Reining in the Advice

I have learned to try extremely hard to not tell anyone dealing with FTD what they should or must do. I will relate my experiences with the issue and offer suggestions that I think just might help, but not what they absolutely must do. The only exception is to members of my patient support group, especially those that I know well. Even with them, it is only when I feel very strongly that something that has worked for me just might work for them. It's tough for me. I have been a "fixer" all my life. I have always done what I could to fix other people's problems even to my own detriment. 

I have not always been careful to only suggest or explain that something worked for me. When I first joined the FTD support groups, I would be a little stronger in asserting my advice, perhaps obnoxiously so. I do have more experience than many (don't get mad yet, I said more than many, not all) after being a caregiver for my grandmother, mother and then my dearest, dearest aunt (My name for her was "Favorite Aunt" never just "Aunt"). I actually was diagnosed myself while still caring for my aunt. I picked up a lot of ways of coping as each one came down with the diagnosis... learning by doing. I, of course, then learned ways to cope with it while having the disease myself. I know what I would want my family members and caregivers doing for me and what I definitely don't want them to do.

So, yes, I have experience with FTD. I know what FTD can look like, and feel like, to a caregiver. I know the feeling of frustration because there is not much you can do to make it better. Since there is not any treatment for the disease, we have learned to deal with the symptoms. I understand the feeling of hopelessness at not being able to fix things. I also understand the absolute fatigue that caring for someone brings with it. In fact, I cannot even imagine how anyone is the full time caregiver for someone with FTD when they have others at home to care for, such as children.

I have the very utmost respect for at least 90% of the caregivers I have come across. Plus, I do still have respect for the remaining 10% because I am sure they are doing everything as well as they can,  everything they know how to do or have the energy to do.  There are many caregivers out there who do a better job than I did in this role. Many times, when reading the postings on support groups, I think "Wow, I wish I had known to do that." Other times, I think "Wow, I did that!" I make use of many of these suggestions now, while caring for my husband and his Alzheimer's Disease.

As usual, I have talked all around the subject I intend to focus on here. What frustrates me is when other people insist that they understand how FTD affects those of us with the disease, all the "best" approaches, what we are thinking when we do or act a certain way and how it must be dealt with. Often times, it is no ifs, ands or buts considered, this is the way you must do it or a strong assertion that they understand what the patient is thinking and what will fix it.

Having a vast knowledge and understanding of FTD does not make someone know what we are feeling or thinking. They can guess or they can empathize (because they still can), but they can not truly understand how we feel. 

Let me stop for a second, I am NOT belittling caregivers and I do not mean to insult them. When I was a caregiver, I thought I knew what my loved ones were feeling and dealing with. Now that I am the one with the disease, I realize I had no clue. Also, I know many out there don't like the term "patient" being used for those of us with FTD, but in this case, it just seems to be the best way to differentiate care giver from the one who has the disease.

It is extremely difficult to convince many caregivers that we are not purposefully doing things, especially not to just "irritate" and "be difficult." Most of the things that grate on my caregivers all stem from the utter frustration of the disease. If I shove my food away or refuse to eat it and go have cookies instead, it is not "being difficult." It is total frustration. Frustrated because nothing tastes like it used to. It's not as spicy as it used to taste, or, it is spicier than it is supposed to taste. Same with sweetness and overall flavor. It all just tastes the same or, as a friend describes it, "Food is yucky!" The best way to describe it is to ask you to imagine if you were incapable of fixing your own food and the one providing it feeds you nothing but plain cream of wheat. That's what you eat for all your meals for weeks on end. How likely are you to reach the point that you can't stand it anymore and refuse to eat it or shove it away? 

As for deliberately laying out a plan to just irritate the caregivers and loved ones, I would be surprised if this was truly the case. I know that I am not capable of doing that. I cannot even remember that if I put toothpaste on the toothbrush, it will work better. Without executive functioning skills (one of the first things FTD usually steals), it's nearly impossible for me to think "Gee, if I did this and then that, I'll bet s/he will get really upset and that will be fun to see." 

FTD limits what we can do and where we can go. For me, I can no longer go outside and walk around, unless I stay on the deck or driveway. Like a child, I cannot go near the street. I did that once and almost got flattened by a gravel truck. There were more episodes, but not quite as dramatic as that one was. As a result, I cannot go down the street and visit the neighbor's adorable dog or even go to chat with that neighbor. I cannot even go across the street to get my mail from the box. Unless my caregiver has the time, energy and desire to take me somewhere, this house is my prison and I am trapped.

Feeling trapped causes many hours of just feeling total frustration. I do not communicate that I am feeling this way, mostly because I often don't realize myself what is bothering me. I just know I am feeling angry and stressed. Many times over the past few years, I have sat in "my spot" of the couch and was restless and uncomfortable. It took me hours and even days before I realized that the pillow I put behind my back is missing. It was something as simple as that that had controlled my anger and behavior. 

My sense of comfort, as far as ambient temperature, is totally off kilter. I can be freezing for hours, then all of a sudden, I am peeling off clothes because I am so hot. The temperature in the room has not changed one bit, it is my perception of the temperature that is changing. It feels like going through menopause again, several times a day.

Many days I feel like I am trapped in that virtual prison. I cannot go anywhere without assistance. It feels like someone else is controlling the heat and changing it all the time. I need to eat food that has no taste (unless it is sweet enough). I feel like there are no visiting hours at my prison. There is no entertainment either.

I am one of the rarer ones with FTD in that I can still read. I am limited though and can't read what I used to. I cannot read books with any complex plots, nothing that puts me on edge like action or mystery books and it must be written in a simple style. I used to call these "fluff books" and never read them. I can watch television for about 30-45 minutes at a time, and no more than twice a day. After that amount of time, I become overstimulated, cannot sit still and cannot no longer follow the show. If I am in control of the remote, I would constantly change channels, not to irritate anyone, just to try to make it so I can focus. If there is more than one other person or any other noises in the room, I cannot even read or watch television as I cannot focus on the stories at all. At best, this will make me restless. Worse, it can also make me angry and I will lash out at others. As I said, it seems that in my prison, someone limits my entertainment. 

If I want a sweet snack, because I have this intense craving for sweets and/or carbs, I cannot deal with looks like "are you sure you want that" or anyone saying "you don't need that" or "you know you are putting on weight." I hear many caregivers suggesting to others to lock up the junk food so that the patient cannot get to it. To me, that would be like denying an addict his next hit. If I cannot satisfy that craving, I guarantee you that I will be uncooperative, restless and angry.

I hear others with FTD describing some of the symptoms and feelings that they are dealing with and I cannot imagine feeling those. If I, with FTD, cannot understand, how can someone who has never experienced the disease truly understand. They can empathize or sympathize or try to imagine, but they cannot know.

It is not just caregivers, it is anyone we come in contact with. It is experts who have studied dementia and studied FTD patients and the disease. They can make an educated guess based on those studies and their work experience to come up with suggestions as to how it can be dealt with. However, they must also remember that no two cases of FTD are the same. There are no firm answers as to why someone is acting in an unwanted way. There is no way of feeling what is driving them to "act out". There are so many reasons that someone can be restless or frustrated or angry that you are left again with an educated guess. I wish, though, that they would remember that suggestions are fine and theories are fine, but there is no absolute answer. A medication that works for one patient may have the opposite effect on the next one. A coping strategy that works for one may not work for the next or may even make the problem worse. I do not want to lessen the importance and value of these experts. Most are awesome and extremely helpful. I also need to point out that when I read a suggestion and think "I would never allow my caregiver to do that to me!" It would, of course, influence my thinking on this subject.

I must also touch on those who really do not understand the disease at all. Those are the friends and acquaintances who tell you that there is nothing wrong with you, that you seem fine, or you have to pray harder or you have to concentrate harder. Then there are the ones who suggest vitamins and supplements or strict diets. So, if I eat right, take my vitamins, concentrate and pray more, I will be "cured."  Hmmm... I wonder if the researchers have checked that out? 

