms of FTD become worse... the anger, the withdrawal, the disinterest in most everything and the overall sadness. The anger can even worsen aggression, though that can be a separate symptom of FTD as well and should not be ignored. 

Depression can be successfully treated and most aggression can be as well. You can schedule a visit to the neurologist or psychiatrist who diagnosed the FTD, or even their family doctor. They are all trained to treat depression. My primary care doctor treats my depression which save me a lot of trouble and the expense of seeing a specialist. It may take some trial and error to come up with the right drug or the right combination to ease the depression and the difficulty of its symptoms. These are not symptoms to be treated as the "s/he is just mean" or "s/he just won't do anything."

Any new symptoms, whether physical or emotional, should be addressed with a doctor. The doctor should also be at least familiar with FTD, if not an expert. While there is no treatment for FTD, there are treatments for its symptoms.

The biggest issue with FTD can be the relationship between the one with FTD and the caregiver. Usually, the caregiver is a family member, most often the spouse. I beg of you.  Please remember this is someone you love, or loved, enough to marry. I understand the strain of being the caregiver. Finances often become a huge issue, the workload grows enormously, the energy involved in those as well as keeping the one with FTD safe all take their toll on the caregiver and on the relationship.

Everyone needs love in their life, even those with FTD. A loving relationship seems to make the FTD'ers life more secure. So, how do you do that? It's pretty darned difficult to maintain your loving relationship. It will probably never be like it was pre-FTD. I'm not suggesting that you need to continue your active sex life, if you had one.  On the other hand, if you still desire that, go for it! If not, remember hugs, kisses and saying "I love you." I'm sorry to say this, but if you find that you no longer love the one you are caring for, try to fake it, just a little at least. Just like a caregiver must sometimes tell little "fiblets" to get their cooperation, the little fiblet of still loving can make a lot of difference, even in the caregiver's state of mind.

Loving gestures provide more security and comfort than most anything else I can think of. Sometimes, those gestures may be rejected, but don't give up. When I am feeling tired, frustrated or angry at a circumstance, I reject all of them. I just cannot handle them. If someone touches me at a time like that, the touch, no matter how loving, my brain actually feels it as pain. If physical touching is not possible, a simple "I love you, we can talk about this as soon as you are able." Once I calm down, I often need to know I am still loved.

Do not assume that your loved one is not doing chores because they are lazy or just don't care. It is more likely that they cannot do them. If we try and it doesn't work for us, it leads to more frustration and we give up on trying. For example, if we are attempting something like folding the laundry, we have to remember how the finished product should look and try to remember how to arrive at that point. If we have folded it to the best of our ability (which is probably no where close to how you want it) and you say something like "You know the towels should be folded lengthwise first" it can be totally defeating. Most likely, we will have no interest in trying again.

Even if we accomplish something simple, like taking out the trash or bringing in the newspaper, it is good to thank us at least occasionally. When I say thanking us, I mean a deliberate, look them in the eye and say something like "Thank you, that helps me a lot." If I go through a day where I feel like I have accomplished absolutely nothing, I drop right back into that depressive mood. Everyone needs to know they are wanted and that they are able to contribute something to the world. I know I go through times when I think I am just wasting oxygen and couch space that someone else needs more.

It is so maddening to me when I hear or see a caregiver unfairly criticizing someone with FTD, saying the "won't" or "don't" or other negative words. The truth is more likely that they "can't" or the "don't remember how" or "don't understand" that needs to be done or done a different way."

When I see a caregiver treating their loved one like a child, I become furious! Yes, I understand that you need to address situations with the same process you would with a child. I have even explained that in a blog or two. You need to think of it that way. It does not, though, need to be done in a belittling fashion. Break down what you want to get across into tiny bits and use simpler words if necessary, but don't talk to them like you would a child or in a condescending manner. 

In the same vein, when you are out somewhere with your loved one, they might become confused, get in someone's way or in another way cause an awkward moment. Please don't say things like "Oh, he has dementia." or "Oh, please forgive her, she did that because of her dementia." We are people, we are not our disease. Address the incident as simply as possible. If someone is bumped by the cart the FTD'er is pushing, try something like "Oh, I am so sorry, we will get out of your way." To act flustered and upset with your loved one and keep asking "are you alright," "did he hurt you," can actually escalate things. The result may cause the FTD'er to feel embarrassed or that they are a bad person, worthless and should not even try to go anywhere. 

The only thing I think is worse than speaking to someone with FTD as you would a child or even a pet, is to not talk to them at all. Even those of us who lose our ability to speak need communication and a sense of belonging. There is nothing more hurtful than to lived "around" not lived with. In other words, forgetting that we still have things to contribute and our brains still work in some ways. By the way, did you know that studies have shown that FTD seems to affect those of higher intelligence? It is horribly defeating to realize that while you were a scientist/doctor/CEO/teacher/etc., you now instead have to wear diapers or need to be shown how to fold a freaking towel. 

Please remember the "one thing at a time rule" that I am always talking about. If you present more than one thing to me, or if you tell me only one thing but there are distractions around, I promise you that I will not understand a bit of what you are saying. I might say "okay" or something like that, but I do that to end the talking not to say I understand. This is something that has continued to worsen since diagnosis, at least for me. I am at a point now, that if someone does this, I enter a black hole. I literally see nothing but blackness that is spinning and hear nothing except possibly Charlie Brown speak, "Wah, wah, wah, wah, wah." 

Sometimes, when you say something, a person with FTD may end up looking at you with a blank stare. Do not immediately think we are not listening. If you say a word I don't understand, I can't understand the entire statement because my brain is trying to figure out what that word is. For example, if you were to tell me, "I need a wrench, go downstairs and get one for me." If I freeze at the word "wrench" because I can't immediately remember what that is or looks like, I don't hear the rest of the sentence. The most intelligent answer I could hope to give if I do remember it is a tool, it's going to be "What about a wrench?" It's not because I didn't listen, it's because I couldn't listen past the word that stumped me.

The last thing that upsets me is being treated like an invalid. If I am walking fine with my cane, I don't need you to hold onto my other arm or hand. That actually makes things worse because I now have to worry about two things, using my cane correctly and balancing with you holding on to me. I cannot always walk the same straight line or the consistent pace that you are walking so that can throw me off as well. If you want to help, walk next to me so that I can take your arm if I start losing my balance or stumbling. It also helps if you walk a half step in front of me and never behind me. FTD has given me tunnel vision, as it can, so I cannot see you unless you are ahead of me.

I don't even pretend to speak for everyone with FTD or to every caregiver out there. We each have our own set of problems, whether the one with the disease or the person caring for them. There are probably difficulties that caregivers encounter that I have not even thought about. All the things I have mentioned may not develop the same way with everyone who has FTD, but I have tried to give examples that you can pull from.

What I ask is that we are treated with dignity, not put down, not ignored, not yelled at when we do something wrong and not belittled or told that we are stupid, worthless or a huge inconvenience. 

