Totally Frustrated, Again

I must write a blog entry today to release some of my frustration. This one is to hopefully explain something more fully to the caretakers who might be reading this.

I constantly say "Please, one thing at a time!" and have mentioned that concept many times in my blog entries. It seems like such a simple request, yet I keep finding that caretakers cannot grasp the meaning behind the request. Not only do I witness this in my own home, but also read about the same problem on a couple of the online support groups' postings. It shows up often on the support groups that include caregivers more so than those with FTD.

I am guessing that it is the question about just what makes up that one thing. I think when I say "one thing" it is heard that I cannot, for example, jump rope and chew gum at the same time. Forget the gum! The problem, for me anyway, is figuring out how to turn the rope and move my feet at the same time, maybe even just how to use both arms to turn the rope.

It is also answering any question while I am doing something. If I am reading the directions on a package of food, if I am asked something like "What temperature does it say?" I am totally thrown off. Yes, I usually end up lashing out at the one asking the question. Am I angry with that person? Not really, but I am so very frustrated because I have to answer "I don't know yet" or answer the question and then start at the very beginning of reading the instructions again. Repeat something like this a few times and I am ready to throw the package at the person asking the questions.

Sometimes, I do literally throw something... usually in the trash. Again, it is not because I am truly angry. It is because I have reached the level of frustration that the only option I can see is to give up. I have lost all interest in the task I was attempting and no longer care if it gets done or not.

At that point, the person who helped bring me to that point says something like, "Please stop" or "don't be like that."  Wrong response, no matter how you look at it. First, this is like reminding me that I failed and dismissing my anxiety and frustration. Secondly, I don't do it on purpose!  It is the horrid disease preventing me from doing something that should, and used to, happen spontaneously, without even thinking about it. Instead of calming me down, this type of response just adds to the frustration level to the point that I feel depressed because I am so useless and because I irritate everyone.

Come to think of it, many of the issues that I experience or witness with others, are also the result of the caretaker not being able to understand what we are experiencing. For example, if I am pacing or wandering around like I am lost (some even leave the house and roam around outside which can be quite dangerous) or sleeping during the day, it is usually because I am so bored and frustrated that I cannot do anything. Most days, my choices come down to whether I should clean the house or read or sit and do nothing. Not much of a choice. At least I am still fortunate enough to be able to clean the house and read. But these options are nothing compared to the abilities I used to have, back when I felt I was actually contributing to society. Again, just that feeling of being useless and a burden to others.

It works the other way too. I have to constantly try to stop and think about the frustrations of the caregivers. This, though, is nearly impossible with an FTD mind, but I keep on trying.

 

Too Much Christmas

Yikes!  That is the best way to describe the past week. My blog entry last week was almost congratulating myself because I had finished the cookies and had all the preparations made in advance of the Christmas weekend. It is so easy to disillusion one's self.

It truly was awesome to have my daughter home for the entire week, but I had placed too much confidence in myself based on her being here. I could tell she felt pressured by everything I wanted her to do. She really enjoyed several visits with family and friends. What I didn't calculate into the formula was that this was her vacation. She had saved up her vacation days for this week long visit and expected to be able to relax.

I couldn't relax, though. I had my visions of how everything should be and what I should do to make it so. I tend to bury my head in the sand when it comes to admitting that FTD limits what I can and cannot do. By Christmas Eve, I had put so much pressure on myself, that I had a major breakdown. My daughter and I had driven (a 3-hour round trip) to visit some family she wanted to see while she was up here. That took a six-hour chunk of time out of all the preparations I needed to do for Christmas Eve dinner, Christmas brunch and Christmas dinner.

Don't get me wrong, I would not have given up that visit for anything. That chunk of time, however, had me working in a frenzy to get things done. My husband was napping and my daughter was tired from the trip and was also napping. I started the preparations. I made the egg casserole we always have Christmas morning because it needs to sit overnight before baking. I cleaned and de-stemmed three pounds of spinach, some for the casserole and the rest that was supposed to be for the spinach pie I was making for Christmas Eve dinner. Small tasks, such as scrubbing the potatoes for the next day, piled up and I was exhausted beyond being able to do another thing. I gave up making the spinach pie (but used the filling for Christmas dinner vegetable instead of what was going to make, so  it didn't get wasted). I cleaned up as best I could in my exhausted state, then woke my husband from his nap and told him all the prep was done for Christmas and that I didn't give a hoot (actually I used a much nastier term) what they ate for dinner, and I went to bed. Fortunately we had dined out the night before for our wedding anniversary so they had some really nice leftovers to eat.

Several hours later, when I ventured out from my room, they both asked the logical question of "Why didn't you wake us up and ask for help?" Seems rather obvious, doesn't it. But I couldn't do it. I had always done it all and expected me to do it all myself.

In addition to the Christmas Eve meltdown, I learned the hard way that the evil symptoms of FTD seem to get much, much worse when under stress. I spent much of the week not being able to swallow most foods and spent much of the week trying to speak. In addition to the stuttering I have been doing for a few months now, I would end up stammering a single syllable in the middle of a sentence until I would stop trying to speak. Once I stopped, which was often difficult, and calmed myself down, it was enough better that I could get the thought out.

All the Christmas week commotion brought out that no matter how many times I tell my family members and friends that I can only focus on one thing at a time, they just don't "get" it. Something as simple as putting cookies on a plate is one thing. If I get asked if I want them to serve drinks, is another. Even when I would start stammering and stuttering, they didn't understand. One thing is a simple task, one step in a task or even trying to formulate an answer to a simple question is my one thing. It is not the time to ask me anything or suggest anything. I end up not being able to do either thing, my brain becomes a big tangle of thoughts and nothing at all makes sense

I did wise up a little bit. When Christmas dinner was done, I got up from the table and went into another room. They got the hint and all the clean up was done.

Bottom line, lesson learned. From now on, no holiday dinners or celebrations will be hosted by me. Please, someone remind me of that when Easter gets here!

One side note. My daughter brought her two cats along for the week. Once they got used to me and would snuggle with me, I realized how comforting a pet can be to someone with FTD. I think it would be important that someone else was willing and able to care for the pet, but the comfort of a pet could be a true gift. Of course, it seems selfish to ask your caretaker, who is already stretched too thin, to take on another onerous task!

Today, everyone has left and left a huge void. Even with all the crappy stuff, it was a wonderful holiday!

Trying for the Perfect Holiday

So, here it is, one week until Christmas, just seven days to go. Christmas has been my favorite holiday ever since I left my childhood home. I would often spend two months getting ready for it to make it special for our family.  Somehow, it would all come together with ease.

This year though, I struggled with baking cookies. Many people clamor for my cookies come Christmas time, and I have always tried to make everyone happy and made as many favorites as possible. I cut back this year, only baked 68 dozen and eliminated a couple of the really labor intensive ones. I just couldn't get into the groove of it this year. Used to be, I had a system going and cranked them out, enjoying myself the whole time. This year, it took twice as long, I made at least three times the mess.

The cookie baking during this Christmas season has been just too much stress and, yes, I do know I put it on myself.  The cookie baking is very time consuming but I crank up the Christmas tunes and get into it. I enjoy the smiles on peoples faces when I deliver their cookies to them. I have learned, though, that the enjoyment is diminished by the exhaustion I am feeling. But the cookies are all in the freezer waiting to be put out onto trays. I delivered one tray yesterday and the rest of them will be delivered this coming week.

I did manage to do almost all the Christmas shopping online which helped a lot, but if I bought any of the wrong things, it is going to make it more inconvenient to return or exchange. I think it was a wise choice, even with that risk.

The best news in a long time: I am so very excited because my daughter and my grand"kitties" arrive tomorrow. They haven't been here for two years and they will be here for an entire 7 days, not even counting her travel days! That means lots of friends and family to visit. I have attempted to keep the schedule down to one event a day to help me stay calm. However, I have had to double up on a couple days. I know my daughter will be a big help at keeping me calm, she always has. She just seems to have an instinctual knowledge of when I need to get away for excitement or confusion, like loud noise or lots of people talking at the same time. She will protect me. Sitting here thinking about it, however, has me feeling quite anxious.

I have menus planned for most of the days so now I know I must make up a grocery list so I have everything on hand that I will need. I am determined to keep Christmas dinner simple, standing rib roast, twice baked potatoes, cauliflower casserole and rolls. That's it! Anyone wants something else, they are free to make it and bring it with them. Christmas brunch in the morning is another tradition with us, but Kris will help me with that. Plus, the mimosas we always have with brunch should help keep me at ease. As long as I don't have so many that I can't do the dinner!

All those issues aside, I am still sitting her feeling anxious. I read an article in a magazine today and from that, I kind of figured out what my problem is.  I am so afraid that this will be either my last Christmas or at least the last one I can do for the family, Because of this fear, I want everything to be perfect for everyone, for my daughter, my husband, my sister and, yes, for myself. I feel like if I mess up the scheduled events and visits, I will ruin it for everyone. I feel like if the Christmas dinner isn't perfect, I will ruin it that way.

When I slip and say something to a family member, they say that they will do this or that. I cannot accept that though. In my mind, if I don't do it, it won't be perfect. If this is to be my last Christmas, or the last one I am capable of putting together, it MUST be perfect.

