I learn things about FTD constantly as well as how to and how not to deal with it. Many of the things are probably already known by many others, caregivers and FTD'ers alike. I never know, though, if these are things that might help some.
One thing I have a problem with is understanding long or compound sentences. It boils down to the "one thing at a time" concept that I often preach for those with FTD. My brain can grab one idea out of a sentence or string of sentences, but then it starts spinning and can actually make me forget even that one idea that I had grasped. It is even worse when the important words are at the end. In others words, when speaking to someone with FTD, try to use short and to the point sentences. If I need more information after hearing the short and sweet message, it is better if I ask for it.
An example, "Do you remember that fudge, the one that tastes like peanut butter meltaways? We got the recipe at the craft store where we would have to go to get the ingredients. I think it was the one by the pet store. You made some of it for the bake sale at the church." By then, I am pulling my hair out, brain is spinning and I just want it to scream. Finally, the point is made... "Can you make some?" Instead, what I needed to hear was "Can you make some of that peanut butter meltaway fudge?" The first example ends up with me frustrated, angry, screaming and never making the fudge. The second one, I can answer. "Sure, it's easy, we just need to get the stuff."
I have talked about keeping it simple before, but this example seemed the perfect way to explain it. At least I hope so! I should also add that we, or at least I, cannot understand sarcasm. You answer a question with a sarcastic or snide answer, I believe that is the true answer.
Another suggestion to keep peace in the household: I have my quiet space in my room and usually end up in there by 7 or 8:00 in the evening. I need this time to de-stress if I hope to sleep that night. I need it calm and quiet. If your loved one has a space like this, try to honor it. It doesn't help me de-stress if someone pops in and asks a "quick" question that could certainly wait until the next day or a lengthy description of what is happening in the ball game. If the house isn't on fire, no one is sick or I won $5 on the lottery, please don't pop in. Now, if I win the Power Ball, you can come in, but I don't buy lottery tickets. Lottery tickets are one of those things that are not good for an FTD'er to start buying. Since handling money is often a problem, how would I know when to stop buying them? Plus, even if I had the winning ticket, I would most likely lose it before turning it in. I have a habit of putting things "where I can find them" and then no way remember where that was.
I hear many caregivers asking about eyes and why does their loved one keep their eyes closed. I'm sure I have mentioned double vision before but, as mine worsens, I realize how bad the problem is. When you see two distinct images of the same thing, it strains your eyes to try to focus. With FTD, the double vision fluctuates so corrective lenses aren't going to do the trick. If I am looking outside, I see two of everything but one of them keeps moving in and out. So, no, we probably cannot see what you think we should because "it is right there where you are looking!"
The second problem that can occur with eyes is sensitivity to light. I cannot back this up at all with medical fact, but I suspect this has something to do with the eyes not getting the message to dilate properly. Many people get relief by wearing sunglasses, even in the house. It also helps to not sit right by the window or glass door. If I want to watch the birds fade in and out from one to two images, I do it from several feet away from the window. If it is still too bright for comfort, closing the shades or curtains should help. I can remember when my mom was caring for my grandma who had FTD. Mom put her easy chair right by the window so she could look out and always had the TV on for her. When I would stop in, Gram would often ask me to turn off the lights. It never occurred to me that it was probably too much light until I experienced it myself. An interesting occurrence that affects at least me, is that when I try to read, it seems I cannot get enough light. It is almost like having cataracts again. When I try to read the newspaper, I find myself turning on more lights. For those of us who can still read, I find using my Nook or tablet is easier on my eyes than real books. I find the "night" setting best. It is a black background with white letters. I also read in a dim or dark room. Both the double vision and sensitivity to light can cause horrific headaches. They are so bad that closing our eyes is sometimes all we can do. Headache medications don't make even a dent in FTD headaches.
Totally changing the subject, Agave Nectar is one of the best things I have discovered. Those of us with FTD crave sweets and carbs something fierce. One problem with that is it can cause blood sugar issues for me and I am not even diabetic. Agave Nectar is about the consistency of honey and is made from the agave plant. Tequila is also made from agave, so it must be good stuff in my mind. Don't worry, it's not alcohol. Though it has just as many calories as sugar, it does not affect the blood sugar levels the way sugar does. Wherever I can, I use Agave Nectar instead of sugar. I use it in my coffee and tea. I also use it anything I am cooking and that needs some added sweetness. Any time a recipe calls for honey, I use it instead. I wouldn't recommend trying it for baking except as a substitute for honey.
