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!
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