It will be perfect enough, I am sure.  Let me take the time to wish you a very Merry Christmas and for my Jewish friends, I hope you had a wonderful Hanukah

Dealing with Mental Issues

I am so very thankful that I have a psychologist who helps me. Not only is she a psychologist, but she is one who specializes in dementia patients. No, I do  not think that FTD is a mental health problem, but dealing with FTD can become a mental health issue.

I first sought out my psychologist when I was at an ultimate low and felt like I was at a breaking point. This was triggered by the frustration of being told by a prominent Alzheimer's research program that there was nothing wrong with me, not even MCI (Mild Cognitive Impairment). This was especially frustrating because one of their co-directors is the Neuro-Psychiatrist who first provided my diagnosis and had it confirmed by two SPECT scans, a year apart from each other.
I, of course, knew there was something wrong with my brain and was panicking that I would lose my Social Security Disability. It is only $800 per month and didn't come close to what I was making while I was working, but was certainly a big help to the budget.

I started calling around, especially to the largest psychiatric center in the area and they had no one who was familiar with FTD. They later, after I had also found her name, called me back with Dr. Spayd's phone number and recommended I call her. I was very fortunate that she did not have a waiting list at that time and got in to see her within two weeks. Good psychologists in this area are in high demand. I am now down to seeing her just once a month  or more often if I have a crisis. Oh, and the report from the research center was incorrect.

I probably wrote about this in my blog when I first started it. What prompted me to write about this subject today, was a mini crisis. I immediately pulled out my calendar to make sure I was seeing her this week and I am scheduled for Wednesday. I think I can make it for three days.

It boggles my mind sometimes how I can be going along just fine, coping with everything that FTD throws in my face, then wham-o, something knocks me down. It is usually just something that seems so little and inconsequential, but when it gets piled on to everything else that someone with FTD deals with everyday, it becomes a crisis.

This is, of course, the holiday season which puts stress and strain on most everyone. As I wrote about last week, I thought I had everyone laid out in a way to limit the stress. I was setting smaller goals for each day to not only keep me from getting worn out physically, but mentally as well.

Today I had scheduled (well actually it was yesterday, but wasn't up to it and moved it to today) to wrap all the gifts. I have always disliked using gift bags for Christmas gifts, it just seemed to me that it made it look like I wasn't willing to make the effort to wrap the gifts. Plus wrapped ones look so pretty under the tree. I had finally convinced myself to at least use the bags for most gifts. When I mentioned to my daughter that most would be in bags, but everyone would have at least one or two wrapped ones. She, wise woman that she is, said "Why do you have to wrap any? Bags are fine!" So today, I spent about 2 1/2 hours working at it, and everything was packaged up looking pretty darned good, if I must say. I was feeling really good about it and about myself for accepting that I didn't have to do it all!

Then my husband comes up to me and asks if I didn't leave any paper and bows out for him. I explained, once again, that I was using gift bags and I did leave some out for him. He was adamant that he much preferred wrapping paper and bows because he was used to things being wrapped that way and thought it looked better.  Gee, I wonder why I overreacted to that? Of course what I heard was that I was unable or too lazy to do things the "right" way. I doubt that he meant it like that at all, but, after feeling so good that the task was done and proud of myself for accepting the alternate way of doing it to make it easier, I sat for an hour with tears in my eyes, feeling like I was, once again, letting my family down.

I know the psychologist is going to tell me that this is his issue, not mine and that I am wise to cut back on the efforts needed for Christmas. I don't want to be exhausted once the holiday gets here. My remaining task is to start baking and freezing cookies. I make between 50 and 100 dozens of cookies each year to share with family and friends. Everyone looks forward to them and I view it as a gift of love. It does take a lot of effort, especially with FTD, which makes it difficult for me to follow a recipe, even ones that are very familiar to me. That is why I have done everything else early this year, so I would have the energy and time to do my baking.

I know that is what she is going to tell me, but I really need to hear it. That was why I was so relieved that I had an appointment in three days. I think, just maybe, I can keep from screaming at my husband and breaking down until then! I am so thankful that I found my psychologist and that her office is right here in our tiny little town. I don't think I would make it through this FTD battle without her. I think seeing a psychologist, especially one familiar with FTD, would benefit the one with FTD, as well as the caregivers. I don't think they should both see the same one though,

Choices

Much of our life comes down to choices. Where should we live, who should we marry, how many children should we have. Now these are certainly life changing choices. Sometimes, though, it is the smaller choices that give me the most trouble.

Since FTD, making choices is one of the most difficult things for me to do some days. Where would I like to go? What would I like to do? What shall I make for dinner. These choices are certainly not life altering, but definitely will make a difference in making my day to day life as comfortable and calm as possible.

I am finally learning to make some choices that I recognize just might make my life with FTD a little easier. For instance, decorating my home for all the holidays. Yes, I tend to get carried away and have multiple totes full of decorations for every holiday. This year, during Halloween season, I was busy and feeling down a lot of the days. My choice then was to not decorate the house. I put something up on the two exterior doors to great those who visited and pulled a my Halloween table runners out of the totes. That was it. Amazingly, the holiday still came and I was still ready for trick or treaters and the house still seemed somewhat seasonal.

Once I realized the world had indeed not come to an end, I did the same thing for Thanksgiving and just grabbed a few things out of the several totes for that holiday. Once I put the real turkey on the table, no one cared and I didn't feel like a total failure.

So, along comes the BIG one! I have at least six full size totes of decorations, plus one of lights and one extra large one of tree decorations and a second extra large one full of larger decorations for out on the porch. I am not even counting the one tote full of Christmas shirts and sweaters or box with the tree itself. (Yes, I use a fake tree. Helps, since I'm allergic to real ones.) There's also a wreath stored under the bed. I am sure you get the picture. Yes, I love holidays and making them special for my family and friends.

All this led up to a big choice. How much to decorate for Christmas? I asked my daughter if we needed the tree up. Her response was an immediate "Yes!" She will be arriving here on the 23rd, so she offered that we could decorate the tree on Christmas Eve. Uh, no. If I am going to put it up, I want to enjoy it for the whole month. So the tree stays. Determined to force myself to cut back, I only asked my husband to bring up the tree, the decorations, the decorations for the porch, my large nativity set and what I normally put on the mantle. That is only two of the regular sized totes, the rest are still in the garage. I made the choice and I stuck to it.

What amazes me is that the house still looks well decorated with only about half of my usual stuff. Plus, there is the added bonus of not having as many things for my grand"kitties" to knock down.

The other wise choice I made was to not try to do it all in one day. My husband helped me decorate the outside on Friday. Saturday, I put out most of the decorations, except my big nativity set which I set out on Sunday. Hmm... rather appropriate to do that on a Sunday. Plus I assembled the tree. Tomorrow, I will decorate the tree.

I have also convinced myself to use some gift bags instead of decoratively wrapping all the gifts. Most will go in bags, with a couple wrapped ones for each person.  Today, when assembling the tree and putting the top decoration on, my husband was making "helpful" suggestions on what I could do to make it just a little better. I told him that it doesn't have to be 100% perfect, we can accept 80%. Then I realized, I needed to believe that too. I think I am well on my way to accepting that.

After all the decorating, will come the cookie baking.  Nope, not cutting back on that. I get so much pleasure out of sharing my cookies with family and friends. I will stretch it out to more days, but not cut back. Fortunately, most of them freeze well, so I don't have to worry about making them too soon.

I think I have made a lot of good choices for the holidays. I am darned proud of myself... finally learning to respect the limitations that FTD puts on me. It is much easier to embrace them than it is to fight them!

Thanksgiving

I feel like writing something completely different this week. This is the week of the Thanksgiving holiday, time to be thankful. Of course I am thankful for all the usual things, my husband, my daughter, my sister, as well as all the rest of my family, including my step-family who are to me just family, no "step" about it! I am thankful for the roof over my head, my comfortable bed, that my house is warm and dry and that we never go hungry. I often went hungry as a child, so that one is much appreciated.

Sometimes, though, it is the unexpected things, the kindnesses of people I did not know well or the beauty I had never seen before that day. I'll start with that one. Yesterday, my husband was driving us to our local hardware store. The day was chilly, in the low 40's, but the sun was shining brightly and the sky was as blue as it gets. Add to that, the beauty of a couple white puffy clouds and some white intersecting jet contrails, it was just glorious.

When we arrived at the store, it was much more crowded than I like. If you have read previous blogs, you know that I, and most others with FTD, do not deal well with crowds. Most of the employees (or as they advertise, the helpful hardware folks) in this store are very knowledgeable and helpful. This day, however, we were assisted by a young man who knew a whole lot less about what we were looking for than I did. I think he was a relatively new employee. Between the crowd and the frustration of him, I was ready to leave. Just then, in walks Carla, my favorite person there. Carla knows everything! Plus, she picked up, probably a year or so ago, that something was different with me and asked my husband the next time he went in alone. After asking for my permission, he explained my FTD to her. She was always patient and helpful, but now when she sees me, she gets a beautiful smile and greets me, steers me to less crowded areas and calmly figures out just what I need. Such a patient and loving soul.

