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?

Give Us a Little Respect... PLEASE?

A week or so ago, a gentleman from the church we both belong to asked about my health.  I was walking with a cane and he was concerned that I had a reccurrence  of the cancer I had about eight years ago.  I told him that I did not, that it was Fronto Temporal Dementia.  His response was "You do know that if you know you have it, you don't have it very bad, don't you?"  I replied saying that while that is often true for Alzheimer's Disease, it was not with FTD.  He turned and walked away from me.  Apparently trying to educate him was an insult because he knew more than I did.

I have learned from people like this to never question someone's word that they have an illness. While I realize many have good intentions and are trying to make me feel better, hearing over and over that there doesn't seem to be anything wrong with me, that I look really good, hurts.  It comes across as though they think I am lying.  No, I am pretty good at smiling and faking it, at least for short periods of time.  Even that is getting more difficult now that I am having more and more speech problems.

I do not want sympathy and certainly don't want people "fussing" over me.  I just want people to not dispute that I have an illness, even though they have never heard of it.  It amazes me at the numbers of people who are close friends or family members who don't bother even googling it to get a little information.  Several have actually told me, "I guess I am in denial that there is anything wrong with you."  I understand their not wanting there to be something wrong, but their denying it just makes me feel more isolated.  It seems that in order for some to deny that I actually do have a life threatening disease, they have to avoid me totally.

I get so tired of getting the disgusted look like people are thinking I am drunk because I can't walk right.  I get so tired of people getting frustrated when it takes me a long time to get a sentence out or when they jump in and try to finish the sentence for me.  What they add is usually not the point I was trying to make at all.

I have had several people tell me they have missed me at social meetings.  I am assuming they are being truthful.  I, however, cannot force myself to be truthful in return.  My response would be, "Then why did no one include me in a single conversation the last time I was there?" or "Why, when I left my purse behind and someone had to return it to me, did she seem like I was a royal pain in the rear?" No, I lie and say that I forgot about the meeting or some flimsy excuse.  I have noticed, though, that none of them call to remind me of the meetings.  The last meeting I attended, I was trying to do something, and because I was doing it slowly, someone jumped in and kept telling me what to do and doing things so quickly that I lost track of what was going on.  What I was trying to do was sell some items that I was regularly selling to earn money for the causes that our group serve. In the end, my inventory was totally messed up and I had to recount everything the next day.  She could have helped by assisting me, helping me calculate the balances due, but doing it at my speed.  I have since resigned from this particular fund-raising duty.

I will quit ranting.  The purpose of writing all of this is to stress the importance of treating someone with FTD with respect and consideration, not dismiss them from your life.  Most of us do still have things to contribute, despite our limitations.

Stressful Events

I have felt horrible all week... headache, anxiety and all-around grumpiness (bitchiness is probably more accurate, but I am giving myself a break here.)  I finally realized what has caused it.  I have a family wedding to attend tomorrow.  This is not something I would normally dread as I have always loved weddings and I certainly love my family.  I kept saying I was really looking forward to it, and I truly am, but I guess I am dreading it at the same time.

I thought I was being wise, and RSVP'd to the wedding ceremony but not the reception.  I knew the reception would be impossible for me to deal with.  I would probably be running for the door about five minutes after I got there.  I didn't realize that the wedding ceremony was stressing me until yesterday, when I tried on the suit I am planning to wear.  I actually had to have it taken in, which is a good thing!  I guess that made me realize that the time was here and that I really was going.

Knowing that there will be many people there whom I have never met, plus I am guessing there will be more than two or three people there and that is my usual limit for comfort.  I am praying that my FTD doesn't make me do or say something stupid.  It is so frightening how these bizarre things just pop out of my mouth.  Then there is the whole "lack of empathy" thing.  I am afraid I will not act correctly and offend people.  Though I am thinking it will be better than when I have to go to a funeral or viewing.  At those events, my lack of empathy is quite evident.  For this, I'm hoping if I keep a smile on my face, no one will know.

