Sunday, October 23, 2016

FTD and Pain - A Vicious Cycle

Headaches are a huge part of FTD. I seem to have them everyday and everyone I talk to who has FTD also has a headache problem. When I have a headache, the worse the headache, the worse my FTD. My brain just doesn't seem to function as well. I have more difficulty speaking. I get frustrated more easily, as well as more confused. My walking problems are worse when I have a headache. Then, the worse my symptoms get, the more my head hurts. So, is the FTD making my headache worse or is my headache making my FTD worse. And, the answer is... Yes. On both counts, a definite yes and a definite vicious cycle.

It is the same with  most any illness. If you get a cold and feel miserable, can you work or function as well as you usually do? Probably not. If you break a leg, same question. Does the pain and inconvenience not reduce what you can do and your attitude toward everything and everyone? I know that when I had a broken ankle about 15 years ago, it impacted me immensely. Most everything I normally do was impacted. I would go to get dressed only to find that the outfit I had pulled together wasn't going to work because it wouldn't fit over my cast. I couldn't carry the laundry basket up and down the stairs. I couldn't walk any distance at all. I could hobble around the house and go where I absolutely had to, but that was about it. If I over-used my leg, I would pay for it with pain and agony.

I think you can get the picture I am trying to paint. Any extra drain on the body causes stress, physical, emotional, mental or a combination of all of them. I can guarantee you that this is true with FTD because I experience it constantly.

This week, I developed gout in my right foot. I have had minor flare ups of gout in the past, but I would eat a bag of dried cherries and increase my water consumption and it would be gone in a day or two. There was never any inflammation or swelling, just a nagging pain. Not this time, this time it is all of it... serious pain, bright redness and my big toe and most of the foot is swollen to twice its usual size. I never understood when people with gout would complain how bad it was. I thought all cases were as mild as my previous ones. To all those people, I apologize!

I have been behaving. I have been staying off my feet, elevating my foot, applying ice every few hours, taking ibuprofen, all that good stuff. I admit that following directions has helped immensely. I have also done the usual bag of cherries and lots of water. I hope you are really feeling sorry for me by now, because that makes me feel a little better.

Just like any illness, or the chronic headaches, the gout has affected me in more ways than I would have thought. I have been a total grouch and it can't be really pleasant to be around me. (God bless the caregivers who have to put up with someone with FTD) A lot of FTD problems are brought on or worsened by frustration which makes the FTD symptoms worse, which makes the frustration grow and it goes on and on.

With my foot is so much pain, I can't walk around much at all and when I do, ouch. I am staying off my feet, so I am set up on the couch with my foot up on the footstool topped with pillows. I have stuff all around me and on my lap. Getting up is a real inconvenience. My brain doesn't remember that my foot is propped up and there is stuff on my lap. I just kind of stand up and everything goes where it wants to. I get up and do whatever it was that prompted me to get up. Then I get back to my cocoon spot and have to figure out what to do with all the stuff. It is all so frustrating and brings out my downright meanness. The frustration makes my head hurt more. The headache makes it harder for me to get up and down because, as I said above, the headaches cause frustration which makes my FTD symptoms work.

So I should stay where I am and ask my husband to wait on me. I should only get up to go to the bathroom and go to bed. The problem with this plan is that the more frustrated I get, the less I can communicate. My words get all garbled up and I can't come up with the words or explanation for what I want. This leads to more frustration, which leads to my head hurting more. It also fails to remind me what a mess I make by getting up.

Okay, I will stop with the never ending cycle. I think you get the idea. It all feeds off each other and the FTD continually rears its ugly head. It also means that you do not want to come visit me for a couple days. That is, if you don't want me to try to bite off your head. Actually, that is probably not true. You don't have to worry about me attacking, I would have to get up off the couch and it's too frustrating to do.

The good thing is, gout kind of takes care of itself if you behave and follow orders. It is usually gone in a week or so. Next week, when I blog, I should be able to focus and make more sense.

Sunday, October 16, 2016

Can You Hear Me Now?

Riddle me this... What do you get when you get someone with FTD and someone with hearing problems together?  Oh, wait, that isn't funny at all. Then again, neither is the circumstance.