It is things like this that make me thankful from day to day. In the same vein, this past Friday, my sister took me out for the afternoon. First stop was our local CVS drugstore. Once I was at the register, I was confusing myself and getting agitated. I looked at the clerk and said "I'm sure you remember I have a rare dementia."  She assured me it was quite okay, to take my time and not worry about it. I said I figured that it was okay since no one was behind us in line. Her response was that it didn't matter who was behind me in line, I should always take the time to do the transaction to  prevent getting agitated and that she could always call someone else up to open another register.

Second stop was again another store. When I made it up to the register that time, I searched and searched and could not find my credit cards and of course started to panic. I do not usually carry much cash because it confuses me, but fortunately that day I had some. I dug our the $23 that I had, bummed five from my sister and paid in cash. Of course, then, I found my credit cards right where they belong in a pocket of my purse. He, just like the woman at the drug store, reassured me to stop worrying that I was the customer he was dealing with and it would take as long as it took to complete the purchase while keeping me comfortable.

Third stop, the craft store. My sister was shopping in the fabric department and low and behold, the only person working the department is someone who assisted me a couple years before. From what I was buying at that time, she realized that I must crochet nylon scrubbies and told me how much she loves them. I offered to bring some in for her, that I would not take money, but she should pay it forward sometime or put a little extra in the offering plate at her church. We recognized each other and she again thanked me. Even though I find it difficult to make them anymore, I did have a basket full of them at home and made the same offer again. It just made me feel good to see her again and brighten her day a little.

Fourth and final stop, a late lunch. Our server was looking a little harried and I asked if they had been busy and he said it had been very hectic and lots of grumpy customers. I told him he was lucky then because now he had our two smiling faces to cheer him up. We ended up having a really good time with him and he was ever so very friendly and helpful. We mentioned that we would be coming back for dinner for my sister's birthday with the whole family. He pulled out his phone and made a note to request to work the evening shift that day instead of the usual day shift so that he could serve us again, so I guess he had as much fun as we did.

So this week of Thanksgiving, these are the kind of things I will focus on. These are the kind of things that make this disease bearable, every time I experience what I call "random acts of kindness."

Knocked Out by a Simple Cold

Every winter, for as long back as I can remember, I have ended up with a heavy duty case of bronchitis. I catch a cold, it becomes bronchitis. Just the way I work. I have become one of those obnoxious people who go to extremes to prevent it. I use the antiseptic wipes in stores to clean my cart. If they don't provide them, I use hand sanitizer gel to clean it. I put on a face mask in doctors' waiting rooms. After all, there are sick people there. On the other hand, I return the favor, if I am sick with a cold and need to visit a doctor's office, I wear a mask since I don't want to spread it to anyone else. I avoid shaking hands during cold and flu season when at all possible. I avoid crowded places, which I now do anyway because of the FTD. I needed to do these things when I was dealing with chemo treatments a few years back and have just stuck with the whole rigmarole. And, yes, I get my flu shot religiously. I do not understand why anyone would not now that they do not use a live virus in the serum. But that's just me...

Last week, my husband and I visited a store, then decided to have dinner at a very popular restaurant. Sure enough, three days later, I had come down with a cold. It is almost gone and I seem to have avoided it turning into bronchitis. (Knock on wood here.) I am very happy about that and am praying that it doesn't continue to linger.

Reading posts from others dealing with FTD, I have often seen them talking about how any little illness can throw them for a loop. That made sense to me, since we tend to be weary a lot of the time and other illnesses will make you feel that way as well. Reading about it and experiencing it are two very different things.

This cold wiped me out, sapped all my energy and made me miserable. As I have mentioned many times, I have a chronic headache, similar to a migraine, constantly. When you add sinus congestion into the mix, it becomes massive. I have spent a week not wanting to do anything at all. I have not even wanted to read, the one pleasurable thing that I can still do. When I don't read, that is a huge sign that I am sick.

I know this is probably ending up to be a very boring post. I'm sure many of you are saying something like "What a wimp. So she has a cold. Big deal!"  I totally agree with you. That's how I felt all week as well. Then I spoke with a few people with different chronic illnesses and discovered that they experience the same thing. It seems when your body is constantly under attack from a chronic illness, it doesn't have many reserves left to fight something as simple as a common cold. It makes total sense and I don't know why I had not thought of it before.

When we were dining at the restaurant, low and behold, who gets seated right next to us? My ex-boss and her husband. Yes, the ex-boss who decided I could no longer work for her because of my FTD. (She was probably right, I just believe she handled the situation in a horribly nasty way.) At the restaurant, she tried to ignore me, but I am the kind of person who doesn't deal with things that way.  Kill 'em with kindness. It usually shifts that awkward feeling from me back to the one who should be feeling that way and makes me the bigger person anyway. So, on our way out, I stopped by their table and exchanged "pleasantries" with them.  Can you guess who I blame for giving me the cold?  You got it!!!

No Need to Hide FTD

I am learning, slowly, but I am finally learning. Having FTD is nothing to be ashamed of. It is not something I brought on myself or came down with in a dirty way. After all, it is FTD, not STD.

I am finally learning that it is okay to tell people that I have it. Of course most have absolutely no idea what it is, so what I say is "Please bear with me, I have a rare form of dementia and I need your patience and tolerance."  This is usually enough, and I am reassured that it is quite alright and I am doing fine. Once in a while, I will see that dreaded look of pity, but most often, it just causes the person to slow down, to listen more closely when I am stuttering, and patiently explaining something for the third time. The interesting thing that I have noted is that young people are much less likely to understand. I am guessing it is because they are young and still feeling immortal. I refuse to believe that it is that they don't care.

Many people have referred me to the site http://www.theaftd.org/life-with-ftd/resources/awareness-cards  Here, you have access to several varieties of business card size awareness cards that you can give to someone when you are trying to deal with them. The ones for the caregivers to give to people when I am acting strangely and embarrassing them are probably a good thing. However, the ones that say "I have FTD..." would make me feel weird handing them out. If I get to the point that I cannot talk very well at all, then I will use something like these cards. While I still have a voice, I think it is better for me to just tell them.

A few weeks ago, I was in a restaurant with my husband and our daughter. This was a restaurant we have dined in a few times because it is near our daughter's home. Driving in, we noticed that something was being built in an adjoining lot. After the hostess seated us, I asked her what was being built and she told me it was to be a hotel and what brand it was.  We had a wonderful dinner, great service, great food and a great visit with our daughter. When we were leaving, the hostess wished us a good night. Then, I asked the hostess what was being built next door. When I saw the expression on her face, I thought "Uh-oh, now what did I do."  I finally said "I am guessing I already asked you this." She acknowledged that was true. So I just asked "And what did you tell me?"  She answered again about the hotel and the weird looks continued. So I apologized and explained like I said above, "I have a rare form of dementia and sometimes can't remember." I don't think I will ever forget her answer again.  It is to be a Drury Inn, that is now locked into my memory.

It used to be that I would have been horror stricken I had done something like that, but I have gotten over it and just tell them about my FTD. Of course, those times when I say something and get a flabbergasted look back and cannot remember for the life of me what I said that might have been offensive, I don't say anything at all. I guess that is where the cards for the caregiver to hand them would work well. These instances kind of "freak me out." I usually end up just looking back at them with a puzzled look, because either I don't think what I said should have been offensive or I just cannot figure out what I said at all. Occasions like this literally wear me out. I get angry at myself because I did it again, plus I feel guilty and the strain of trying to figure out just what I did is exhausting.

Sometimes, I think I should get a T-shirt that says "No, I'm not stupid... I have FTD." Then I wouldn't have to say a word, just point to my shirt.

FTD... Freeing The Demon

Some days, I feel extremely stressed and angry. I would think this is pretty normal for anyone dealing with FTD. Some days, my almost constant FTD headache is worse than others and is definitely worse on the days that I am feeling stressed and angry. The disease just plain sucks, as I have probably said before.

I have been trying to figure out why some days are worse than others.  It is pretty easy to see how the stress and anger would go hand in hand. If I am more stressed, it would certainly be easier to become angry, even if I am just angry that I have to feel stressed that day. Of course the reverse would be true as well. I think anger probably stresses anyone, FTD or not.

I have posted many times about how those of us with FTD can only handle one thing at a time. If I am trying to read, don't interrupt me to ask a question unless absolutely necessary. If I am cooking, don't start talking to be about anything. Don't even ask me (at least not more than once) if I need any help. Don't ask me if I want you to set the table, just do it! I could go on and on with examples, but I am sure everyone gets the general idea.

What most people don't get, and I just figured it out recently, is too many questions is just the same as trying to focus on too many things. If you come to me to ask a question, once I have given you my answer, it is time to drop it! If you keep going, giving me several options of how else it could be or keep telling me why you think your way is best, I am going to snap. I guarantee it.  Once I answer a question, I am done with it. If you truly did not want my opinion, why ask me and then try to convince me otherwise.