After it is over, I know I will be so glad that I attended and celebrated it with my family.  I am on the groom's side of the family, and I know if I mess up, the groom's mother will understand.  She has done a lot of research on FTD, so she "gets" it.  Not sure about the rest of them.  Yes, I know I am worrying way too much, but I just can't stop it.

My sister and I are going a little early, so that we can hopefully get me an outside aisle seat so that I don't feel closed in and in case I have to make an escape.  That should help quite a bit.  I just hope I can be calm enough to pay attention to what is happening instead of focusing on how I can get out of there.  I hope my sister can relax as well.  She "fusses" over me, trying to help when sometimes I just want to be ignored by everyone so that I can be as inconspicuous as possible.  She will probably read this at some point and not understand, but I hope not be offended.

Then, in a couple weeks, I have to do it all over again for the wedding of a very dear friend.  I wouldn't miss either event, despite how uncomfortable I will feel.  When it comes to those I love, it is certainly worth making the effort.  Wish me luck!!!

Family Comes Through

I have been complaining in my blogs lately about not being "heard."  That people don't understand the illness, so they either deny there is something wrong, or get irritated at my symptoms.  This includes trying to finish my sentences because I have to pause to think of the right words and when I am stuttering because I am nervous.  It can also be when they get irritated because I have an awkward gait or seem to trip over my own two feet.  Then there is the worst, the times people look at me and don't believe what I say, because they think since I have FTD, I must be stupid. So today, I thought I would like to talk about an occasion when this didn't happen!

A couple months ago, a cousin gave me a call.  She and her sister and my sister and I were pretty when we were young, probably up until senior high or so.  She had started calling me every two or three months several years back so we were keeping in touch, but we hadn't seen each other since a couple family funerals many years ago.  This last phone call, she said she and her sister were coming up (they both live several states away) for Mother's Day and did we want to get together.  Of course I jumped at the chance.  I was comfortable getting together with the two of them, sure that they wouldn't be judging me because of my symptoms and the four of us would be just the right size of a group for my comfort.

Two days before the date, I learned that our aunt and uncle were coming too.  Don't get me wrong here, it is not because I didn't want to see them, but all of sudden the group was up to six and I was starting to get anxious.  Then on Saturday, we met up at a restaurant that was about halfway between where my aunt and uncle live and where my sister and I live.  When they arrived at the spot, all of a sudden, our group was eight because the daughter and grandson of one of the cousins came along.  I had never met her or her son, so I was ecstatic to see them, but the anxiety started kicking in.

It didn't take long to realize it was going to be okay. After lots of hugs, we settled down in a very quiet and nice restaurant.  The staff knew nothing about me having FTD and not being able to handle commotion and lots of noise, yet they sat us in a back section and never did seat anyone else in that section for the hours we were there.  Then again, maybe we were just too rowdy for anyone to want to sit there... nah, that couldn't be it.  My family rowdy, no way!  We are just "spirited."

So we were in the perfect place.  They all knew about my FTD, so I didn't have to explain it.  When I started talking and had to pause to think of words, they all just sat there patiently waiting for me to continue.  When I stuttered, they did not react at all.  I did not feel left out of any of the conversation and the anxiousness totally disappeared.  I also never felt like I was being judged and being found lacking, I was still their cousin, through and through.  There are two more cousins in their family who had not joined us.  They are significantly younger than the four of us, so we were never very close.  Maybe next time, we can include them as well.  I think I could handle it!  My family truly came through for me!

This is definitely a good example of how to deal with someone with FTD.  Include them in family gatherings, include them in conversations and make allowances for whatever symptoms the FTD family member has.  More than that, try not to be judgmental.

Oh, and my family totally rocks!!!

More Advice for Caregivers

This past week, I saw a post on Facebook that listed ten phrases from the Bible that tell you how to be more loving.  I have not bothered to look up the credited scripture verses, and I am rather down on God and my faith right now, so I won't bother listing the verses.  I know it sounds harsh to say I am down on God and my faith, but it is my reality right now.  It saddens even me, because I have had a strong faith for as long as I can remember.  It is, however, hard to stay faithful when I don't feel He is being faithful to me right now.  I keep trying to work through it.  This is not what I started to talk about, but then again, I digress a lot, both here and in verbal speech.  Perhaps my mind bounces around inside all the space left after the lobes of my brain continue to shrink?  No, I don't think so, but it was really funny this morning when my sister and I were joking about it.  Guess you had to be there...

