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...

Let the Swallowing Begin... PLEASE???

Have I mentioned lately just how much I hate FTD?

Last Sunday, I developed a new symptom... difficulty in swallowing.  So far, it is worse when I am stressed.  The first time was when I was trying to put food on the table for our barbecue and to time it all just right.  I finally just stopped eating and, fortunately, no one noticed.

The next time it happened was in a restaurant.  My husband and I had stopped for lunch.  Now, I had been a little stressed over a near-miss with another vehicle.  No, I wasn't driving... haven't done that in over five years... but it scared the crap out of me.  (Not literally, thank the Lord, since that is another symptom that I haven't reached yet.)  By time we were in the restaurant, I didn't think I was still stressed.  I had no problem swallowing my latte, but my favorite sandwich was a different story.  I normally scarf it down since I love it so much.  That day, it took me a full hour to eat half of it.  At least I had a treat for lunch the next day... must find the good!

Then it happened again yesterday, again in a restaurant.  My husband had taken me out as a treat to a nicer restaurant while we were out running an errand I needed to do.  I was doing fine until about half way through the meal.  Again, I think I kept it hidden from my husband.  It's not really that I want to hide it from him, it's just that every time it has happened so far has been in a social setting.

I guess he will know all about it when he reads this blog entry though, won't he?  That's probably for the better anyway, as it is something that he should know about.

The scary part of all this is that I realize it will only get worse.  I experienced the problem three times in one week.  I understand that eventually, swallowing anything will be extremely difficult, if possible at all. Surprisingly, I have been told that swallowing anything the consistency of water will also become difficult.  They actually make and sell a product, Thick-It, that thickens liquids so you have a chance to swallow.  Scary that we will have to thicken water for me to drink it.  I am not endorsing the product since I have never used it, but I have heard from caregivers of instances where it has helped.

Fortunately, this morning, I remember the words said to me by the neuropsychiatrist who gave me my diagnosis of FTD.  He said, "Go and enjoy everything you can as well as you can for as long as you can."

I cannot fully explain just how frightening it is to not be able to swallow.  I cannot deny that this new step in decline is scary as hell, but I can deny its ability to stop me from enjoying what I can.

That's all I have for today.  I don't care to dwell on FTD today.  I will worry about that tomorrow...

Signs, Signs, Everywhere are Signs

I am sure I mentioned it before, but about a year ago, I found a psychologist, right here in our little town.  The best part was she is a specialist in dementia and ran a program for dementia patients at a local hospital until it merged with the other hospital.  She has been a Godsend, believe me.  It gives me a place where someone understands and can give me ideas of how to cope and for me to help those around me cope with my FTD.

At my last appointment, I was discussing my frustrations at getting my husband to understand the effects of this disease.  It seems the one we discuss at every appointment is how he overloads me with information or interrupts me when I am focused on something.  The result is that I end up blowing up at him and then I hate myself because of it.

After my husband picked me up from her office and we were making the short trip home, it came to me!  Notes!!!  He is the king of post-it notes anyway, so maybe that would be a way to reach him.  I made up signs here on the computer in a font to make the letters almost an inch tall.

The first was:  "One Thing at a Time!"  This really sums up all the issues, but puts it right there. Because he is trying to focus on this problem anyway, when he overloads me, I wait a little while and then explain what he did.  The most recent example I can think of was a couple days ago when I was outside doing some weeding and trimming.  He came out to help and then started explaining that our grass clippers had broken last year and did I want him to go to the hardware store to get new ones.  I said that we would need new ones but I didn't care if it was right then.  So, he asked again in a different way.  I snapped and said, "Please, just do what you want!"

That leads to another sign I made, "Say It Once and Don't keep Repeat."  When he does that it only succeeds in getting me to tune out because it is too much information.  The other one in the same vein is "If I Wave You Off, Stop Talking!"  My husband is a true Type A personality and, until he retired, was a busy healthcare executive.  Have you heard the adage "Explain it 3 times, in 3 different ways." He has always followed that.  I could never have worked for him, I don't think.  I guess he needed the other person to look him in the eye and say, "Yes, I understand that you want...."  But as usual, I have digressed.  When he starts telling me something more than once, I would find myself making the motion of trying to erase the chalkboard to stop the unnecessary information.  That used to frustrate him, but when I explained why I do it, he understood and stopped getting frustrated when I would do it and he really does stop talking.

Then the other big one:  "Do Not Talk to Me When I Am Cooking!"  That one is taped to the microwave above the stove.  I have a propensity to grab pans out of the oven without a mitt, forgetting how hot they will be. I have burned potholders by laying them on a hot element.  I really need to pay attention to what I am doing.  Plus, I usually make up recipes as I go.  To follow a written recipe is next to impossible for me, but I have gotten even better at throwing things together and figuring out what herbs and spices would go well with what I am cooking.  Problem is, I can't repeat the same dish again, but that's okay.