The other factor is that I am not usually sitting around just waiting to be asked a question or given information about things that I don't care or need to know about (i.e. sports). Stop and think about it. I am fortunate enough to still be able read, which I celebrate often in these blogs. It does, however, keep getting more difficult. Some times I need to reread a page a few times to understand what I am reading, or go back a few chapters to try to remember why such and such is happening now. This can be stressful, but if I am sitting in a quiet room by myself, I can handle it and still enjoy the reading. However, if I am sitting on the sofa and someone else is watching television, it becomes a problem. I usually do pretty well at blocking out the noise of the tv, but if someone starts commenting on what is on the tv, it is an entirely different situation. Now I actually have 3 things going on... reading, blocking out the tv noise, and having to listen to conversation. Another example that pops to mind is that if I have been brave enough to face shopping and I find something I want to buy, I don't need anyone picking up something else and saying "maybe you like this one better" "or are you sure the color is right?" If I am brave enough to face a store, I want in and out quickly. Find what I want and get out. That is more important to me than dithering over which one is the most perfect. A little bit perfect is just fine.

Today, I was unloading trick or treat bags. We usually get around 20 costumed visitors, so I made up 30 identical bags. That way, I would not have to deal with kids grabbing things out of my basket or asking for a particular kind of candy they can see, because that caused a lot of stress last year. It worked perfectly! Well, it worked perfectly because we only had one kid show up. He was cute enough to make up for not having any more... the cutest little blue furry dinosaur ever!!!  Anyway, today I decided I should separate everything out of the treat bags. I was happy, sitting on the sofa, making piles of the different items from the bags.

Earlier in the day, I had asked my husband if he could redo the list of my medications that I carry in my wallet. I wanted it smaller so that it would fit better. He came back three times, interrupting my task to show the results to me. Each time, it was to show me an example of what he thought would be better. When I was not completely happy, he tried to convince me that his way was better. When I again explained what I wanted, he insisted on explaining to me why he did it his way. After the third time, I told him exactly what to do to make it the way I originally asked for it. Yes, he made the mistake of saying just one more thing. I started yelling! Was he to blame? Not really, he was only trying to make it perfect (the hazard of living with a perfectionist" for me. The problem was that he wasn't really listening to me as to exactly what I wanted... instead, he was trying to figure out what he thought I should want. All out of pure love. Was I to blame? Somewhat, I guess. I should have taken a few deep breaths before I snapped, but FTD does not allow me to do that. There is no filter between brain and mouth. What I think, I spit out. Sometimes I think FTD stands for "freeing the demon" because that darned irritable demon keeps popping out of me!

It is is difficult, even for me, as well as my loved ones, to realize that even one task that involves multiple steps is way too much for me to handle. What I was doing, sorting out the candy, should not have been a major project and wouldn't have been pre-FTD. I would have been able to be doing a couple other things at the same time, no problem. Unfortunately, it doesn't work that way anymore and is not going to go away or get better. I think my loved ones forget that. They see me having a decent day, accomplishing some things and smiling, and think that today will be different for my brain. I wish it did work that way...

More Random Thoughts

Some random thoughts:

I have become the queen of online shopping. I was never a big fan of shopping anyway, then you add in the FTD, forget it! Shopping is so stressful, from the crowds to my difficulty of handling financial transactions. If I must shop, I limit myself to the same handful of stores so that I am in somewhat familiar surroundings. I have not been inside a mall in several years. I only shop on weekdays during school and work hours when the stores are a bit less crowded. Even with these guidelines, sometimes I find myself in a store, panicking and begging the person I am with to get me out of there.

There are quite a few symptoms of FTD that are rarely talked about, because they are downright embarrassing.  One is the loss of sexual inhibitions and sometimes even hyper-sexuality. Last week, during an outing, someone was talking and joking. My immediate response was of a sexual nature. The people listening started laughing while looking embarrassed. Several comments were made about what I said. I think it was just not something they expected from someone my age. I still don't think my comment was totally inappropriate (at least not this time) but I obviously made them uncomfortable which made me want to curl up and disappear.  The sad part is that I thought I had filtered it! This problem is due to the lack of impulse control and filters that those of us with FTD struggle with. Quite often, if we think it, we say it.

The hyper-sexuality issue can be extremely uncomfortable to all involved. I have spoken with quite a few with FTD who have had very frustrating problems with this. Imagine, the loved one with FTD is feeling more sexual than they ever have before, but the caregiver, after caring for all their loved one's needs all day, every day, has very little or no interest at all in a sexual relationship. I don't think I need to go in to any specifics, as I believe it is easy to imagine the difficulties this could create. Plus, I don't want to go beyond a PG rating!

Another big problem with FTD is bathroom accidents. I get so angry when I read posts on an online support group from caregivers insisting their loved one does it intentionally. What? Sure, we sit around and think "How can I make my caregiver's day worse?" Yes, no one likes to clean up accidents or to have to get up close and personal with those body parts to clean them. Guess what, caregivers? Can you please think how embarrassing it is for us?  Fortunately, I have not reached that point yet, but I realize that it will someday. I also imagine how humiliated I will be.

I have talked about this repeatedly but cannot repeat it often enough: FTD is not an obvious disease. We can still be intelligent and well-functioning. We are also very clever about covering up our problems. Don't try to make us "feel better" by telling us that we seem perfectly fine. We know that, we try very hard to not let this disease get the better of us or to let it show. This past week, I had another incident of someone telling me, "Oh, don't worry about it, even I constantly forget where my keys are!" Uh, huh!  Gee, thanks, it really is the same thing! Our problem is usually not memory loss, at least until the late stages of the disease. We are not hypochondriacs or imagining our disease. We have confirmed diagnosis from the appropriate brain scans. We have it and it is a real disease, even if you haven't heard of it! Obviously, I am blessed by still having the ability to read and write. I wish the doubters could come to my house and watch me try to follow a recipe, or watch me try to pay for a cup of coffee with cash, or watch me trying to find my way around even in familiar places. Yes, I don't seem to need that cane I walk with. It is not because I can't walk, it is because at any time, I can lose my balance and fall. At least with the cane, I stand a better chance of not falling and injuring myself.

I am so very thankful that there are so many people who have FTD who are willing to talk about it. I would not make it through very many days without help from my online support group. Not mine literally, but the one I visit every day. We laugh together, cry together, share helpful advice and pass on any new or hopeful research we stumble across. I am so thankful for those individuals who administer the site. This disease is one, I believe, that only others dealing with it can truly understand what we are going through. To those of you from the support group who read this, you know it is you I am talking about and I cannot thank you enough!!!

Enough rambling for one day. I hope I haven't repeated myself from past posts, at least not too much. Hopefully, my brain will be more organized next time!

A Few Musings About my Week

Maybe, just maybe, I am becoming a successful advocate for FTD. After my letter to the editor appeared in the paper two weeks ago, I have received three phone calls looking for more information. I spent about an hour each time explaining FTD and giving them sources to contact for  more information and sources who could recommend physicians who truly understand FTD.

Today, while in the waiting room to receive my annual mammogram. (Note to self: Do not schedule mammogram during Breast Cancer Awareness Month.. it's the busiest month in the mammo department.) While sitting there, I got into a conversation with a woman whose husband has dementia, diagnosed as Alzheimer's and sounded like it to me. But then, another woman started asking me questions because she has a family member who has been told they can't have dementia because she is too young.  She is 40!  It could be FTD, it could be early onset Alzheimer's. What is wrong with these doctors? I know we live is a smaller town, but it is getting ridiculous. It makes me happy to be able to help others understand this dastardly disease.

When I was in the exam room talking to the doctor after the mammo, I apologized for getting confused and told her I have FTD. She asked lots of questions about it and said she was definitely going to read  up on it. Wow!  A doctor who cares. She really did seem interested.  Shouldn't all doctors be like that? It definitely would help.

My husband and I visited my daughter for a few days this past weekend.  It was awesome!!! We hadn't seen her in many months and I'm sure you can imagine how much I miss her. I know I have blogged about it before. We stayed in the same hotel we have for the past three years or so, and my husband called ahead to reserve the same room we have had the past few times. That helped so much. I did not feel disoriented, even in the middle of the night.

Our daughter and her roommate took me to the Renaissance Fair and I lasted the entire day, 10 a.m. to 5 p.m. They had come up with the idea of renting a wheel chair. God bless that daughter of mine! If you have never been to a Renaissance Fair, they are not on paved surfaces but dirt with rocks and tree roots, but she kept insisting on pushing me. The chair also provided me a comfortable seat for the shows, instead of the wooden benches. Finally, after the final show of the day (and what a show it was!), I decided to walk behind the chair and use is sort of like a walker. This works well with grocery carts at the grocery store, so I thought it might work and it did. That section of the fairgrounds would probably have been too difficult to push me through anyway... lots of rocks, pretty big ones, and tree roots. I think she would have hit one, bringing the chair to a halt and me flying out of it!

Our day at the Fair is one of the best days I have had in at least a couple years.  I had been to a few Highland Games, but never to a Renaissance Fair, and days with my daughter are worth more than a bucket of gold anyway!

All was not golden though, the driving trip down and back (9.5 hours down and only 8.5 hours back due to less traffic) were very stressful to me. At one point I wanted to open the car door and get out. Problem was, we were driving 65 mph at the time! Good thing my lack of impulse control isn't quite that bad. Books on tape (actually CD's) help me during long rides like that. If you are doing a lengthy ride with someone with FTD, I suggest trying them. You can buy them, download them or even rent them at all Cracker Barrel restaurants for a very reasonable price and can return them to any Cracker Barrel, doesn't need to be where you rented it.

We had purposely scheduled a couple down days for when we got home, something I would definitely recommend, if at all possible, following a trip. After three days, I am feeling settled again and ready to schedule the next trip to visit her!