Back on the subject of the ten phrases, it occurred to me that at least seven of them could be good guidelines for all who are caregivers for someone with this disease.

Listen Without Interrupting:  Many people with FTD, including myself, struggle to get the words out sometimes.  The words seem to be hanging out there, but my brain can't quite get a hold on them.  I am sure it is exhausting sometimes to listen to me or others with the problem, but don't interrupt and try to insert the correct word for us.  That just leads to more frustration, which leads to more of a problem thinking of the words we want and, sometimes, making us forget what we were trying to say at all.  You would probably laugh hysterically if you watched me write these blogs.  I will sometimes stare at the screen for minutes on end, trying to come up with a word I want.

Speak Without Accusing:  Yeah, we do some really stupid things sometimes.  We put things in places where they don't belong, make coffee without putting the coffee into the brewer, put on our shirts inside out and a whole lot more.  To be correct here, when I say "we," I am saying "me."  If you need to point out that we are doing something incorrectly or are asking where the milk is (I probably put it in the cabinet), ask calmly and keep it as light as you can.  Often times, it comes off accusing to those of us hearing it.  My immediate reaction is "Oh, no, I did something stupid again and he sounds angry that I did."

Answer Without Arguing:  This goes hand-in-hand with the last one.  If I ask you a question that, to you, seems really stupid, please know that I just cannot think of the answer right now.  Take a breath if you need to before answering.  I feel stupid enough having to ask it in the first place.

Give Without Sparing:  Unfortunately, this is a constant for you caregivers.  You are giving of yourselves and sacrificing so much of your own lives to care for us.  I realize that and I am sure most others with FTD realize it as well and feel horribly guilty to be so dependent on you at all times.  This disease is no fun for either of us.  It also might be why we lash out at you sometimes.

Enjoy Without Complaint:  The things we FTD'ers enjoy most may seem very boring or senseless to you.  I find enjoyment from playing simple computer games that are geared for children.  I figure it is exercising my brain somewhat as well.  I have heard of others who like to do very simple jigsaw puzzles or do simple crafts (with the caregivers doing most of the work).  Try to find some enjoyment in that yourselves.  Say I want to go for a walk, enjoy it while it lasts and don't complain if I can only handle walking for one block.  Doing all these things are very difficult for us and take a lot of energy.  I couldn't walk a straight line if my life depended on it, but don't complain that I am walking like I am drunk.  Just offer me your arm if I need to lean on it.

Forgive Without Punishing:  This one really needs no explanation.  We go back to some of the really stupid things we do, if it has caused some damage, like the milk that I put in the cabinet has soured, take a breath and forgive.  This is a big one in the later stages of FTD when the bathroom accidents start happening.  No one that I know of enjoys cleaning those up, but remember it isn't being done purposely or out of anger or boredom.  It just happens.

Promise Without Forgetting:  Most likely, your life as a caregiver, is a frantic mess.  If you are working at a job, raising the children, helping out a parent, and still having to be the caretaker, I cannot imagine how you juggle it all.  All of them are a full time job unto themselves.  But, if you have made a promise to your loved one, try your best to remember to follow through.  Looking forward to it just might be what got your loved one through another frustrating day.  If you promised to bring home some cookies, they might have spent the entire day looking forward to one of those cookies.  We do crave out sweets, it's part of the disease.

I will add one of my own here.  Forgive Yourself For Not Being Perfect:  All these suggestions I have made are not cast in stone.  As I said a few paragraphs ago, being a caregiver is a difficult and thankless job.  You just cannot do it all no matter how much you try.  If you end up yelling at your loved one, forget something you promised or don't have time to sit and do an activity with them, it's okay.  Tell them, sincerely, that you are sorry you didn't, or couldn't, do it... and ask for their forgiveness.  Sitting for a minute, holding their hand, or giving them a simple hug, just might make it all okay again.