Toxic People

Another person with FTD, one whom I now consider a friend, asked me if I had ever written a blog about "Toxic People".  I looked back through the years of blog entries and did not find one where I specifically  used this term. I have, however, written about a lot of people who do become toxic. Many of them I wrote about in a blog back in September of last year. It was titled "Deniers, Disbelievers and Ostriches." Certainly the people I was describing are what are now labeled as toxic people. (https://ftdnoflowers.blogspot.com/2017/09/deniers-disbelievers-and-ostriches.html)

Before I get into this subject, I must remind all the readers that I am not a doctor nor a therapist. I have taken just a few courses in psychology but not nearly enough. I have been blessed with a lot of common sense and powers of observation and that is what I use when I write about life with FTD. Of course I live with my own FTD as well and have been a caregiver for several family members, including my husband at the present time. I also am lucky that my FTD has not stolen my reading ability and I do a lot of that and always have. That said...

I have seen toxic people described as draining, non-supportive and difficult. Those of us with FTD need to be surrounded with as many people as possible who are supportive, understanding, patient and enjoyable to be around.  As with most people, we have to learn who are positive people to be around and those who are not. 

It is difficult to remove yourself from a person who is toxic to your well being.  There are probably a lot of people in all of our lives who were tolerable before our disease but no longer are. This would include people we have know for a long time or have forced themselves into our lives to make themselves feel better. It takes courage and strength to weed these people from your life but your life can be much better without exposure to them.

I had a friend who jumped into my life with both feet when she learned I had FTD. She claimed she knew all about it and understood what I needed. I think that meant she must have read a couple paragraphs about it. She was one of those people who wanted to talk to me every day. Notice I said "talk to" because that is what it amounted to. I used to joke that if I wanted to get her off the phone, I only needed to say something about myself. She also believed she knew everything I should do and would keep badgering me about it. When we were around others, she would answer for me. It took me a long time to shut down this relationship. It came down to my not wanting to hurt her feelings to the detriment of my own. I can not begin to describe the extreme relief it was to have this narcissist out of my life when I finally made the break.

Another person I needed to remove from my life was one who was constantly telling me details about other people in her life. This included many private things that I am sure the other person did not want to be shared. I came to realize that she was more than likely doing the same with everything she knew about my private life. 

So, how do you recognize toxic people?  I have learned that if I don't look forward to seeing them or hearing from them, there is certainly something about them that is not a positive influence on my life. Another sign can be that you feel worse or totally exhausted after dealing with them than you did going in.

Toxic people are not limited to just friends and acquaintances, They can also be family. It seems there is always at least one person in the family who bulldozes over everyone else. They manage to manipulate situations to make others look bad in order to make themselves the hero or the injured party in the situation. They love to tell everyone else about what you "did to them" when it was all engineered by them. This is truly a person who is toxic to all around them.

One type of situation that immediately comes to mind involves grandparents. Of course it can be other relatives as well, but I see it often with grandparents. The biggest example of this is plain emotional blackmail. "If you want to see your grandchildren you must ..." It can be financial demands, babysitting or anything they want to force the grandparents to do. 

When I see this type of emotional blackmail, I get furious. Children are not things to be used as a bargaining chip. Grandparents can be one of the best influences for children. They generally have more time and patience to give them, teaching them and nurturing them in love. I know that, personally, some of the best moments of my life were summers that I spent with my grandparents. I learned so much from them and I think they learned from me. I always knew I was loved even when I was away from them. This was during the time that the term "generation gap" came into play.  There was no generation gap in my life. I actually won a competition with my response to the question "What do you think of the generation gap and how can it be fixed?" by explaining that with me as an example, there did not need to be a gap.

One person told me that their children would not allow the grandchildren see their grandparents because "Grandma is too sick for you to go there."  Yes, FTD is a disease, but it is not the kind of sickness that was being suggested. I suspect that, in this case, the children had not bothered to learn anything about FTD and equate it with mental illness. I should explain that this grandmother is in earlier stages of FTD and the grandfather is also in the home in case any issues did arise.

