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.

Caring for Someone with FTD

Today, I need to address the caregivers.  I often say that the only thing worse than having FTD, is having to care for one who has it.  It is pretty much a thankless job.  I often lament about how friends and family shy away from me because I have FTD and they avoid me as much as possible.  I have said before, I do understand why they do that.  It is difficult to see someone you love falling apart. But today, I was told that this happens to the caregivers as well.  Now, that is ridiculous!  Are they afraid the caregivers are now carriers and they will catch it?  More likely, just as it is with those with FTD, the others are uncomfortable because they don't know what to expect or what to say.  For crying out loud people, the caregivers need a break and may still be able to visit your home, go out for lunch, whatever.  I say shame on those who can't bear a little bit of discomfort to help out a friend, or just to keep up the relationship.  Interesting enough, after I blog about this subject, I usually get a couple calls from friends, I am assuming that it is from guilt.  To them, I say "Don't bother."  I can tell the difference if you are truly interested in me or not. Enough ranting on that subject!

Okay caregivers, I think that because you are so used to helping the person you are caring for, you can sometimes do too much.  This often results in the FTD sufferer feeling like a child.  Never talk to them like a child even though it might seem like you are caring for one.  It is belittling and insulting, please believe me on this.

I would like to also caution you about is don't take total control.  If the one for whom you are caring can still make some decisions, allow them that dignity. Do not make decisions that they are still capable of making on their own, even if you think you are protecting them.  Now, in some cases, you do need to protect them.  There is a woman I was acquainted with because she worked in a store I frequented.  She started calling me often.  Unfortunately, she is one of those emotional leeches... sucks out all your energy and leave you feeling depressed.  It used to be that I could get her to hang up by starting to talk about myself.  Even that doesn't work anymore, she just ignores it and keeps on talking about herself again.  Main subject, "Woe is me!"  I have to have my husband shield me from her.  She still calls, even though we have both explained to her that I just can't talk on the phone that it stresses me too much.  So now, I don't feel guilty not answering when we see her number on Caller ID.  I struggle enough each day to keep from feeling depressed because of the FTD and its limitations, I sure don't need to talk to her!

On the other side of the coin, if someone asks you if your loved one would like to, or could, do something, don't immediately shield them and say no.  Ask them if they would be up to it.  If they say yes, you might want to warn the person asking that if it gets to be too much, please don't argue with them when they say they can't do it anymore.  It's always good for the FTD sufferer to be able to step away from something that is stressing them.  But, if you keep them away from anything that might stress them, you might be shielding them from something they would enjoy doing.  If you let them decide, you might prevent them from feeling useless.

In the same vein, allow them to do some things around the house.  Give them some laundry to fold... even if you have to redo it later. Or, if you are getting ready to do  laundry, ask them to gather up the dirty towels. If you are cooking, if there is a simple task, (I would suggest skipping any that involves knives!) have them do it.  Everyone likes to feel needed.  I am lucky, I can still cook (and handle a knife).  Cooking was always one of my favorite things to do.  I have to break it down into tiny little steps now, and I have to rely on tasting things since I can't follow a recipe.  My husband is usually just a few feet away, ready to offer help if it looks like I need it, but he will also back down if I tell him I've got it.  He always checks to make sure the oven and stove are turned off and he reminds me to use a potholder, but he knows I need to keep cooking as long as I can.

Caretakers, after saying all this, I say. God bless you all.  I have been on the other end, I know how frustrating and exhausting it can be.  My biggest advice is that you need an occasional respite. Ask a friend or family member to sit in for you for a few hours so you can have some "me" time. Or, if you can afford it, many nursing homes offer respite weekends where they will take in your loved one for the weekend and allow you some time to yourself.  You need it!

I Can Still Have Fun!

I discovered something interesting over the past weekend.  I have no idea if it is true for everyone with FTD.  My husband and I visited the Philadelphia area, where we lived 17 years ago, and had not been back to visit for 10 years.  A lot had changed, so many more businesses have built up.  I could kind of remember how to get around, but got horribly confused if someone started talking about route numbers or names of roads.  I told my husband, "don't ask me how to get there, just go where I point."  He said that considering that one of my first FTD symptoms was getting lost in familiar places, that it might not be the safest choice.  So he was armed with a stack of maps he printed from the internet.  Between the two of us, we didn't get lost even once.

