We Are Someone, Not Just Someone With FTD

Last week, things had calmed down just enough in  my life that I was able to pay more attention to all the others out there with FTD. I don't know if it was just my perception, but it seemed there were a lot  more complaints about rifts between the person with FTD and their caregiver. This was coming from both sides of the equation. Since I was also having more and more issues with this same problem, I decided to do some research to perhaps come up with some suggestions on how to deal with this issue and to try to translate between those with FTD and their caregivers. 

I did a Google search on "FTD caregiver versus patient,"  "FTD caring for loved one" and several other variations. I was greatly saddened, that the only two things that came up that fit the criteria were my blog entry from November 18, 2017, "We Don't Do It on Purpose, Truly!"  The second one was the publication I put together, "Coping with FTD".  Link for that is https://www.theaftd.org/wp-content/uploads/2016/12/Coping-With-FTD.pdf  Maybe I should have felt proud that the only two from the FTD point of view were mine, but all I felt was sad.

Truly, that is all I came up with, everything else was slanted toward the caregiver. I readily admit that caring for someone with FTD can be a constant challenge and a difficult road to haul. What needs to be remembered though is that having FTD is just as difficult.

Most of us with FTD start out with no one believing there is anything wrong with us. Almost all of us go through several attempts at finding a doctor who knows enough about FTD to diagnose the disease. At least for me, the diagnosis was a relief... "See there really is something wrong with me?"  Isn't there a joke about that being carved in someone's tombstone? Then, reality hits. " Not only is this no treatment or cure for this disease, but it is going to kill me!"

Having this disease is a constant battle for the person diagnosed. Often depression hits, making us come across as angry. I like to say "Wouldn't you be horribly depressed and angry if you had FTD? Fortunately, depression can be addressed. First, though, it is often the caregiver who has to realize that depression is part of the problem. It can make many of the symptoms of FTD become worse... the anger, the withdrawal, the disinterest in most everything and the overall sadness. The anger can even worsen aggression, though that can be a separate symptom of FTD as well and should not be ignored. 

Depression can be successfully treated and most aggression can be as well. You can schedule a visit to the neurologist or psychiatrist who diagnosed the FTD, or even their family doctor. They are all trained to treat depression. My primary care doctor treats my depression which save me a lot of trouble and the expense of seeing a specialist. It may take some trial and error to come up with the right drug or the right combination to ease the depression and the difficulty of its symptoms. These are not symptoms to be treated as the "s/he is just mean" or "s/he just won't do anything."

Any new symptoms, whether physical or emotional, should be addressed with a doctor. The doctor should also be at least familiar with FTD, if not an expert. While there is no treatment for FTD, there are treatments for its symptoms.

The biggest issue with FTD can be the relationship between the one with FTD and the caregiver. Usually, the caregiver is a family member, most often the spouse. I beg of you.  Please remember this is someone you love, or loved, enough to marry. I understand the strain of being the caregiver. Finances often become a huge issue, the workload grows enormously, the energy involved in those as well as keeping the one with FTD safe all take their toll on the caregiver and on the relationship.

Everyone needs love in their life, even those with FTD. A loving relationship seems to make the FTD'ers life more secure. So, how do you do that? It's pretty darned difficult to maintain your loving relationship. It will probably never be like it was pre-FTD. I'm not suggesting that you need to continue your active sex life, if you had one.  On the other hand, if you still desire that, go for it! If not, remember hugs, kisses and saying "I love you." I'm sorry to say this, but if you find that you no longer love the one you are caring for, try to fake it, just a little at least. Just like a caregiver must sometimes tell little "fiblets" to get their cooperation, the little fiblet of still loving can make a lot of difference, even in the caregiver's state of mind.

Loving gestures provide more security and comfort than most anything else I can think of. Sometimes, those gestures may be rejected, but don't give up. When I am feeling tired, frustrated or angry at a circumstance, I reject all of them. I just cannot handle them. If someone touches me at a time like that, the touch, no matter how loving, my brain actually feels it as pain. If physical touching is not possible, a simple "I love you, we can talk about this as soon as you are able." Once I calm down, I often need to know I am still loved.

Do not assume that your loved one is not doing chores because they are lazy or just don't care. It is more likely that they cannot do them. If we try and it doesn't work for us, it leads to more frustration and we give up on trying. For example, if we are attempting something like folding the laundry, we have to remember how the finished product should look and try to remember how to arrive at that point. If we have folded it to the best of our ability (which is probably no where close to how you want it) and you say something like "You know the towels should be folded lengthwise first" it can be totally defeating. Most likely, we will have no interest in trying again.

Even if we accomplish something simple, like taking out the trash or bringing in the newspaper, it is good to thank us at least occasionally. When I say thanking us, I mean a deliberate, look them in the eye and say something like "Thank you, that helps me a lot." If I go through a day where I feel like I have accomplished absolutely nothing, I drop right back into that depressive mood. Everyone needs to know they are wanted and that they are able to contribute something to the world. I know I go through times when I think I am just wasting oxygen and couch space that someone else needs more.