Toxic people can also destroy relationships by controlling events. They can make plans with someone and then not show up no matter how much the other person was looking forward to the event. Another way is to have a gathering of family members or friends and not invite the one with FTD. Come on people, we always find out!

Within the last month, there were two weddings I was not invited to. One was a family member and one was a long-time friend.  In this day of social media, it's pretty difficult to keep a wedding a secret. I kept waiting for an invitation to each of them, finally realizing it was not coming. The ironic part is that they were both out of town so that I would not have been able to attend anyway. I finally convinced myself to let it go and be happy that there were two wedding gifts I did not need to buy. 

Many people with FTD have difficulty speaking. There are subgroups of FTD called PPA, Primary Progressive Aphasia. With this type, thinking of words, speaking words or coming up with the correct words can all become difficult or impossible. Too many people are just not comfortable when trying to communicate with anyone who does not speak well. Others assume that if you can't think of words or say them, that you must be stupid. This is ridiculous, rude and definitely toxic to those with PPA. How difficult is it to slow down, listen with patience and try to understand. You know I have to say it... "Those with FTD have dementia, they don't have stupid." That includes PPA. 

You often hear the phrase "you learn who your friends are when...". Yep, you certainly do with FTD. Family members and people you thought were friends seem to disappear. I cannot figure it out. Are they afraid it is contagious? Are they afraid they won't know what to say" Are they afraid we will make demands of them?  I doubt that I will ever figure it out. All most of us want is time with family and friends so that we can feel normal for just a little while.

Oh, and one other type of toxic people can be caregivers. Whether they expect too much of us, don't allow us to do things we are capable of doing, try to force us to do things we are not capable of, try to control every second of our day or talk down to us as though we are children, it hurts.  The worst thing, in my opinion, that toxic caregivers can do is to talk about us negatively or complain about how difficult their task is when we are right there hearing what is being said. We need to be encouraged, not complained about. Care giving is a tough job, but so is having FTD.

Can those of us with FTD be toxic to others? Probably since we are not that different from everyone else. If we are, it should be remembered that we more than likely can not help being the way we are. We are still fighting the lack of impulse control, empathy and all the other dreadful symptoms of FTD. Most often, we truly cannot control what we are doing. Please treat us with kindness and understanding... Please!!!

A Personal Tale of Patient vs. Caregiver

For the last few weeks, I have been forced to wear my caregiver hat even more than normal. I wish this hat fit me better. Believe me, having FTD and caring for someone else with dementia is extremely difficult.

During the past couple weeks, I have had to make a couple very difficult financial decisions. This sort of thing is something my husband and I would discuss and come to a mutual decision. Now, I need to make these decisions alone and it frightens me. I often made bad financial decisions, even before FTD, often deferring to my husband's suggestions. Now, here I am, needing to do it alone and it confuses me and leaves me worn out. I had already taken over our day to day financial issues when I realized bills were not being paid. I must say I was lucky and he did not protest at all. In fact, he was very relieved when I offered to do it and admitted that he had been struggling. That was one time that my care giving knowledge did kick in. I offered to do it. I did not say that he could not do it anymore. The sad part is that seven years ago, I had turned this responsibility over to him because it confused me so much.

The more major financial decisions are very difficult, partly because I understand the limitations that FTD causes for me. Fortunately, I took my own advice. I am constantly suggesting to those with FTD and care partners to consult with an elder care attorney. I took my own advice. He is redoing all my official documents: will, living will, financial power of attorney and healthcare power of attorney. We had already, a few years ago, met with this same attorney and he prepared all the same documents for us. The problem is that we both made each other responsible for everything, healthcare decisions, financial decisions and even funeral instructions. It is so important for the care partner to keep up with these type of things.

I mentioned that I was not always the best with financial decisions and have made some very bad ones. Because of that, I have decided that I am going to allow the elder care attorney to control most of our savings. Wow! That's a lot of trust to give someone. I know I cannot trust myself to make good financial decisions and do not want to put that burden on a family member so this was my choice.

Of course, financial decisions are not the only thing that prevents me from being the caregiver I would like to be. I do remember a lot of things from when I was the caregiver for previous family members and I try to use things that worked with them. I do a lot of taking deep breaths before I react and do a lot of retreating into my quiet room to calm myself down for a few minutes. I also, though, sometimes do it right.

