Executive Functioning, One More Time

As has happened before, I had a blog nearly finished and I guess I did something wrong because it disappeared. I take that as a sign that it wasn't what I was supposed to write about anyway. It was about depression and I will admit the whole thing was very depressing. Depressing enough that it was a waste of energy, time and ink.

In the initial entry, I was writing about one of the earliest FTD symptoms: the lack of apathy. There is no doubt that it is one of the saddest symptom, but to me the most important of the early symptoms is the "loss of executive function." When I tell people that, they usually look at me with a blank stare or ask me what the heck that is.

Executive functions are mental skills that allow you to plan, organize, prioritize, focus, solve problems. Another definition I have seen is that it is an umbrella term for the neurologically based skills involving mental control and self-regulation. My very much simplified explanation is that they are what you need in order to think or do more than one small task at a time.

An example, and one I had to do recently, was to schedule an airplane flight. You have to find out which airport is closest to where you need to be and which airline flies there. You have to check all the schedules to find one that gets you there when you need to be there. (Of course you first have to figure out the time.) You have to check to see who has the best fares. Are there baggage fees? Other fees? Then you have to cross reference all the answers in order to select the proper flight. Whew, that's done. Oh, wait! I have to figure out how to purchase the danged tickets. Then, it's time to select the seat you want. One more, you have to make sure you get a confirmation that the purchase actually went through. That one is truly learned from personal experience. Okay, now I'm done. Except I must make a note to print out my boarding pass before the actual flight.

I am exhausted just from remembering all that to relay the experience and recalling how exhausted I was after doing the task. Now, think about if, in the middle of doing this, someone pops their head into my room and asks me a question about something else? Not only can I not focus enough to understand what they are asking and certainly can't answer the question, but it sets me back several steps or I have to start all over again. I shouldn't even mention that I probably bit their head off for interupting.

Hopefully, now, you have a good understanding of just one of the symptoms that FTD brings with it. Now, think about how you can realize that someone has lost their executive functioning just by looking at them. Odds are pretty good that you cannot tell at all, unless you happen to interrupt them during the process and had your head bitten off.

This is one of the reason that people look at us and say "But you don't look like you have anything wrong with you." Many times, I am able to answer someone's question or even remember something that happened quite a while ago. Again, they look at me and say "See, I told you that you were fine."

On a personal note, my husband who has Alzheimer's Disease, is not very capable of being my caregiver any more. I am now trying my darnedest to be his. The other day, after an exasperating incident, I told him he was looking at me as though he did not believe there was anything wrong with me. He looked at me for a while then said "It doesn't seem like there is anything wrong with you." Fortunately I had nothing in my hands because I'm sure I would have thrown whatever it was. He was one of the first who had noticed, prior to diagnosis, that there was something wrong and had never questioned the diagnosis. He was also right there to help me do whatever I struggled with.

Later, thinking about the incident, I realized that, to him, it probably doesn't seem like there is anything wrong with me anymore. I can do things that he can no longer do. For instance, I have retaken control over our finances. I am paying the bills and all that good stuff. What he doesn't see is that I am scared to death that I am going to mess something up. He doesn't see how I sit at the desk and stare at the checkbook and try to remember how to do it. He can't know how I struggle every time over what year it is. I struggle greatly to make my writing legible. But, again, he does not see this, he only sees that I did it.

That is what happens with all the people who cannot believe there is anything wrong with me or others with FTD. They see what is on the surface. They see that I can do something but they cannot see how difficult and confusing it is. They cannot see how quickly I become exhausted from forcing my brain to do what it struggles to do. 

I am proud of myself that I realized that this is what is happening with my husband. The worse his dementia gets, the less shocking mine is to him. I am also proud of myself that I was able to relate that to what others are seeing or not seeing in me that causes them to deny that I have FTD. It's not just that they never heard of it. After all, I can hand them a brochure that explains FTD. I have no brochure that explains how they have to look a little deeper to see that my brain is dying on the inside even though it may not show.

I will still get upset and angry when people question that I have dementia. I will still have to struggle to not scream at them and tell them how stupid they are. I will still have to struggle to remember to turn and walk away because they do not know any better. I will though, after I have walked away, be able to realize why. Perhaps they saw me do something that they do not know how to do or remember something they have forgotten that makes them doubt. After all, I just did something they can't. FTD is different. I don't totally understand it after all I have learned about it so I do understand that they don't either.

Hopefully, this blog entry will explain the loss of executive functioning a little better to the caregivers, family members and even some who have FTD. Please remember that when you look at someone with FTD who looks exhausted, after doing some "simple" task, truly is exhausted. Please remember, even the next day or two when they have no desire to do anything except nap, that it is quite possible it is because they strained their brain the day before.  I actually use the terms "brain strain" or "brain drain" to explain what I am feeling. It kind of says it all if you listen properly.

Now, if you will read on just a bit more, I would like to just summarize what I was going to write about before the executive functioning jumped into my brain. (Yes, it is the loss of executive functioning that can cause my brain to jump all around and not focus on just one.) With the loss of apathy that we also develop early into the disease, some doubt that we can truly suffer from depression. I can give you a long list of those who do, right off the top of my head. To the doubters, I have two comments... First, can you tell me how someone can possibly have FTD and deal with life with FTD and not have at least some level of depression. The overwhelming frustration alone can trigger it.  Second of all, to those who doubt... Hogwash!  

See, sometimes things happen for a reason. An entire blog about whether we can suffer from depression would have probably angered more people than I ever care to.

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."