That was interesting but not what I was excited about discovering.  My FTD did not prevent me from visiting with our wonderful friends!  I was smart enough to only schedule one event or visit each day, so that we could go back to the hotel and I could have peace and quiet to recharge.  This helped tremendously.  I only had to leave one event, a retirement party, a little early because too much commotion was going on.  BUT, when we were out with friends, even in a noisy restaurant, I communicated much better than I normally do in a social setting.  It is something most people with FTD already know, but it was surprising to me.  It is simply that with these good friends, I didn't feel like I was being judged, pitied or ignored.  I knew that if I stumbled... over my own feet or verbally, I would still be totally accepted.

The only frustrating thing occurred when a friend was denying my symptoms with "oh, we all do that," or "I do that all the time."  This is a friend who is significantly younger, just a few years older than my daughter.  After hearing these platitudes enough times, it sunk in that she desperately doesn't want there to be anything wrong with me.  I "mothered" her from the point we met.  She was new to the area, no friends or family nearby and being the mother hen that I always was, I tucked her under my wing.  I think I invited her to our house for burgers the first time we met, which was at a horse barn where my daughter's horse was boarded.  Realizing why made it possible for me to enjoy our visit instead of becoming frustrated.

The four-hour drive each way was the only truly stressful part of the trip.  I relied on anti-anxiety medication for that part of it.  Anti-anxiety meds, such as Ativan or Valium, do not work for a lot of the people with FTD with whom I am familiar.  I am very lucky that for short-term usage, it helps me cope with stressful situations.  This disparity with the medication seems to be true of many meds. When comparing notes with others with FTD, the drugs that work well for some don't work for others.  Thinking about it, I guess that it true in the non-FTD world as well.

I have a few more things coming up in the next few months... two weddings, a birthday party and a charity event come quickly to mind.  This trip has made it easier for me to look forward to them, as long as I have a coping plan in mind, I think I can do it!

More and More Frustrations

I swear they should rename this disease FTF, for fronto-temporal frustration. I know I am always writing about my frustrations, but this is because I am always dealing with frustrations.  I'll tell you the one I am dealing with right this minute. I had finished this blog and was about to click on "publish" but somehow did something wrong and it all disappeared.  Now I have to try to remember what I had written...

Today's frustrations were several.  First, I had an appointment with my chiropractor, who I dearly love and she does wonders with my neck and back which limits the headaches I suffer.  Despite what she believes, though, she cannot cure my FTD!  In her defense, she is studying to become a neuro-chiropractor, so she does understand neuro problems better than most. However, she still keeps comparing it to Alzheimer's. I have given her literature, but it's obvious she has not read any of it. I do not believe she can cure my FTD by shining lasers up my nose to stimulate the brain. I do not believe that she can stimulate the other areas of my brain and they will allow the shrinking areas to regenerate.  It truly wears me out.  Can we, please, leave it alone for at least one appointment?

From there, I went to my hairdresser where I encountered one of the things FTD sufferers hate hearing the most.  "Oh, that's nothing, I forget things all the time too."  Oh, if only it were that simple!  I want to say back "Yes, but you don't have a terminal illness that causes it."  But I don't.

There are so many things that I would love to say to caregivers and anyone who loves or happens to come across someone with FTD.

-  Please, do not compare FTD to Alzheimer's.  Yes, they are both terminal diseases and are both horrid, but they are not the same, do not progress the same and should not be treated the same. This actually makes me feel like you don't think I know what I am talking about.

-  Please do not ignore me when I am speaking. I know I ramble on, sometimes about inane things, but in there somewhere, I do say some intelligent and important things.  When I later refer to what I said and get a blank stare from you and you insist I never said it, I feel that you think I am stupid or imagining things.

-  Also, when I am speaking, please do not finish my thoughts or sentences for me or start to respond while I am still speaking.  It takes me longer to think of all the right words and get my point across, but you do not always know what I am going to say. When you do that, I feel like you don't think what I am saying is important enough to listen.

-  Please, if you see I am struggling with a task, do not jump in and take over.  Asking if I need help is a good thing, assuming I can't do it at all is not. (On a personal note, my husband really gets this point and I probably don't thank him enough for helping me to do it myself.)

-  Please realize that when I walk slowly or unevenly, I am not drunk or under the influence of drugs. Do not make "cute" little remarks, they are not funny and cut to the quick.

- Please, please, please... when I go to another room or quiet area, I am not ignoring you or being rude. Often times, even normal goings-on are over-stimulating and I need to go to a quiet place to refocus.  Do not keep coming in "to check on me."  That defeats the purpose.

I will stop with just these six.  I am sure you get tired of my rambling on about the frustrations of my every day life.  I do realize that we all have frustrations we must cope with, but for FTD sufferers, or at least for myself, the coping mechanisms don't exist any more, they left right along with the areas of my brain that have gone away.