My husband, like many people with dementia, no longer wants to shower. This is a man who never skipped a day of taking a lengthy shower. I remind myself that this is okay and not smelling so fresh is not going to kill him... or me. The day before I intend to get him into the shower, in the afternoon when he is most cognizant, I tell him that the next day he needs to shower. The actual shower day, again in the afternoon when he is most aware, I tell him it is time to shower. He still complains, but he does it without resisting. That is at least one thing I get right.

To avoid taking my husband to the grocery store, my sister takes me most Mondays. I never go without a list and it takes me several hours to put it together. All week, I do jot down items as we run out. But on Sundays or Monday mornings, I spend at least two hours putting the list together. Then, in order to keep the shopping trip as short as possible, I rewrite the list in the order of the store. This has really been working well for us and has been making the shopping trips somewhat less stressful.

Unfortunately, the store doesn't keep my FTD difficulties in mind. They are constantly moving things around, but it's been a couple years since they did a major reorganization. When we went to the store last week, I found a disorganized mess. I could have stopped, checked out and gone to a different store but that would not have worked either since being in an unfamiliar store is just as likely to break me. We stuck it out but half-way through the store, I yelled out "Why do they have to move things? I cannot handle moving things!"  I did get a lot of stares, but my sister just took it in stride. Grocery shopping is another one of the chores my husband has taken over after my diagnosis that I had to once again start doing it myself.

I also still prepare all our dinners. Fortunately, my husband prefers to graze all day rather than have a true breakfast or lunch, so it is just dinner that I need to prepare. When I cook, I try to make things that we can have for at least two days to cut down on the need to cook every day. Cooking is difficult for me on some days. After I was diagnosed with FTD, he would notice when I was stressed and would often offer to go pick up dinner or he would help me cook something easy. Not only can he no longer drive out to get something, he no longer notices when I am stressed or worn out. If he does notice, he asks me why I get that way. 

Again, these are the things I do that are on the positive side as a caregiver. Unfortunately, the anger and frustration of FTD affect me, even in my caregiver role. I lose patience more often than I would like to admit. As always, if I think it, I am most likely to speak it. Yes, I yell even though I know it will do nothing but make situation worse, but it is not something I can always control. The problem is, these are the first things that FTD caused me to do long before he developed dementia. If I couldn't control it before all the added stress of being a caregiver, I sure cannot control it now.

I must add that I do get angry and frustrated that he has a 24/7 caregiver in me and I don't have anyone. I know I can call my sister for most anything, any time, but I try to limit how often I call on her. I do call her when I feel I am at my wit's end. My daughter also calls me every evening to check in on what is going on. She can always get me to laugh about it which helps enormously. I went from having a husband who was always trying to do everything for me, to his not being able to do anything. 

I often end up totally and completely exhausted with no desire to do anything. I was that way when I only had my own FTD to deal with. Now, it is multiplied several times over. I will bet that you can tell that today is one of those days. When you combine the days that FTD leaves me without energy to do anything with a day of needing to do everything, it ends up not looking pretty.

This has ended up being more of a look into our personal lives than I had originally intended. I hope I achieved my goal of showing that both sides of the FTD picture can be terrifyingly difficult to handle. This is what I tried to do in last week's blog as well, though some caregivers did not see what I was trying to say. 

Even from the beginning of my adventure with FTD, I often said that I could not begin to decide which was worse... being the one with the disease or being the one caring for that person. I knew this going into my FTD challenge from being the caregiver to my grandmother, later my mom and then my aunt before being diagnosed myself. One bit of irony is that I was finally given the diagnosis of FTD right around the time my aunt died. It seems my family just cannot get away from this disease.

We Are Not So Different After All

Some days there is just no coming up with a subject to blog about. This usually happens after several days of being frustrated with the limitations FTD brings into my life. 

One frustration that comes up repeatedly is a vast difference between the caregiver view of FTD and the view of the actual person who has FTD. These two viewpoints are not always vastly different but other times it can be a huge chasm.