Spouting Off to the World Again

Back in August, I blogged about a letter to the editor that was published in our local paper.  Well, I did it again!  A couple weeks ago, they ran a front page store about Alzheimer's and "other dementias." Well, except for using the words "other dementias" a few more times, it was all lumped under the Alzheimer's umbrella.  No "other dementias" were talked about at all.  If you are a regular reader of this blog, you know that I became infuriated.

This week, which happened to be World FTD Awareness week, it was quite apropos that they (the Altoona Mirror, located in Altoona which is in central Pennsylvania) printed my letter.

I have inserted a copy of the letter because the link from the Altoona Mirror's website is not working correctly. Looks like you can read it pretty well this way anyway.  I will mention here that I did not write the cutline (headline) someone at the Altoona Mirror did. It would have been nice if that person had read the letter. I was not saying that they differ. They are both types of dementia. I was trying to get across that there are more types of dementia, other that Alzheimer's, that need to be talked about, publicized and researched.

It is at times like this that I am so very thankful that I am still blessed with the ability to read and write. The reading ability is slipping some, but the writing is still with me. So VERY thankful!

I also posted the letter on my Facebook page, along with daily informational snippets each day of World FTD Awareness Week. I have received a lot of feedback on the letter and the snippets.

The day the letter appeared in the  paper, I received a phone call from someone living in this area who located me after reading the letter in the paper. We spent about an hour on the phone. I suspect she may have FTD, rather than the depression she keeps getting diagnosed. I was able to steer her to www.theaftd.org, which is the website for the Association for FTD, sure that they would be able to give her some advice and steer her toward a medical practitioner who is familiar with FTD.

Anytime I write things like this, it is with the hope that it reaches and educates even just one person about FTD.  SUCCESS!!!

Keeping It Positive

I don't know if I have ever mentioned how much I dislike talking on the phone.... and making phone calls?  Forget it.  There are, however, a handful of people that I would always take their phone calls and be thrilled that they called.  Interesting enough, these are the same small group of people that I enjoy calling You can count them on one hand.

Late one evening this past week, the phone rang and I looked at the caller ID and it was one of these people. It was late enough that I was not very thrilled to have to talk because the later in the day, the more difficulty I have in getting my words out. Fortunately, for this handful of people, I would never ignore their calls... night or day, anytime.

The one who called me was not crying, but I could tell that she was on the verge. She is currently battling a very persistent cancer. We thought she  had beat it last year, but up it jumped again, saying "Nah, Nah, Nah, Nah," and sticking out its tongue. Well, that is how I picture it anyway. She knows I had my own battle with cancer a few years ago and that I understand the toll chemo and radiation take on your body and your psyche. She also understand what I am going through with the FTD battle. I am honored that she chose me to call.

Her question to me was, quite simply, "How do you do it? How do you keep a positive attitude?" I paused for a bit and than answered "Some days you don't." Isn't that the truth? Some days it just seems not worth the effort and everything looks dismal. But... I continued, "Other days you find something positive. Sometimes it jumps out at you, like a beautiful bird at your window or someone being extra nice to you or paying you a compliment." I took it even further and said, "Sometimes you have to really search for something good... read a silly book, watch a silly tv show. Ask someone for a hug. And finally, call me, day or night, I will always be here to give you a laugh or at least a big smile and tell you how much I love you."  Yes, I do believe you can hear a smile over the phone.

When I was training people in whatever office I was working in at the time, I always told them to take a second and smile before you answer the phone. It makes a big difference: in your attitude, in the reaction of the one calling and sometimes makes a big difference in the results of the call. Try it sometime.

By time we finished the call, and it wasn't even as long as our usual talk-fests, she sounded so much better. I think that part of why it helped her was that I didn't offer platitudes and say things like "It will be okay, you will beat this" and didn't try to compare it to my experience.  No two cases are the same and everyone's body reacts just a big differently. I will say that she was amazing going through the battle the first time, and is staying as strong as possible this time.

I strongly believe that keeping a positive attitude, or at least trying to, not only helps you with the treatment, but also with the results. It fills you with positive energy instead of negative energy. I don't always succeed, I can have a few down days here or there, especially when crappy things are happening in my life, not necessarily related to FTD.

That is one of the reasons that, even though I know FTD is a terminal disease, I keep fighting. Not only to keep my own spirits up, but to keep attempting to inform as many people as possible about FTD. I write this blog, not only because it helps me to get my feelings out, but if it reaches just one person and gives them enough knowledge that they say "Hey, maybe that's what is wrong with me (or their loved one)."  I also, every time I see a doctor I talk about it. Not only my family doctor or neuropsychiatrist or my therapist, but also my dentist, my eye specialists the ER doctor, any captive audience. I offer to bring them information and some of them actually take me up on it and I can tell at my next visit that they actually read it. Again, if this leads to just one correct diagnosis for someone, it is more than worth the effort.

It is much easier to fight the battle with FTD if you have a correct diagnosis and become informed about the disease. It is toughest on those who are told "It's just depression" or "You are too young for Alzheimer's" and on and on. Trying to function when you are screaming inside, and sometimes out loud, "IT IS NOT DEPRESSION! I may be depressed, but it's from fighting the problem, not the cause of it," can totally exhaust you and make it very difficult to keep any kind of positive attitude.

That late evening phone call, when she couldn't deal with things, was a gift to me. To think that she loves me enough to share her inner feelings and trust me enough to try to help her through it? Now that made for a more positive day for both of us!

Do I Really Matter?

The last four days, I have been feeling, more hurt and angry than ever before, but, even worse, that I do not matter to the person closest to me.  With FTD, it is common to feel like you don’t matter. You can't do the things you used to do or, if you still can do something, it takes at least three times longer to get it done. You often lose the ability or authority to drive a vehicle, which kills a lot of spontaneity and eliminates a lot of choices in your day to day life. You have to wait until someone can and will drive you, hopefully to your first choice of where you want to go and not a substitute that suits the driver better. Every thing has to be scheduled well ahead of time... no spontaneity, as I said.

The biggie, though, in feeling like you don't matter is having your options taken away from you. Decisions are made without asking your input. Suggestions you make are dismissed. Your desires are no longer validated, but I will get more into this problem later in this blog entry.

The first place I, and others who have expressed the same situation, felt like I don't matter anymore is when my friends started ignoring me. Oh yes, promises are made... "We will get together soon". "I will call you". It gets to the point where I simply say, "Yes, that would be nice" knowing full well that I won't hear from them. When, on the rare instances that I do manage to get together with one, especially if it is in a restaurant, it isn't long before they start fidgeting in their seat, which tells me they don't want to be there. One guess that I have as to why is that they are afraid someone they know will see them sitting with someone who is stuttering and having difficulty speaking or who no longer has the best table manners. I will sit and pick apart my food, remake my sandwich to my liking, etc. With my lack of impulse control, I will often say the "wrong" or "politically correct" things, and often quite loudly. It comes down to the fact they are embarrassed to be seen with me. So, to all my friends and family who avoid me, I miss you, but I do understand. I forgive you. But... don't bother calling now, it's too late. What is interesting to me and others with FTD who have experienced the same thing, the worst offenders are those from our churches.  I no longer attend church because of my inability to deal with crowds or control speaking out if I don't like or agree with something. I have, however tried to remain active in the women's group of our church. It gave me a place to socialize and keep in touch with those I considered my friends. I no longer attend those meetings either. The past few meetings, I have come away feeling like a social pariah.  Don't get me wrong, not all of the members were like this, but enough that I will never go back. Enough who caused me to be totally embarrassed, worthless and unwanted, that it is not worth attending to see those who were still friendly.

Another thing that makes me feel like I don't matter, is when people don't hear me. I know I have blogged about his one before, but it is important. One of the things I have developed with FTD is sometimes non-stop chatter. So I do understand, somewhat, why people block out my talking. This becomes very hurtful as it makes me feel that they don't care what I have to say or that it's not worth listening or responding. I have reached the point that when they turn and say "Huh?" or some such thing, I just say "never mind" or "it wasn't important". Then the blame gets turned around on me somehow and I hear "No, no, don't do that to me, what did you say?.  Me, not do that to you?  Excuse me? You have just indicated to me that I am not worth listening to and you want me to repeat it?

This past week, we were facing a major life decision that would have a large effect on the rest of our lives. My daughter wanted us to move to the state where she lives so that she could help care for me and support her dad in doing so. She and I had both laid out our reasons why this would be a good and smart thing to do. We were even starting to do things that would be necessary before we moved, before we put our house on the market. Then, I was told that we must discuss this. The discussion involved in my being told why this would not work, why he did not want to move and all the negatives as he saw them. Then the discussion was over and he announced that "we" had made "our" decision. All the reasons why I wanted to move, primarily to spend quality time with our daughter while I still can, were rejected outright. I did not matter.

I don't like to blog about such personal situations, unless it is not obvious whom I am talking about, but I made an exception this time. Fortunately, I have a very strong, albeit small, support system and I will get through this disappointment. The anger and resentment will most likely stick around for a long, long time. I do not like that I no longer matter.