Bottom line, I will continue to make suggestions to all who are dealing with FTD. I will also relay strategies that have worked for me, both as a caregiver and as a patient. That is all I am qualified to do and that is all I should do. Except when the patient is in danger, then I will scream my advice to high heavens!

No Rhyme Nor Reason

Sometimes, there is no reason why a person with FTD does certain things. It is very difficult for that person to deal with the issues FTD brings. It is also difficult for the caregiver because they want a reason why it is happening. Some times, there is no reason... no rhyme nor reason.

The question "Why is s/he doing this behavior?" is one I frequently hear from caregivers. I wish there was a concrete answer. I can almost guarantee you that someone with FTD can not always answer the question either.  Some times the behavior is so frustrating to the caregiver that they become too frustrated themselves to deal with the situation calmly. Then it can become that vicious cycle of each person's frustration growing until it reaches a boiling point.

It can be little things. For instance, why do I need three pens next to me in the family room and at my computer as well? I actually do know the reason for it. I am most comfortable with one type of pen for making running lists, like the grocery list. I like another one for writing notes, signing birthday cards, etc. Then, I need a third type for doing my puzzles. Of course, there is also a highlighter and a mechanical pencil. I panic when I cannot find the proper one, sometimes until I am screaming, throwing things and accusing people of taking them from me. Does this particular intense need make sense to anyone else? Most likely not. Does the fact that I over react make sense? Of course not. 

Did you notice that I used the term "intense need" when describing the situation? That is what it is. There is no way anyone is going to convince me that I don't need them all. It is not simply a quirk or habit. Before FTD, I would just grab something out of the drawer and write with it. Even a crayon would do in a pinch. Now, I go into panic mode to the point that I exhaust myself.

Why does someone with FTD no longer want to leave the house, even to go to places that were their favorites before? There is, most likely, no way you will get a logical answer from the person with FTD. It could be fear of leaving somewhere comfortable. At home, you know where things are and, for the most part I hope, there are not judgmental people there to make them uncomfortable. To go out, you must deal with different noises, more people than you are used to, people who look at you trying to figure out "what your problem is" or a fear of acting inappropriately or getting lost. These are just a few possibilities.  Odds are fairly good that if you ask the person why they don't want to go, they won't be able to tell you.

Some days, I cannot find it in me to go out of the house and deal with people or circumstances. Other days, I will be in the house going stir crazy wanting to go somewhere or do something. It can be a difference in energy level. It can be that I did not sleep long enough, was awakened by too many dreams or nightmares or even that I slept too long. It can be that I did nothing but eat sweets the day before because the intense craving for sweets and carbs was that strong. It can be that I am depressed and frustrated from dealing with the symptoms FTD is blessing me with that particular day.  If you ask me why I don't want to go out, I most likely would not be able to give you an answer. I would probably yell at you that I just don't. I don't know myself so how can I explain it to anyone else?

Food choices can be another clashing point. "Why won't you eat this dinner I fixed, you loved it the last time?" Did I? Maybe I do not remember. Maybe my tastes have changes? I find that I usually have to over season food in order for it to have any taste to me. Other days, I don't want things seasoned. One day I will like a certain food, other days I detest it. Fortunately, I am still able to cook if I pay close attention and don't grab hot pans out of the oven without potholders or stick my finger in a pot to see if it is boiling yet. If I could not prepare my own foods, I can definitely see how this could become a major battle. I can understand it because I live it.

As I have mentioned many times now, my husband has Alzheimer's and I am struggling to be his caregiver. I can push myself to make something for dinner that I know he likes. Then, I will end up watching him re-season everything, spend enough time cutting everything up that I am nearly finished eating by time he starts and, the worst one, will scrape part of his dinner into the trash even though it used to be his favorite food. This is one time that the apathy brought on by FTD is helpful. I don't care if he likes it or not. It's what is for dinner and that's it. If I were to fight with him about it, it would certainly do no good. If I were to let it bother me and feel insulted like I would have before FTD, it would be a disastrous situation for both of us.

When a caregiver asks why their loved one is doing something or resisting something, they want to hear a concrete answer. The only answer is "Who knows?" We can guess what it is but, since the one with FTD doesn't even know, it really would be just a guess. The best thing to do is distract or to not try to explain things too well. Instead of asking "Do you want to go with me to the store?" say "Come on, time to go to the store." Don't discuss it with them repeatedly. It will just allow more frustration, anger and resistance to build.  

If you must take the person with FTD out somewhere and they are seeming apprehensive, frustrated or downright belligerent there are some things to try. Take along something they are familiar with, such as a blanket, for in the car.  Some have great success with weighted blankets. Try taking something along to keep their hands busy. This can be a great relief if they are feeling frustrated or apprehensive. You could try a squeeze ball, a fidget spinner, or just about anything that requires finger movement. It can be a great distraction tool as well as allowing them to release negative energy. Another suggestion I have heard is a memory book. You can put family pictures or pictures of places and things that they can relate to into a small, sturdy, photo album. Only give it to them in the car so it is a treat for them to look at. This one caught my attention when I heard about it because I used the same idea successfully with my toddler years ago. I would not have thought about it for using with FTD but can see how it might work. 

The bottom line is there are no absolute answers. Every case of FTD is different and they do not follow a particular pattern of what happens or when. Every person is different and reacts to things differently. All you can do is to try any ideas you can think of. Try not to argue, it will just escalate things. Try to not get so frustrated yourself that you can not deal with the situation calmly.  I do understand how difficult these two things can be but it's the most helpful thing you can do.

Above all, please, please, please try to understand that the things you feel are being done deliberately are most likely not.  Loss of executive functioning (the ability to plan and manage more than one thing at a time) is often one of the first abilities stolen by FTD. Speaking for myself, I am not capable of planning or implementing a plan to irritate my caregiver. "If I do this, it will really get to them." is not even possible for me. To even relate that the way my caregiver is reacting is due to what I have said or done, is not often within my abilities.

Again, no two cases of FTD are the same. I can sit here and write this blog every week and it comes out making at least a little sense. Others with FTD may not be able to, but there are a lot of things that they can do that I cannot. That is why I cannot give you concrete advice on how to deal with certain situations. Your situation isn't going to be exactly the same as anyone else's. All you can do is try to understand where their need is coming from and try to come up with things that might work. If it doesn't work, take a deep breath, count to ten, and try something else. If nothing works, whatever you do, please don't fall into the guilt trap that you must be doing something wrong because what isn't working today may just work tomorrow.

Finding Joy In the Little Things

One of the things that I have learned, while dealing with FTD, is to learn to recognize and appreciate the little things. It isn't long until a few little things add up and can actually be uplifting. Sometimes, though, you have to dig kind of deep to find them.

I like coffee. I absolutely love lattes. A few days ago, it was time for our car to receive it's state inspection. I went along with my husband because he gets so easily confused. After dashing into the service desk, I managed to get the paperwork done before he came in and confused everything. We walked into the waiting area and sat down. He got up and went to the bathroom. He got up and went out to the showroom to look at the cars. He got up and checked out all the magazines. One of the other women started laughing, then apologized and said she knew it wasn't funny, but that her husband does the same thing. Her sharing that relaxed me because I realized that we were not being judged unkindly. She suggested I have a cup of coffee and relax. I went over to the coffee counter and low and behold, they have added a new coffee system that makes fairly decent lattes. Such a treat!  They certainly were not Starbucks quality, but pretty darned good. So I sat with my new "friend" and chatted over lattes until the car was ready. My husband eventually settled down into an easy chair with a magazine. I didn't really have to dig deep to find that good thing and it always makes my day when someone makes a kind gesture. I'm sure she had no idea what a good thing she did.