Part of the problem lies in limited places that someone with FTD can express their opinion or explain what is happening in their lives. It would be wonderful if there was an open forum where both sides could express their viewpoint on the same subjects. Don't get me wrong, there are support sites that are open to both caregivers and those with the disease. Unfortunately, in my experience, these sites are slanted in favor of the caregiver. It saddens me to say that. In an ideal world, the view of both sides should be the same.

During this past week, I noticed a post on two of the support groups open to both. It was titled "8 Warning Signs That You Are Emotionally and Mentally Exhausted."  (The link to the entire article is http://runwonder.com/relationships/8-warning-signs-that-you-are-emotionally-and-mentally-exhausted.html if you want to read the entire length. 

The 8 items were:  you are easily irritated; your motivation levels are dropping; you are experiencing anxiety attacks more than usual; you have trouble sleeping; meaningless things upset you; you feel dizzy and nauseous; you feel like crying for no reason; and, you start to feel detached.

I found this information to be quite interesting because, even though it was posted and commented on by caregivers, I realized that it pertained to all of us... those of us with FTD as well as the caregivers. We are really not all that different. We are all extremely frustrated by this disease.Those of us with the disease are frustrated by not being able to comprehend or do the things we used to do almost without thinking, things that just came naturally. 

The first thing that came into my mind was the television remote control. I sit and stare at that dreaded device for several minutes before I can figure out how to tell it to do what I need it to. I often end up throwing it down or even across the room. When I do something like that, my husband gets angry and frustrated because he sees it as me acting in anger. He has not seen me struggling with the remote, all he knows is that I threw a fit and threw something which frustrates him to no end. This is only one small example as our days are filled with them.

Those of us with FTD are faced with difficult decisions that were not even conscious decisions prior to our disease. What to wear, when to brush our teeth, what to eat are just a tiny few. Everything we do throughout the day needs to be a conscious thought and can turn into total frustration. What do we do then? Usually, lash out in anger just as I do with the remote. Some days, it does not take long at all for us to give up on trying to do things. The other reaction is to panic because I cannot get something accomplished. Panic can lead to more anger and frustration and these just feed on themselves.

I really can only speak for myself, but I run away from the problem. Fortunately, most often I can now recognize when I am getting out of control. My world starts spinning, my mind cannot stop and, lately, my entire world goes black. I am so stressed that I cannot focus enough to see or hear anything around me. This is when I know to retreat to a quiet and dark place. If I don't have this kind of place to go to, I am liable to scream at people or just wrap my arms around myself and retreat from the world and everyone around me.

At home, my quiet space is what used to be just my bedroom. I have converted it into an all purpose room of sorts. One corner is my office and one corner is my comfort spot and the rest is bedroom. If I am fortunate enough to be near my room when frustrations get out of control like this, that is where I go. If I am lucky, I can fall asleep, but most times I am so wound up that I will just curl up into a fetal position and rock myself and sleep is impossible. If someone attempts to come in and try to calm me, it makes everything worse. I don't want anything to do with anyone or anything.

My daughter and my sister know how to deal with me when I reach that point and just leave me alone long enough to calm down. My husband? Not so much. I cannot fault him for that because his Alzheimer's Disease makes it very difficult for him to understand. It is not unusual for him to keep trying to come into my room to "talk about" it. That is the opposite of what I need. 

So, if you follow along with this tale of struggling with the remote control, you just might see why I insist that the list of eight things can totally apply to someone with FTD. Now, look at the list again and compare those warning signs to how a caregiver might react to the same situation. Those warning signs are spot on once again. So, how different are we anyway?

This situation really did happen in my house just last week. I was actually lucky. If we had been out somewhere, at the store, at someone else's home or anywhere but home, it could have been a huge event. There would have been even more anger, frustration and stress on both sides. 

This is why I say that we have more in common than either side of the equation realizes. We need more conversation and understanding. In the support groups that have both sides represented, it is possible that a different person with FTD could explain to the caregiver what probably happened. It could work the other way as well, another caregiver could explain to someone with FTD why our caregiver reacted the way they did.

What it comes down to is that we are ALL in this together. In my opinion at least, we need more open communication between the two sides. I cannot tell you how many people with FTD have told me that they don't visit these joint support group sites anymore because it is just too painful to read what caregivers think of their "loved" one for whom they are caring. 

