Saturday, January 28, 2017

Changes In Taste

Earlier today, someone posted something on one of my online support groups that jumped out at me. He was saying that everything tasted salty to him and was wondering if anyone was having the same experience. My answer? Yes, but never gave a thought that it could be FTD.

The day after New Year's Day, I made ham broth by simmering the bone for several hours. I added a bunch of diced up ham, then froze the broth so I could use it once I wasn't tired of the ham. Earlier this week, I pulled the container out of the freezer and popped it into a soup kettle. I made ham pot pie, lots of it. If you aren't Amish or familiar with their cooking, ham pot pie in this area is basically ham broth and ham with potatoes and pot pie noodles (large square ones). I have always loved it so I was looking forward to it. Once it was ready, I tasted it and it was like licking a salt lick. I had my husband taste it and he said it might be a bit salty, but not much. I dismissed his opinion, because 'he can't taste anything anyway', and threw out the whole 4 quarts.

When my friend posted the question about salty tastes, I thought perhaps I should have believed my husband. I now think that I was simply tasting the inherit salt from the ham in the broth and my sense of taste was bad, not his. I had not added any salt to the broth since it gets plenty from the ham bone and it had not been a very salty tasting ham. What a waste!

Last evening, we were both tired and dinner time was running late. We ended up having fried egg sandwiches.  I normally use just a tiny bit of salt on my fried eggs, but a ton of pepper.  When I was eating mine, I kept thinking that I  had over-salted my egg because I was tasting the salt, even over the taste of all the pepper. Now, I think back and remember many instances of turning down a salty food like chips. They just don't taste very good to me anymore.

I have gone through several other changes in eating. For about three months I craved Chips Ahoy Candy Burst chocolate chip cookies. Unusual for me because I have never liked pre-packaged cookies at all. I was going through an entire package in one week then, suddenly, didn't want them anymore. I found them dry and tasteless... from one extreme to the other.

I have always loved Italian food. Now I almost detest red sauce, even on a pizza. I made a small pan of lasagna last week. Usually, that is two meals for us. Right now, half of it is still sitting in the refrigerator waiting for me to toss it. Any Italian food that does not include red sauce, I still love.

I have written before about how most people with FTD crave sweets and carbs even if it was something they never craved before. There is no doubt about that. I hadn't added sweetener to a cup of tea since I was a kid. Since FTD, I want it sweet, almost as sweet as southern sweet tea which I used to abhor. I get migraines from any artificial sweetener so my evening cup of tea is just empty calories... but at least it still tastes good.

It has become more and more difficult for me to decide what to fix for dinner. I will go through all the possibilities and nothing will appeal to me. I do have trouble making decisions since being diagnosed with FTD, but it has been getting ridiculous. Now, I am thinking it is because the foods I normally have in the house are ones that I used to like but no longer appeal to me. How do you shop for groceries when you have no idea what you will be willing to eat for a week's time? How do caregivers deal with such changes in taste. It must be frustrating to keep someone with FTD fed when their taste changes so dramatically.

Anyway, when my friend wrote the question about salt, I felt relieved. Now, I can convince myself that all my strange food cravings and avoidance is related to FTD and not just getting cranky (crankier...) now that I turned 64.  [Imagine Beatles music here...] "Will you still need me, will you still feed me, when I'm 64?" It just might be a challenge!


Wednesday, January 18, 2017

Keeping It Positive

I do realize that it is more than half way through January. I have, however,  decided that I need to make a New Year's resolution. I must resolve to do my best to remain positive.

This thought hit me in the face today while scrolling through Facebook. I swear every other post was something negative, mostly about politics. I had already convinced myself that it was way past time for us all to come together no matter which side of the aisle anyone leans toward. Our nation can accomplish much more by working side by side and supporting each other rather than wasting time tearing each other down. I saw, on a friend's post, someone wrote "I am remaining positive in 2017, I am remaining..." Then I saw him posting it again and again. It may as well have slapped me upside the head. I think I will respond with something similar from now on in an attempt to get across the message that we must stand united or our enemies will see us as weak and we will get nothing accomplished.

That is way too much politics to worry about in this blog, but I needed to set the stage. I have been depressed lately and I do believe a big part of it is reading all the political haggling. I am going to attempt to avoid as much as I can while still staying informed.

I must also remain positive about my life with FTD. I need more "I will try that and see if I can," instead of "Forget it, there is no way I can do that!  I must realize a cure will be found. It may come too late to help me, but it will be in time for future generations. This is important to me because my FTD is familial and I worry so much about the next generation, my cousins and my niece. I must remain positive that a cure will be found before any of them are affected.

I believe strongly in research and believe it is my responsibility to participate as much as I can to help. I participated in a study for several years and was recently invited to participate in another. Unfortunately, since the closest research center for the study is a five hour drive, I have not agreed to do it. My husband is not comfortable driving that distance anymore. In order to remain positive, I must accept his limitations as well as my own. If I don't, we will always be working at cross purposes and I will never be in a positive frame of mind.

I think it is a very thin line between worrying about the FTD symptoms, that will most likely develop, and being prepared for the possibilities. I must find a way to make changes to our home to make it safer for someone with FTD, yet not allow the necessity of the changes to spiral me down into depression.

A big thing that frustrates me, along with just about everyone who is diagnosed with FTD, is people's ignorance of the disease. This ignorance leads to their dismissal of my symptoms and limitations. In addition to this lack of knowledge, there are many others who are knowledgeable about the disease but refuse to believe that I will ever "get that bad." I guess there is an even finer line between non-acceptance and keeping on with life despite the disease.