Thursdays are typically our errand day. We try to group them into one day to eliminate car trips. Three good things happened this particular Thursday. First, we stopped at CVS to buy some vitamins. Of course the ones we needed were on the very bottom shelf that was even with the floor. They were mixed up, so I knelt down on the floor and successfully found what we needed. Every once in a while, my FTD brain does not get the correct signal to my legs and they will not move properly. Of course, it picked then to do it. I tried to get up using my cane. I tried to get up with the cane and my husband providing support. I did not want to push up on the store shelves, because I figured they might not be strong enough. I finally crawled to the waiting area by the pharmacy (fortunately we were only about 10 feet from it) and pushed myself up using my arms. Once my feet hit the floor and I stood still for a minute or so, my legs moved properly. I exercise my legs every day, so it was not a strength issue and knowing that helped me to not be as embarrassed as I could have. The good thing was that two employees came out from behind the prescription counter to see if they could help. They even offered to take me to the car in a wheel chair. They were so kind and gentle with me, that it renewed my faith that there are still good people in the world.

By a stroke of luck, our next stop was to my chiropractor who did a great job untwisting my back after the incident at CVS. She and I are friends and I am friendly with the other chiropractor as well. I must digress here. One of the only crafty-type things I can still do (hard to take when I used to be an artist), is to crochet nylon net scrubbies. These things are amazing, they scrub anything without scratching and they last a long, long time. I can still make them because they are also very forgiving when I make them and mistakes don't show. I had given them each several a  couple years ago at Christmas. They had never commented on them, so I didn't know if they had appreciated them or not. Then that day, they both started asking if I still made them or could I and could they get some. Can they get some? I believe they can. I give them away all the time and still had about 100 on hand. So next time I go in, they get a big bag full. It frustrates me so much that I can no longer do the artwork that I used to do and often get angry at FTD for stealing those abilities. Their raving about my stupid little scrubbies and begging for them made me feel better about myself than you can imagine. It's a little thing but made me realize I can still do something worthwhile! 

Another stop was at our local pharmacy to pick up a prescription refill for my husband. I was exhausted (we had already made six stops during this trip) so I asked him to go inside by himself. They know us well there, so I knew if he got confused, they would help him. While he was inside, a woman said hello to him. He could not remember her name, but did remember she was from our church and used to be a librarian. She is very active in the women's group that I still try to attend. She asked him about me and he told her that we were parked around the corner and up half a block. She came out, practically skipping, with a big smile on her face. She seemed genuinely happy to see me and stood outside our car, in the wind and cold, chatting for about ten minutes. Like so many of us with FTD have discovered, friends and family disappear from our lives as though they think it is contagious. While she did not say "Hey, how about I pick you up one day and we can go to lunch?" she seemed genuinely happy to see me and getting caught up a bit.

These were all "little things" and years ago, before FTD, I probably would not have thought anything about these or things like them. Like I said, I had to dig a little deep to recognize them and to allow myself to feel uplifted and I did.  I am sure none of these people, looking back on their day, thought "Gee, I did a good thing for Cindy today!" but they certainly did. When I added up those four seemingly small things, these people really made my day and put a smile on my face.

Whether you have FTD or are a caregiver, try searching for those little blessings. Maybe you saw a robin in your yard and realized that Spring is not too far away. Maybe you watched a squirrel bounce around the yard, or the sunset was pretty or just that someone went a little out of their way to help you with something. Maybe you just got a 30 minute respite. When FTD has stolen so many good things from our lives, if we pay attention, just maybe, we can find enough little things to add up to a big good thing.

Which Hat Must I Wear Today?

This week, I have been wearing my caregiver hat. It is a difficult one to wear  because it doesn't fit me very well. FTD seems to have caused it to misshapen. 

I was a caregiver for my grandmother, my mother and my aunt. I did a pretty decent job of it, at least I think I did. I had more patience with them than I knew I was capable of showing. I still say that what worked was mostly common sense, not being afraid to try new things, treating them with respect and loving them. 

Now, I am the primary caregiver for my husband who has been diagnosed with dementia, probably Alzheimer's. Yes, it is a totally different disease, but many of the difficulties are the same. The problem with caring for my husband is that I am dealing with my own FTD. He had been my primary caregiver for several years, but things have changed drastically. He still tries to do as much for me as he can. I honestly cannot say which one of us has the worst end of it.

I'm going to go back to what I said I thought was involved in my past caregiver roles.  Common sense was a huge part of it. That involved coming up with creative solutions to problems as they made themselves known. Moving unwearable or non-seasonal clothing out of the closet helped make them dressing themselves easier. Using elastic shoelaces made putting on shoes easy as well. Getting a simple clock that showed the time clearly helped their comfort level. Nightlights were put all around the house, especially the ones that kick on as someone moves about. Unfortunately, I no longer have much common sense. Sitting down and coming up with solutions can be pure frustration. Explaining the solutions to him can be nearly impossible. I know what the solution that I came up with is, but have no ability to explain it to him. In addition, he lacks the ability to understand when I do explain it.

Not being afraid to try new things? Doesn't that apply to  just about everything in life? Unfortunately, life with FTD doesn't allow me to have much flexibility. I need my routines. I am most comfortable when my schedule is the same each day. Trying new things requires the ability to, not only come up with something new that might work, but figuring out how to do them. A simple disruption to my schedule, such as a doctor's appointment, exhausts me. It is not so much physical exhaustion but rather a mental exhaustion. My brain just won't work for the rest of the day.

Treating him with respect can be really difficult for me. Like I said, FTD has stolen nearly all of my patience and ability to cope with any changes to my own routine. My husband's dementia makes it very difficult for him to comprehend just about anything. This, of course, makes it necessary for me to explain the same thing repeatedly. By the third time, I am screaming it. If a fourth time is needed, forget it. You can then find me sitting somewhere rocking my body to try to calm myself. This is usually paired with my repeating over and over to myself, "I can't do this, I can't do this..." 

A good example happened yesterday. I mentioned to him that my friend in Philadelphia posted on Facebook that because of snow, rain, ice and wind, there were so many accidents that it took her, instead of the usual 20-30 minutes. 2 1/2 hours to drive home from work. I then went in to take a nap which is unusual for me, I will admit. When I got up, he asked me if I was lying down to put ice on the spot on my chest that the doctor had frozen off. I was totally confused and asked where he got that idea. He answered that I had said something about ice before I went in. It took me a while to figure that one out. The most frustrating part is that when I explained the non-connection to ice on the roads in Philly, he spent the next hour trying to convince me that it was me who was confused.

Loving him is the easiest part. I have had to walk away from "friends" who keep telling me that I should leave him. Uh, what? I answer with "Remember that part about 'in sickness and in health'?" I will admit that when I end up yelling at him because my patience is non-existent, I feel intense guilt. Even though it is instinctual and I cannot stop my reaction, I feel horrible that I could scream at someone I love so much. But, no, leaving him is not something I would do. I have heard many who are caregivers to someone with FTD relaying a similar story.

With FTD, I need to be surrounded by calmness. Alzheimer's does not allow my husband to be calm. He is on two medications to reduce his agitation, but they are not a cure-all. He tends to obsess about things. For instance, earlier today we heard a loud noise, as if something had fallen. I did a walk around the house and did not see anything. I even went through the basement and garage. I figured that as long as I did not find anything in a dangerous condition, we would eventually find it. He could not do that. He kept walked around obsessively looking in every nook and cranny. After about an hour, he found that a closet rod had fallen. Unfortunately, he had no desire to try to fix it. He suggested that he doesn't wear any of that stuff anyway so we should just toss it all. I had to point out to  him that many of his shirts were hanging there, along with his dress clothes. I still could not convince him that we should not just throw them all out but I will prevent it.

I finally convinced him that we would deal with it later and closed the closet door. Now, later today or tomorrow, I will have to find the strength to go in and move all the clothes. Then, the tough part. I will have to try to figure out what broke or caused it to fall, then come up with a remedy. In addition, he will be there, pacing around, fussing about what we should do.

A year or so ago, when he discovered the rod was down, he would have immediately moved the clothes to another closet, looked at the bar to figure out what broke and would fix it. What would have been a 30-minute task back then will now be a two day ordeal. It is disruptions to my normal day, like this one, that throw me off course. 

