Saturday, February 3, 2018

Letting Go of Guilt and the "I Shoulds"

It won't surprise you at all when I tell you that I visit my online support groups every day. It is what keeps me sane most days. Recently, several comments were fairly similar. They were either questioning why or lamenting that they can no longer do the things that they used to. The energy and/or desire is no longer there, but it seems to have been replaced by guilt.

I will admit that for quite a while, I also fell into this trap. I had no desire to do many things and no energy to do the ones I wanted to. I felt oh so guilty all the time. There were days when I would just sit on the couch and stare out the window for the entire day, then tell my husband I was too tired to cook dinner. Then I would feel guilty about that and it would spiral from there.

Guilt is self defeating, without a doubt. If you have no energy, it is a real thing. Add in the apathy that FTD brings, and you don't care if things get done anyway. Every day, I would tell myself to get up and do something, that if I did something I would feel better about myself. It would also get me moving. I still couldn't do it. I believed that I should do it. Some days I even wanted to do it. It didn't matter though, I still was not able to.

This inertia was not due to depression. but I did start feeling depressed that I was not doing the things I believed I shouldMy answer and my advice to all others with the disease is to avoid the "I shoulds". While I wish I could do even a fraction of the things I used to do, I have stopped telling myself what I should be doing. I no longer feel guilty if I want to sit and watch the birds or the squirrels all day or if I while away the day on the computer. Those things still stimulate my brain and that is what I think I need most.

There is a huge difference between "I should" and "I could." 

Keep in mind that FTD steals our executive functioning skills. How does this come in to play? Executive functioning involves the ability to plan and strategize. For instance, with me a big "I should" was always cleaning the house. This should have been an easy task... boring, but easy. Without executive functioning, that became a single task. I kept telling myself to get up and clean the house. I was not capable of breaking that down into separate tasks. Prior to FTD, I would have told myself, "okay, today we dust," then the next day "today we clean the kitchen counters." Cleaning the house was too overwhelming to even attempt no matter how much I believed that I should.

How self-defeating the "I shoulds" are. The more I believed it, the guiltier I felt and the more overwhelmed I grew to be. So, I did nothing. I have mentioned many times that I see a psychologist, one who specializes in dementia. She actually understands FTD, unlike any other doctors I have come across in this area. She finally convinced me of what I was doing to myself. I needed to replace shoulds with coulds. 

I was quite good at explaining FTD to others. I talked about it to anyone who would listen and I wrote about it for anyone who would read it. I talked about the inability to plan or accomplish complex tasks. I explained about the lack of energy, combined with the need for many more hours of sleep than ever before. I explained, but I had not fully accepted it my mind. After all, who wants to be that way? Often times, I unjustly would feel guilty for those things. It was so much easier to guilt myself into believing that I should still be doing everything, rather than accepting that I no longer could do everything.

The best thing she kept encouraging me to do was to hire someone to come in and clean my house. We have no pets and it's just my husband and me, so once a month has been often enough. I was lucky. We started out by hiring a cleaning service but then I found a lovely older lady who said she could do it. My insurance agent assured me that my homeowners would cover any injuries or even thefts. She does it for only $60. That is the best money I spend each  month. 

By removing this huge and overwhelming task from my "should" list, I was able to concentrate on the "coulds." I had not realized how much energy I was expending on feeling guilty. After I removed that burden, I could bake some cookies if it was a non-fuzzy brain day. I could cook more often, I could make that grocery list. I actually realized how I was defeating myself by not recognizing how complicated things truly are for the FTD brain. Now, if I want to sit on the couch watching the birds and squirrels all day, I no longer feel guilty. If I have a day when all I have energy I can come up with is to make grilled cheese sandwiches for dinner, I no longer feel guilty. If it needs to be a carry out day, it doesn't weigh on my mind.

I must say that my husband had never once complained about what I would make for dinner. He would not complain if I sat all day or played computer games all. Once I let go of the guilt, he saw the difference. While I still struggle to get him to understand that I can only do one thing at a time, e will now ask me if I am up to doing a needed task that day. Usually I am able, but sometimes it is just "one of those days." If I tell him it is a bad day, he will set it aside for another day. Sometimes, though, he tells me we must do it today but he offers to help me do it. I never accept his help, but that is a wholly different subject. It's a lifelong hang up of mine. He has learned that, when he can, he asks me to do something within a few days and will leave something sit out to remind me. Of course, sometimes, I need to ask him what it was supposed to remind me of!

Not everyone can spare the extra money to have someone clean the house or have anyone willing to to do it for them. In that case, I suggest sitting down and making a schedule. Write on the calendar, "clean kitchen floor," or "vacuum carpets." That way, you do that scheduled task and don't have to think about the next one. Remember, every task we do is really consists of many tasks. For instance, cleaning the kitchen floor is: move loose furniture from room, locate your bucket, remember which cleaning product is appropriate, read the label for how much to use, where is the mop and on and on. It is like that for nearly everything we do. What used to seem like a simple task probably isn't anymore. That is okay... one thing at a time. That mantra gets me through most anything. Well, except for assembling the so called "some assembly required" filing cabinet that I got for my birthday. That tale would take several pages to tell. It might make a good comedy show though.

I know I have focused on cleaning the house. That is because it was the biggie for me. It can also apply to anything you were able to do pre-FTD. It could be gardening, cooking, shopping or anything that makes you feel overwhelmed. Bottom line is letting go of the guilt. I found that, once I let go of the guilt I was putting on myself, I am more able to resist it when others try to put me on a guilt trip. I even have the ability to find the ability to say "no." Not often enough, but I am still working on it. Change all the "I shoulds" into two categories, "I can" or "I can't" and go from there. Don't feel guilty if you have a lot of "I can'ts." If you feel you have to defend yourself, when you say "I can't," add something "FTD won't let me."

Try, when you find yourself feeling guilty or thinking about what you should do, telling yourself (yes, I do talk to myself) "Just stop it, no guilt allowed!"  Another biggie is to realize that it really is okay to say "no."

I recognize that many will disagree with my way of dealing with the issue. There are those who believe that FTD does not have to change what you can do. I believe that is decent advice as long as you aren't doing it because you feel guilty. I don't think anyone would argue that feeling better about yourself can be healing.  It does interest me that most, though not all, of the people I see or hear advising this are not people with FTD, they are caregivers. 

I keep going back to the advice the neuro-psychiatrist gave on the day he gave me my diagnosis. He said that I don't have to set the world on fire, become a runner or push myself beyond my limit. He made me promise to walk the equivalent of one block every day and he would be happy. I am not sitting around doing nothing. I am doing everything I can and do try to do more. I do try to improve my diet by eliminating as many processed foods as possible. I just don't feel guilty if I can't do it or if some days I choose not to.

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