There are conferences that are just for caregivers. I don't know of any that are just for those of us with FTD. That, of course, would be problematic since we often need a caregiver with us but the principal is the same. There are respite programs for the caregivers. Those with FTD get no respite from the disease. 

Please understand that I do understand what the caregiver deals with. I have explained numerous times that I was a caregiver for my grandmother, mother and aunt before I showed my own signs of the disease. I am also the caregiver for my husband. Yes, it is difficult when we are both each other's caregiver, but we have been managing so far, with a lot of help from my family. So while I do not know the difficulties in every case of FTD, since no two are the same, I have a pretty darned good idea.

My point here is that I am not trying to pick on or criticize the caregivers. My intent with this blog is to point out that both sides are dealing with the same issues. One side is not any easier than the other. 

As I said, we are all in this together. We need to be more understanding of each other. We need to communicate more openly with each other and recognize that neither one of us has an easy row to hoe. There are many weeds everywhere, throwing up obstacles all over the place, all the time. We just need to make sure one side doesn't destroy the other.

The Elephant In the Room

I think it is past time for me to address the elephant in the room. This is one thing that most of us are reluctant to talk about normally and even more so when dementia is involved. This elephant is sex. If discussing sex issues offends you, please stop here.

We are all sexual beings and learn, even as small children, that boys and girls are different. This progresses eventually into interest in sex. As we mature, we learn how and when to channel the sexual drive. Society and its norms teach us what is appropriate and what is not, as well as when it is appropriate and not.

Surprisingly, I found that there are a lot of studies out there regarding sexuality and dementia. When you have FTD, social filters are absent or greatly diminished. Studies vary and I found sources suggesting that sexual issues develop for anywhere in 7% to 25% of diagnosed cases. I suspect it is higher than that because it is a subject that many are squeamish about discussing.

What is interesting is that sexual issues run the complete gambit. The person with FTD may want nothing to do with sex or go in the opposite direction of thinking about sex nearly all the time. It should be of no surprise that the difference may lie in which area of the brain is being affected.

Those who have little or absolutely no sexual desire may relate to testosterone levels. Sexual appetite is controlled by the amount of testosterone in both men and women. These levels tend to decrease as we age, In dementia they can be reduced even more as more and more brain cells are destroyed. the lower the testosterone levels may become. In addition, many of the prescription medications that are often prescribed to control symptoms of FTD can affect the libido in either direction. Some can raise the desire and others can eliminate it.

Most of those with hypersexuality tend to be those diagnosed with bvFTD. Researchers at the University of California in San Francisco (UCSF) conducted a study to determine if hypersexual behavior is related to other "reward seeking" behaviors. This would include overeating and the craving for sweets or alcohol. They found that in people with FTD, there is a loss of cells in the putamen and pallidum, which are areas of the brain located on the right side of the brain (temporal lobe). This area of the brain is known to be responsible for reward seeking behaviors and the link to it includes hypersexuality. 

This leaves little doubt that hypersexuality is caused by FTD and an increased interest in sexual things can be as strong as our craving for sweets and is very difficult, if not impossible, to be controlled by the person with FTD. As much as I hate the expression, in hypersexuality as well as most FTD symptoms, it is the disease controlling it, not the person with the disease.

Again, I will lead with the easier subject to address. The lack of sexual interest in someone with FTD affects the loved one, who is most likely the caregiver, more than themselves. If sexual relations were a regular part of their life together, this can leave a huge void in their relationship. Without this loving connection, the caregiver can feel unloved and frustrated. The result may be the same for the person with FTD because they remember what their sexual interest was prior to FTD. They may miss that assurance of love and comfort.

Hypersexuality is more complex. It can manifest in many different behaviors. Some have what are considered normal interests in sex but they fail to recognize when talking about it or acting on it are appropriate. Others develop obsessive desires and the thoughts of sex are nearly constant. One long-time advocate for FTD summed it up by saying "I now have the libido of a sixteen year old and the mouth of a drunken sailor."  