Caregivers cannot be perfect. No one can. They cannot help but lose their temper or get frustrated and end up yelling. It can't be helped when occasions occur such as, the caregiver may be struggling to figure out how to deal with something and keep getting interrupted by questions and complaints. Wait a minute? Do some of these things ring a bell? Yep! We are all in the same boat. We all get angry at the disease. We all get frustrated because our lives have been uprooted. We all yell from time to time. 

It is not probably not accurate to compare someone with the disease versus someone trying to care for that person. One is never easier than the other. A caregiver may hate to have to change their loved one's diaper/pull-ups. Guess what? The one with FTD hates that they have to wear them just as much. Both sides are beyond difficult, if that is possible, and sometimes seem impossible.


As I have mentioned numerous times, I am in the unique position of being a person with dementia and also acting as the caregiver for another with dementia. FTD caring for Alzheimer's. The only good thing about the situation that I can think about it is that when I am making mistakes as a caregiver, I recognize them and vice versa. I do make mistakes in both roles. The frustration of having FTD makes it even more difficult for me to remain calm as a caregiver. Fprtunately, his disease is progressing much more rapidly than my FTD which has become a blessing. I don't mean that in a negative way. I say it because I am still able to care for him but he is no longer able to care for me. I do hope it remains that way.




  

FTD Does Not Mean I Cannot Stand Up for Myself

I apologize for beating a dead horse, but dealing with my aunt and uncle's estate has continued to consume all my time and, even more importantly, my energy. I am strongly hoping that once the entire estate is settled late in August, that I will be able to set it aside and, while I will still be mourning, stop dwelling on it constantly.

A few years ago, my cousin died suddenly in a vehicle crash. My aunt, whom I was caring for due to her dementia, could  not stop mourning because she would forget and every day ask "Is Charlie dead?" Then she would start crying. Needless to say, it broke my heart every time. I know I have talked about her situation many times, so if I have done so in this blog, I apologize. I tell it again because this is often the case with FTD. This is why, when asked, I tell caregivers to follow their gut as to whether to tell an FTD'er about a death. If it someone local who they see often, I believe it is necessary to inform them and, if possible, include them in the funeral to make it real to them. On the other hand, if it is someone they rarely see, I most often suggest not telling them. If, later, they ask about the person, say something like "Oh, he has been so busy lately. I'm sure he will come visit when he can."  Like I said, follow the gut, since every case is different. Let no one else make you feel guilty whichever way you decide.

Now, I understand her circumstance much better. Nearly every day, I will think "I should just call Uncle Dick and ask him."  Sometimes this happens even while I am sorting through his things. I will think that I should call him and ask if I should keep something. I wish it could work that way. I am pretty sure that I have mentioned how he and my aunt stepped up when my father committed suicide about 25 years ago. He became my father figure, adviser and supporter. They both stepped up and became the best grandparents (and aunt and uncle) to my daughter.  This is part of why I loved them so much.

On the other hand, my dad's other brother, has been the opposite. He and his wife believed if they sent me a Christmas card, that was good enough. He called me this past week wanting something my aunt and uncle had that has huge sentimental value to me. The executor and I had actually split this (a set of china) in half which gave us each four place setting. The uncle was furious and wanted me to give him my half "because they should stay together or it will destroy their monetary value." Monetary value??? 

I wish that had been the end of it but then he said something like "You have dementia anyway, why should you have them?" I actually think his words might have been "health issues" but, of course, I heard "dementia." If you read my blog regularly, you can imagine how this went over with me. If he listened, he should have a much better understanding about FTD now, but I'm sure all he got out of it was that I was stubborn.  That's just fine with me. I may not get that annual Christmas card anymore, but I can live without it. It was always so sentimental anyway as it was usually signed "Fondly, Uncle xx and Aunt xx." 

I guess I should have known how much sentimentality they have.

My husband was listening to my side of the conversation and was afraid of how I might react. I was fine. I was extremely angry, but I was able to keep it under control. I was proud of myself that I had also kept it under control while talking to him. I only remember stuttering over a word one time. I spoke loudly, but was not shouting. I will admit to swearing at him one time. My husband, as I have talked about, has Alzheimer's Disease, but even he realized how hurt I was by all of this and tried his best to comfort me.

As a side note, my aunt and uncle had a statue of St. Francis in their garden. It had been carved with a chain saw out of a log. It is extremely heavy. It was placed in their garden using a small crane. This greedy uncle announced to the attorney (executor) that he wanted it. I had not considered taking it because of the difficulty they had moving it, plus knowing that when we leave this house, I would have to leave it behind. When the attorney told me the uncle wanted it, I could not stop laughing. He and my aunt live in a condo/apartment on an upper floor. I guess he wanted one more thing for the "monetary" value.

Meanwhile, I am sitting here typing, dressed in one of my uncle's favorite t-shirts that I rescued from the rag bag and a ball cap he had kept that was from the National Forest where my dad volunteered in the summers. I have been wearing his t-shirt for two weeks, ever since I brought it home. No, I haven't washed it. I do sniff it once in a while and it is still okay and I change shirts if I am going out. I guess somewhere in there, between my greedy uncle's lack of sentimentality and my own, there must be a happy medium. 

I still see the psychologist who has been helping me since my diagnosis, but only once a month now. I will tell you, she surely has been earning her money the past couple months. My next appointment isn't for 10 days, but if my greedy uncle or someone representing him calls again, I will be needing an emergency appointment.  While I am so proud of myself for the way I was able to handle the situation, I feel as though another one may not go as well.

In the meantime, going through a multitude of boxes containing things from their home, I struggle over what to keep, what to offer to other family members and what to toss. I try to think about whether my daughter will want them when I am gone, but it's really tough.  How do I get rid of the love letters my uncle wrote to my aunt when they were dating and getting ready to marry.  How do I get rid of all the pictures and notes to my aunt from her elementary school students? 

I have actually adopted a plan that I often recommend to others. I am saving the things that I know I must absolutely keep. I am also keeping the things I am not sure about. Those are being stored separately and my plan is to go through them again in six months, then in one year. If they survive those two additional purges, they are meant to be kept.  I have been doing that with things of my own that I tend to save. I make a pile, then go through it once a week. Usually, I end up asking myself why in the world I kept it.

On a similar note, in an effort to curb my impulse buying, which is usually online shopping since I avoid stores, I have taken a similar approach. I will bookmark it online, or leave it in the "cart." If catalog shopping, I mark the page. I then go back a couple days later to make sure I still want/need it. More often than not, I don't buy it. This has saved me a lot of money. It has also caused a lot of bewilderment as to why I thought I need this! I still do some impulse buying, but have been able to keep it at a minimum now.

So, bottom line is that I am feeling proud of myself for the way I handled this greedy uncle situation. I am proud of myself for the way I am sorting through all these boxes of "stuff" that no one else wanted to deal with. I must admit that finding those love letters is worth sorting through all of the rest and will never be thrown out, at least not by me. I know my daughter will preserve them as well.

I promised myself I would only go through two boxes a day. That is what I advise others to do, to keep it simple so that it does not become overwhelming.  No, I have not been successful in that, but do manage stop when I am totally exhausted. I finally admitted that I need to slow down the process and am not going near any of the boxes today. My back thanks me.