Random Act of Kindness

Ay-yi-yi!  I decided to write an entry today, but then couldn't figure out how to get to the place where you enter a new blog.  I'm sure they didn't move it...  I just couldn't remember.  I just kept clicking on things until I found it.  Kind of a scary way to start out.

If you read my blog from last week, you remember that I mentioned a gentleman who had come to the house to give us a bid on some painting and a couple tasks around the house that we could not handle. One of those was to install a second handrail on the stairs. When we were talking, he asked if it was okay if he could not get to it for six weeks or so.  I told him that was completely acceptable since I had waited over six months to call him.  When he was leaving, he said "Oh, I bet you would like that handrail up sooner?"

Well, he showed up this week, delivered the bid in person and prepared to install the rail.  After it was installed, we asked him how much we owed him.  His answer?  "This is my gift to you. I know how important it is for your safety."  I think he cut us a break on the price for the painting as well, since it was much less than what we considered reasonable and what we had paid the last time we had painting done.  I have seen a lot of his work at the church where we both belong, so I know it will be quality work by a quality man.

Now, if I could quit changing my mind on what colors I want...

On a different subject... I belong to two different online support groups.  The first is only for those with a confirmed diagnosis of FTD.  It has been my saving grace many times.  We help each other by sharing information we find but mostly, we support each other. We post our frustrations as well as the things that we do that you can't help but laugh at ourselves about.  The second group is open to, not only those with FTD, but also their caregivers.  This one often frustrates me because a lot of the caregivers get a little carried away, in my opinion, when venting about the loved one for whom they are caring.  But, every once in a while, I am able to help someone by giving my input from the patient's perspective.

I was able to do that a couple times this week.  Since I get so much from the group that is exclusively for those suffering from FTD, it was very satisfying to me to be able to help them.  One was just common sense, I thought, but since their loved one was no longer able to communicate, it was something they had not thought of.

Of course there was yet another example of someone on the mixed group insisting I was fine since I was still able to communicate.  This disease is fickle when it decides what to rob from each of us. I can communicate well, as long as it is typed, not so well when speaking.  Writing by hand?  Forget it, Many, many times, I can't remember how to make the letters.  So, that's easy, I keep typing!!

Daily Frustrations

Yesterday, I broke down into tears and yelled that I don't want this damned disease anymore. Yes, I do realize there is no cure and that I can only keep doing as well as I can, but it wears me out... physically and emotionally.

I decided yesterday that I wanted to cook a real dinner.  I decided on pork tenderloin with apple stuffing, baked potatoes and a vegetable.  I am 62 years old and have probably made stuffing well over 200 times, how difficult is it?  I just needed to chop up some celery, onion and an apple. Saute that till soft and add it to a few slice of bread cut up and add some seasoning. Easy-peasey... well, it used to be anyway.

I spent at least 10 minutes assembling the things that needed cut up. It took me another 10 to decide what cutting board and knife to use.  Spent at least an hour cutting up the veges.  Keep in mind, I was only making a small quantity of stuffing so there were no volume issues.  I managed to cook these things without much trouble. Simple, as I said, melt some butter and saute till tender. I actually did it perfectly, until I grabbed the bottom of the skillet that I had just removed from the burner.  That is when I lost it.  After calming down and starting again.  My husband asked what was wrong because I was just standing there staring at a cabinet. I had to tell him that I couldn't decide which pan to use.  He started helping at that point, and the pork and stuffing turned out really well.  Burned my hand again when I started taking the baked potatoes out of the over without a pot holder.  I know my brain is degenerating, but you would think it would remember something as simple as "Don't touch the hot stuff, it hurts."

Today, I am afraid to cook dinner.  It is already 4:00 in the afternoon and I cannot even decide what we should have, much less get up the courage to cook it.  I am going to be in big trouble if the time comes when I can't cook anymore.  My husband once called me when I was visiting my mother and asked me how to make instant oatmeal.  True story!

Bottom line here, if you are with someone with FTD, pay attention to what they are doing and offer to help when see them start to struggle.  You may have be sneaky to do this without them knowing, but you don't want them to accidentally hurt themselves.  You want to keep encouraging them to do things, but pay attention to what they are doing.