Last week, a repairman was in our home. He looked down at the crossword puzzle that I was doing and actually said "Don't you have anything better to do?" This man had been in our home once before about six years ago. He did not know me well enough to say this, even if he was joking. I defended myself by saying that I have a brain disease and that it was actually good for me to do. Not only did I feel it was necessary to defend myself, but I was down in the dumps about it for more than a day. I need to become strong enough to not allow other's ignorance or rudeness affect me.

It is okay to be frustrated and slightly fearful. I think it might be possible to have those feelings while convincing myself to maintain a positive attitude. I also need to remind myself that I always tend to become depressed after the excitement of the Christmas holidays. These post-holiday blues tend to linger until the days start getting longer.

I am already counting down until it is time for the Association for FTD's annual spring conference which I will be attending again this year. Perhaps I should add a count down until spring. In the meantime, I will keep giving myself pep talks and kicking myself in the butt as necessary.

I will be putting up post it notes around the house to remind me to be positive. I am sure I will need a lot of reminders, but I can do this!


Saturday, January 7, 2017

Reminders for Caregivers

It has been a while since I wrote a blog entry aimed more at the caregivers. This past week, several things have happened that triggered the feeling that I have been over this before, so why does it keep happening?

The first big one is that those of us with FTD do not deliberately do things to drive the caregivers or others out of their minds. It might seem that way, but a lot of the things we do are not done intentionally. This occurs more and more as the disease progresses. For instance, if the one with FTD repeatedly asks "When is dinner"? While this can be extremely frustrating to the one being asked, it is most likely not deliberate. They actually do not remember that they had asked three minutes ago or elsed remember they asked, but cannot remember the answer you gave.

If the one with FTD has just eaten breakfast and had a cup of coffee and fifteen minutes later wants a cup of coffee, it is most likely they don't remember drinking the coffee or are actually thirsty. My immediate reaction is, give them another cup of coffee. If too much regular coffee makes them jittery or something, switch to decaf, make their coffee weaker than you normally make it or make it half a cup of coffee and half a cup of water. You could also try a substitute like "How about a big glass of ice water, would that work?" If they are asking for breakfast, they most likely don't remember eating it or are having cravings which are common with FTD. Some days you would need to hide all the sweet or carb-loaded foods from me, because if I see it, I will eat it.  Try a strategy such as, "Yes, we just had breakfast, how about we go and do this and then it will be time to eat again." or "You already ate breakfast, how about eating this banana to tide you over till lunch."

You get the idea. Truly, it is not limited to eating. We don't urinate into the closet intentionally, we don't smear poop around the bathroom intentionally, we don't pace around the house intentionally. Why does someone with FTD do these things? Who knows? It makes sense to them at the time, but if you ask them why, they probably will have no clue. Fighting the repeated action will only lead to frustration for the caregiver and the one you are caring for.

Another issue that I cannot stress enough is the "one thing at a time" principal. If the one with FTD is doing something, this is not the time to ask a question. You will most likely get a blank stare, a snippy response or both. When someone asks me a question while I am doing something, it wipes both of them out of my mind. I will be totally confused, probably a blank stare on my face, and shake my head. I wouldn't be ignoring you, it's just that I heard "wah, wah, wah, wah" like the talk on a Charlie Brown television show. It works better if you say, "may I interupt you for a second" then make sure I am looking at you and engaged. Then ask the question.

In the same vein, do not expect me to do a task that involves multiple steps. Perhaps try to ask me to do one step at a time or help me come up with a way to remember all the steps. Perhaps you could write a brief list, then suggest I cross off each step as I do it. If I am folding some laundry, don't ask me what if I want spaghetti for dinner. You will get the same blank stare I talked about before. It is just too overwhelming. I like to describe it as my brain going into a spin and nothing clicks into place. I, literally, can no longer focus on anything.

If I ask a question, give me just the bit of information I am needing. If I ask you "What time is it?" please do not answer with something like "It's 3:30, don't you remember you just watched Judge Judy? She is always on at 3:00." You may as well tell me "Okay, Cindy's brain, start spinning." Then two minutes later, I will probably ask you what time it is again because I got nothing out of your answer. If you say that it is 3:30, leave it at that. I may still forget and ask you again, but maybe it will take 5 minutes instead of 2, but if we're lucky, it will sink in and stay for a while.

This is such a difficult concept for many caregivers to grasp because it doesn't make sense to them. To a normal brain, that wasn't two things, you were just answering the question and making it a little clearer. In a brain that is being attacked by FTD, it cannot work that way. Brain cells are being attacked and killed off constantly and once gone, they never come back.

I remind myself every day to be thankful for the things I can still do, not worry about the ones that I cannot. For instance, I am thankful every day that I can still read. I may be reading books that are probably on an 8th or 9th grade level, but I am still reading and that is something to be thankful for. I am able, in the evening, to go into my darkened and quiet bedroom and read for a couple hours. It calms me enough that I am able to sleep.  On the other hand, if I tried to read a book like I used to read, one that actually takes a brain that still works like mine used to, I would become more agitated and frustrated and would have great difficulty going to sleep. Would I be embarrassed if those who don't know me well realized the kind of books I am reading? Yes, I would be absolutely horrified because above all, I need to retain my dignity.

That leads to a final thought. Please, please, please never say to someone "Oh, s/he has dementia, s/he is too stupid to understand that" or  bump the person with FTD aside and say "You can't do that." You can say, "S/he may have difficulty with that could you explain it again?" or for the second example, "I can help you do that if you would like." Yes, doing it the first way would probably save you some time, but not reacting like that probably saves your loved one some dignity.

Also, a reminder that caregivers may get some benefit and understanding by reading my publication "Coping With FTD" that can be found in my blog entry dated Nov. 12 of 2016.