One of the issues that arises from hypersexuality is that at the same time that the one with FTD has this intense craving for all things sexual, they have also become undesirable to their loved one/caregiver. This does not mean that their love is no longer there but the desire for intimacy is gone. In some cases, unfortunately, it does mean that the caregiver does not have a romantic love of the one with FTD, not to say they don't still love them, it is just in more of a companionship way. I have witnessed this in many cases and it makes me feel extremely sad. Just when the person with FTD needs intimacy, it is denied and becomes just one more frustration of dealing with the disease. Everyone needs to feel loved.

Pornography viewing often becomes an issue. It can become compulsive for someone with bvFTD. In some cases, that will be the only way their hypersexuality manifests itself. In that case, denying access to the internet, etc. may be self-defeating. If their compulsion is being controlled by this and not causing other issues, it might be best to let it continue even if you find it morally offensive.

Another issue is often making inappropriate sexual comments at inappropriate times. Trying to distract them may not be successful and may cause even more embarrassment. This is a good time to use the Awareness Cards that are available the AFTD. These can be printed from their website (www.theaftd.org). Then, try to steer them away from the situation.

Yet another problem with hypersexuality can be compulsive masturbation. One of the best ways to handle this is to remind them that this is something that is done in privacy and steer them to their own bedroom. While it may involve the "ewwww" factor, if it is controlled to stay in privacy, it can be a safe outlet for their sexual desires. Again, if it is done in an inappropriate place, try handing an Awareness Card to those witnessing the event and redirect the FTDer away, reminding that it is done in privacy and in their own room.

When it becomes an extreme problem, many dress their loved one in jumpsuits.  There are even ones that are not open in the front. These can also help prevent disrobing, often another consequence of FTD. One problem with the jumpsuits is that it can make toileting a difficult process. 

Above all, to the caregivers, I beg you to not take these issues personally (yes, I know it is difficult) and do not belittle, humiliate or criticize the one with FTD. These are not behaviors that they can consciously control. 

Most people tend to think of hypersexual activities as problems for men only. This is not even close to the truth. The issues affect both sexes. They may manifest themselves in somewhat different ways. I believe that the issues, when in a woman, are not discussed as openly as they are when it is about a man.

One caution I must include about masturbation. It can also be a sign of vaginal and/or urinary tract infections. It is best to rule out these possibilities. 

As always, sexuality issues should be discussed with the doctor no matter how awkward.  It needs to be determined if it is actually a side effect of a medication or infection. Once those are ruled out and if redirection and distraction is not the solution, there are medication that can control the hypersexuality.

Answering Questions Again

Today, I want to try to answer two questions I hear frequently. These are not new questions and are ones I have tried before to get the answers out there, but I still keep getting asked. So bear with me while I try again.

The first is one that my sister and brother-in-law are always asking, "Why didn't you call us, we would have done that for you?" In a different form, caregivers ask, "Why do they insist on doing themselves and then just make a mess of it?" A perfect example of this presented itself to me a few days ago.

After getting out of bed one rainy day, I popped a coffee pod in the Keurig to enjoy a hot cup when I got back from getting the newspaper and mail.  It didn't work that way. When I stepped into the laundry room, I was met with a nearly audible "Squissshhh." We  had flash floods overnight, again. Our trusty sump pump tried, but could not keep up with the water trying to invade the house, causing it to come up from the floor drains there, as well as in the garage.

It quickly became overwhelming, but I kept saying to myself, "One thing at a time!" It wasn't time to panic. The water was only out of the drains by about three feet. That's in radius, not depth! I started lifting things off the floor. I started with cardboard boxes and anything sitting in water, then continued on to everything else. That was good, logical thinking for someone with FTD, I must say. I then started mopping up. It was only about three hours of work, leaving me tired but pretty darned good about myself that I did it.

The exhaustion did not come from the physical exertion, it was more the strain on the brain. So, why did I do it all myself?  I could have awakened my husband to help or called my sister, but I believe that would have made it worse. My brain was already strained from trying to attack the problem in a logical manner: get things to safety, find the mop, bucket, towels, rags and anything else that could sop up the water. I turned the dehumidifier on to Turbo mode, set up a couple fans. I then attacked getting the water out. I did it and was feeling pretty good that I had done it.