When scrolling through the support groups for FTD that are open to both caregivers and those with FTD, they seem to be monopolized by caregivers venting about their situation. They also vent about the person for whom they are the caregiver. If you skip over the ones that are pure resentment, you are pretty much left with the ones dealing with the frustrations of the caregivers. I can totally understand this and probably take less offense than most of us with FTD, because I have lived the caregiver role as well. It does boil down to frustrations: frustrations with the disease itself, frustrations with the one with FTD, frustrations that they have no support system, and frustrations that the world doesn't acknowledge FTD. This last one is especially true when you are trying to arrange benefits such as disability insurance, medical insurance and on and on.

What I have found in my own dealings with FTD, is three distinct "hearing losses."  When you read the posts or speak with someone who has FTD, you realize the frustration issue is true. The frustration level of dealing with FTD is often overwhelming. Every time a new symptoms appears or an existing one worsens, you get a whole new batch of frustrations. When you are trying to communicate with someone who does not understand FTD, it leads to total frustration. When people give you unsolicited advice on how to cure your disease produces extreme frustration, and sometimes anger. When someone tells you that you look good and can't possibly have dementia, you feel like screaming. Of course, this comes from peoples believing that dementia means memory loss.

These situations lead to a type of "hearing problem" of disbelief. People filter what you are saying through their own understanding and opinions of what dementia is. If they realize that you are having a lot of symptoms similar to those with Alzheimer's Disease, they quickly jump again to the conclusion that dementia equals memory loss, along with dementia equals Alzheimer's. They don't hear or believe another word that you say about FTD. Many people assume that you just don't understand or don't remember what is wrong with you. The other reaction is that since there is no, or minimal, memory loss, there is nothing wrong with you.  This "hearing problem" is ignorance of FTD and an incorrect understanding of the word dementia. I think these people believe that if they have never heard of FTD, it does not exist. People like this will never be part of your support system for you or your caregiver, mostly because they don't think it is needed.

Another type of "hearing problem" is denial. People don't want to believe their is anything wrong with you. If they don't listen to it or accept it, it won't be true. They want to believe that your symptoms won't get worse and that you won't develop any new ones. I get that a lot, especially from some of my family members. If I express concern about how I will deal with a symptom that I know is worsening, will worsen or if I am starting to experience a new symptom, I may as well not say a word because I know what I say will be ignored or brushed aside. Most often it is like looking into a blank face with no reaction, no response, nothing. I don't know whether what I said was literally not heard or if it is being blocked out because if they acknowledge it, it might happen. The third possibility, in my mind, is that they just don't care and are dismissing whatever concern I am expressing. In reality, I am sure that is not the case, but I cannot help but worry that it is. Can you imagine, trying to discuss something that scares the crap out of you and getting no reaction? Trust me, it hurts immensely! Leads me to talk to myself!

The third type of hearing problem, really is a hearing problem, a physical problem. Often times, a person with FTD starts speaking more softly than they did before FTD. If the caregiver has hearing problems, this becomes a difficult combination. This leads to extreme frustration for both parties. Fortunately, some times, it leads me to a lot of laughter. I will say something and the response will be something like, "I didn't get that". I, of course, will repeat it a lot louder. Then I get the response of "Shhh... you don't have to yell!" The other circumstance that will lead to laughter, unless I am already frustrated, is when I say something and get a totally different statement said back to me to verify what they heard or to seek more information. Something like, "I think I will make chicken for supper." and when it is repeated back to me "What kind of Tupperware?" Extremely frustrating, but at least understandable, especially when it at least rhymes. Frustrating, because I think hearing aids would solve the problem. This "real" hearing problem is not nearly as frustrating as the others, but it adds to the aggravation of not getting a response after saying something. Now, I don't know if they don't care or if they choose to ignore it so they don't have to think about it, or if they actually did not hear me. Again, I end up repeating it, but more loudly. It just creates a vicious cycle and usually prompts a resentful answer.


Sunday, October 9, 2016

The Great Cookie Disaster

The next time someone dares to say to me, "You look great, are you sure there is anything wrong with your brain?", I will probably lose it. Hopefully, though, I will remain calm enough to invite them over to my house to bake some cookies with me.