Everyone talks about trying to get the FTD'er to help around the house with little chores where possible. I am supposed to make my bed every morning. This often resulted in total frustration when I couldn't get the sheets and blankets fixed right so the bed could look okay. We bought a puffy comforter that solved the issue. Now, if the sheets and blankets aren't pulled up straight or perfectly flat, the puffiness of the comforter covers it up and the bed looks great. Don't tell my husband but, sometimes, I only pull up the comforter without worrying about the sheet and blankets and it still looks great.
One thing that can be a challenge when caring for an FTD'er is brushing the teeth. One day last week, I accidentally swallowed some toothpaste. It really burned, especially at the soft palette at the back of the mouth. That burning sensation stayed for a couple hours. I had no idea what caused me to swallow some of the paste but it made me think of the difficulties to come. I also remember the kids' toothpaste I bought when my daughter was first learning to brush hers. It was fruity sweet, didn't burn or irritate and was nothing to worry about if swallowed. The light bulb lit up over my head that children's toothpaste with a children's soft, or adult super soft toothbrush with a small head, just might save some battles. The other thing that can work is the little foam squares on a stick that they use in hospitals and nursing homes. The foam contains something to clean the teeth, is soft and can be easily slipped in between the cheek and gums. These are available on Amazon and, I imagine, at most drug stores as well.
I am learning what to not eat because it will trigger my swallowing difficulties. I only eat canned fruit now because raw fruit is one of those triggers. For instance, peeled apples cut into small pieces is better than whole or large pieces. Applesauce is better. Some of my other triggers are french fries, potato chips, pretzels, the crust on toast and most anything on the dry side. It does help to drink liquid before eating and throughout the meal. Keeping to wetter foods helps a lot, for me at least. I cut the crust off toast and sandwiches. I cut my food into very small bites. If I put butter, cream cheese, jelly or anything similar onto crackers, I can swallow them easily but not if they are plain. When we order pizza, I get a softer crust and some toppings that aren't dry. I also often make our own pizza to solve the problem. I buy the soft flat bread from the bakery in the grocery. Contadina makes a decent pizza sauce in a squeeze bottle (I'm sure there are other brands, but that's what our store carries) or I use olive oil and a little garlic. Add on plenty of cheese, onions, fresh, peeled, tomato slices or any other soft topping I scrounge out of the fridge, and it makes a yummy pizza that I swallow with no problem. I only bake it until the cheese melts, so the crust doesn't dry out.
Several incidents of trying to juggle my "stuff" happened this week. I find it difficult, while using my cane, to juggle anything else. I have made sure my purse has long enough straps that I can put them up on my shoulder and still leave that hand for hanging on to my husband, or whomever, for additional support. Even with it that way, it still gets awkward sometimes and if you add in one more thing, it becomes too much and overwhelms me. I know I should give up carrying my purse or just use a small cross body one, but how else do a carry a bottle of water just in case, sunglasses, reading glasses and all the other necessities. Unless my husband wants to start carrying a purse, I'm not ready to give mine up.
One instance that happened this week was when I reached out to accept something that someone was handing to me. I totally forgot about my purse and it crashed to the ground. Another time, I was entering a business and two people were being very kind and holding both the front door and the airlock door. One had the right side of the door open and the other the left. For some reason, that confused me. I was trying to switch my cane from one hand to the other. I have no idea why my brain thought that to switch sides of the opened doors required me to switch hands. This is one of those mind boggling things that occur all the time with an FTD brain. By time I was through the second door, my brain was spinning and trying to figure out what was happening.
My point on this is that I need to keep things as simple as possible. I need to carry as little stuff as necessary. Usually, we work it out, but in this case it was pouring rain and my husband had dropped me at the front door since all the handicapped spaces were full. After the confusion over nothing at all, I realized how much I depend on my husband when we venture out. Not enough, though, that I would wait in the pounding rain for him to get to the door.
Life with FTD is always an adventure for those of us with the disease and all of our caregivers. This blog entry reads a little disjointed. Then again, my FTD brain is also disjointed. I hope some of these things can help you.
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