I hope this can be eye-opening to all of you who are caregivers to someone with FTD or to anyone who has someone in their lives who has FTD. Don't be quick to dismiss them. FTD is not like Alzheimer's, we still remember and we still are aware of what is going on around us. We still hurt and we should still matter! To those with FTD who read this, I hope it helps you to feel less alone, and that you DO matter!

Reactions to Stress

The past week has been one of the most stressful that I can remember. It would probably qualify as the most stressful if I was to not count the deaths of loved ones.

I am wanting to move from Pennsylvania to North Carolina to be with our daughter. My therapist is 100% behind this. She insists that those with FTD should spend as much quality time as possible with their loved ones before it is too late to enjoy them. My husband and I are both retired, so there is no reason why we could not do it. Except, he refuses. The reasons he gives me come across as extremely selfish. This is what is causing the extra stress, as if living with FTD is not stressful enough.

I have also discovered something. Stressful situations make my FTD symptoms worse. I have heard from quite a few others with FTD say the same thing. Fortunately, at least at this point, when the stress is lifted, after a couple days, the symptoms improve some. It doesn't even have to be a bad stress. As I wrote in my last blog entry, I experienced this following a baby shower that I had enjoyed immensely.

Now, with the stress of trying to convince my husband that moving is the right thing to do, it is like FTD has body slammed me repeatedly. When I am walking through our house, I am constantly banging into things such as furniture and wall edges. I touched up the paint on one of the wall edges, the one I hit constantly, a few days ago and now it is chipped again. I don't dare go anywhere without my cane, yet I still stumble while using it. I am going to have to admit it's not going away and purchase a walker. I don't want to, I don't want to. Please don't make me!

I am also having difficult swallowing more often. This can be downright scary, even at the level it is now. I do not even want to imagine what this is like when it gets more severe, which it will.

It's bad enough now that I am not sure my body will recover any from this round of stress.

So, I am super stressed, what can my loved ones do to help? The big one is that my husband could agree to move, of course. In the meantime, all the things that are difficult or make my life difficult are much worse and I need people to realize this. When I am trying to accomplish a task and am just a couple steps away from completing it, don't push me to the side and take over when you realize what I am doing. All that succeeds in doing is making me feel useless.

Don't argue with me and don't point out things that I did incorrectly.  All that will accomplish is to cause me to blow up and say things I shouldn't.

My stuttering and difficulty finding words has gotten worse with the stress, so it takes longer for me to say things. Don't guess what I am going to say and try to finish my statement.  Don't talk to others about me in front of me, even if you are trying to help. An example of this is to not explain to people who are new to me that I don't talk well and if I start stuttering just give me time. If I am having trouble, I will explain it myself. Somehow, that does not affect my dignity the way it does if you say it.

Do take the time to give positive reinforcement when I succeed at doing something beyond my norm. In the same vein, just because I am able to do something today, please don't assume that now I can do it all the time. My abilities change from day to day, even hour to hour or minute to minute. Don't say "But you were able to do this last week."

When I run to the sink to cough up food that I am unable to swallow, please don't ignore it. I realize it is quite gross, but you need to make sure I am okay. You don't need to stand there the whole time, but at least check in on me to know that I can breathe, just like you would a choking victim.

Of course, I am speaking in the first person here, not speaking for all those with FTD. We all have different symptoms that progress at different rates. I figure, though, that this at least gives you some idea of how to interact with someone living with FTD.

While I am on the subject, do not try to compare one case of FTD to another. It doesn't work that way. There are many variations of FTD and even more combinations of those variables. Like I have heard repeatedly, "If you have seen one case of FTD, you have seen one case of FTD."

Worth the Price Sometimes

Over this past weekend I had the joy of attending a baby shower for a very dear friend. Her family was among the very first people we met and befriended when we moved here eleven years ago and we have all been through a lot together.

When I received the invitation a few weeks ago, my first thoughts were:
     How will I get there, can't drive and my husband doesn't like going to strange places?
     Would I be able to tolerate the crowd?
     What if I started to panic and needed to get out of there?
     What if I do something stupid, would I embarrass myself or my friends? I could fall or spill my              food or say the wrong things (my verbal filter is just totally gone these days)?

I'm sure I have mentioned how much I hate asking for things? I still think I should be self-sufficient in all ways .I was determined to attend, no matter what. so I acturally contacted a friend of the mom-to-be whom I knew would be invited. I had done a lot of favors through the past years for her and since she would practically drive right by my house, I figured it would not be imposing at all.  I got several excuses in response and gave up on her. Then I remembered a family member of the mom-to-be. We haven't been as close as we once were because the mom-to-be's family had moved a half hour away from us so we didn't attend all of their big get togethers anymore. But I remembered her offering to give me a ticket and a ride to her daughter's dance recital in June. Even though I don't see them much, I have kept in touch and have supported her kids' fundraisers and such.

 When I asked, there was no hesitation whatsoever so the ride was taken care of. And the ride was fun, spent playing with her kids. Somehow, she knew to grab the table on the edge of the room and gave me the corner seat so I wouldn't feel closed in. How she knew this, I have no idea.

I decided to lump all the other questions together and say "So what if I do?"  These are good friends and would accept me even if I did all of the things I was afraid of. I truly was proud of myself and my determination. The shower is one of the best I have been to in a long time. I am one of those silly people who love baby showers, even the silly games that are inevitably played. I even won a prize!  I lasted the whole four hours with no problem. I was even smart enough to not try to carry a bowl of soup or open cups of drinks.

Then came Monday, the day after. My legs would not work. The signal from the brain was just not getting to the legs. Even using my cane, I was stumbling and struggling. We had an out-of-town doctor appointment, so I couldn't just take it easy. My speech was a mess. I think my stuttering was worse than it has ever been and my "FTD headache" was nearly unbearable. Fortunately, all the staff at this doctor's office have gotten to know me and love me, so I didn't worry about embarrassing myself there.

I kept trying to figure out "Why today?" towards the end of the day. Then I had that "Duh" moment. I figured out that my brain was struggling because of the stress of the day before. Even though I had such a good time, it was still stressful. I had worried every time I got up to walk somewhere, every time I had to have a conversation with anyone and all the other worries I have mentioned.

Guess what?  I don't care one iota that I had to deal with the struggles on Monday, even at the risk of embarrassing myself, which I did do when we stopped at a convenience store on the way. This day of struggling was a cost I would pay over and over in order to have the good time I had at the shower. Getting to visit with people I haven't seen in a while and celebrating with the mom-to-be... PRICELESS!  When you know you have a terminal disease, it (at least to me) becomes important to spend time with loved ones because each time, you don't know if it will be the last.

Today is Tuesday, two days after the shower and, physically, I am back to the place I was before Sunday. You may be reading this post and are thinking "Wow, she is really making too big a deal out of attending a baby shower." When you have FTD, everything becomes a big deal and a huge struggle, so I when I make it through one, it is a huge deal to me!

Un - "Comfortably Numb"

I describe myself as "emotionally numb" more and more these days. Much of that is just a condition of the FTD. The worst part of that is that, more often than not, I feel as though I just need to have a good cry and get it all out. Unfortunately, FTD does not allow me to do that due to it killing off most of the empathy I used to have.

This morning, though, I realized that in addition to being numb, I also feel like an empty shell. Almost all decision making power has been taken away from me, aside from deciding what to fix for dinner. I haven't been allowed to drive for about five years now. Until that privilege is taken from you, there is no way of understanding what that does to you. It is almost like part of your being has been ripped away. Don't get me wrong, I realize that I have no business driving. I get lost constantly and narrowly escaped causing some pretty severe accidents the final year of my driving. It is just that it steals much of the spontaneity from my life. I can no longer hop in the car and run to the store if I need something. If I'm bored, I can't just hop in the car and go visit someone. I must schedule all of my appointments and activities around someone else's schedule so that I can get a ride. For every thing not within the walls of our home, I am always dependent on someone else. Having always been a fiercely independent person, it is really tough to accept. I have missed so many events... showers, weddings, parties, funerals... and it hurts to let people down.

Sometimes it is mostly me who gets hurt by this. We were supposed to go on a vacation next month to Myrtle Beach SC and our daughter was going to meet us there for the week. I haven't seen her since Christmas, so it's been a long nine months. Unfortunately, my husband decided he did not want to go. It used to be a common occurrence for him to not be able to make a family trip, so my daughter and I got used to just packing up and taking off on our own. Now that she and I live a few states apart, it makes it much more difficult to do. Bottom line, vacation is a no-go. So, I wait until Christmas time again to see our daughter. Somehow, once a year is not nearly enough. Yes, I could find someone else to join us and do the driving in exchange for a free trip to the beach, but that totally defeats the purpose of having some quality family time with just the three of us.

This isn't just a case of me pouting because I don't get to go on vacation again this year, just like the past few years. It is more that this disease does not come with a calendar. I have no idea if it will end my life within the next year or in five years. Most of the research that I have seen says, 5 -10 years after diagnosis. I was diagnosed about five years ago, so as more and more symptoms rear their ugly heads or others worsen, it forces me to face reality. For me, it makes me want to do things like see family as often as I can. For instance, this summer I was able to get together with cousins from both sides of my family. This doesn't happen often because we are all spread across the country now. It meant so much to me to be able to do this. Many of those that I  know with FTD actually have "bucket lists" of things that they want to do before it is too late. I have one thing on mine: spend as much time as I can with family. Along with that, I do include moving to North Carolina to be near my daughter. But, all these things depend on someone else making the decisions needed to do these things.