From all of this, I guess what I would pass on is to stand your ground. Just because we have FTD does not make us any less deserving. Even if FTD takes over and we start saying inappropriate things, the message is still in there somewhere. If someone can't sort through the cuss words and get the gist of what we are saying, they probably aren't worth our effort anyway.

On the other hand, to the caregivers, family members and friends, we have FTD but we are not deaf. If you are discussing things that involve us, thinking we can't hear, we do hear you. Secondly, if we are talking about something, please do not dismiss what we are saying. We just might have some words of wisdom in us.  Don't forget, "I have FTD, I don't have STUPID!" Hmm... perhaps this paragraph will lead into my next blog entry.

Loss of Executive Functioning Matters

One of the earliest things I learned about after being diagnosed with FTD was the "Loss of Executive Functioning." I had no idea what "executive function" was so I just brushed it aside. After all, I was not an executive. I did not have to make big decisions. I sure was wrong. The term is not self-explanatory when it relates to FTD. Perhaps we should change it to "can't figure out anything." It is important to realize that everything we do usually involves executive functioning.

This past week I learned, or rather relearned, a few things about dealing with FTD and executive functioning:

     I cannot do it all.

     I do not have to do it all.

     It is okay to ask for help.

     It is important to break down large tasks into tiny ones.

     Discussing decision-making issues with others lightens the load.

     My brother in law and sister love me a whole lot (okay, no executive functioning here)

I have been trying to get away from personal stories in my blog entries, but this past week was so full of examples of FTD that I cannot resist, so here goes. I was extremely close with my aunt and uncle who both passed away in the last few months. Last week, their attorney called me and told me she was planning on having an estate sale on the weekend. She suggested that I come up before Friday because she knew there were things that I would treasure.

Fortunately, my new brother in law loves me and agreed to miss a day's work and do the driving because I cannot. That was the only thing that was resolved quickly. The next few days became one of the best examples of loss of executive functioning that I have ever experienced. Deciding whether to rent a truck or a trailer was a two-day effort. I finally decided to rent the truck for more than $300. Meanwhile, my sister has a beast of an SUV, with a V8 engine and a towing package. Duh! I asked if we could just use that instead of a truck. After all, it would be a lot more comfortable and I rented a 6x12 box trailer for $40. 

One of the problems I have that also involves executive function is making financial decisions. I was going to waste $300 when the $40 solution had been right in front of me all along. I won't even talk about how long it took me to decide what time we should leave!

We arrived safely at our destination, a 2 1/2 hour drive, right on time. That was the end of calm until the trailer was packed and we headed home.  There were so many decisions for me to make on what to take and what to leave, that I developed a whopper of an FTD headache. I finally decided to look at everything with my heart, not my head. I ended up with a lot of little things that will continue to bring back memories that I will cherish forever. These things would have most likely sold for less than a quarter at the estate sale, but will be forever priceless to me.

After deciding what, I had to decide how. I needed to pack everything. Fortunately my brain did work a little and I had come prepared with boxes and bubble wrap. Once I finished packing, I realized the trailer was not even 1/4 loaded. The attorney's husband was there since he is doing the bulk of the work for the sale. I thought he was going to  help us load but I sure thought wrong. My poor brother in law lloaded the entire trailer himself. By the way, do you have any idea how much space a pair of elk antlers takes? At least they don't weigh much!

The three of us were totally exhausted. Because of this, we started snapping at each other and the drive home was just a tad tense. Okay, a lot tense, but we made it and we all still love each other. I should also say that I brought home a few small pieces of antique furniture and other things. My decision making was not so bad that all I brought back only a box full of trinkets!

So, what could I have done differently? Looking back, all the decisions should have been much easier. My usual way of coping with larger endeavors or complicated tasks is to start with a list of things I need to do and then break each item on that list into small tasks. This is a decision I often suggest to other with FTD, but failed to remember to do it myself. It never should have taken two days to decide the truck or trailer issue. If I had made a list of the advantages/disadvantages of each, I could have taken care of the entire transportation decision in an hour or two instead.

I also should have remembered that I don't have to do everything myself. If I had discussed the truck/trailer dilemma with my sister or brother in law, they would have helped me come up with her SUV and a trailer immediately. That is a lesson I struggle with. I hate to ask for help!  This is not a good thing for someone with FTD. Asking for help is a really good thing for someone with FTD. Now, if only I remember that the next time.

Actually, I finally did. I started going through all the stuff that was now occupying the entire empty side of our garage. The attorney had insisted I leave all the clothes that were in a small dresser so that I could try them on and keep them or donate them once I was home. I did that yesterday and found a huge stack of brand new, top name brand, items that still sported the tags and had never been worn. I immediately started to stress, knowing that the wise thing to do would be to see them on ebay or our local online sale site. I sat there for a few minutes, head in hand, feeling overwhelmed. I actually said to myself "You don't have to do it all!" I called a friend. I knew her son's wife had started selling things on ebay to make a little extra money for their family. I am giving the whole stack to her. She can sell them and I won't have to worry. I feel better about it anyway, knowing that they will benefit from it. 

If only I had remembered that I don't have to do it all BEFORE I insisted on bringing home thousands and thousands and thousands of slides and pictures. I volunteered to go through all of them, sort them and decide who would most likely want them the most. My FTD had better slow down because I figure it is already going to take me five years to finish! I knew that f I did not do it, all of them would have gone in the trash because no one else was willing.

Bottom line, to me, is that, yes, FTD sucks, but loss of executive functioning sucks as just as much!

 

 

FTD Stages and Some Rambling Thoughts

Lately, I have seen a large number of questions about the "stages" of FTD. This is a difficult question to answer since every case of FTD is so different from the next, but I was determined to address it. I pulled my file on the subject and searched for more in-depth info online so that I could pull it all together. There, I found a couple articles that explained it a much better than I could. So, instead of writing it, I am giving you two links to sites that I found that were interesting and explained it well: 

https://www.dementiaaide.com/blogs/tips-for-dementia/fronto-temporal-dementia-guide#stages

http://ftdcaregiving.org/documents/ProgressionFTD_CaregivingPerspective.pdf


Since I don't need to write more about that subject, I am left with some rambling thoughts.


 ⧫  I often talk about the AFTD (Association for Frontotemporal Degeneration)(website:  www.theaftd.org  or helpline at 866-507-7222). Their website was totally redesigned a few months ago so if you have not visited it lately, I suggest that you do. There is a ton of information available on there. You still have to go through many layers in order to see it all, but it is much easier to find your way through now.

The AFTD provides a lot of services for those of us with FTD. They have grants that assist not only those of us with FTD, but also the caregivers. They are also one of the best sources for information about FTD. I had the opportunity to contact them this past week when I realized that someone with FTD, whom I have come to consider a great friend, could probably best be helped by them. This person had already contacted a couple other organizations but was not able to receive help. I suggested calling the AFTD but then realized that with her communication difficulties, that it might be difficult for her to do. I sent an email to Matt Sharp who is their Program Manager and explained a little about her situation. The next morning, I contacted my friend and suggested she call Matt. Guess what! He had already called her and was in the process of helping her. 

