Friday, April 14, 2017

It Doesn't Take Much to Become Too Much

I usually take time each day to visit the online support groups that are for both caregivers and those with FTD. There is one complaints and/or questions that are posted by caregivers way too often. This is the complaint that the loved one they are caring for "just wants to sleep all the time." That one, or "just wants to sit and do nothing" all the time. I cringe every time I read these types of questions. No matter how much I, and others with FTD, try, we cannot convince them that it is not that they "want" to sleep all the time or "want" to sit and do nothing. It is more like they "need" to sleep all the time and "cannot" be doing things. The loved one is not being lazy or uncooperative just to irritate the caregiver/s, I assure you.

I can really only speak for myself, though I see others with FTD saying the same thing. There are days that we cannot seem to get enough sleep, or that we have no motivation or energy to do anything. These things can be made worse by their surroundings or the previous day's activities or just about anything that requires brain power. That includes everything!

This past Sunday was a "down" day for me. I played on the computer, wrote a blog entry and just goofed off all day. The dinner I fixed was super easy. It was a good day to recharge myself. Unfortunately, every week, Monday always comes next. I really wish we could change it around once in a while. Monday is our grocery shopping day. We found out from the store manager that it is their slowest day, so that is when we shop. I make the grocery list on Sunday, just to soften the load on Monday.

This past Monday was no exception. I was already feeling stressed that morning, so I actually took a .5mg Ativan. Shopping actually did go a little bit better than usual, so when we got home and got everything put away, my husband and were still speaking to each other and I hadn't locked myself away in my quiet room. So, he suggested we make a run to Sam's Club. We only needed six things so it shouldn't be too bad. Wishful thinking!

It was a fairly quick trip through the store. The downfalls were the noises of the forklifts running and beeping, people diving in front of me with their carts, just too many stimuli. Plus, who told them it was okay to move things around to different locations? Sure wasn't me, I don't do change! But we survived and made it home just fine.

The problem was that I was totally exhausted, both physically and emotionally. My brain had to work itself much too hard by the end of that second shopping trip. The next day, Tuesday was spent trying to figure out where my husband had lost his ring of store discount cards. I don't know if this exists everywhere, but here in PA, every store has a discount program for you to join and you need to have a card or key tag to get the discounts. We were trying to figure out where he was the last time he remembered using it and it had been five days. He did the running around trying to hit all the stores he had visited since then, but the ordeal taxed my brain and again left me exhausted.

Wednesday, a friend took me to lunch. It was a gorgeous day, so we went to a park to walk off the lunch. It was fun, two "old" ladies walking along an uneven path with their canes. It was quite nice, truly. Thursday, is our usual "appointment day." I went to the doctor's office for a shot and to the chiropractor, then we stopped at our favorite diner-style restaurant for lunch. When we got home, I realized I did not have my cane. Plus, a package we were to leave at the chiropractor's office was still in the car. So we retraced all our stops again. I had left my cane hanging on the counter while paying our lunch tab and they had recognized it as mine, so it was easy to get it back. Then we had to stop for gas and go to the ATM for some cash.

None of these things, by themselves, are too much for my FTD-raddled brain to handle. Start bundling together like we did, and my brain becomes a disaster. My head was spinning, I couldn't focus on anything. I couldn't think about dinner. I ate half a piece of pie we had brought home from our lunch and a cup of tea. I was in bed by 7 p.m. I needed peace, quiet and darkness to survive.

I am still feeling the effects of the brain overload today. I slept almost 12 hours, but my brain is still in what I call it's "spin cycle." That is what it feels like to me when it becomes overloaded. The brain is spinning, trying to figure things out... what to do, how to do it, trying to not scream. I tried to do the puzzles I normally do in the newspaper, but I just sat there and stared at them. I just couldn't do them.

So, I am in my quiet room and this is where I shall stay as much as I can today. I am giving myself the day off tomorrow as well. That is the only way for me to get re-centered and my brain to get back to where it can function up to its ability.

This is what I want those caregivers to try to understand. I am fortunate that my husband finally understand this concept and can tell when I need down time. It's not that I don't want to do some things today, it's that I can't. It wasn't that I didn't want to watch the baseball game with him last night, it's that I couldn't. A friend called today. It wasn't that I didn't want to talk to her, it was that I couldn't I had trouble understanding what she was telling me or how I should be responding.

Usually my weeks are not as hectic as this one became, thankfully! Those of us with FTD can only do what we can and we must remember to not push ourselves to the point of breaking down. This is true for the caregivers as well, but if they could try to understand that we do what we can, it might make it easier for them to deal with the exhausting days.

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