Our circumstance definitely proves that FTD and Alzheimer's are not the same thing. It also proves that being a care partner is not an easy role, no matter what your situation and circumstances are. I have always had great respect for caregivers and their role, but that respect has grown tremendously over the past year. 

I have also learned that I am not alone in my circumstance. There are many who have FTD that are also serving as the full time caregiver for a loved one. There are also many caregivers that are caring for more than one loved one at the same time.  Time to quote Tiny Tim... "God bless us, everyone."

Apathy and Loss of Empathy Strike Again

I promise that this is going to be my last blog entry about the loss of my uncle. At least I hope it is. Waiting two entire weeks between the day he passed until the funeral service was very difficult for me. Because, for the past year, I had been calling my aunt and uncle once or twice a week if they did not call me, two weeks of going to pick up the phone to call him triggered my grief over and over again. I did, however, talk to my aunt at least once a day throughout these two weeks. If I didn't call her, she called me. We did not talk for long because she didn't have strength for a long call. I believed I mentioned it in last week's blog entry, but she has cancer that has spread into her brain and is in hospice. She is moving into a care facility tomorrow, which I guess is a good thing. I wish a way could have been found to keep her at home like she wanted, but she is going into the move with a positive attitude.

As my aunt's cancer spread further into her brain, her symptoms became nearly identical to the ones I am dealing with as my FTD advances. I was often able to "translate" what she was growing through to my uncle and explain why she was wanting or not wanting certain things. I had also been able to come up with a few ways for them to cope as her disease progressed. Two of the biggies I had explained to him were apathy the loss of empathy. My uncle's passing made these clear to everyone. At least 15 or 20 people came up to comment on how she did not seem upset, that it was just a thing that happened. 

When people would ask her how she was doing, she would respond "I feel like I want to cry, but I can't." Many of those who mentioned it to me were chalking it up to "maybe it hasn't sunk in yet." I explained dozens of times throughout the day that, yes, she does understand what happened and, yes, she is grieving in the only way she can. She misses him terribly and is lost without him by her side. It is simply that her emotions have been blunted by the cancer invading her brain to the point that the normal signs of grieving are not possible for her to feel or show.

Most people understood it when I explained it to them which was a relief. I am so thankful that they did mention it to me rather than to anyone else in town. (They live in a tiny, tiny town in an area of the state not heavily populated.) Hopefully, now, if anyone does mention that she seemed like she didn't care, others can explain it to them.

This issue has come up many times with others with FTD while they were dealing with funerals. Some have even resorted to wearing sunglasses so that people could not tell they were totally dry-eyed. I am saddened by all these stories. Rather than the families and friends learned about FTD they, instead, pass a judgement.

Just like most of the people I know with FTD are, this amazing woman was a trooper. Visitation was limited to just one hour and the priest did an abbreviated service knowing that it was all she could handle. She was accompanied by a hospice nurse, a volunteer and her sister. They set her up in a nice and comfortable chair. She was tucked up in one of the quilts she had made and the nurse was wise enough to put a medical face mask on her so that she did not become infected with anyone carrying flu or cold germs. She was also able to attend the luncheon for a short while as well. 

In addition to this experience being an excellent example of apathy and loss of empathy, it was a demonstration of other symptoms of FTD. One of the largest things FTD has brought to me is the aversion to any change whatsoever. It can be a change to my routine, the grocery store relocating items or even the change of seasons. I become greatly agitated, restless and, to be honest, extremely irritable. My FTD symptoms also worsen when dealing with any change. By the end of this day, I had survived the three hour trip to their home town, family squabbles, a crowd of people whom I had never met, the total feeling of being out of control and then topped off by the trip home. 

I was lucky though. My daughter had driven eight hours from her home to ours, then the trip up and back to my uncle's hometown, then turned around today to drive back to her home. She also knew how to keep me calm. Most of the time at the funeral home, she kept me sitting on an out-of-the-way sofa and letting people come to me. I did get up and make the rounds a couple times, to make sure I visited with everyone, but again, she was right by my side. At the luncheon, she immediately found us seats in the corner where there would not be overwhelmed by people being all around me. She went to the buffet and brought everything to me so I didn't have to be stressed by too many people near me. How did I get so lucky to have a daughter who understands me and FTD so well? I don't know, but maybe, just maybe, I did something right along the way.

She proves that there are ways for family and caregivers to make things easier for those of us with FTD. To me, it is extremely important for them to learn all they possibly can about the disease and what symptoms it may bring with it. Then when these symptoms develop with their loved one, they are prepared and don't conclude that they are doing it purposely or spitefully. If they have read or heard about how other caregivers have dealt with the symptoms, there is a better possibility they can react appropriately and help the situation rather than worsening it. I do realize that this is not always as easy as it sounds but it can help.

For all the caregivers and family members, please consider joining a support group. Many areas have live support groups for caregivers. There are also many online groups available. Just as I rely on my support groups for those of us with FTD, support groups can be a lifeline for caregivers. 

Honey vs. Vinegar

Quite often, when I sit down to write a blog entry, I will get a couple paragraphs into the subject I was intending to write about and then realize, "Nope, this isn't it." In fact, it probably happens more often than not. It's never that the original subject isn't worth writing about. It is just that I realize that there really is something else buried deep in my mind that is influencing my actions and emotions. This week is certainly one of those weeks. I was getting into the subject of how we can sometimes use our FTD to excuse things that perhaps we shouldn't. Then it hit me that perhaps sometimes there is an underlying thought process that causes me to do that.

This week, there were a couple incidents of people griping about something. I usually don't mind this since everyone is entitled to an opinion. It is when they start forcing their opinion onto others that I get really angry. Even then, I can usually brush it off after a short period of feeling the anger. To me, what it came down to in this instance was that we all have to accept that none of us can be perfect. Often, we are working our hardest to provide what we believe people might need but are missing some key things that others wish we would do differently. How are we to know what each other needs if we don't talk to each other. There is also the paranoia that comes with FTD and that does not help us to look at things objectively either.

There is a good reason why my great grandma always said that you can catch more flies with honey than you get with vinegar. People tend to react to things in the same manner they are presented. If you want someone to cooperate and address an issue you have, it is usually more successful to present it in a non-confrontational manner. If you give a few tastes of honey first, the vinegar of your complaint or request will usually be accepted much more easily.

There are times when you are reacting to something and you don't realize the underlying reason as to why that particular reaction is being triggered. I don't think very many members of my family read my blog, so I feel safe in giving more details than I probably should. 

This came into play in my own life this week. When my father passed away 25+ years ago, his baby brother, his wife and I grew extremely close and that just grew as the years went by. Last weekend, my uncle passed away. 

His death was not expected at all. I was in shock until I realized that he had become the full time caregiver for my aunt who had been fighting cancer for a few years. This cancer had spread to her brain and she and I had grown even closer as her symptoms and my FTD symptoms were quite similar. I came to realize that his death is a perfect example of "Who is caring for the caregiver?" The strain was just too much for his body to absorb any longer.

My aunt decided that perhaps now was the time for her to agree to go to the local nursing home. The hospice and home nursing personnel had all said that she could no longer stay at home alone. Her goal was now to clean out their house. They had lived in the same house for around 40 years or more and he had the same mentality as most of the men in our family, "Keep it, it might come in handy someday." They had accumulated a lot of family heirlooms along the way as well. I did think of one family heirloom that I wanted and she promised to try to find it. Still, I have been obsessing over all those things and feeling a tremendous loss that they might be leaving our family.

We used to talk on the phone every couple days, but now we are talking a couple times a day. Of course, with my FTD, I cannot get into the car and drive up there to stay with her, help with the house and help care for her until she gets to the nursing home next week. 

I finally realized that it is not all the stuff that I was wanting to have. I was trying to get back the connection that he and I had and to hang on to the one I have with her. With her moving to a nursing home, I  am having to accept that I won't have her in my life much longer either. I was even taking my obsession with their things a step further. I was wanting these heirlooms so that my daughter can remember her aunt and uncle, her grandmother and even me. 