I am sharing this because it is working for us.  I can't wait until my next appointment with my psychologist.  I am sure she will be proud of me!  I can not promise this idea will work for everyone, but it sure is worth trying.  The reverse type of signs, reminding me to do certain things is next on my agenda.

https://welcometodementialand.wordpress.com/2015/05/12/what-no-one-told-you-about-dementialand/

This is a link to a document that just slaps you in the face about the realities of all forms of dementia. She doesn't pull any punches at all, something we should all read.

Headaches and Heartaches

Have I mentioned the headaches in previous blogs? I truly cannot remember, but if I did, it is worth mentioning again.  I have suffered from migraines all my life and firmly believed there was nothing worse.  Now, I know I am wrong.  These FTD headaches are much worse and they continue for days at a time.

It is difficult to explain these headaches.  Mine start in the back of my head, and when they are first coming on, my head will actually move forward when the pains hit.  It feels like someone has pounded a large hot nail into my skull with just one hit.  These pains can come seconds apart or minutes. Eventually, thank God, the headaches go beyond this stage, but then, the entire left side and top of my head will hurt.  I have not been able to correlate the headaches to anything else going on with me, neither stress nor diet.  Medications don't seem to help.  Well, I should not say that as a broad fact.  I will not take pain medicines stronger than Tylenol or Advil.  Any of the prescription pain medications make my brain more confused than it is usually.

As I type this, it has now been four days.  Thankfully, not all of them last this long, but I have had them last longer than a week.  They succeed in limiting my lifestyle even more than this disease does on a regular basis. It becomes difficult to concentrate on anything at all.

The reason these headaches are weighing on my mind this week, in addition to experiencing the pain. I am going to have disappoint a friend this weekend.  I was planning on attending her wedding, not the reception, but at least the ceremony itself.  The first thing that started to worry me was the headache and if it would ease up before the day.  Today, to help me get comfortable with going, my husband drove me to the chapel where it will be held.  Guess what?  No parking nearby!!  Not even handicapped parking that we could find that would be less than the equivalent of about a two block walk.  Even using my cane, I would not be able to walk that far without falling at least once.  I just can't do it.

One of the first things I had to give up to this disease was driving, even before I could no longer work.  My husband, God bless him, would drive me to work and return at the end of the day to drive me home. I missed my independence that I lost by not being able to jump in the car and going somewhere, without coordinating with someone to drive me. I never dreamed that I would have to also give up walking.  I gave up the resistance to a cane about six or eight months ago.  I am getting to the point that I am considering a walker.  It is difficult to explain to anyone that it is not that my legs are getting weaker. The best way I can describe it is that the signals from my brain no longer get to my feet and legs to tell them to move.

I detest disappointing people. I have been the caretaker and mediator all my life, since I was a small child, the one who tried to keep things calm at home and everywhere else.  It is just not in my makeup to disappoint people without disappointing myself even more. I am though, thankfully, aware enough of my limitations to not put myself in danger in order to prevent disappointing.

Bottom line, this week, two big aches.  One, literally a headache, the other breaks my heart.  I am not sure which is worse...

Dazed and Discombolulated

"Dementia Daze."   I read this name as a description of the uncomfortable feeling we get when things are confusing to us.  Of course, just about anything can trigger this.

It happens to me in large groups of people.  Bear in mind, to me, a large group of people is three or more, especially if there is someone in the group whom I do not know.  It just throws me off my game.  My speech abilities are fairly good when around one or two people with whom I am comfortable.  Add in a couple more people, or someone I am not totally comfortable with, the stuttering and inability to think of words or concepts totally kicks into high gear.  Of course, then I feel embarrassed which leads to even more of the same.  This leaves me totally dazed... unable to think, unable to remember the layout of the place I am, and totally  uncomfortable.

It certainly happens when someone is trying to explain something new to me.  However, as I keep reminding people, it doesn't help me if you speak louder or keep repeating what you want me to understand.  That just frustrates and confuses me even more. It happens more and more when I am watching television.  I avoid shows that are complicated in plot, but when I can't, I distract myself by doing something with my hands.  This keeps me from getting too deep into the plot and even though this doesn't make sense to someone without FTD,  for me it sometimes helps.

The scary part to me is I am starting to have trouble reading.  Again, I can't deal with complicated plots or too many characters to keep track of.  I am reduced to reading books that I used to consider a waste of time and brain power.  I find myself, more and more, having to go back and reread sections that I have already read.  This is scary to me, not only because I have always loved to read, but because the two abilities that this disease had not stolen from me yet is the ability to read and to write. I am terrified of losing them.

Toward the end of this past week, I ended up spending almost the entire day and evening curled up on my bed in a fetal position just watching the numbers change on the clock.  The next day, I forced myself to at least stay off the bed and to do a couple small things.  Why was I in such a dazed state? What I  figured out is that I had been wanting, for a couple weeks, to go shopping at a local department store for a few things. We actually went there either late last week or early this week (can't remember exactly), but my husband was only interested in a quick in and out trip to buy himself new jeans. He promised we would come back on another day to shop for what I wanted.

