Decisions, Decisions...

Who doesn't make decisions? It is something we must do almost constantly: What should I wear today? What shall I have for breakfast? How should I answer that question? Obviously, it goes on and on. For someone with FTD, decisions can be painful.

I am only capable of making a limited number of decisions in a day's time. Unless you have FTD, or a similar disease, it is probably difficult to understand this limitation. On a personal note, this is very difficult for my husband to understand.

I think I have mentioned the "Spoon Theory" before in a blog entry. It is the idea that you have just so many "spoons" to use up during your day until you are totally overloaded and become stressed to the point that you can not do anything. Your best bet at that point is to go alone into a darkened, quiet, comfortable room. Anything more than that is going to cause total overload which can be far from pretty. Here is a link to an illustration of the Spoon Theory:  https://www.pinterest.com/pin/390968811385940014/

Obviously, this theory is not the same for everyone. For instance, for me, making a phone call would take at least 3 spoons and shopping would be 5. On the other hand, an hour on the computer would definitely only take away 1 spoon. Not every activity or process is on the illustration, but it should give a good example of how it works. Some days, my 15 spoons can be used up by noon, other days not until 8 p.m. I love those days!

One all my "spoons" have been used up, I am beyond worthless. Don't ask me a question. There are no exceptions, you can't think "She can do this, it's a simple one." It doesn't work that way. Also, everything uses up spoons, not just the things on the chart.

I have given my husband a copy of the illustration, an article explaining it and have explained it myself many, many times. He does not "get" it no matter how or how many times I explain it. Before you start to think he is an idiot, he is not, not at all. He is, however, in deep denial of my disease. He was a true Type A person, an executive with much responsibility and very long hours. Because of that, I was the one who took care of everything.

I was a stay at home mom. I was the repairman (Thank you, Dad for teaching me how to do all the stuff I didn't want to learn.), the organizer, the ultimate volunteer and go-to person. If it wasn't related to his work, I was most likely the one who did it. I didn't often complain, I thrived on it and actually think I was pretty darned good at it. I did not go back to work until our daughter was 16 and fairly independent. I tell you all this as background to what I am about to tell you.

My husband cannot accept that I am not still the person I was for all the pre-FTD years. His deep denial is not that he does not accept that I have FTD or how serious the disease is. He has done a lot of reading about it, so he has the knowledge. He just can't connect the disease to who I am and what my limitations are. If I ask him to do something, such as vacuuming, he will do it. On the other hand, it does not occur to him that the carpets look like they need to be vacuumed. They were always just clean. He has seen me try to vacuum, only to get tangled up in the cord and not be able to find my way out. When that happens, he will offer to take over. It would help if I wasn't so stubborn that I keep trying to do things I can no longer do!

It is the same with mostly all my limitations caused by FTD. The principle of "one thing at a time" does not register with him. He knows the principle, but my former capabilities are so ingrained in him that he cannot fathom how it works. He cannot understand that if I am reading the newspaper, it is not the time to ask a question. Any question is still a question. "Did you see that article on...?" is a question. "Do you mind if I go to the bank?" is a question. I will end up slamming down the newspaper, either yelling or giving up on reading the paper. If I am trying to cook dinner (accent on the 'trying'), asking if he should set the table can be enough to confuse me to the point that dinner will end up not being what it was supposed to be. I need him to just set the table, not to ask me about it.

All these personal tales and explanations are all leading up to something, I promise.

What I am attempting to get across is that if you are dealing with someone with FTD, or just about any chronic illness, they are NOT the person you remember them being. They no longer CAN be that person, as much as they would love to be. Not being able to do the things we used to do or being the person we were, is extremely frustrating. Some days, it is downright depressing. It is difficult for us to accept our situation. If the caregiver or the family members have a difficult time accepting as we are, it adds to our burden. When that happens, every problem becomes magnified.

This all leads to the fact that the less you accept us as we are now, the worse dealing with us will become. If you are not staying calm and accepting our limitations, the more frustrating we will become to you. Dealing with this disease MUST be a partnership. Neither of us is perfect, but we both must accept reality and try to work together to solve problems that crop up, not trying to place all the blame on the other person. This disease will not allow things to get easier, only more difficult.

By the way, the spoon theory works for caregivers as well. The categories may be different, but there are limitations to how much you can handle in a day as well. Caregivers must take care of themselves first. If they don't, acting as a caregiver isn't going to work out very well. God bless the caregivers!