I know she is not really going to want all the stuff from their house. She has some things that my aunt had already passed on to her and those are the treasures that will mean more to her than anything still remaining in the house.

In addition to realizing that missing him is why I was coveting all his things, I realized that not being able to go up there and help her was influencing more than I realized. 

For once in my FTD life, I actually did something right. Instead of going off the deep end about a stranger helping her clean out their house and worrying myself until I was sick, I called my cousin. She talked me down off the ledge. She also called their house and spoke to the woman who was now staying there with my aunt. It turns out my aunt had not able to explain to me the relationship between the two of them. It is actually a good friend of hers whom she has mentioned to me many, many times. There is no one trying to put a wedge into my relationship with my aunt and I can still cling to her even though my uncle is gone.

I was very proud of myself, instead of asking my aunt to keep everything or demanding to talk to and vet this woman, I remembered my paranoia. I called my cousin, the person whom I knew would be best able to calm me. To tie it back to the beginning of this blog, I was able to hang on to the honey and skip the vinegar. I would not have ever been able to forgive myself if I had spoken to my aunt, or her friend, in a confrontational manner about mere things. It is the love that I will cling to, not "stuff."

Needing to Care for the Caregiver

What do you do when your caregiver needs you to be a caregiver? It gives a whole new meaning to the term "care partner." When I first found myself in this position, I thought I was the only one. Wow, was I wrong! I have learned that many with FTD are also the primary caregiver for a loved one with a different disease. As you can imagine, this is not easy at all.

I usually write about living with FTD and I guess this still is about that, but let me go back to the beginning. When my symptoms started, my husband was right there to help out and support me. When I could no longer drive, he drove me to work in the morning and returned in the evening for the return trip and never complained about it. He already took care of most financial chores, but he took over all of them with no complaint. He started keeping track of all my prescriptions and filled my daily pillboxes for me so that I did not make mistakes. When I was fired from my job, he was right there with all the moral support I needed. That was six years ago.

As those years went by, I was getting extremely frustrated with him because his support for me was not what it used to be. When things would go wrong, it was always my fault. He either did not recognize his mistakes or was trying to cover for them. I really started resenting him because I was having to do more and more of the day to day chores even though I did not have the energy or even the ability. When I complained enough about how I could not keep up with the housework, he would promise to pitch in and help. When that never happened, he finally agreed to hire someone to help out with that. This was one of the best things he could have done for me.

I started noticing him struggling with not only the tasks he had taken over for me, but others that he had always done. I brushed it aside and figured maybe that is what happened when you hit your mid seventies. (He is 10 years older than I am.) It was finally too much to brush off when he was unwilling to accompany me to a biopsy procedure last year. This would never have happened anytime prior to this during our married life of 40+ years. I discussed this with our doctor and she asked that I accompany him to his next appointment because she had been noticing things as well. You have probably guessed it, she diagnosed 'dementia, probable Alzheimer's'.

I am always trying to educate people about how FTD is different from Alzheimer's. I now realize that, for us, this is probably a very good thing. The differences make it possible for us to work through things. Many of the things that I struggled with, he can still do.  The ones he struggled with were things that I am still capable of doing. I became the organizer, scheduling appointments and keeping our calendar straight so we got to where we needed to be when we needed to be there. Those were things that I could still do, as long as I paid strict attention to the details.

The most important thing that he has always done for me is supporting with the behavior part of Behavioral Variant FTD (bvFTD). He could, and still does, calm me down when I get stressed, over tired or start behaving inappropriately. He had learned to ignore the fact that I swore like a sailor and would have frequent meltdowns.

He was uncomfortable with giving up financial responsibilities even though we had a couple instances of him forgetting to pay a bill or two. The money was there, he just forgot. We came up with a compromise and now I open the mail and make it clear to him when something just needs filed or when a bill needs to be paid. He also agreed to not hold the bills until close to their due date, but to pay them as soon as they arrive. I double check later to make sure they have been. With this method, he still is still doing the actual financial tasks but with more confidence. I am not confident that this will work for a long time, but it's good for now and he is giving up responsibility just a bit at a time. He still sets up our pill boxes for the week, but I check them for accuracy afterward. I do not know if he realizes I am doing these things or not, but it is working. I know that one of the worst things about learning to deal with FTD was the feeling of lost dignity. I want to prevent that from happening for him.

Now that I know, and he has finally admitted, that he also has dementia, things are working more smoothly than they were. Now, when he tries to say that I must have mixed things up or made a mistake and I know that I have not, I am better able to deal with it and not have a meltdown because of it. Oh, I do still have meltdowns. It is a wonder there are not holes in the walls and doors. It is a fairly common event for me to be banging my head on the wall or, fortunately, the much softer back of the sofa. I end up pounding the doors out of frustration. At least it is a slapping rather than punching. He is unbelievably calm during times like this and is able to calm me fairly quickly. Yes, I have given myself a lot of headaches and sore hands.  Fortunately, these meltdowns are not more than a one or two a week. We have been able to deal with the problem without resorting to any of the medications that many with bvFTD need to take... so far, anyway. I hate taking any more meds than absolutely necessary.

We have elected to not start my husband on the Alzheimer's medications. Being aware that it does nothing to stop the progression of the disease and only helps delay some of the symptoms, we decided that it was not worth the side effects for him. Many of the side effects are things that he could not deal with.

We are coping with managing our two forms of dementia and learning how to deal with it on a day to day basis. Of course it isn't easy, since my FTD changes from day to day. Talking to others with FTD who are also caregivers, he and I are not anything special. It adds more frustration for all of us. As I have talked about many times, FTD steals the filter between brain and mouth, so we struggle with being able to speak and act appropriately. Being a caregiver is one of the most stressful jobs there is and it takes a huge amount of patience. Well, guess what, those of us FTD don't have that anymore. One person who is in my position goes for a lot of walks instead of melting down like I do. Going for walks is not an option for me, but once the weather improves, I will at least be able to go outside. Sitting on the deck in my rocking chair and soaking up some vitamin D is soothing to me. I have also gotten quite good at pacing around the deck. I guess it's a good thing that we have a sizable deck and sturdy enough that my pacing has not worn any paths yet.

Another huge obstacle is the ever present lack of empathy. It is difficult to be sympathetic toward the other person's difficulties coping with their disease when you just don't care. I struggle to remember that his form of dementia is just as frustrating to him as mine is to me. I still don't care very much, but at least I am able to recognize that it is.

We each have a place of our own. I moved to a separate bedroom several years ago so that my sleep disruptions did not keep him awake. I also have my little "office corner" in that room so it is a place where I can retreat. He also has his "man cave" downstairs with his desk and all his "stuff", a comfortable place to sit and a TV to watch. When the day comes that I can no longer read, I will probably have one in my room as well.

Our poor daughter calmly listens to me every evening when she calls. Then she reminds me to breathe and we are usually able to laugh. Some days I feel guilty dumping my problems on her, but she, being the best daughter in the world anyway, insists it is her way of helping. See? Best daughter in the world!

Letting Go of Guilt and the "I Shoulds"

It won't surprise you at all when I tell you that I visit my online support groups every day. It is what keeps me sane most days. Recently, several comments were fairly similar. They were either questioning why or lamenting that they can no longer do the things that they used to. The energy and/or desire is no longer there, but it seems to have been replaced by guilt.

I will admit that for quite a while, I also fell into this trap. I had no desire to do many things and no energy to do the ones I wanted to. I felt oh so guilty all the time. There were days when I would just sit on the couch and stare out the window for the entire day, then tell my husband I was too tired to cook dinner. Then I would feel guilty about that and it would spiral from there.

Guilt is self defeating, without a doubt. If you have no energy, it is a real thing. Add in the apathy that FTD brings, and you don't care if things get done anyway. Every day, I would tell myself to get up and do something, that if I did something I would feel better about myself. It would also get me moving. I still couldn't do it. I believed that I should do it. Some days I even wanted to do it. It didn't matter though, I still was not able to.