Someone whom I love deeply was in a crisis situation last week. It was mentioned that she only wants to eat ice cream. My response? A very quick "So get out the ice cream and dish it up!" Then I asked if she would like some cookies to go with their ice cream? Of course the answer was a huge "Yes!".

I learned to bake at a very early age, sitting on a step stool next to Grandma's kitchen counter. Once I started, I never stopped. I would bake all kinds of desserts and there was always a homemade treat for my dad's lunchbox. When my sister moved to the dorm for nursing school, every weekend she returned with homemade cinnamon rolls, cookies or homemade donuts. That was way too many years ago. Let's just say it was well over 40 years ago.

When our daughter was born, I took cake decorating classes so I could make her awesome birthday cakes. I have even made a few wedding cakes. Not many though, it is way too stressful because it has to be perfect to please the bride and all the guests. When she was three or four years old, I started baking Christmas cookies with my cousin who had boys the same age. The kids could play and we could bake. Between the recipes I had and the recipes she had, it turned into a big thing. These weren't chocolate chip cookies, these were very special cookies and some required some skill (and lots and lots of butter)!

Eventually, we moved across the state but I kept on baking. More and more people discovered my cookies and demanded a cookie tray at Christmas. At one point, I was making more than 100 dozens of cookies each Christmas season.

So why I am I telling you about this? Am I trying to brag about my baking skills" No, not at all. Even after the onset of FTD, I kept on baking. I didn't make all the kinds every year. I made the absolute must-haves and then would choose a few more and then choose different ones for the next year. I was probably down to around 75 dozen. The past couple years I have struggled, but then my therapist suggested making a copy of the recipe and checking things off as I went. Perfect idea! It still took me more days of baking, but I was so proud of myself last year when I got them done.

So, these are the kind of cookies I am talking about sending. Yesterday, I picked out 3 types to make. I made it through the first two, saving the "easiest" until last. This was a basic roll-out sugar cookie that I would cut into pumpkins and ice orange for the Halloween season. I have been using this recipe for 50 years, so no sweat. Yeah, right!

I made up the dough and for some reason, it just didn't look right, so I tasted it. No sugar! It doesn't work to add the sugar in at the end, so I threw out the dough and made another batch. At the end, this dough was too crumbly. I measured the amount of dough and realized I had used a cup too much of flour. No way to fix that after all the other ingredients were mixed in, so that also went in the trash. After asking my husband to run to the store for another dozen eggs, I made the third batch. Third time's a charm right? At the end, I tasted the dough and realized I had left out half of the sugar.

I gave up! I threw in the rest of the sugar and mixed it in. The cookies ended up a different consistency, but are edible. I figured if I put a little extra orange icing on, no one would be the wiser! Today, I made a fourth kind to make up for the disaster cookies and will box them up and mail them all tomorrow. If I had not tried to make three kinds in one day, I probably would have been fine. Except for 2 dozen that are on the very well done side, the others came out perfectly. I will keep those home and can be very proud of the finished lot that I will send.

The problem is, I am feeling broken hearted! After I was done baking yesterday, it hit me that my days of Christmas cookie baking are about done. If we would move closer to my daughter, she would help me, but she is the only one I could allow to help me. Anyone else in my kitchen would make the situation worse. So I cried and felt sorry for myself last evening and all night long. I didn't sleep much and am feeling quite dejected today. I know I will work something out. I will only make the easier ones this coming Christmas season and that will have to do. That isn't the issue though. The issue is that it will become worse and worse. Following a recipe is so difficult for me. Remembering all the ingredients and what order to do things is even more difficult. Most of my recipes are just lists of ingredients because I knew the rest and believed I would never forget how to make them.  I have typed out all the recipes, including directions, to pass on to my daughter. I decided I had to do that before I totally forgot.

How dare this horrid disease steal something so important to me? How dare this disease make me spend so much more time in the kitchen because I have to be so cautious to not fall or drop things, not to mention burning myself. It has already stolen so many abilities from me that there aren't very many pleasurable things left for me to do. Now it has taken this. I really, really hate this disease! FTD sucks!!!

So, to all my acquaintances, beware what you say to me. You can tell me I look nice today, don't tell me how "good" I look and infer that there is nothing wrong with me. I may pull out a cookie sheet and fight back!