I could have called my sister and had them come over with his wet vac and to help move things. I knew they wouldn't mind being drug out of bed and driving here. The problem with that is that I would have to coordinate things. I would need to think of what I should do, what everyone else could do. My brain would not have been able to do that. Also, the laundry room is not a large space, maybe 12x20 feet. Adding that many people into the room would have me feeling trapped.

That is why I had to do it myself. Did I do it exactly right? Probably not. Throwing everything made out of fabric that I could put my hands on in to soak up the water and then dragging them outside to dry out was not the best decision. Perhaps someone else might have thought to put them in the washing machine that was sitting right there and put them through the spin cycle. Perhaps using a wet vac would have been more efficient. Yes, but! I would have been a basket case that would have caused a set back for at least a couple days.

By doing it myself, I avoided a breakdown and ended up feeling pretty darned proud of myself for getting it done. This is an extreme example, but the premise is the same for anything. Some times, allowing the person with FTD to do something themselves might cause additional work for the caregiver, but is much preferable over an argument about it, one that could get nasty and lead to hurt feelings on both sides. 

I am not saying to let someone with FTD do everything themselves, but when it appears to be possible for them to do it, why not let them. When a caregiver, family member or friend says "I could have helped you, you should have called," let it go at that. Don't keep repeating it or arguing that they should have called or asked you to do it. When someone does that to me, what I hear is "You are not capable of doing it yourself." Don't you think it would be better to say something like "You could have called me for help, but it sure looks like you got it done."

In other situations, if you realize that the FTD'er wants to do something on their own, as long as it doesn't present a serious danger, why not let them try? "Okay, go ahead but if you run into trouble, I'm right here to help." sounds much better than "No, you can't do that, you will make a mess of it." One hint, though. Don't let someone like me use the superglue. I spilled some on the counter and thought I could wipe it up with my hand. Enough said about that!

I give my sister and brother-in-law credit. They stayed away the day of the flood, but the next day, "impulsively" stopped by to bring me some tomatoes and peaches. They never added "and to check on things."

On to the second question. "Why do you let him/her just sit there with the tv on, not doing anything?" Another one is, "Why do you let her/him sit there and take naps all day." There are a lot of ways of asking a similar version of the same thing, as you can imagine.

If you will allow me to wear my caregiver hat for a while, I will try to explain it. My husband, who has Alzheimer's, always loved sports. I used to say he would watch turtle races if they were on tv. I actually saw him watching lawnmower racing once. He still insists he loves sports and is quite happy if I let him sit in his recliner watching them. He doesn't always understand what is going on and gets confused, but he seems to still enjoy watching. Yes, he nods off quite often, but he needs the rest. He still sleeps at night. He is not interested in anything else, but, to me, so what? To me, it is all about quality of life. He is happy, that's my biggest goal, to keep him that way.

Now, back to wearing the hat of someone with FTD. We need a lot of sleep. As I often mention, our brains seem to need more sleep than our bodies do, and our bodies need a lot! We also tend to know what we can do on any particular day. I can get out of bed in the morning and tell you if I can do things that day or if I just need to sit around doing nothing. Days when I feel like I can't do anything are usually days following a day when I did too much. Too much can be going out shopping, entertaining visitors, anything that requires my brain to do a lot of work. We have to learn to listen to our bodies and brains so that we can learn when to stop and do nothing. Pushing ourselves too far can cause a worsening of symptoms. Fortunately, most times we bounce back after a couple restful days. 

It really helps if caregivers understand this so that they can schedule a day or two of downtime following a day of doing more than usual. If that isn't possible, it helps if they at least understand that the next day will likely bring out the cranky, grumpy and disagreeable FTD'er. Yes, I do realize how difficult this can be in real life. I can't tell you how many days of trying to make it through a day with FTD after being exhausted taking care of my husband. 

One of the best parts of my day is in the morning, taking an hour for myself before my husband gets out of bed. I drink a hot cup of coffee, read the newspaper and enjoy the peace and quiet that someone with FTD needs. As long as I don't find water in the basement along the way.,,

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.