If anyone is offended by what I say next, so be it. FTD = F*** This Disease. I actually have a key fob attached to my purse that said "FTD Sucks." Same thing, just cleaned up a bit.
Many caregivers will disagree with this, but those of us with FTD try really hard. We struggle constantly with the symptoms and everyday frustrations. We struggle to overcome them, but if that doesn't work, we hide it as well as we can. That is a small part of why so many people look at us and think there is nothing wrong with us. We are that good at covering up how badly we are doing.
We try not to complain about everything that FTD brings. I believe that if most people had to suffer the FTD headache for just a few days, they would be running to the doctor or emergency room to get relief. I think I have mentioned before that I have dealt with migraine headaches throughout my entire life. If I take my absolute worst migraine, one that would have me hiding in a dark and quiet room, in tears, and multiply it by 2 or 3, I have described an FTD headache. Add that constant headache to all our every day struggles and it can be pretty darned overwhelming.
We try not to complain about how frustrating it is to not be able to do things that used to come naturally. That even includes the difficulty many of us have just walking and talking. Okay, I said we TRY. Some days we are successful, others we are not. There are days when I wouldn't want to live with myself. Yes, I know when I am being like that. I just cannot do anything about it.
There are days that my FTD symptoms are no worse than other days, but I still feel really depressed and should not be allowed to interact with others. On those days, if you ask what is bothering me, I wouldn't be able to figure it out and would probably bite your head off for asking anyway. A couple weeks ago, I wrote about how urinary tract infections can cause this. Other nagging little illnesses can as well. If I get a tiny little cold, I feel like I am at death's door. My body and mind are so worn out dealing with the FTD that there are no reserves left to deal with anything else. Illnesses are not the only thing that cause some days to be worse than others.
That is why, when I am trying to do something that would have been simple before FTD, I throw a temper tantrum or just fall apart. Yesterday, I decided to vacuum out our car because I noticed it needed it. I vacuumed the passenger side first since that was where the electrical outlet is. When I finished that, the trouble started. I could not figure out how to do the other side because the nozzle didn't reach that far. It took several long minutes to figure out to move the vacuum to the other side of the garage. To compound it, that didn't work because the cord wasn't long enough. After much swearing and stomping, I remembered how I used to do it. It is a small portable vac so I simply set the vacuum on the passenger seat, walked around the car and voila!
This event was disheartening enough, but it could have been worse. If someone had observed me being so confused, it would have made it worse, especially if they tried to "help". It seems like at least half the time anyone tries to help, it comes across to me as demeaning and condescending. I end up feeling stupid because I could not figure out how to do it and embarrassed that someone thinks I'm pretty darned stupid as well. What would work best, at least in my case, is to simply say "If you need help, I am right here." then step back. Don't try to take over and, above all, do not laugh! After I start laughing, feel free to join in.
It can be other things that cause our bad days, not just illnesses. Three days ago, after struggling all day with everything being difficult and an overwhelming sense of sadness, I finally remembered that it was my aunt's birthday. My aunt was a huge part of my life. Growing up, she always made sure that I knew I was loved even when I was not receiving that message in my own home. It was in her home that I learned that family members could have disagreements or laugh at each other without hating each other. When I stayed with them, I rarely made it through dinner without my cousins having me laughing so hard I couldn't breathe,usually by making fun of me. That was okay though, because there was also love there. I also learned that when my uncle was being cranky, it didn't have to ruin everyone's day.
Coincidentally, she started showing signs of dementia right around the same time I was being diagnosed. Hers progressed much more rapidly than mine, so I was functioning well enough to be able to act as one of her main caregivers. I had the privilege of sitting at her bedside in the hospital for the final three days of her life. I know that I was letting her know how much she was loved, just as she did for me throughout my entire life. Thank you for indulging me and letting me extol her virtues. She had many of them.
FTD has stolen my ability to know what day or date it is, so my mind was not able to know that it was her birthday. The heart, though, can be much stronger. It knew that it was a special day to remember. Finally realizing it was her birthday, wishing her a happy birthday and thanking her for all she meant to me, even though the wishes needed to be sent to her in heaven, lightened my load and I was able to enjoy the end of the day. I could feel her laughing along with me at that dinner table and reminding me that I can do this.
It is important for caregivers to understand that there can be reasons why we act more nastily some days. We can be feeling ill or can be uncomfortable from something as simple as having my shirt on backwards... again. It is things like this that make me have that feeling that there is something wrong, but can't figure out what. We could be missing someone or missing something we used to do. I spend a lot of hours feeling angry because I can no longer do any artwork.
So, yes, this disease sucks. It sucks for those of us with the disease and it sucks for those who have to live with us. We just have to stick together and muddle through the bad days.
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