This inertia was not due to depression. but I did start feeling depressed that I was not doing the things I believed I should. My answer and my advice to all others with the disease is to avoid the "I shoulds". While I wish I could do even a fraction of the things I used to do, I have stopped telling myself what I should be doing. I no longer feel guilty if I want to sit and watch the birds or the squirrels all day or if I while away the day on the computer. Those things still stimulate my brain and that is what I think I need most.

There is a huge difference between "I should" and "I could." 

Keep in mind that FTD steals our executive functioning skills. How does this come in to play? Executive functioning involves the ability to plan and strategize. For instance, with me a big "I should" was always cleaning the house. This should have been an easy task... boring, but easy. Without executive functioning, that became a single task. I kept telling myself to get up and clean the house. I was not capable of breaking that down into separate tasks. Prior to FTD, I would have told myself, "okay, today we dust," then the next day "today we clean the kitchen counters." Cleaning the house was too overwhelming to even attempt no matter how much I believed that I should.

How self-defeating the "I shoulds" are. The more I believed it, the guiltier I felt and the more overwhelmed I grew to be. So, I did nothing. I have mentioned many times that I see a psychologist, one who specializes in dementia. She actually understands FTD, unlike any other doctors I have come across in this area. She finally convinced me of what I was doing to myself. I needed to replace shoulds with coulds. 

I was quite good at explaining FTD to others. I talked about it to anyone who would listen and I wrote about it for anyone who would read it. I talked about the inability to plan or accomplish complex tasks. I explained about the lack of energy, combined with the need for many more hours of sleep than ever before. I explained, but I had not fully accepted it my mind. After all, who wants to be that way? Often times, I unjustly would feel guilty for those things. It was so much easier to guilt myself into believing that I should still be doing everything, rather than accepting that I no longer could do everything.

The best thing she kept encouraging me to do was to hire someone to come in and clean my house. We have no pets and it's just my husband and me, so once a month has been often enough. I was lucky. We started out by hiring a cleaning service but then I found a lovely older lady who said she could do it. My insurance agent assured me that my homeowners would cover any injuries or even thefts. She does it for only $60. That is the best money I spend each  month. 

By removing this huge and overwhelming task from my "should" list, I was able to concentrate on the "coulds." I had not realized how much energy I was expending on feeling guilty. After I removed that burden, I could bake some cookies if it was a non-fuzzy brain day. I could cook more often, I could make that grocery list. I actually realized how I was defeating myself by not recognizing how complicated things truly are for the FTD brain. Now, if I want to sit on the couch watching the birds and squirrels all day, I no longer feel guilty. If I have a day when all I have energy I can come up with is to make grilled cheese sandwiches for dinner, I no longer feel guilty. If it needs to be a carry out day, it doesn't weigh on my mind.

I must say that my husband had never once complained about what I would make for dinner. He would not complain if I sat all day or played computer games all. Once I let go of the guilt, he saw the difference. While I still struggle to get him to understand that I can only do one thing at a time, e will now ask me if I am up to doing a needed task that day. Usually I am able, but sometimes it is just "one of those days." If I tell him it is a bad day, he will set it aside for another day. Sometimes, though, he tells me we must do it today but he offers to help me do it. I never accept his help, but that is a wholly different subject. It's a lifelong hang up of mine. He has learned that, when he can, he asks me to do something within a few days and will leave something sit out to remind me. Of course, sometimes, I need to ask him what it was supposed to remind me of!

Not everyone can spare the extra money to have someone clean the house or have anyone willing to to do it for them. In that case, I suggest sitting down and making a schedule. Write on the calendar, "clean kitchen floor," or "vacuum carpets." That way, you do that scheduled task and don't have to think about the next one. Remember, every task we do is really consists of many tasks. For instance, cleaning the kitchen floor is: move loose furniture from room, locate your bucket, remember which cleaning product is appropriate, read the label for how much to use, where is the mop and on and on. It is like that for nearly everything we do. What used to seem like a simple task probably isn't anymore. That is okay... one thing at a time. That mantra gets me through most anything. Well, except for assembling the so called "some assembly required" filing cabinet that I got for my birthday. That tale would take several pages to tell. It might make a good comedy show though.

I know I have focused on cleaning the house. That is because it was the biggie for me. It can also apply to anything you were able to do pre-FTD. It could be gardening, cooking, shopping or anything that makes you feel overwhelmed. Bottom line is letting go of the guilt. I found that, once I let go of the guilt I was putting on myself, I am more able to resist it when others try to put me on a guilt trip. I even have the ability to find the ability to say "no." Not often enough, but I am still working on it. Change all the "I shoulds" into two categories, "I can" or "I can't" and go from there. Don't feel guilty if you have a lot of "I can'ts." If you feel you have to defend yourself, when you say "I can't," add something "FTD won't let me."

Try, when you find yourself feeling guilty or thinking about what you should do, telling yourself (yes, I do talk to myself) "Just stop it, no guilt allowed!"  Another biggie is to realize that it really is okay to say "no."

I recognize that many will disagree with my way of dealing with the issue. There are those who believe that FTD does not have to change what you can do. I believe that is decent advice as long as you aren't doing it because you feel guilty. I don't think anyone would argue that feeling better about yourself can be healing.  It does interest me that most, though not all, of the people I see or hear advising this are not people with FTD, they are caregivers. 

I keep going back to the advice the neuro-psychiatrist gave on the day he gave me my diagnosis. He said that I don't have to set the world on fire, become a runner or push myself beyond my limit. He made me promise to walk the equivalent of one block every day and he would be happy. I am not sitting around doing nothing. I am doing everything I can and do try to do more. I do try to improve my diet by eliminating as many processed foods as possible. I just don't feel guilty if I can't do it or if some days I choose not to.

Depression and FTD

Depression can sometimes feel like an ugly monster who lies under your bed. You are afraid to deal with anything that requires you to get out because, if you do, the monster will get you. Depression can also make you feel like you don't want to do anything or deal with anything. It can also make it so that you cannot feel at all.

Most of the people I know, who either have FTD or are the caregiver for one who does, are on some type of antidepressant. I think all these people should be congratulated that they had the strength to admit to their doctor that they need help and also to recognize that there should be no stigma associated with taking them.

Years ago, I am talking decades, there was a stigma attached to antidepressants. If I remember correctly, most of the problem was that people did not understand how they work. They were nicknamed "happy pills."  This esd not a good description at all. These drugs do not artificially make you happy, they merely allow you to be happy. If you think about it, there is a huge difference between the two. 

I have been on and off anti-depressants for about 25 years. I first needed to have them prescribed after a tragedy within our family.  I was having panic attacks and mistook them for heart attacks. The ER got very tired of seeing me. My doctor got tired of me waking her in the middle of the night. (See how long ago this was, you could actually talk to your doctor during a health crisis in the middle of the night.) There were a few other times during the  years when I needed to rely on them as well. I had started on them again a few years prior to recognizing the symptoms of FTD. Now, I see that it was probably due to the FTD symptoms, I just had not yet seen them for what they were.

When I first started having symptoms of FTD, I got the misdiagnosis of depression from several doctors. As soon as they saw my history of depression, they jumped all over it. Fortunately, as I have written before, my family doctor knew me well enough to know this was something different. When I was struggling to get a proper diagnosis and one of the neurologists we had consulted was telling me that my issue was simply depression, I was furious. I looked him in the eye and told him it came down to the old cliche of "Which came first, the chicken or the egg?" I went on to ask him if he did not think that he would be depressed if he was facing the symptoms and issues of FTD.  Then he prescribed two of the alzheimer's meds and told me there was no need to make a follow up appointment. So, there we had two gross mistakes, not recognizing FTD and prescribing medications that are contra-indicated for the disease.