Bottom line, I am tired of being empty and numb. Song lyrics keep popping into my head: Comfortably Numb which then leads into Should I stay or should I go now...  

I never would have envisioned these words to describe my life, not in a million years, until FTD came to call...

Frustrations... every day ones and one huge one!

I wonder why I get so frustrated all the time?  Well, truthfully, I do know why. It's all about the FTD. I will write about three frustrations from this past week, starting from the smallest to the biggest.

At least once each day, I catch myself struggling to figure out how to do something. Today, it was opening our front door from the outside.  It is a handle where you have the thumb latch that you push down and just push. Couldn't figure it out, took me about five tries of different combinations of things. God bless my husband! He stood behind me and allowed me to figure it out and never said a word.

Yesterday was a little worse. My husband handles my pill organization for me and fills my pill containers for the week. There is one organizer for morning and one for night. We have a system of shuffling them around that works for us. That is, it did until yesterday. When I was preparing for bed, the night time organizer for that day was empty. Uh-oh! I had bathed earlier in the evening that day instead of closer to bedtime. I think I must have taken them after I bathed. The one medication makes me very sleepy and I did remember being sleepy earlier in the evening. Usually the worst thing I do is forget to put in my glaucoma drops, but he usually catches it and reminds me. Now, he is going to be even more fussy about whether and when I take them which will drive me crazy.

If I continue to mess up taking the pills, I guess we'll have to get one of those programmable boxes that work on a timer. You can't open them until the correct time that was set. One more thing to make life more complicated.

The biggest frustration of this week, more likely of this decade, was in an email from my daughter. She lives in a large city in NC, we live in a small town in PA. We have been trying to convince my husband to move us down there to be nearer to her so she can help care for me. He refuses to do it, won't even discuss it. He doesn't take to change very well anymore. I made a list of pros and cons and gave it to him because sometimes he grasps things easier when it is in writing. Still won't talk about it.  So, one evening this week, I received "the" email... she said she has come to the horrid (my word,not hers) realization that if he won't move us down there, she will have to quit her job and move back up here. Nearly broke my heart. There is nothing for her here, that is why she moved to NC in the first place.

I really, really, really don't want for her to do it. I don't want her to give up her life to become my 24/7 caregiver. The members of a support group I am in all say that I should allow her to do it, That  after I am gone, she will most likely appreciate that she did all that she could. That makes sense to me IF we would move down there. I think I could accept that, allowing her to move in with us and providing care for me. That way, she would still have her job and friends surrounding her. All caregivers deserve to have a support system around them to keep them grounded and sane. It allows them to better preserve their own health, physical and mental. What good is the caretaker if she is worn out all the time? My biggest fear is that if she moves back up here and becomes my 24/7 caregiver that she will come to resent me. I could not handle that!

I have a feeling this frustration is going to be a long one. I will keep trying to convince my husband that it would be a good idea to move as that truly seems to be the best solution.  Wish me luck! 

No More Feeling Sorry for Myself

I came to my blogsite today with the intention of deleting the entry I wrote yesterday, but when I reread it I realized it was all true, just whiny. So I left it up.  Now you know what I am like on  my "Feel Sorry for Cindy" days.

My mom and I, many years ago, had an agreement that when something bad happened to either one of us, we would have a "Feel Sorry for ____" day.  Just one day, after that you had to put on your big girl panties and deal with it. It was tough after a broken heart, but it truly helped us.

So, after my Feel Sorry for Cindy day yesterday, today I face it all with a better viewpoint. All the same frustrations exist and the headache still exists, but today I will not let it defeat me. Today I will:

    Walk away from arguments.
    Ignore other people's reactions to my limitations.
    Avoid watching depressing or anxiety producing shows on television.
    Same with books, only reading light-hearted books and being very thankful I can still read!
    Go outside and enjoy the sunshine.
    Watch the birds at the feeders and the squirrels on the deck, laughing at their silly antics.
    When someone calls me on the phone, if they start being a Negative Nellie/Nelson, I will end the conversation.  As nicely as possible, of course.
    Try to stop dwelling on the things I cannot do, or that my husband prevents me from doing.
    Instead, find some easier tasks to do and feel good about myself for being able to do them.

    Above all, BE THANKFUL.
    Thankful for still being able to read and write. Both take longer, but I can still do them.
    Thankful that I have a husband who loves me, puts up with my mood swings and does most of the things I can no longer do. How many husbands do laundry? Mine does! I have never been able to get him to do much in the way of house cleaning, but I'm sure that once I can no longer do it, he will step up
    Thankful that I have found doctors who understand my situation, even if they are not extremely knowledgeable about FTD, they accept and support my decisions as to what we will treat and what we will not.
    Thankful for my online support group where they understand even when no one else does, yet, set me straight when I need it.
    Thankful for our beautiful daughter. Even though she lives 8-hours away, she calls me several times a week to keep up to date on what is going on with me and to keep me involved in her life. I will be try to not resent the fact that I do not get to see her more often because of my husband's refusal to drive there to visit.  Oops, slipping a little into feeling sorry for myself again.

Anyway, you certainly get the gist of what I am trying to say. When I need a pep talk, I will come back and read this again and again. I don't need to defeat myself with a negative outlook!

Just Plain Weary

I cannot come close to explaining to you how tired I am.  Weary might come closer to the condition than just tired, but it has become all-consuming.

I am physically exhausted most of the time. Everything I do or attempt to do takes a much greater amount of effort and energy than it used to. Often because I have to start and stop a task several times because I forget what I am doing, what I need to get it done or how to do it. This is made worse if someone tries to talk to me while I am attempting it. This constant frustration, some days, leads me to not even want to try to do things.

The constant headache wears me down every day. I have always had a lot of headaches, even migraines every day for a couple years, but the FTD headache is a whole different animal. It is unrelenting and pain killers just don't seem to do much to alleviate them. The headache just doesn't go away; it is with me 24/7. Makes me more than a little grouchy as well and probably more than a little difficult to live with.

Sleep is another issue. Whatever you do, don't criticize someone with FTD for needing to sleep a lot. I have heard many caretakers say that they think their loved one sleeps all the time because they are bored or refuse to do anything. At least in my case, this is totally untrue.  Sleep comes fitfully. I often stay in bed for 12 hours, yet feel like I had very little sleep. Fortunately, having a couple cups of coffee does help me get going just as it does most people.We have learned to adapt our schedule to this problem and try not to schedule activities or appointments until after noon.  Fortunately, that works well for my husband as well. It would be worse if I didn't want to do things until after noon and he wanted to get them over with first thing.

Unfortunately, it is not just the physical exhaustion, is is also the emotional exhaustion. The sheer frustration of not being able to do things that were second nature to me can defeat me some days. It is also the frustration, as I have said before, of not being seen or heard. I truly think I am invisible some days and begin to wonder if maybe I am not speaking when I think I am. This happens in stores, offices and, yes, at home. Almost anywhere, with most anyone, when my voice starts stuttering or causing long pauses, people ignore me and look to my husband to do the talking.

On the home front, my husband allows me to make any decision I want to, as long it is the one he has already made. When he reads this, he is going to wonder what the heck I am talking about, because I am convinced he doesn't realize that this happens. When I do suggest or decide I want to do something else, he steers things right back to where he wanted. I finally give up, say that I don't care, just do whatever he wants. Later, he is convinced that what we ended up doing is what I wanted all along. In his defense, he suffers from anxiety issues and because of this, he desires to have everything planned out, just so, ahead of time. Most days, it doesn't feel worth the effort to try to help make the decisions or suggest something I have an interest in doing, I just say that I don't care, whatever he wants to do. For some reason, those frustrations add to my feelings of exhaustion.

Embarrassment adds to the exhaustion as well.  Yes, I know, in my head anyway, that I should not be embarrassed by my limitations, but when people snap at me or give me that looks of "Boy, this one is an idiot," I can't stop the feeling. One of my first symptoms that I had a problem was how confused I would get when attempting to make a cash transaction. So I learned to use my credit card instead, which made it easier. Unfortunately, now, even that confuses me, especially when it is somewhere that you have to slide your card and make all the entries yourself. The system is different from place to place and truly rattles me. Then, when the salesperson gives me that look or rudely barks the instructions, it defeats me and leaves me exhausted. Mental exhaustion is just as debilitating as physical exhaustion.

Some days, I think I would feel better if I could just sit and cry for a good while, that it would be cathartic.  Problem is, this damned disease won't let me cry anymore!

And.... yep, it all makes me grumpier and more difficult to live with.  That is why, when I read caregivers ranting about how uncooperative and irritable their loved one is and how they believe they are intentionally making the caregiver's life more difficult, I become enraged. Just like with a young baby, if they are crying, you check to make sure the diaper is dry, nothing is poking at them, that they aren't hungry, hot or cold, etc. The caregiver should be looking into what could possibly be making their loved one grumpy or difficult to deal with.

Now, thinking about all this, I am exhausted. Most likely, I will go somewhere and curl up in a semi-fetal position and try to escape. It never works, but I end up doing it a lot anyway.

My Tirade got Published!

