Friday, April 20, 2018

Learning CAN Be Fun

Here it is, already a week has passed since this year's annual AFTD Educational Conference. It was indeed educational and I learned several things I did not already know. I was also reminded of some things that I knew, but had forgotten. The most exciting part was meeting some people I had not previously met, at least not in person.

I was thrilled to meet quite a few "newbies" to the AFTD conferences and took a couple under my wing to ensure they got the most benefit from all that was offered. I wish I could have met more. After getting home, a few people commented online that they were there but did not get to meet very many of us FTD'ers. This year, we did have badges to indicate that we were FTD'ers, which I appreciated greatly. There was nothing, though, to indicate who were first timers. I think this would help enormously at future conferences.

While the pre-conference (Thursday evening) dinner was in the planning stage, the venue insisted on having assigned seating. I was totally opposed, but quickly loved the idea. It mixed up those of us who had been to previous conferences with those who had not and provided an opportunity to get to know some new people.

The opening speaker was Dr. Marsel Mesulam, a leading expert in FDA research. I learned some new things from him. I learned that someone's FTD can be genetic without testing positive for the known genes. There are most likely more genes that cause FTD that are as yet unknown. I was also amazed by a slide of a brain from someone with FTD. In a normal brain, there are no spaces in the cerebral cortex. In an FTD brain, spaces are quite noticeable. I was fascinated with his entire presentation. I only wish he would have spoken slower so that I could absorb more of the information he presented.

All of the speakers whose sessions I attended were excellent and interesting. This year's breakout session for different areas of interest were better than past year's. There were several sessions only for those of us with FTD. There was even a session of improv that turned out to be one of my favorites!

Something I was reminded of, is the role of a Neuro-Ophthalmologist. I have written many times about the vision issues that often come from FTD. I had been to this type of doctor many years ago when we were trying to determine a cause for the extreme headaches I suffered, but never stopped to think about seeking one now. This is now on my list of things to do. There are no neuro-ophthalmologists near my home but it seems like a good idea to consult with one, even if I must travel.

For me, the best part of the conferences is the opportunity to socialize with others with FTD. My daughter, who accompanied me to the conference, commented "Mom, you are a social butterfly!" The reason she said this is that she has not seen me like that in many years. When surrounded by those with FTD and those who are knowledgeable of FTD, it is easy to let my hair down, relax and be myself. No one cared how often I tripped, lost my balance or couldn't find my words. Because I knew that no one would judge me, I was able to relax and be myself for a change.

I was awed by the amount of work and effort that the AFTD must put into making these conferences a success. There must be thousands of tiny details that need to be addressed. I saw nothing that was not well planned in advance. It also amazes me that each conference I attend is better than the last.

Finally, one thing that I am extremely proud of is that, for part of my travel, I did it alone! I took a shuttle flight in a small plane to a larger airport and survived a 5-hour layover. I managed to fend for myself, even found food for myself, without getting lost once. I met up with my daughter at that airport and finished the trip to Chicago with her. For the return trip, I could not coordinate our flights to travel any of it with her, unless I paid several hundred dollars additional. I assured her that I was comfortable doing it alone. She did make sure I got to the proper gate at Chicago's O'Hare airport and that I had a snack and beverage so that I would not wander off. I then flew alone for the rest of the trip.

One thing I have learned about life with FTD: Don't be afraid to ask questions or ask for help. I have no qualms about asking for directions, whether in a busy airport like O'Hare, or in a local department store. I had arranged for wheelchair transport all through my travels. In two instances, the requested assistance was not there, once getting off a flight and once getting onto one. On the arriving flight to O'Hare, there was no one to meet me in the jetway. I managed to navigate the jetway without falling this time. My daughter walked nearly backwards the entire length, warning me of every bump, change of elevation and any obstacle. When I made it to the end, I went to the counter and insisted they call for a wheelchair. They were not happy to be interrupted, but eventually a wheelchair attendant did arrive. On the return flights, at the gate for the shuttle flight, to board, one must navigate a steep and narrow ramp with little side protection and cross the tarmac to the plane. There was supposed to be a wheelchair attendant there as well to take me down in an elevator and across the tarmac. I just kept telling every employee there that I must have a wheelchair. They eventually pulled one of the ground crew inside to wheel me down. As is often said, it is the squeaky wheel that gets oiled. I think I am entitled to feel proud of myself. I would actually not be reluctant to make a trip by myself now.

Another thing that I know I have mentioned before is "TSA Cares". You can find them at www.TSAcares.gov. They take all your travel information and arrange for assistance getting through the TSA checkpoints without standing in line or going through unnecessary screenings. I didn't even need to remove my shoes!

As a side note, when going through security at our tiny little airport (only one gate) our hands were wanded to detect any traces of anything that could possibly indicate exposure to explosives. I tested positive! I then was treated to the only pat down I have every experienced. They were extremely nice about it and it was not uncomfortable. I even thanked them for doing it because it increased my comfort in the screenings. The only thing I could figure that caused the positive test was the purple hair color that I had added to my hair to raise dementia awareness along the way and at the conference. I won't be doing that again!