Since I initially took antidepressants 25 years ago, great strides have been made in the field. There are so many types now, some that I have not even heard of, that address other symptoms associated with depression, such as anxiety. After trying a couple others, my doctor went back to an older one, Wellbutrin, and a very old one, Trazodone. This one isn't even used much for depression anymore because its biggest side effect is excess drowsiness. That, in turn, makes it an excellent medication to aid with sleep disturbances. It was a blessing for me as it stopped me from experiencing the night terrors I had been struggling with. The Wellbutrin had the least side effects of all the ones we tried.

Now, I also mentioned that many caregivers also need to agree to using the antidepressants. With a bit of twisting, it comes back to the question I asked that neurologist, "How can a caregiver not suffer from depression?" It is a 24/7 job with very little reward. It takes its toll on the body and mind, both of which need rest that is not available when you are a full-time caregiver.

It is difficult for most of us to admit we need help for depression. We want to think we are strong enough to tough it out. Many whom I have discussed this with, especially the caregivers, are still reluctant to admit that they need help and are afraid of what people will think of them because they need to use the meds. You know what, I don't care what anyone thinks of me. I know I made the right decision to take them, even way back, 25 years ago. If someone who knows me would pass judgement on me by what medications I need to take, that is not someone I need in my life.

I got tired of bouncing around between lying in bed doing nothing, to having panic attacks, and screaming all the time out of frustration with the disease symptoms. There were probably other signs of depression, but that was seven years ago and I truly don't remember. I just knew that I could not live with myself much less expect anyone else to.

Now, for me personally, I also get great benefit from seeing a psychologist who specializes in dementia cases. She helps keep me on an even keel. For the past couple years, I have been down to seeing her just once a month. Knowing, though, that I can call on her if I need help, or that I can talk to her about it at our next appointment, keeps me from "freaking out."

I was going to write on an entirely different topic this week, but after a couple conversations I had with people struggling whether to take the antidepressant their doctors had prescribed, I thought this might be the time to talk about depression instead.

If you are feeling depressed, don't want to do anything, cannot relate well with others, or even can't find a reason to keep living, please get some help. A good place to start is simply with your family doctor. Why struggle when there is help available. If you are afraid of what someone might think, don't tell them, simple as that. Depression is a disease and is a symptom of FTD, not something to be ashamed of.

 

Mood Swings, Anger and Frustration

I struggle for ways to explain the mood swings that come along with FTD. They are not always as severe as they are at other times. They also are not triggered by the same things. Often, the trigger is unknown as there seems to be no rhyme nor reason.

One of the triggers is the same old "one thing at a time" issue that I harp about constantly. For instance, I continue to read the newspaper every morning even though it can be a struggle. Anyone with FTD will understand how it takes my entire brain even attempt to read. I can no longer just speed read through things like I used to. I think it should be obvious that I am intensely concentrating. Yet, inevitably, someone will pop up and ask a question, turn on the tv or start rattling things around. As I have explained before, that puts my entire brain into a black hole. It becomes impossible to focus on anything.

When I am in that black hole, while struggling to get back to making sense of something, anything, my reaction is to lash out. I know I have written about this many times. Picture me, sitting on the sofa, holding the paper in front of me. When interrupted, I will often start shaking the paper that I am holding, which produces a loud ruckus. I will also scream out something like "One thing, one thing!" Or something harsher like "Why the he!! can you not get it?" Eventually, I will answer the question. If it is an important question or time sensitive to a needed decision, I can pull myself out of it because I understand why the interruption was indeed necessary.

Most often, though, I cannot. Invariably, it is an inane question or one that could wait for hours, or at least until I finish a section of the paper. It doesn't even have to be a question, it can be any interruption at all. My husband likes to show me things. When he fixes a plate of lunch, he shows it to me. (Part of that is my fault, after forcing him to watch too many cooking shows on television, he is all about the presentation on the plate.) I don't care what he is having for lunch or how pretty it looks. I know he takes pride in it, but I don't care. I have FTD and I don't care about much of anything. Plus, the tiny bit of my brain that does still care about anything is busy!

When it is a completely unnecessary interruption, I cannot pull myself out of the bad frame of mind. I am angry that no one can understand that focusing on something is extremely difficult, sometimes impossible. That anger often remains and puts me into a really angry and foul mood for hours or even the rest of the day. If someone were to ask me why I was in a bad mood, it would be very difficult for me to trace it back to that one stupid interruption. I know I am mad, but don't remember why.

Wow, I am guessing you realize that this is a big issue for me by the number of times I write about it. It is indeed a common cause of frustration in my life, but there are many others.

Being trapped inside because of bad weather is another. I don't spend much time out of doors any time of year because of the risk of falling, but enough to prevent cabin fever. In winter, I cannot even go out and sit on the deck. Add to that, the shorter hours of daylight and I fall into a really bad mood, even depression. My husband actually understands this trigger. I spend much of my time in our family room that has a slider opening up to our deck. When it snows (Bear in mind we are in a northern state of the US where it snows frequently in winter.) he tries to shovel a wide path across the deck so that when I am looking out, I don't see the snow that so quickly adds to my feeling trapped. He also clears the way to fill the bird feeders and to feed the squirrels so that I enjoy watching the wildlife.

To combat the shorter days with less sunshine that a body needs, at least my body, I have a full spectrum light in our overhead light in the family room. The bulb rotates between all the colors of the spectrum. I keep it on a setting to fade from one color to another, otherwise the flashing of the color change can be nerve jangling to me. My husband has actually come to like the changing colors and I no longer feel guilty that it bothers him. Neither of these things is a cure, but they do help a bit.

The other biggie to affect my mood is lack of sleep. Sleep issues seem to plague most of us with FTD. Not being able to sleep or not feeling rested after sleeping seems to be the most common. This even becomes a safety risk because, often, when you cannot sleep, you get out of bed and wander around. Walking around the house when you are tired, perhaps disoriented or in the dark, is a much higher risk for falls. If sleep is an issue, it is time to discuss it with the doctor. There are many medications that can help. These range from the simplest, supplementing melatonin, to the more extreme and sedating medications. For me, we have found that Trazodone works best. It is an old medication, actually an anti-depressant, that is not used for that purpose anymore because it makes one so sleepy. Bingo! The other benefit from it is that I no longer wake up with night terrors in the middle of the night. Of course, like any medication, it does not work the same for everyone and it must be discussed with your doctor. It is a prescription drug, so that makes it kind of essential to talk to the doctor anyway.

There are, obviously, many more things that affect my mood. Some affect it for just a few hours, others can affect it for days. My old, tried and true, methods of dealing with a bad mood no longer works. I would always try to create something. I was somewhat of an artist in a few different media and a creative baker. This disease has stolen most of my abilities and those that remain are no longer relaxing, they actually increase my stress. The one thing that helps, somewhat, is to practice Reiki on myself. Even better is to go to the studio and get a certified practitioner give me a session, but that is not usually possible.

When others, not knowledgeable with FTD, pick up on the bad moods or depression, they are quick to offer advice. Some of the most common are that I need to pray more. I need to meditate. I need to take this supplement. I need more Vitamin B. I do believe in the power of prayer. I use Reiki as a way to meditate. I take a full regimen of vitamins. These truly ignorant people make me want to scream. If I attempt to explain that it is caused by my FTD, they look at me like I am the stupidest person on Earth. Then their response is usually something like, "I still say you need to ______ more!" Then they wonder why I avoid spending time with them anymore. Arrrggghhh!

I apologize for going on yet again about "one thing at a time" which is my mantra that I stole from AA's motto of "one day at a time." I should be glad that this seems to be my worst problem with FTD. Well that, along with difficulty swallowing, difficulty finding words or getting them to come out of my mouth, falling, loss of balance, difficulty completing most any task that involves for than one step, and on and on and on...

Hmmm... no wonder I am often in a bad mood.

First, A Tribute.... and then, Some Helpful Stuff

I am planning today to do something different here. I have some products that I absolutely must tell about. Please be patient and read on... I will get to it.

