Ramblings of the Exhausted

I don't want to have FTD anymore. Not that I ever did, but it just keeps getting more difficult. I often say that there is no way that anyone who does not have FTD can understand it. There is no way to explain how having the disease feels.

Family members, caregivers and professionals often insist that they do understand. Nope, sorry, unless you have it yourself, you don't!  This past week I have experienced a lot of the vast spectrum of feelings involved with having the disease.

Just two days ago, I participated in a forum organized by the Association of Frontotemporal Degeneration on FTD. It was a virtual presentation to the Food and Drug Administration. The purpose was to educate them on FTD, its effects, the difficulty of getting diagnosed and, most of all, the lack of available treatments and resources for those with FTD, their families and caregivers.

I was happy to participate and provided a prerecorded testimony on my and my family's history of the disease, trying to explain to them how it devastates families and how it can continue for generations.

I did not expect to be affected very much by watching the entire presentation but hearing so many stories of frustration, destruction of lives and fear of the future left me exhausted... mentally and physically.

It seems that it is difficult to anyone, outside of the disease, to understand. Once the event was over, they could jump back into their lives where they left off that morning. It isn't that easy for anyone involved in the world of FTD. It can be difficult for them to comprehend how it can leave us mentally and physically exhausted. "Come on, it's been two whole days, why are you still exhausted from that?"

In my case, after a while, I will realize my daughter is talking to me and that I had missed most of it. Of course, my reaction and next word is "Huh?" Sometimes she will repeat it, other times she will mumble under her breath and, usually, somewhere in between. No, I cannot understand what she is mumbling, except for a word here or there. It doesn't matter what the words are. As soon as I said the dreaded "Huh?" I knew she would be upset. She is not being mean and she isn't angry. She is simply as frustrated as I am.

I have written about this inability to comprehend spoken words. If an FTD brain is not aware that words are coming, it often takes long enough to know and, by then, you have missed something. 

The frustration for everyone other than the FTD'er is akin to living with someone with a hearing problem. It is not the same, though, because those problems can usually be helped.

I do realize I mentioned this is a recent blog. Sorry I got lost on a tangent again and I hope you are still reading... The other thing that has me emotionally exhausted is hearing of three different situations involving an FTD'er and the current circumstances being thrust upon them. I will not even begin to explain the individual issues, it is not my place. You will just have to trust me that, while each is totally different, they all left me concerned, sad and angry.

In two of the cases, it would be easy to blame it totally on the caregiver. In the past, I probably would have. This reaction usually comes from the knowledge that the caregiver can change the circumstances while the FTD'er cannot. But, is that really true? In so many undesirable situations, it may seem to be impossible. When a caregiver or family member is already bogged down with worry, lack of sleep or just plain exhaustion from all the seemingly unending caregiving acts, it can be nearly impossible to come up with solutions that would have come easily before dealing with FTD. Yes, in an ideal situation, the caregiver would have endless energy and patience.

Sometimes I wish that my total apathy and lack of empathy would come back. The years I spent without those were easier. On the other hand, I don't really want to lose them again. I did not feel like myself knowing that I should care but didn't. 

Now, I am wondering if in circumstances that are intense and seemingly impossible to do, if that forces apathy and lack of empathy onto the caregiver. I am not believing that this is true for all caregivers. There are way too many truly bad caregivers out there. You know the ones... the ones who say horrible and hateful things about their FTD'er, the ones who leave their FTD'er home alone for hours even though they know it is not safe, the ones who ignore signs and symptoms... I do not need to go on. 

I don't know about you, but I can understand how caregivers could reach a breaking point and just not care as much as they used to or even as much as it seems they should. Now, it would be easy to say that they should ask for help. Again, yes, in an ideal world, it would. Unfortunately, most of us know how impossible that can be. If you can't even get family or friends to stop by and visit with the FTD'er for an hour or two so you can get some things done or at least to sit down and catch your breath, what is the likelihood of anyone being willing to come and really help?

Those of us with FTD should better recognize how difficult it is for the caregivers. I fear, though, it is often impossible for many caregivers to understand how difficult it is for the FTD'er. We often cannot discern the mood and comfort level of the caregiver. We don't understand subtleties like that. We don't understand sarcasm or have the ability to recognize joking. 

I know how, when someone is dismissive or reluctant to do something I need, I don't have the ability to realize that they might be tired from a day's work or because the store was crowded. If after coming home from the grocery store they say, "It took forever because I couldn't find the things you wanted," What I hear is something like, "It's your fault it took me so long because you wanted all those things!"  Yes, when the paranoia that FTD brings is the filter through which you hear everything, it can cause huge misunderstandings and hurt feelings... on both sides.

I do apologize for rambling. I tend to do that vocally when I am exhausted and, obviously, it is the same when I am writing! Oh, wait, I forgot to say that caregivers don't always pick up on the subtleties of what the FTD'er says or does. Okay, that is for another day...