The people at the AFTD all seem to me to be extremely dedicated to our cause of FTD and have always been willing to go out of their way when I have needed something. They are also the organization that hosts the annual FTD Education Conference. The conference will be held next May in Los Angeles so keep an eye out for more information on that. I encourage everyone to attend if you are able. 

 ⧫    On a similar note, if you have been diagnosed with FTD (or are a caregiver) there are quite a few support groups out there on the internet. The AFTD sponsors one that is for both. There is also an excellent support group that is for only those with FTD. It is a "secret" group, meaning that it is private, by invitation only and not accessible to anyone except those of us diagnosed. This also means you cannot search for it and find it which keeps it extremely private. If you have a confirmed diagnosis and are interested, you can email the primary administrator of the group at Sherylwhitman.FTD@gmail.com . There is another group called "Ask the FTD Patient" where you can ask questions and receive answers from FTD'ers based on their own experiences. Often times, they are the only ones who can answer a question. You can use Sheryl's email link to join that one as well. If you want more information but aren't sure you are ready to join, feel free to ask questions in the comments section below. You can always do that with any of my blogs.

 ⧫    A while back, I mentioned in a blog that I am experimenting with CBD oil. CBD oil is made from hemp and shares many of the attributes of medical marijuana. It is legal in most states. It contains nothing that can cause a marijuana "high" so it is supposed to be safe to use. I promised to report back on how it worked for me. I do not use it every day and I'll get into that in a bit. However, when I have one of those dreadful "FTD headaches" or when I am feeling more stressed than usual. I have been placing half a dropper full under my tongue or inside my cheek (0.5 ml). It does calm me enough to reduce my stress level. For the headaches, I would say that it takes "the edge" off. The headache is still there, but it eases it enough so that I can function without hiding in a dark quiet room. 

I must point out that a full recommended dose is 1 ml. I imagine that if I used that full dose, the result would be even better. Unfortunately, I experience some stomach pain when I use the oil. I also have the same issue with marijuana (Though it is illegal in my state so of course I have never tried it, just in case any law enforcement are reading!!!) My doctor suggests that I may have an allergy to it just as I do with most things, including a lot of plants. I gladly trade some stomach pains for some headache and stress relief though. I know of many other people who get even better results from it than I do. If you have access to medical marijuana or the real stuff, I understand that works much better.

I actually have an FTD headache today, so you can see that it does make it subside enough that I am still able to be writing this. Then again, it may be the headache that is making me ramble. 

If anyone reading this uses it for any other purposes, I would be most interested in hearing about it.

 ⧫    Another product I have been having good luck with is Lidocaine cream. I get the prescription strength of 2.5% and, of course, must have it prescribed by my doctor. I don't know how many others, if anyone, has this same experience, but my brain seems to get confused between pain, itching and just plain irritation. If I cut myself or burn myself, it can drive me to distraction by severe itching instead of pain. A bug bite that should itch may be felt as pain. Also, many times, areas of skin can just get irritated by many strange things. It can be from a clothing tag rubbing on it or rubbing on most anything, like the arm of the sofa. It can even be triggered by someone's touch on rare occassions. (Now that is just plain weird, I know.) I have found that if I apply the Lidocaine cream (works better than the gel) and cover it with a band-aid or even wrap plastic wrap to keep it from rubbing off, it dulls the feelings of pain or itch just as it is supposed to. I sometimes need to apply it two or three times. By dulling the feeling, my brain seems to be able to reset itself and will, most often, eliminate the feeling totally or at least making pain feel like pain and itch feel like itch. Please don't try it on severe cuts, burns or open wounds. 

As I said, these are just some little issues that I keep meaning to write about but are just not a big enough issue for an entire blog. I promise to get back to a real blog next week, as long as I don't have another FTD headache!

Wrong Answers and Fake Cures

This blog is going to be a bit touchy. I try to be as sensitive as possible in my blogs, but sometimes I just need to tell it like it is.

There is not enough research being done on FTD, no doubt about it. The main reason is that there isn't much money being earmarked for it. It is believed that there are so many more cases of Alzheimer's Disease that it is better to focus on that one. Grrrr...  enough said on that one. There is not enough research being done, but there is research being done.

In fact, the FTD Registry is currently seeking for those registered to complete some new surveys. I completed mine yesterday and was impressed by the thoroughness of them. You can contact the FTD Registry at www.ftdregistry.org. If you are registered with them, you can take the surveys. If you are not registered, please consider doing so and then completing the surveys. The more they are able learn from us, the better research that may be enabled. Obviously, I encourage everyone with FTD (or a caregiver if the one with FTD cannot complete the surveys) to respond.

That is the easy part of this blog. The difficult and more sensitive part is the number of questions I am seeing out on the internet (primarily from caregivers or others who have loved ones with FTD) searching for commonalities that they think may have contributed to causing FTD.  There is nothing wrong with curiosity and it is pretty much human nature to want answers.

However, the biggest danger I see in these questions is that many of them seem to be searching for something that those with FTD have done to cause their disease. Approximately one-third of all FTD cases are suspected to be family related and caused by a faulty gene. For the remaining non-genetic cases, I will quote the Alzheimer's Association, "There are no known risk factors for any frontotemporal degenerations except for a family history or a similar disorder." The Alzheimer's Association is not alone in this belief. Searching on the internet, I found similar statements from almost every medical research center.

So, why do I think these questions are a danger? Since the questions often seem to be suspecting that the person with FTD did something to bring on their FTD, I fear that the person asking the questions may not be the best at caring for someone with FTD. I readily admit that FTD has brought me a healthy dose of paranoia but I cannot help but wonder that if these people are able to believe that the person with FTD brought it on themselves, there would be more resentment and less compassion. In other words, "Well, if she brought this on by using illegal drugs, or consuming alcohol, or smoking cigarettes, I don't feel obligated to take care of her or feel sorry for her!"

Going hand in hand with the compassion concern, is the concern that people with FTD read these questions and end up feeling like they perhaps did do something wrong and brought it on themselves. I would think that they would also feel as though they, and their disease, are not being understood or are being dismissed.

On the other hand, it would extremely wrong to suspect everyone asking questions is trying to place blame. There is a reasonable desire to find a reason for things. In the case of FTD, it could be the fear of them also developing this horrid disease that drives it or  just an intense need to learn as much as possible about it. When I see questions more oriented to head injury, abuse, neglect, depression... things that are out of the control of the person who has developed the disease... that is my first reaction.

Okay, I've already risked offending a pretty large group of people, but there is another area that concerns me. I often see, out there on the internet, suggested home and holistic treatments. There is no research to back up most of these claims and some of them can actually do harm. Many may have a placebo effect and provide the illusion that they are doing something to improve or delay the disease. Now, don't get me wrong, there are many holistic and home treatments that may help alleviate symptoms but they aren't a cure.

The medical field has not determined if there are supplements that can actually help FTD, but there are supplements that are believed to improve memory and/or thinking. There is little risk in taking these. These include CoQ10, Vitamin B and Vitamin E. Personally, I have been taking B and E supplements for over 15 years due to deficiencies in my body. I have pernicious anemia so my body cannot absorb vitamin B in the normal way and I must get injections. However, I would never suggest that perhaps these vitamin deficiencies caused me to develop FTD. That would be grasping at straws and offering false hope. There in lies my concern about claims like that being posted on the internet, as well as wasting money that can become scarce when one has FTD. 