Again, I congratulate and thank the Association for Frontotemporal Degeneration (www.theaftd.org) for the education conference. Well done, my friends.

Saturday, April 7, 2018

Every Day Complications

Before I do anything, I have a huge suggestion to make.  If you have not yet visited the beautifully redone website for the AFTD, please take the time to do so. It is very easy to navigate and to find a lot of great information.  I congratulate them on the beautiful new design.  www.theaftd.org

Speaking of the AFTD, their 2018 Educational Conference is coming up this week. The other day, a friend who also has FTD was amazed that I had made my travel plans by myself. I would never agree that it was amazing. I did manage to coordinate my flights with my daughter's though. We will meet up at the Pittsburgh airport and fly together to Chicago, so it did take some research and planning. What my friend did not realize was that I had spent three days working on the task. Then, I spent three days with a horrid FTD headache. I call it "brain sprain from my brain drain." Not funny, I know, but it amuses me.

That is how it is with everything. Any task takes much more time than it ever did pre-FTD and it takes longer and longer as the disease takes over.  Yesterday is a perfect example. My day went like this: woke up, drank coffee, read paper and opened mail until it was around noon; then I spent about 30 minutes searching the laundry room for something I could not find (still didn't); stripped the sheets from my bed and, after my husband laundered them for me, I remade the bed; I then spent over 2 hours assembling a gift basket for a raffle for a charity I support.  

That is a long sentence to describe all that I did, but let's face it, pre-FTD, after the relaxing part with the coffee, we are talking about about, at the most, an hour of activity. Truly, the 2 hours putting together the gift basket was ridiculous. I already had everything I needed in one place. It was just a matter of putting all the items into a large basket (actually was a tote bag this time) and putting it into a cellophane bag and sticking a bow on it. Except... the loaded tote bag would not fit into the bag the way it usually does, so I had to do it sideways. Every time I tried, all the items would fall over and look a mess. Finally, after multiple attempts, it dawned on me to tape the items in place. Duh! It ended up looking very nice, but come on! Two hours to throw things in the tote bag and stick it in a cellophane bag is ridiculous.

For one thing, the heck with not letting me run with scissors. I should not be allowed to use the packing tape dispenser. I got that tape stuck to me, including around my hand, to my clothes and to the table. What was worse is when I would forget to secure the end of the tape properly and the tape was stuck to itself. That was a true frustration, trying to find the end again and peeling it off so the full width came off together. 

I was totally exhausted by 4:00. I could do nothing more the rest of the day. I could not even fix anything for dinner (we ordered pizza) and was in bed by 7:00. 

For me, this is one of the more frustrating things about FTD. Not only do I have so much trouble doing things but everything takes soooo long to do it. To make it worse, I still have not learned to accept help from others. I have always needed to do everything myself, no matter how many people offered to help. If I had allowed someone else to put my gift basket together, or allowed someone to provide an extra hand, it probably would not have taken as long. I take that back. It would have taken twice as long because I would have been screaming at them for not doing it the exact way I wanted. 

To top it all off, today I am dealing with another FTD headache. Fortunately it is not as bad as they usually are or I would not be able to even look at the lit up computer screen and certainly not be able to put words together coherently. I have accomplished nothing today and have no incentive to do anything at all except to sit in front of the computer. 

Speaking of which, on the same note as the time it took me to make the travel plans, it is the same for writing this blog. Several people have asked me how in the world I can still do it even though I have FTD. For one thing, I am fortunate that FTD hasn't stolen this ability from me yet. Secondly, the actuality is that I spend at least half a day writing an entry and editing it over and over and over. The next step is to run spell check and grammar check, again, over and over.

BUT, in addition to it being only five days until I leave for the conference, my therapist gets back this week. She took three months off to go somewhere warmer. Her husband retired so I guess this is her compromise to not retire totally herself. I am only seeing her once a month now and she did arrange a substitute should I get into a state where I had to see someone so I figured I would be okay. I did go through a couple traumatic events since she has been gone but I just couldn't bring myself to go to a stranger and go through my whole history again. I should be proud of myself that I made it through without seeing her, but I will be so very happy to be able to talk things over with her. It will make me even more relaxed to head to Chicago. This is why I often recommend that someone who has FTD, or their caregivers, might benefit from seeing a therapist. Mine is a psychologist who specializes in dementia. Perfect!

I did say only five days until I leave, didn't I? I'm not up for it today, but tomorrow I must start packing or at least pulling together everything that I need to take. This is from the person who was always up for a last minute trip anywhere, anytime, at the drop of a hat. So, yes, FTD definitely complicates everything.

Saturday, March 31, 2018

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.


Saturday, March 24, 2018

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!


Sunday, March 18, 2018

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.


Saturday, March 10, 2018

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.

Saturday, March 3, 2018

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."

Sunday, February 25, 2018

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. 

Saturday, February 17, 2018

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."

Saturday, February 10, 2018

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!

Saturday, February 3, 2018

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 shouldMy 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.