There was another interesting thing that happened to me this week and I'm not quite sure how I feel about it, but it did frustrate me at the time.  We had a gentleman come over to give us a price on doing some work in the house. I can't even paint a wall anymore. He is a wonderfully nice man, a member of my church, and came highly recommended.  We were having a great time, a lot of laughing going on. Then he asked just what my brain issues were.  I told him FTD, then started to explain it as is usually necessary.  He said, I know exactly what you have, my sister had the same thing. Then it was like he couldn't get out of our house fast enough. I was confused.  My husband asked if she "has" FTD or "had."  He explained that she had already passed away from it.  Then it clicked.  I explained to him that other family members had experienced it and that we did indeed realize what the consequences would be.  He relaxed then and continued talking. He even volunteered to come over sooner to install the stairway handrail within a few days, even though he couldn't start the other work for a few weeks.  Yes, he did understand what I am going through. I am thinking the frustration came from once again realizing that this disease is a death sentence. Part of me felt relieved, though, that he didn't say "You seem fine, are you sure there is anything wrong with you?"

Feeling Better

I have not felt like posting for a while. I suspect it is related to my last post which was about cabin fever. I should still be suffering from that since it is below zero and expecting yet more snow. My husband went out last night and cleared the drive in the minus zero conditions. He also keeps about half of the deck cleared of snow so that when I look out the sliding doors from where I sit, I don't have to see all snow.  This was his idea two or three years ago and he continues to do it. God bless him.

God bless him in all ways, but especially the past few days. I always hated Valentine's Day because he never got into it, would give me a lovely card and that's it. I would cook him a wonderful meal that day, which was usually filet steaks that I would splurge on and would bake him a favorite dessert. This was the absolute best I could do for the last five years since not being able to drive.  BUT, this year he got it!  He took me out to dinner. We opted to go out on the 13th because, like most with FTD, crowds, confusion and a cacophony of sounds do me in pretty quickly. We got dressed up and went out. It was like a date and we haven't done that in a long time. We usually go to restaurants where no one would think twice if you came in wearing your work clothes, so this was a treat.  Plus, I got a gift... and a nice card. And you can probably guess what I'm going to say now. On the 14th, I still cooked his filet dinner and baked and decorated valentine cookies. Just seemed right.

Not only did that get me out somewhere special to break out of the cabin fever, but it made me feel like I am still appreciated. I hesitate to speak for everyone with FTD, but we have so many limitations and often feel useless, at least I do. So anytime I receive a compliment or am made to feel loved and appreciated, it greatly improves my attitude and approach to dealing with this stupid disease.

An interesting thing happened this past week. I think all of you, those with FTD and all who care for them, had a difficult time getting an accurate diagnosis. This week, I went in for my 6-month checkup with my family doc. She is the one I have raved about before as she refused to accept the diagnosis of depression that the local neurologists game me. After we had gone over my blood work and petty little conditions she keeps track of, like my B12 level and thyroid level, she sat back down and wheeled her little stool closer and said "Now tell me about your FTD and how it is going." So we talked for at least 15 minutes (pity the next patient waiting).  Then, she actually apologized for not knowing much about FTD! I said two things to her. First, I told her that she is a GP and is not expected to know all about everything, that's what the specialists are for. Then, I laughed and said "Besides, most neurologists don't know anything about it either."  Ain't it the truth???

Another development since my last post is that I have finally given in and am actually using my cane/walking stick unless I know I have someone to hang on to the whole time. The stupid legs just won't cooperate anymore. The legs giving out or not reacting to the brain impulses causes a lot of staggering. I'm sure a lot of people who see me out are thinking that I am drunk. So my grandpap's walking stick that my dad made for him is getting another good workout. It's nice to be able to use this heirloom!

Hope you all are keeping warm!

Cabin Fever

The biggest thing I am dealing with right now is cabin fever. It seems like it has snowed every day for the past couple weeks and the weather and roads are just bad enough to not justify going out for leisure. Since I can no longer handle grocery shopping, I don't even get to go there (thankfully for me and the other shoppers). It seems like my entire social life lately has been going every two weeks to the chiropractor and to get a B-12 shot.  It has been too cold to even want to venture outside. My husband is kind enough to keep part of the deck cleared of snow so that I can at least step out if I want to and so I can feed and watch the squirrels and birds, but that only entertains for so long.

We did venture out the other day to go check on  my sister when I could not reach her on the phone. We check in with each other every day to make sure we are okay. She lives alone, so when I couldn't reach her that day, we drove to her place to make sure she was okay. She was fine, just hadn't charged her phone. While we were out, my husband took me to the Hallmark store, one of my favorite places to shop because the women who work there are so nice and lots of fun. Then we stopped at my favorite Greek diner for lunch. Again, a fun place to go and a fantastic place to eat.

We now know that it is worth making the effort to get out more often, even though I am a horrible back seat driver. I know I wouldn't want to be driving me around. I panic a lot over silly nothings. This simple trip brightened my spirits immensely. Especially with the piece of baklava that the waitress made me take home... it was soooo yummy!  I had given her a little gift at Christmas, so she wanted to repay the favor. She also sent me off with a bowl of my favorite soup so I would have it for supper. I should give her gifts more often!