One of the herbal remedies showing promise with some of us is CBD oil, but I will not suggest that everyone can benefit from it. It is also very expensive which makes it out of reach for many anyway. If you are interested, there is a lot of information about it on the internet and I will leave it up to you to read about it and evaluate the risks/rewards for yourself.

There are lifestyle issues that are suggested to possibly delay the progression of FTD. The two main ones that come to my mind are exercise and a healthy diet. When I was diagnosed, the neuro-psychiatrist gave me two suggestions. "Get exercise equivalent to walking two blocks a day for me, and get your affairs in order." I guess it was really three because he later said "Enjoy your life while you still can."  

I am not sure walking two blocks a day is perfect or enough for everyone, but it is good to keep moving if you can. If you can jog, jog. If you can walk, walk. If you can't do either of those, try chair Yoga. The senior centers in my area offer chair exercise sessions also. The more you stay active, surely, must be better for you than remaining sedentary. 

Obviously, a healthy diet is good for absolutely everyone. A Mediterranean diet is highly recommended by experts. It includes less meat, less carbohydrates, more vegetables and healthy grains. 

Yes, it is obviously better to eat a healthy diet but it can also be a huge challenge. When someone with FTD has the common intense cravings for carbs and sweets, it can get downright difficult to manage. Also, the sense of taste and smell are often greatly reduced. I compensate for that by using more spices and even adding a little sweetness to foods. I use agave syrup for sweetness because, while it does have calories, it does not affect the blood glucose level like sugar. The sugar just makes the cravings for sweetness stronger. 

Here, I would be remiss to not mention the question of which is most important, length of life or quality of life. Personally, I succeed pretty well at eating healthy, but I also eat my cookies. I try to have homemade ones on hand and usually add things like peanut butter, dried fruit, whole grains and, I admit it, sometimes chocolate. But when I am craving sweets, stay out of my way! I know FTD is going to kill me eventually, so why should I deprive myself of all tasty treats?

Bottom line on the "cures" and lifestyle changes, I suggest you use your common sense. If it sounds too good to be true, it probably is. Bottom line on the search for reasons someone has FTD, think about whether it really matters. Will suggesting that someone caused their own FTD make a difference or make things worse.

My own personal bottom line, please visit the website www.ftdregistry.org. Answering these surveys to help the experts research the causes of FTD may be a much better option than to wear yourself out to figure it out on your own.

FTD is No Fairy Tale

In the past three or four days, I have had some pretty interesting conversations with some others with FTD. One was frustrated because her husband was assuming that since she has FTD, she can no longer do anything and certainly could not do anything right. She was feeling worthless. Another conversation was with a caregiver who blamed her loved one for everything that went wrong and she truly believed that every negative behavior was being done intentionally by him. Fortunately, I am also familiar with some care partners and their loved ones with FTD who do actually work together to make this journey through FTD as pleasant as it possibly can.

While thinking about these different FTD experiences, I must have regressed to my childhood. I started to come up with an odd interpretation of the children's story of the Three Little Bears.  In my interpretation, the bears are loved ones, caregivers and care partners to someone with FTD. If you do not like the idea of my story, just skip the next three paragraphs and go with the reality that follows.

Once there was a bear who assumed that now that his loved one has been diagnosed with FTD, that they could no longer do anything. The bear took over everything in their lives. He cooked, he cleaned, he shopped, he did laundry, he insisted on going everywhere with his loved one and he made all the decisions. When the person with FTD tried to help, he criticized how it was done and told her not to do things anymore. He made all the decisions in their lives such as where to go and when. The bear's loved one was made to feel like she was totally worthless and there was nothing she could do correctly. She always felt that he was belittling her. It wasn't easy for the bear either. It did not take long until the bear was depressed, angry and totally worn out from doing everything himself. His own health declined as it became more difficult to do everything himself. He began lashing out at his loved one by yelling and criticizing her. This just made everything worse because the FTD'er also became depressed, angry and worthless. Life was not pleasant in this home.

In another part of town, there was a bear whose loved one was also diagnosed with FTD. This bear accepted the diagnosis but did not acknowledge the symptoms of FTD in their loved one nor accept how FTD had changed him. The bear became angry and resentful every time her FTD'er did not do things that he used to do on his own or didn't do something she had told him to do. This bear yelled often and was constantly criticized him. She believed that he was hiding things, like the remote control, on purpose just to get to her. She also got angry when the FTD'er got confused and did not understand what she was telling him to do. One day the bear discovered that the FTD'er was not paying the bills and was convinced he was forgetting just to irritate her. Both the bear and her loved one became so very frustrated and angry that they barely talked anymore. They were always fighting, it seemed. It did not take long until the loved one did not feel loved and lost interest in everything around him. Obviously, life was not pleasant in this bear's home either.

In yet another part of town, there was a bear who, when her loved one was diagnosed with FTD, she learned as much as she could about the disease. She researched on the internet and talked to others who either had the disease or was caring for someone who did. She even read a couple books about it and joined a support group. Learning what FTD was going to do her loved one was upsetting to her and she got angry at the disease quite often. The bear kept reminding herself to get mad at the disease and not the one with FTD. She did learn that the only way they were going to be able to cope was to talk about it with each other. This bear paid attention to when her loved one was more irritable and figured out that it was when he had done too much the day before. She realized that after stressful days, his FTD symptoms would appear worse. So she started scheduling less things on the same day. She encouraged him to do activities that he used to do or to learn something new. She figured out that if he could accomplish things, he would feel better about himself. She didn't yell at him very often because she learned it did no good. She would let the subject drop and then talk about it later when they were both calm. If he folded laundry, but it was done wrong, she thanked him for doing it without criticizing. Then later, when he was asleep or watching TV, the bear refolded it the way she wanted it. The bear and her loved one still did things together, they laughed when something went wrong because of his FTD. The bear understood that the FTD disease was causing him to act differently. This bear's home was still very pleasant to live in. 

Okay, I have FTD and sometimes I come up with some weird ideas. I won't even start about the weird dreams. 

There is no perfect way to deal with FTD in any relationship. There are no instruction manuals or experts who can tell you exactly how to deal with your FTD relationship. Some people can give you a lot of suggestions and ideas for what MIGHT work or what has worked for them. That is what I try to do. If I ever come across as though I know everything about FTD and dealing with it, that someone will set me straight.

No two cases of FTD are alike. The disease does not follow a pattern as to what order the brain cells are destroyed. That is why we often hear or see comments on the support groups about how their loved one is nothing like the person who has FTD is being described.

No two relationships are the same. If the relationship between the one with FTD and the caregiver was strained before FTD, it is bound to get even more strained with it as a factor. The same is true with financial situations. Finances are often a huge issue with FTD. Careers are ended much earlier than was planned. The difference between dollars from salaries and wages while working and the number of dollars from Social Security Disability or disability insurance can be a very wide gap. If the one with FTD was the major wage earner in the relationship, the strain can be overwhelming. Combine the reduced income with the increased expenses brought on by FTD, and it can be an overwhelming strain on any relationship.