Today's blog is going to be a little different. In our local paper this past weekend, someone dared to write about, basically, those people who sponge off the government, the ones on Welfare, SSI, SSD and food stamps. It took a while for the steam to stop coming out of my ears, but once it did, I sat down and wrote a letter to the editor of our local newspaper, the Altoona Mirror, which was published in today's edition.  First, my letter:

SSD Comparison Wrong, Offensive

    "In last Saturday's Mirror, a letter writer lumped SSI and SSD into the same category as welfare and food stamps.
    For clarification, Social Security is labeled as an 'entitlement,' not because the recipients feel "entitled," but because we are entitled to Social Security because we paid into it for 40-50 years.
    I do not deny that there are many who abuse the system, which should be addressed by reform, not by the condemnation of all who receive Social Security.
    I was forced to apply for Social Security Disability benefits over five years ago. This would surprise most who know me because most of the time, I appear to be fine. What you cannot see is the degeneration of my brain by a disease called Fronto-Temporal Dementia (FTD).
    Fortunately, Social Security understands that FTD is as serious as Alzheimer's Disease, if not worse, and I was given immediate compassionate approval. All that said, I would give up all that I own in order to be able to give up my benefits, go back to work and be rid of this terminal disease.
   Even with my receiving Social Security Disability payments a few years before I would have been eligible for regular SS, the total benefits that my husband and I collect will never add up to the total amount that the two of us contributed, so it should never be called a handout.
   I am deeply offended that anyone would imply that I am leeching off the system by collecting Social Security Disability.
   Cindy Odell, Duncansville

I have written letters to the editor a few times over my 62 years. This is the first time one was published, in its entirety with no editing. I am guessing that means that the editors "got it." Those who have mentioned my letter to me, at least so far, appreciated the points I was trying to make and totally agreed.

What angers me the most, is that I, and I suspect many others dealing with FTD, tend to sometimes feel worthless when compared to the functioning people we used to be. I get so very frustrated that I cannot do the things I used to do. I get embarrassed (I know I shouldn't) when I have to admit to someone that I cannot do that anymore.  I certainly do not need uninformed people implying that I am lazy and taking advantage of the system.

Did I change the mind or attitude of the other letter writer? I doubt it very much. It is pretty difficult to change the narrow minds of ill-informed blowhards.

I must also say here that I am still thankful every day that I have not lost my ability to write. Well, at least type, my writing is illegible. Having spent a short while, years ago, writing for a different newspaper, it is reassuring to me that I can still put a thought together and arrange my thoughts well enough that the reader can understand what I am saying. Of course, I would probably be fired from that newspaper these days, they would not want me to spend a full work day composing something as little as this letter, but I don't care how much time it takes me to do it, just that I can!
   

Why Can No One Hear Me?

I do not often post a blog twice in one week, but if I do not address this topic again, I may self-implode!

WHY CAN NO ONE HEAR ME???  I acknowledge that I now have to speak much slower, especially when I struggle for words and begin stuttering.  In addition, my voice is not as loud as it used to be but I would think that most people would view this as a good thing.
 
I experienced a prime example of this yesterday. One of the things I can no longer comfortably do is grocery shopping. I have written about this before. My husband has kindly taken on this task, even though it is quite foreign to him. This week, however, I decided to be brave and go along because I needed some things that I just couldn't explain to him. This was a Monday, and since Mondays and Tuesdays tend to be uncrowded at our store, off we went. We also went mid-afternoon when it is also less crowded.  Good plan, right?

All went well until we were looking for an item that was on sale, a new "healthier" cookie.  We looked everywhere we could think they might be... several times.  I wanted to just forget it, but husband asked an employee for assistance.  She searched all the same places and could not find them either... DUH!  She then called the manager in on it. So there we stand, all four of us in the middle of the aisle discussing this issue to death.  I kept trying to suggest somewhere else they might be.  I waited until nobody was talking, then started to say what I wanted. My mamma taught me right, after all.  I would get four or five words out and then someone else would start talking, totally ignoring the fact that I was speaking. This happened somewhere between four and six times, then I did my exasperated thing... shrugged my shoulders, threw my hands up in the air and walked away.

I don't know if one of the employees said something or my husband just found it necessary to explain. As I walked away, what I heard him say was, "She has dementia and is frustrated because she wants to say something." I wanted to scream, "No, I just want someone to listen."  So then, after he embarrassed me with his words, they stood there impatiently and listened, then totally dismissed what I had said. So now, there is a hole in the cookie aisle, because I dug one and crawled into it.  Oh, wait, maybe that was just what I wanted to do, in my mind.

I could go on and explain another example that happened today between just my husband and me. To make it short, he asked about something, I said it was just a spare.  He spoke another sentence or two, then said "So is this only a spare?"  Arrrgh! Right here, I will explain that my husband is the best caregiver and husband anyone could ever wish for and after 42 years of marriage, we are in it to stay.  We still love and laugh and we are pros at bickering and then laughing about it.  He is a good man, but even the good ones can frustrate us sometimes!

Several other FTD friends I communicate with online have suggested My husband and I both carry little business cards that are available through the Association for Frontotemporal Degeneration - www.theaftd.org//  Only problem is, to me anyway, is that they are just as in-your-face as what my husband said in the store. My project for tomorrow:  I have decided to make an attempt at making up some cards myself that don't make it sound like it is my fault that I have FTD.  I am probably more sensitive than I need to be, okay, no doubt about that, but as they say, "It is what it is!". That's the way I am, I can't change it, so we need to come up with ways to deal with it.

To all you caregivers out there, please do not dismiss what your loved one is trying to say.  Allow them to speak and truly listen to them.  Say something positive, even something simple as "Thanks for saying that." Even if you get gibberish, the feeling of belonging and having a purpose that he/she gets from it surely will be worth dealing with a little frustration on your part. Bottom line, PLEASE LISTEN!

Coping with Some Issues

FTD is confusing, even to the experts, often leading to misdiagnosis in fact.  One of the confusing things to me is sleep patterns, or lack thereof. In researching this topic, I find two extremely different complaints.

The first is, especially from a caregiver's prospective, the difficulty in establishing sleep patterns. This is vitally important for the sanity and health of the caregiver.  I have found no real explanation for this symptom, just possibilities.  The possibility that, due to lack of interest or the ability to do much, the person with FTD may tend to nap often, even  just a lot of tiny maps only lasting a few minutes, which can disrupt the sleep patterns.  One things I have noticed, just from reading caregiver comments here and there, is that part of the complaint is that the person with FTD and the caregiver don't have the same sleep patterns. Part of this could be explained by the "Sundowner Effect."  This is the effect that sundown has on anyone with dementia, extremely common with Alzheimer's.  Once darkness descends, the person with dementia begins getting quite agitated and it becomes more difficult to focus on anything. This leads them to go to bed because they don't know what else to do. I watched this pattern in my mother as she progressed through Alzheimer's, so I know for a fact that it happens. I would think it would be pretty difficult for most caregivers to end their day when the sun goes down.

Coping suggestions that I have heard about or read about are to keep a set schedule, exercise, control of diet and assure plenty of fluids. I find this almost amusing since those are all things most of us with FTD struggle with anyway... we sometimes have trouble swallowing food, and loss of bladder control over night is a big problem and drinking a lot of fluids before bedtime would not make that one easier to cope with!  One of the best suggestions that I have repeatedly seen is for the caregiver to find a family member or friend to "sit" with the loved one a couple nights a week so the caregiver doesn't get totally worn down.  Now, this makes sense to me!

The second sleep issue is just the opposite and the one I experience nightly. I seem to need more and more sleep. I am currently sleeping up to twelve hours a night and still need a big cup of coffee to get me going. This problem seems much easier to deal with by just getting enough sleep. One of the biggest problems we have with it is synching my schedule with my husband's. In the evenings, I am too hyper to go to bed early and end up not going to sleep until around midnight. That means that I don't get up until 11 a.m. or noon. It is pretty difficult to schedule appointments when you only have the afternoons available. Plus, my husband tries to keep his activities on the quiet side so that I can sleep in the mornings. All the "solutions" I am offered is more medication. That is one thing that I refuse to do. The only FTD-related medications I take are two for depression and anxiety, one of which also helps with sleep, and a very low dose of a sedative only when I get very agitated. I seem to use this when I need to ride anywhere in the car that takes longer than a few minutes.

Obviously, even though I have researched this topic pretty well, I don't have any answers. All the answers I find seem to me to just be common sense things that we are probably already doing anyway.

On to a totally unrelated topic... last week we attended a family reunion. I was so proud of myself, didn't say or do anything inappropriate and had a really good time visiting with cousins I rarely get to see. The problem came when it was time to leave. Even with my cane, I could not walk up the driveway to get to our car. My husband, God bless him, and I don't know how he instinctively knew to do this, walked right up behind me and walked. He held on to both of my arms from underneath, below the elbow, and moved his feet which seemed to trigger the impulse for my feet to move. We shuffled, but it worked. When my mom was in late stages of Alzheimer's she could not walk and one of the caregivers at the assisting living facility would walk backwards in front of her, holding her much the same way and would keep saying, "Come on now, Alice, let's dance!"  I wanted to include these experiences in my blog, hoping it might just help others.  Now, I DO wonder how many people at the picnic thought I was drunk!  That must have been some potent water I was drinking...