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First of all today, though, I must scrap half of what I intended to write about and pay tribute to a beautiful woman whom I was proud to call my friend. She was a friend to all who had any connection to FTD. Susan Suchan was just 60 years old. She, like many of us with the disease, was first misdiagnosed. She became a strong (I wish I could think of a better word, it was so much more than strong) advocate for the disease and for those dealing with FTD. She had aphasia as part of her disease which hindered her speech. It did not, however, hinder her from putting herself out there and talking about it to all who would listen. 

There was no disliking Susan. When I first met her, nearly two years ago, I knew that she would make a positive difference in my life. She taught me that it is okay to laugh at the disease and at myself. She got up in front of the AFTD conference to talk about FTD and welcome everyone to the conference. Her aphasia certainly didn't keep her quiet. My daughter and I had a great time with Susan and her daughter at the party following the conference. At one point, I felt embarrassed after spilling coffee all over the buffet table. Feeling humiliated, I went back to our table and told everyone what I had done. What did Susan do? She laughed. Then she laughed some more. She said something like "Honey, who the [F-word] cares?"

She inspired me to think that maybe I could speak out about FTD as well. That is why I write this blog, wrote the booklet "Coping With FTD" and became a volunteer for the AFTD. I put myself out there at local events to talk to people and give out information. Sometimes, my words don't come out right but, thanks to Susan, I don't care. I just keep going until I get out what I wanted to say.

I only had the privilege of knowing Susan for two years, but she gave me a lifetime of inspiration. As sad as I am feeling today, I am also happy for her. I know that she is no longer in pain and is up in a very special place in heaven. I have no doubt that she has already earned her angel wings and is looking down on us and telling us to laugh, not cry. I love you, Susan, and am so happy that I got to know you. I hope you know how much of a difference you made in my life! 

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Okay, back to the products. More than a year ago, I discovered a product called "Nok-Out." It is the best odor eliminator I have ever used. I have had success with it removing all kinds of odors from fabrics and other surfaces. It is not an "air freshener" as such. It doesn't work by spraying it into the air. It works by coming in contact with what stinks. My husband leaves a really funky odor on the sofa where he sits and on his bed clothes. I spray in well with Nok-Out and the odor is gone. Just this past Christmas, shortly before people were arriving, I realized I had forgotten to launder the throw pillows and they really stunk. I grabbed the Nok-Out and sprayed them liberally. No more funky smell. I use it on his bedding as well.  

I have also used Nok-Out on my clothing in an emergency as a quick fix after an accident. It took the smell of urine right out.  It felt a little weird until the Nok-Out dried, but that was better than everyone smelling me! Also, when some cats were visiting, one of them had an accident on the carpet. Yep, wet it down with the Nok-Out spray and no odor remained. It has worked on human accidents on carpeting and furniture as well.

You can buy Nok-Out directly from the company, on Amazon (of course) and major retailers like Wal-mart and Target. I bought a spray bottle of it and then a gallon directly from the company. You can mix it with up to 50% water and it still works well. I use the gallon water (I used about 25% water most often) to refill the spray bottle. Great stuff!

Now I have found another product, "Fresh Wave" laundry booster. You add a couple capfuls to your laundry and it takes out all kinds of smells. It is not cheap, so I would not use it in regular laundry. Instead, I keep the smelly clothes and sheets and wash them in their own load. To me, it is well worth the expense because I don't have to throw as many things out because of the odor.

Fresh Wave makes a lot of other products as well. So far, I have used the laundry booster, their odor removing air freshener (unlike Nok-Out, you can spray it in the air) and their "fresh pods". The pods are air freshening pods that you can stick up in diaper pails, laundry baskets, bathrooms, etc. I actually have my fresh pod in a ziploc sandwich bag and sealed. It  lasts longer that way (more than the month it is supposed to) and is adequate for our needs. All the Fresh Wave products are organic. It is available in all the same places that Nok-Out is. From Fresh Wave directly, Amazon and major retailers.

I think this is the first time I have written about products in my blog. I have read and heard comments, mostly from caregivers, so many times about the odor issues, that I thought I should share. Please bear in mind, I am just a consumer and don't make any promises that it will work as well on every odor issue. I cannot not promise color fastness, though I have not had that problem with anything. I can only say that both products have solved many problems for me. I love them enough that I wanted to let you know they exist, but you have to rely on their warranty because I don't have one.

Fibbing

I cannot in certainty blame FTD, but I have become a champion procrastinator. While not a good trait to have, it helps me avoid things that FTD will make extremely difficult. It is my ostrich. If I bury my head in the sand, it won't be there when I pull it out. Ah, if it only was so!

This tendency came into play, big time, this past week. I needed to take down and put away all the Christmas decorations. I would look at them in the morning and think "I should do this today." Then the next morning, "I should do this today." It was easier to ignore them if I just closed my mind to them. Finally, I spent the past two days taking them down and storing them away. 

Storing things away should not be such a difficult chore, except that I always pack things away so that they are ready to be moved... just in case my husband ever agreed. This is about the fifth year I have done that. Some dreams never die and, to me, that is a good thing. I have often said, "Yes, I know I live in a fantasy world. Just leave me be, I am happy there."

If I want to keep the dream alive that he will agree with me and move to be close to our daughter, I will keep on dreaming it.

I am often asked for advice from caregivers about how to tell their loved one difficult things or how to keep them from asking the same things over and over again. My first question is usually, "Do you really have to tell them?" Often times, it helps to think about what will calm them best. Little fibs are often the way to go. Do they need to know that you had to sell their house and they can never move back there? 

My cousin gave me an awesome example of this. They were needing to put my uncle, who had dementia, into a nursing home. He knew they had been talking for months about getting new windows for their house. When it was time to make the move, she told my uncle that they were finally going to do it and because it would take so long, they all needed to stay someplace else for a while. It worked. After explaining the same thing at every visit, he eventually accepted it and by then had become accustomed to living in the nursing home.

We are raised to believe that we should always tell the truth. Of course that is still the ideal, but FTD and other dementias make it difficult for someone to understand the truth. Going into long explanations or trying to convince them of something they don't understand is often not going to work. Telling a little fib to turn it into something they will be comfortable with, to me, seems like the kinder thing to do.

The cousin I mentioned was a well known and successful psychologist. If she recognized that fibbing to her dad was the best option, that validated it to me. The caregiver may still have to answer the same question multiple times, but at least it is a short answer that is believable and brings comfort to them instead of repeatedly upsetting them with the whole truth. 

I am probably stretching things to equate fooling myself to a caregiver fooling someone. I am fully aware of the truth and just pretending. But if sitting on the sofa with a warm cup of coffee and staring out the window, visualizing it as the white sands I remember from New Mexico brings me a half hour of comfort, what harm could there possibly be? If it makes it easier for me to pack away Christmas by thinking I am packing it up in case we move soon, why not? 

Losing my cat was one of the most difficult things that has happened to me since the onset of FTD. I have not discussed this with more than a couple people because I am embarrassed and angry at myself. My cat was the most affectionate pet ever. When I was going through treatment for lymphoma, he never left my side. If I was in the bathroom hugging the toilet, he was right there with me. If I was lying in bed, so was he. It hurts enormously that I caused him to die a few years into my FTD. I did not notice that he was losing weight. I did not notice that he was not eating. I would just throw out the old food and put in new. During a visit, my daughter mentioned that he was so skinny. She has huge cats, so I thought she was simply comparing him to hers and laughed. By time I did realize that something was wrong, it was too late for the vet to help him. My cat saw me through cancer, but FTD made it so that I did not recognize the signs that he had it.

I tell this sad tale to show that it does not hurt anything for my to put a pillow up against my back so that the weight of it makes it feel like he is there sleeping with me? I will never have another pet. I will not take the risk of not being able to care properly for another one. So, if I sleep a little easier with that weight against my back, then that is what I should do.

To the caregivers, please, if a fib will make your loved one more comfortable than the truth will, don't hesitate to do it. It is probably the wisest and kindest thing you can do. Don't let anyone make you feel guilty for not always telling the truth. You are not giving them false hope, you are probably just soothing their soul in the same way my warm cup of coffee and my imagination do for me now.