People can have totally different personalities. My mom always said I had a "take charge personality" which I believe was her kind way of saying I was a pushy person who insisted on jumping in and taking over. This kind of person can be detrimental in a relationship with FTD involved because they will jump in and take over everything and try to do it all themselves. There are also people who don't want any changes to routine nor any added responsibilities. They are happy with how everything has always been and wish it to stay that way. Neither of these approaches is going to work well in a relationship that involves FTD. 

Fortunately, there are others who work things out. Those who are fortunate enough to have others who are willing to pitch in and help obviously have an easier time. A lot of flexibility along with give and take is needed to maintain a decent relationship. I doubt there is any totally peaceful household that includes someone with FTD. It is a fickle disease and those of us with the disease can be different from day to day. I can be different from minute to minute. 

I wish my story had another bear. This bear would be someone like my daughter. She takes things in stride fairly well. She will ask me if I need help with something and then back off if I say no. She realizes how stubborn I have always been and that it is often worse since FTD. She comes up with suggestions for things that I might enjoy doing that would be possible with FTD. She rarely criticizes me. She will tell me when I am wrong or over-reacting though. She is a perfect balance. Then again, it might help that she lives in a different state. We talk for about a half hour every day, but that is certainly not like living in the same household. 

The fourth bear could also be my sister. She has learned enough about FTD and knows enough about the quirks in my personality, that she is really good for me. She takes me grocery shopping, but doesn't get angry or frustrated with me when I do things like tell her to keep up with me and don't try to evaluate if I might like a different product after I have made my selection. She has learned that when I snap out, it is the disease causing me to do it. She knows when to step in and when to back off. She and her husband do a lot for me. Not everyone with FTD is lucky enough to have someone like them.

Dealing with FTD requires the patience of a saint and the ability to let things slide as well as knowing when to argue and when to give in. It is a difficult disease to deal with, no doubt about that. It is certainly no fairy tale.

I wish I could say that my husband and I are like the bears in the third story where everything seems wonderful. My husband is not the best caregiver, but he also has Alzheimer's Disease now, so he is not capable of being the best. His disease also makes me a caregiver and, with FTD, I am not even close to being the best caregiver. The one thing we always do though, is end each day with a huge hug and a couple kisses thrown in. It really helps to erase the conflicts that occur each day.

Exhaustion

Have you ever heard anyone say "I am so tired of being tired!"? When I have heard that said, it is usually from someone who is fighting an illness or chronic disease. I'm sure you already know where I am headed. Yes, FTD is one of those diseases that indeed makes you tired.

I said tired, I really should say exhausted. Someone said "Why are you so tired, you don't do anything?"  Some days, getting out of bed is the only thing I can do. I have actually experienced days when I was literally too tired to eat, much less to fix a meal. There are days I must force myself to even get out of bed. Fortunately, at this point, those days are still in the minority for me. For others with FTD, it can be every day.

It doesn't matter what source of information you are using to learn about FTD, you will read the words "fatigue," "loss of energy," "extreme tiredness," and others that mean the same thing. Obviously, those with FTD will experience tiredness and exhaustion just like those who do not have FTD. If you do too much work or take on too many tasks in a single day, we are going to feel tired or exhausted just as anyone does.

However, there are even more things that you would not think of as being exhausting. Trying to cope with your surroundings is something that is greatly exhausting. If there are too many noises, too many distractions or just being in surroundings different than your usual, it leads to tiredness and then to exhaustion. This is why many of us hate to shop. There are too many people, too much background noise, too many colors or too much commotion going on. To those of us with FTD, there is no such thing as making a simple quick trip to get something. Even visiting friends or family can have the same effect.

FTD'ers do not adjust well to an increased activity level. I used to do hours of housework or yard work in a single day without even thinking about it. Now, if I work even a small portion of that time, I am pretty worthless the rest of the day. The peril of this exhaustion is that exhaustion often brings irritability. I will admit to not being the most pleasant person to be around when I am exhausted... not even close.

It is not only physical fatigue that we face. Of course, if we are having trouble sleeping, we are also going to be more exhausted, tired and irritable. This is true for the FTD'er, the caregivers and anyone else with sleep issues. If sleep issues are affecting the one with FTD, it should definitely be discussed with their doctor. There are medications and other strategies that can help.

Just getting through a day for someone with FTD can be exhausting. Think about how it might feel if you have to struggle to think of words that you want to say or struggle to getting the word out correctly when you do. The stress of trying to remember things and of trying to remember how to do things that used to be second nature is exhausting. Every activity, every thought, every conversation can all be exhausting. The brain needs energy. If the brain is struggling, it becomes exhausted just as your body does when you do too much. I have read that the brain of someone with FTD, or any other dementia, needs more rest than the body does. A damaged brain must work harder than a brain still totally functioning, therefore, more energy is required. This means more sleep is needed. If someone with FTD is sleeping or staying in bed for 12 hours, it is because their brain needs those hours of rest.

I have written many times about symptoms of FTD, including abnormal interest in sex, no filter between brain and mouth and inappropriate actions (disrobing outdoors, peeing outdoors, hugging strangers...). If we think about it,quite often, those of us with FTD realize that we act inappropriately, such as laughing at funerals, being brutally honest with someone, revealing private information. I cannot begin to tell you the number of times I will say something insulting to someone because that is the thought that pops up into my head. Don't tell me a secret and expect me not to tell someone about it. I realize I do these things so I am constantly reminding myself to not do them. For me it is akin to someone placing a kitten on my lap and telling me to not dare to touch it. The entire time, I would be fighting my instincts to pick it up, pet it, talk to it and cuddle it. I adore kittens and it would be a tough battle to obey those instructions. The new instincts FTD has brought me has often led me to say something, totally out of the blue, then wonder why in the world I said it. 

When I am with others, I must constantly remind myself to keep my thoughts to myself, not to touch people or do anything else inappropriate. It is exhausting to fight your instincts, even when those instincts are not the same as they were pre-FTD. If I go into a waiting room, a restaurant or someone's home, I must be thinking of where I would feel most comfortable. I search for a quiet corner where no one can walk up to me from behind. Then I sit and keep telling myself "It's okay, you can do this."  "Uh-oh, where is the bathroom?"  These thing that those without FTD never need to think about can be exhausting.

If you are a caregiver and you notice that your loved one is more irritable, uncooperative or doesn't want to do anything, it may be time to stop and think. Did they do something out of the ordinary pace and circumstances of their normal day? You may want to keep a calendar or make notes of activity levels and behavior levels. You might find a pattern and be able to adjust their schedule accordingly.

I can be exhausted for an entire day after needing to do something out of the comfort of home or if anything out of the ordinary occurs. If it is something way out of line with my ordinary routine, the fatigue can last for days, a week or more. I will give you an example. 