I didn't want to keep asking him because I didn't want to be a pest and ask everyday.  Each day, I thought we might be going but we still haven't.  The one day I began to approach the subject, I asked what he had planned for the day and was told there were some really good sports on television.  That made me feel like I am not important at all.  Logically, I know he keeps delaying it because he hates to shop, but an FTD mind does not work the same as one without. It's not like I just want to browse, I am not a shopper either... hate it in fact.  It is a good reason why I want to go this time.  I have lost enough weight that none of my summer clothes fit.  Not sure men would understand that, but all the women will. I could have asked my sister to take me, she would do it in a minute without even thinking about it. For some reason, though, I felt the need for him to help me select my purchases this time.

Bottom line of this blog entry is that it doesn't take much to put us, or at least me, in that "daze" or to discombobulate us.  (Not sure that is an actual word, but I love it.)  Anything new or out of my comfort zone, a change in my normal schedule, meeting new people, going new places, eating in a noisy restaurant, shopping in an unfamiliar store... they can all do it.  Sometimes it seems like it is for no reason at all and takes me a while to put my finger on what it is. Sometimes I can't figure it out, but that doesn't even matter.  Even if I know why, it doesn't help me shake that dazed, confused and uncomfortable feeling.

Feeling Useless

From reading posts on Facebook, it seems I am not the only person with FTD who experiences this problem.  I cannot still do all the things that I used to be able to do.  This frustrates me to no end. Some days I feel totally useless. There are two things that compound these useless feelings.  The first is when family members, and in some cases, friends refuse to recognize this fact. They assume that I can still do all the same things.  What makes this so bad is that they ask me to do something that I am no longer comfortable doing, usually because I have been embarrassed by trying to do the same or a similar thing previously.

I have a friend who admits that she is in total denial that there is anything wrong with me. The coincidence of this is, that one of the first things that clued me into the fact that there was something wrong happened when we met for lunch a few years ago, before diagnosis.  We were sitting in at a table in our local Applebee's when I realized my shirt was inside out.  Now, I probably wouldn't see anything wrong with that, but back then it really embarrassed me.

My husband is so very supportive of me.  He readily admits that I have FTD and that it has progressively worsened.  But he tends to think of me as I was before FTD.  I tend to think of this as the love filter.  He desperately wants me to be the same.  He doesn't want to face the horrid facts of the disease. He also thinks I can still do a lot of the things I used to be able to do.  I try to cook every evening and he tries to help out, but I am not sure that he realizes that there are days when I just don't feel like I can do it or want to make the effort. On those evenings, he will gladly take a bigger role in helping or will run out to get something, but I don't think he gets why I can't make the effort sometimes. Plus, I am so very reluctant to ask for help, because I don't want to admit to myself that I can't do it.

The biggest problem we have, is that he still thinks I can take care of "things."  He was a busy executive in the healthcare industry and worked very long hours, and often on the weekends. I, fortunately had been taught by my father to be self-reliant and could do a lot of household repairs. What I couldn't do, I was good at arranging it to be done. I managed everything.  Problem is, he still thinks of me as able to do all of it.  He willingly encourages me to hire people to do all the stuff I used to do, don't get me wrong. Problem is, I have had trouble, for the last two or three years, making phone calls.  Some days I can't handle talking on the phone either.  Part of this is the difficulty I have getting thoughts or words out so I end up stuttering or just coming up blank.  Still, every time something needs to be arranged, he turns to me to do it, whether on the phone or online. When I appear reluctant and say that I don't want to, his response is usually "But you do it so much better than I do!"  I know, I should just refuse to do it, but then it falls into that category of feeling useless. It is a never-ending cycle. I end up doing it successfully, albeit totally uncomfortably, so he continues expecting me to do it.

The other compounding factor is that some days I convince myself that surely I can still do this easy task.  I end up having to ask for help (this has always been difficult for me to do) or don't ask and then end up breaking down.

It all boils down to total frustration, disappointment in myself and usually depression for days.

I have seen so many caregivers of persons with FTD complaining on Facebook about their "loved" ones being just as I have described, unable to do the things they used to do or that the caregiver wants them to do.  Some of them say horrible, horrible things.  I have tried explaining to them that their loved one is just as frustrated as they are and that it is not that the person is choosing to not do something, it is that they cannot do these things anymore.  I cannot imagine what indignity these people with FTD are suffering. It angers me beyond belief.  It defies logic for them to think that their loved one is intentionally messing their pants and that they just don't want to bother going to the bathroom or cleaning themselves up.  No one would make that choice.  It just seems cruel that they would think that and I can only imagine what abuse they are heaping on their so called loved one.

Please, please, please, if you are caring for someone with FTD, please realize that we slowly lose the ability to do things.  This disease is fickle and most of us with it vary in what symptoms we develop, so you can't really compare one to another.  But trust me, not one of us loses our abilities intentionally.  Believe it or not, it frustrates us as much, if not more, than it does you, the caregiver. We also are aware that we are progressively losing abilities, both physical and mental, and developing new pain. I cannot begin to describe the headaches. Think of the worst headache you have ever had and multiply by at least three and you might start to get an idea. We also recognize what a horrible death we are facing and each new symptom that we develop scares the living crap out of us. But this depressing topic that I will save for another day.  After all, if I don't think or talk about it, it won't happen... right?  Please?