It is so maddening to me when I hear or see a caregiver unfairly criticizing someone with FTD, saying the "won't" or "don't" or other negative words. The truth is more likely that they "can't" or the "don't remember how" or "don't understand" that needs to be done or done a different way."

When I see a caregiver treating their loved one like a child, I become furious! Yes, I understand that you need to address situations with the same process you would with a child. I have even explained that in a blog or two. You need to think of it that way. It does not, though, need to be done in a belittling fashion. Break down what you want to get across into tiny bits and use simpler words if necessary, but don't talk to them like you would a child or in a condescending manner. 

In the same vein, when you are out somewhere with your loved one, they might become confused, get in someone's way or in another way cause an awkward moment. Please don't say things like "Oh, he has dementia." or "Oh, please forgive her, she did that because of her dementia." We are people, we are not our disease. Address the incident as simply as possible. If someone is bumped by the cart the FTD'er is pushing, try something like "Oh, I am so sorry, we will get out of your way." To act flustered and upset with your loved one and keep asking "are you alright," "did he hurt you," can actually escalate things. The result may cause the FTD'er to feel embarrassed or that they are a bad person, worthless and should not even try to go anywhere. 

The only thing I think is worse than speaking to someone with FTD as you would a child or even a pet, is to not talk to them at all. Even those of us who lose our ability to speak need communication and a sense of belonging. There is nothing more hurtful than to lived "around" not lived with. In other words, forgetting that we still have things to contribute and our brains still work in some ways. By the way, did you know that studies have shown that FTD seems to affect those of higher intelligence? It is horribly defeating to realize that while you were a scientist/doctor/CEO/teacher/etc., you now instead have to wear diapers or need to be shown how to fold a freaking towel. 

Please remember the "one thing at a time rule" that I am always talking about. If you present more than one thing to me, or if you tell me only one thing but there are distractions around, I promise you that I will not understand a bit of what you are saying. I might say "okay" or something like that, but I do that to end the talking not to say I understand. This is something that has continued to worsen since diagnosis, at least for me. I am at a point now, that if someone does this, I enter a black hole. I literally see nothing but blackness that is spinning and hear nothing except possibly Charlie Brown speak, "Wah, wah, wah, wah, wah." 

Sometimes, when you say something, a person with FTD may end up looking at you with a blank stare. Do not immediately think we are not listening. If you say a word I don't understand, I can't understand the entire statement because my brain is trying to figure out what that word is. For example, if you were to tell me, "I need a wrench, go downstairs and get one for me." If I freeze at the word "wrench" because I can't immediately remember what that is or looks like, I don't hear the rest of the sentence. The most intelligent answer I could hope to give if I do remember it is a tool, it's going to be "What about a wrench?" It's not because I didn't listen, it's because I couldn't listen past the word that stumped me.

The last thing that upsets me is being treated like an invalid. If I am walking fine with my cane, I don't need you to hold onto my other arm or hand. That actually makes things worse because I now have to worry about two things, using my cane correctly and balancing with you holding on to me. I cannot always walk the same straight line or the consistent pace that you are walking so that can throw me off as well. If you want to help, walk next to me so that I can take your arm if I start losing my balance or stumbling. It also helps if you walk a half step in front of me and never behind me. FTD has given me tunnel vision, as it can, so I cannot see you unless you are ahead of me.

I don't even pretend to speak for everyone with FTD or to every caregiver out there. We each have our own set of problems, whether the one with the disease or the person caring for them. There are probably difficulties that caregivers encounter that I have not even thought about. All the things I have mentioned may not develop the same way with everyone who has FTD, but I have tried to give examples that you can pull from.

What I ask is that we are treated with dignity, not put down, not ignored, not yelled at when we do something wrong and not belittled or told that we are stupid, worthless or a huge inconvenience. 

Caregivers cannot be perfect. No one can. They cannot help but lose their temper or get frustrated and end up yelling. It can't be helped when occasions occur such as, the caregiver may be struggling to figure out how to deal with something and keep getting interrupted by questions and complaints. Wait a minute? Do some of these things ring a bell? Yep! We are all in the same boat. We all get angry at the disease. We all get frustrated because our lives have been uprooted. We all yell from time to time. 

It is not probably not accurate to compare someone with the disease versus someone trying to care for that person. One is never easier than the other. A caregiver may hate to have to change their loved one's diaper/pull-ups. Guess what? The one with FTD hates that they have to wear them just as much. Both sides are beyond difficult, if that is possible, and sometimes seem impossible.


As I have mentioned numerous times, I am in the unique position of being a person with dementia and also acting as the caregiver for another with dementia. FTD caring for Alzheimer's. The only good thing about the situation that I can think about it is that when I am making mistakes as a caregiver, I recognize them and vice versa. I do make mistakes in both roles. The frustration of having FTD makes it even more difficult for me to remain calm as a caregiver. Fprtunately, his disease is progressing much more rapidly than my FTD which has become a blessing. I don't mean that in a negative way. I say it because I am still able to care for him but he is no longer able to care for me. I do hope it remains that way.