My sister got married last weekend. I really enjoyed the preparations for it. I was able to recapture some of my creative juices and help design things and shop online for necessary items. (I think I may have mentioned this if a blog or two.) I even made the wedding cake. I simplified it and it was not even close to being as intricate as any of the cakes I made before, but I did it. I laid out a schedule of what to do when and in what order. I had someone here to help when I needed it. My sister and brother in law arranged things to make the wedding day easier for me. He picked me up an hour or so before anyone would arrive so that I could settle in and he arranged for someone to drive me home before the loud music started. My sister had arranged the head table in such a way that I was protected. I have said before how aware and understanding she is of my FTD. With their advance planning, I had a blast. I think it was the most fun I have ever had at a wedding.

I did not get tired that day. Sometimes, I believe it is pure adrenaline that allows me to have a busy or active day when it is a fun event. I pay for it afterward though. It has been a week since the wedding. I am still exhausted, sleeping longer than normal, having no interest in doing things and no energy to do them anyway. I expect to be the same for another week or so. Believe me, it was worth it. I am also fortunate that I can recognize this in myself. Many people with FTD are not able to recognize what is affecting them or why.

I must not ignore the caregivers when talking about exhaustion. Not only are they trying to keep the home and family running, they are caring for the one with FTD. That in itself is an exhausting challenge. That is why I am often reminding caregivers of the need for respite care for themselves, even if only for an occasional afternoon or evening. It is so easy to say that. The reality is much more difficult. It can be very difficult to find family or friends who are willing to pitch in and help. It's not like when a family member has surgery or a brief illness. Family and friends often come through at times like that by bringing a meal, offering to pick things up at the store or stop by with a thoughtful gift. With FTD or any other long illness, they either forget or decide that it is your new normal and you can deal with it on your own. This baffles me because, to me, it is common sense that when someone has a lengthy illness or chronic disease, the need is even stronger than for a brief recovery period. 

My advice for caregivers is to beg if necessary to get friends or family to give you a break. If they won't come and fill in for you, it is still appropriate to ask them to bring a meal once in a while or offer to run errands. If no one comes through or even if they do, call your local Department of Aging, Senior Center, adult day care programs (If you are lucky enough to have any in your area.) or even nursing homes who offer a short respite care (If you are fortunate enough to be able to afford it.)  I get very frustrated when those who are considered experts make it all sound so easy. Not everyone has family nearby or close enough friends who are willing to help out. Not everyone can afford paid respite care or day care. Don't let that stop you though, it doesn't cost anything to ask for help. You may have to get past the feeling that you should be able to do it all yourself or that you feel like you are begging. If you have those feeling, it is worth a little discomfort to make those calls for help. We all need help sometimes. I will remind you that the Association for Frontotemporal Degeneration does offer limited funds for respite care.

Something that I find interesting... It is often the people who have always been the first in line to help others who have difficulty requesting help for themselves. Please remember that you must take care of yourself and that it is perfectly okay to ask for help to accomplish this. One more thing, please do not ignore your own health. Make sure you get yourself to the doctor for regular check ups, not just your loved one. Being a caregiver is not only exhausting, it is an added risk to your health. 

So, yes, I am tired of being tired. I am, though, very lucky that no one expects me to be able to do even close to what I used to do. Well, maybe with the exception that I should still be able to cook dinner every night... or pay the bills... or be the full-time caregiver for my husband. Yikes, no wonder I am exhausted sometimes!

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Everyone Needs Encouragement

I don't know if it is the paranoia FTD has given me or if people really are becoming so much more "me" oriented in their lives these days. If this is the new normal, then I am glad that I am no longer considered normal. I can only be what is normal for me and have no desire to conform to the standards of others any more. Too many people don't seem to realize that everyone needs to be congratulationed and encouraged.

I was recently invited to participate on a task force for the state of Pennsylvania. I felt, and still feel, honored to be able to do so. It involves the state's role in responding to the issues involved with dementia. I had previously volunteered to be considered for the role, so it is not like they scoured the state and came up with me. I say that because I don't feel like this opportunity makes me any better than anyone else dealing with dementia. There are many more of us in the state who would also jump at the opportunity. I know it will be a struggle for my brain to do this but I am doing it for the same reason I advocate for those with FTD and the Association for Frontotemporal Degeneration. The more we are out there spreading the word and the more people hear about FTD, the more likely it will get attention from the people who can help.

I am honored to be able to speak on behalf of those affected by FTD, but it is not something for which I would look for kudos. I did not start telling everyone in town about this opportunity. I told the support groups that I visit, the AFTD, and just two family members in addition to my husband and daughter. Almost all of these people seemed just as happy about it as I did and provided a lot of encouragement. My happiness comes from the fact that the state is taking into consideration, FTD and other dementias in addition to Alzheimer's.

After a week or so, I mentioned it to four other people who I thought of as friends. One was even a friend from church, one was a family member and they all know I have FTD. The first one said, "I hope you are able do it." The next, "Good luck with THAT!" The next said nothing at all, just started talking about how she had served on a local board for 10 years. The final one said, "Interesting" with no enthusiasm at all, then changed the subject. Yeah, I am done telling people about it. I will just do it and hope and pray that some good comes from it.

This brings me right back to the subject of toxic friends and family that I wrote about a couple weeks ago. All four of them are now on my list of those to avoid. I talk about toxicity again because it just confounds me. I do not understand how other people care so little or do not realize how much their reaction affects the other person. They cannot realize how much people need those words of encouragement. Can they possibly not care about what goes on in someone else's life?

I have always been just the opposite. I always got excited for people who accomplish or achieve something. This is for everyone, even someone I talk to in line at a store. I appreciate people, recognize their worth and like to take the time and opportunity to encourage them. I know there are others who do not. There are always a few who are jealous of anyone's achievement or really just don't care about anything or anyone. I always thought this was a tiny minority but now I wonder just how rampant it is. Even with FTD, I still recognize that need in others. Even while battling the loss of sympathy and empathy and fighting off the total apathy, I care. Since FTD, I may not be enthused about what someone is telling me, but I still recognize their pride and remember to smile and encourage them, even if it is bit more forced now. Yes, I do realize that in the future I may no longer be able to still do this.

Isn't what I am talking about just common decency? Even if you do not care at all about what someone is telling you about, is it no longer the right thing to do to encourage people? Isn't it the same principle as when someone is wearing the most ugly shirt you have ever seen and they ask you if you like it? We are supposed to learn early in life that you don't say that it is ugly, you find something good about it, like "I love the colors." 

It is well know that those of us with FTD have no filter between brain and mouth. If we think it, we are likely to just go ahead and say it. Even with that loss of filter, I still find myself being nicer than many people without any brain disease are. I do still say embarrassing things from time to time, but I don't believe I say things that are downright nasty or inconsiderate.

My loss of filter is more likely to be something like, "You've been here long enough, I want to take a nap." or the favorite one I did in a store, "What the f**k are all these people doing here?" If I do say something inappropriate that insults someone and I am told about it or recognize it myself, I apologize. Even if I did think it and meant it, I still apologize because I realize they may have been hurt by what I said.

My psychologist, who totally understands FTD, insists that I don't have total apathy, at least not yet. She says this because I can realize that I have said something inappropriate and apologize afterward. My senses of empathy and sympathy are definitely significantly blunted and sometimes non existent. It seems to be the same with the apathy. It is blunted rather than nonexistent 

If I can battle through with the lack of these emotions, as well as the downright meanness that often comes with FTD, I really cannot understand why there are so many people who were right there to pop my balloon when I talked about this opportunity that was so exciting to me. 

