Zeroes and Heroes or Somewhere in Between

Many years ago, I took a few classes on psychology. I wasn't pursuing a degree nor a career in the field of psychology, I was just fascinated by it all. I don't remember much from those courses, but there is one lecture that has stuck with me all this time. 

The lecture began about how some people rate others on a scale of 0-10. It is pretty much self-explanatory. Someone you despise would be a zero. Someone you idolize would be a 10. Unfortunately, it didn't stop there. Apparently there are many who rate others only as a zero or a ten. I wasn't quite that bad, mine was more of a 0-3 to 7-10 scale.

I had always sought out the company of two different groups of people: those who I could help and those who could help me. Thankfully, this happened in my early 20's and I started seeing the value of everyone and how narrow-minded I had been. This greatly helped me in my career and in my private life as well. 

What on earth does this have to do with FTD? The answer is simple. There are many people who view all of those with FTD as a "zero" and view all caregivers as a "10". The reverse is true as well.

At the risk of offending caregivers, I will start there. I have heard and read many caregiver comments about how horrible their FTD'er is. How they don't do anything to help around the house, how they wet the bed or poop in their pants, how they only want to eat sweets, how they have gained weight and how rude and unappreciative they are. This is only a small fraction of the complaints.

I am going to keep my response to that simple. These things are not a conscious decision for the one with FTD. It is a compulsion they cannot control, especially for the poor diet choices. The FTD brain craves sugar and carbohydrates. I read somewhere that the brain is fed by sugars and it realizes it needs help so it demands them. I think I am remembering it correctly. It makes sense to me, but I won't swear it is accurate. 

FTD'ers don't help around the house, at least not properly, because they can't. You should see the basket of laundry I just folded. I cannot fold a shirt. I cannot even fold my underwear. Forget a fitted sheet and even the towels are all catty-wompus. That means messy in case you don't understand Cindy-speak. Telling me to vacuum the floor may end up with me vacuuming the kitchen or not remembering where the vacuum even is. Add to that the fact that every seemingly small task we do exhausts us. The more exhausted we are, the less our brains work. 

Trust me, no one with FTD wakes up in the middle of the night and thinks that it is too much trouble to go to the bathroom so they wet the bed. Nor do they deliberately dirty their pants during the day. Our bodies and brains do not always communicate. Our body needs to move its bowels but the brain doesn't realize it until it is too late. 

Our sense of taste changes with FTD. What we used to like to eat may not taste good anymore and some days it may be that nothing tastes good. Well, except for the sweets. Adding a little agave nectar or honey, even sugar, to the food may even help with that problem.

Before you get angry and quit reading, I will switch to the vice-versa. Caregivers are not all evil, screaming lunatics either. They often break down from frustration. They may even scream. This is not because they are evil or they are bad caregivers, it is that they do not understand what is causing the FTD'er to act the way they are which leads to total frustration. They are also exhausted. In most cases, they must now do all they used to do plus all that the FTD'er used to do. 

Caregivers also realize that their role will not get any easier as the FTD progresses. People tell them to just ask for help. So easy to say to someone, not so easy to obtain. It's not easy to ask and the excuses received in response are endless. I must also mention that having someone else pitch hitting is not always welcomed by the FTD'er who can become uncooperative.

Those of us with FTD have to remember that it is not always possible to have meals on the table right when we are ready to eat. Those meals may not be of top quality sometimes due to lack of time and energy. It would help, also, if we could remember that we just asked for the same thing five minutes ago!

Yes, I know, I have written about these things before. I have especially written about the things that stress both the FTD'er and the caregiver. I just had to reiterate a lot of these things to try to get across the fact that NONE of us is perfect. The reverse applies as well. None of us deliberately tries makes the other's life miserable. 

However, if you think about it, none of us was a zero and probably very few were 10's prior to the invasion of FTD. None of us was without faults but I am sure that all of us had many positive sides. Life is not zero or a hero. It does not matter how good of a caregiver you are, you are not a 10. Though, if I am honest, I can think of a couple who are close to a 9.9. The best part is that they don't even realize how good they are. 

For the FTD'ers, none of us are a 10, probably not even close to it. Many of us do our best to be helpful and not to complain (too much anyway) and be appreciative of all the caregivers do for us. At the risk of sounding like a cliche, we need to meet in the middle of the road. If we both manage to be a 5, perhaps we can make a 10 between us.

I must close by telling you what inspired this post. During my husband's last days, I kept reassuring him and telling him it was okay to go, that I would be fine. Finally, my helper told me that "You know he doesn't hear you, you have not whispered to him in years." Uh, I admit she was right. When I went back into his room, I spoke to him in my normal not so whispering voice the exact same thing I had been telling him all along. He actually opened his eyes and I do believe he heard me. Later that evening when I gave him a kiss, which I did a lot, he responded and kissed me back. I bet you figured out the end to this story. That was the night he passed on. Neither one of us was perfect. Not when he was serving as my caregiver, nor when I was his. What we did do, was always take a few minutes each evening to remind the other how much we still loved and shared. I will treasure that kiss forever. It is at least tied with our first kiss, if not better.

Please try to take those few minutes everyday to reconnect. It may make a big difference. But don't whisper!