That is when I must come back to the toxic people I wrote about before. I must learn to stop involving myself with this kind of people. Family members are no exception. Of the four I mentioned, one was a family member, one is someone from my church whom I considered a friend and the other two were professionals whom I have been dealing with for fifteen years and have become quite friendly with. We have even socialized outside of the professional relationship. There is nothing that says that after being insulted or hurt that you have to stand there and beg them to do it again.

The first time I saw a psychologist was 25 years ago, following a tragic event. She was a former nun who was married to a former priest. She was the most prim and proper lady I think I have ever known, at least in the past 40 years. She also gave me the best advice ever. She sat there, back straight, hands in her lap looking lovely, and said "Cindy, do you ever get tired of being a tit to the whole world."  In other words, knock off worrying about everyone else before you worry about yourself. There is no way I will ever forget her advice because the words were shocking, coming this lovely lady. Sometimes, I have to remind myself of her words and remember to put myself first. I must learn to not provide this kind of people the opportunity to do it over and over. 

A caregiver needs encouragement to keep going. Even if it is someone who is not offering to assist or give you a break, the fact that they recognize all that you are doing can possibly boost your spirits just enough to go on for another day. Of course the opposite is true as well. If someone is criticizing what you are doing, that is someone you don't need around you or listen to. 

Someone with FTD needs encouragement as well. If we manage to accomplish something, a word of acknowledgement or celebration is appreciated. It encourages us to keep trying. If someone notices that we are really trying even if we don't succeed,  acknowledging how hard we are trying can allow us to continue. If we get upset or depressed over things that we can no longer do, reminding us of what we can do just might improve our mindset for a while.

Like most things, it is just common sense (and common decency). This is why the term "care partners" came about. We are a team and if we don't acknowledge and encourage what the other is doing, we are no longer a team.

Experiencing Grief

I experienced the loss of two of my dearest family members within the last three months. After my uncle's death, my aunt could no longer live alone so she moved into a nursing home until she died in April. I believe I mourned for her the entire time she was in the home, even though I was able to talk to her on the phone. 

Those of us with FTD are supposed to not care because of the apathy that befalls us, as well as the loss of empathy and sympathy for others. Those may be true facts, but it hasn't been protecting me from the feelings of grief. I must admit that I do not care if anyone else is feeling grief and sadness, but I do feel it in myself.

I decided to do some research on the subject to find out if the reason I can not let go of the grief is possibly related to my FTD. There just is not much information about grief in those with FTD. There is a huge amount of information about grief in caregivers, but not for FTD'ers themselves.

The few articles I found on the subject tended to agree with each other. Someone with FTD suffers a lot of losses along the course of the disease. I will start with that. Two of the writers mention "Little Deaths" that FTD'ers suffer. We may lose a job that we enjoyed and had been doing for years. This may also lead to financial issues which worsen that loss. This is truly a loss for someone with FTD and something that is mourned. The other big one is losing the right to drive. This can make an FTD'er to mourn the loss of the independence they had when they could go where they wanted, when they wanted. There are many others including no longer being able to do the activities and hobbies they did before, losing the ability to read and write or even think of the words they are searching for and, a big one here, the loss of memories.

Grieving, whether from the death of a loved one, any of the events I mentioned or anything else that they view as a loss can trigger grief. They may not even realize exactly what is making them feel that way. They may become restless, irritable, display an overwhelming feeling of sadness or just seem lost.

Caregivers also feel these losses their loved one is experiencing as well as their own grief over the overwhelming task of being a caregiver, financial issues, having to do everything with no help or the loss of freedom and time for themselves. The difference is that caregivers and anyone else without dementia can understand the reality of the loss. If the grief is caused by a death, the caregiver is capable of changing the feelings of grief into memories and have the ability to understand what those feelings are connected to.

Those of us with FTD, or any other dementia, often can no longer be able to understand why they have the weight of this enormous sadness, anger or a general feeling of something being wrong. Unfortunately, even while dealing with their own grief, the caregiver needs to find even more patience within themselves to comfort their loved one.

In dealing with the loss of a person, the person with dementia should be told right away. Otherwise, they will sense that something is wrong just from being around those who already know. When telling them that someone has died, use that word. They may not understand "gone to Heaven/a better place," "left us," or even "passed away."  It may help to be more attentive to the FTD'er, including more hugs or kisses. When you are discussing the person who has died, be sure to use the past tense and reminisce with them if they want to do that. Try to tell them when they are relaxed and at a time of day when they are more aware of things.

One of the issues common among the articles I found was that not telling the person with dementia is not going to be effective. They are going to sense something is wrong and become confused. If they are told a story about why the person is not around, they will recognize that what you told them does not match their reality. The other issue they agreed on was, if they are at all able, to allow the person with dementia to attend the funeral. It is believed that by being included, the reality of the situation is easier for them to understand. If they are able to attend, make sure someone is always with them to answer questions, reassure them and remove them if they become upset.

As I said, those with dementia may be grieving over things other than a person's death. These are the "Little Deaths" I mentioned before. Included are things such as loss of a job, any ability they previously had, loss of driving privileges and the independence that comes with it and the loss of memories. These little deaths can affect someone with FTD very similarly to the death of a loved one.

The FTD'er may not even realize that it is one of these things that is causing them to feel more angry, restless, aggressive or withdrawn. It could also lead to a worsening of symptoms. If these types of symptoms continues, you may have to call or schedule an appointment with their doctor. There are medications available that can help relieve some of these negative symptoms. 

Even more important than medication, though, is understanding, patience and openly recognizing what is happening. The caregiver can say something like, "You seem restless/angry/sad today," "Is there something making you feel that way? Is there anything we can do to help you feel better" or "Would you like to talk about it?"

Caregivers can experience many of the same senses of loss that can lead to reacting in many of the same ways, such as anger, sadness or resentment. It is important to realize why you are feeling this way and determine if there is any way to improve those things.

I will say, again as I have in previous blogs, how important respite care can be for the caregiver. I do realize that it is so easy to talk about but not always so easy to arrange. Don't be afraid to call a family member and say "I need you to come over for the day on Saturday to stay with mom because I am not able to be here." Don't say "Could you come over some time so I can have a break. Be specific. Contact any agencies in your area to see if they offer respite services. Plus, remember that the AFTD offers respite grants to enable the caregivers to have a time of respite. 

Researching this subject was good for me. Yes, I am still grieving and now realize that I will be for sometime. I also believe the sad feelings will abate eventually. Just yesterday, something exciting happened for me and my first thought was that I needed to call and tell them. Oops, can't do that anymore. Later, out of the blue, my sister said to me "You know who else would be very proud of you? Uncle xxxx and Aunt xxxx." I knew she was right and it made me feel close to them for just a few minutes. Of course, I am still grieving over not being able to follow recipes and, most definitely, not being able to drive and all those other little deaths that don't seem so little. I also know that, for now, I can cope with it all.