So, to all of you with FTD and to all of you caregivers, if at all possible, make those little trips to brighten the mood a little. Obviously, once you start reaching the later stages this advice would not apply, but in the meantime, make time to have some fun, even if it is an effort!

It is supposed to snow up to a foot again tonight, so I guess I will be trapped inside again for at least a few days this week.  At least the days are getting just a tiny bit longer each day so we get to see the sun a couple minutes longer, at least on the days we can see the sun.  Tomorrow that darned groundhog will probably predict six more weeks of winter. Hate that little varmint! Actually, those of you who don't live near Punxsutawney PA might not know about Punxsutawney Phil and his annual prediction. If not, watch the movie Groundhog Day sometime for a pretty good laugh. Just the right entertainment if you are stuck inside with cabin fever!

Informational Video

https://www.youtube.com/watch?v=7l4f9nGvmF4&sns=fb



The link I have posted here is a video of wife talking about her husband's battle with FTD. They were so fortunate to find Dr. Brad Dickerson at Massachusetts General Hospital who is an expert in FTD. Of course, this was after years of misdiagnosis, primarily of depression.  I found their story fascinating and was greatly encouraged by Dr. Dickerson and his research. I wish every one with FTD had access to facilities and doctors like this.

How Our Caregivers Can Make a Difference

All you caregivers out there, we couldn't do it without you! This post is to give you some insight into how you can make it even better.

If you read my last couple of posts, you will remember that I have been fighting the blues. I made some real progress in that regard this week.  I am going to tell you about a couple of them, gearing this toward the caretakers so that you realize it doesn't always take a lot to improve an FTDer's life.

On Monday, my sister broke a tooth and made an appointment to get it fixed the following day. Since our dentist is about a 40 minute trip, she asked if I wanted to ride along. I jumped at the chance since it seemed like quite a while since I  had been out and about. Plus, our dentist is a lot of fun. I know that will sound strange to a lot of you, but he is great. He sings to you, albeit off key. His work is excellent and he can give Novocain shots that don't hurt a bit. But I digress... My sister is braver than I am, apparently, because she chose to go without the Novocain.  I thought she was crazy since I am a pain wimp, but it meant that after she was done, we could go out for an early dinner. Since my husband owed me a birthday dinner (we won't go into that!) we chose a nice restaurant, had a drink, a delicious meal and shared a dessert. Our waiter was a lot of fun and it was a nice relaxing time. Amazing how a trip to the dentist provided us with a great day spent together.

I'm going kind of backwards here, but we need to go back to last Saturday. I had agreed to have lunch with a friend from where I used to work, We hadn't gotten together for probably 2 years.  I had also run into another friend whom we had not seen a while on Thursday at a doctor's appointment, and I told her that the next time they were down this way, give us a call because we would love to have them visit. Wouldn't you know it? It also got scheduled for Saturday. I was in such a tither that I actually canceled both of them the day before, because I was feeling too overwhelmed. Note to self: Don't schedule two social events on the same day!

Fortunately, the friend from work contacted me again and we set up a new lunch date for this afternoon.  My husband dropped me off at the restaurant (God bless him, he sat there with me until she showed up so I wouldn't become panicked) then she drove me home afterward.  That was fun too... turns out she now drives a Hummer and I had always wanted to ride in one.  Though getting in was a challenge since my leg weakness is not conducive to climbing up into it. My cane would have helped, but I was vain enough that I didn't bring it along because I did not want her to see me using a cane.  Silly me! Back to the lunch, we had a really good time, lots of laughing, got caught up to date on a lot of the clients whom I miss dealing with and caught up with her life and family.  She is getting married in June. I hope I will be able to deal with the commotion of it all.  Perhaps if I just go to the ceremony and skip the reception?

So, it doesn't take a lot to break up the boring pattern of the every day life of someone with FTD. I managed two social occasions this week without freaking out and had a good time. Okay, I confess that I did have to take an Ativan when I got to the restaurant today. That was because shortly before we left, I realized I had lost a necklace which caused me to run around in a panic trying to find it, leaving me wound up pretty tight. Finding it (in my purse where I had put if for safe keeping) helped, but needed the help of the sedative so I didn't refuse to go. I don't take them often, but sometimes they are the answer.

I almost got out the house another day this week. My husband had a couple stores he needed to visit in town, so he invited me to go with him since my trip with my sister was such a success.  But then, as it neared the time to go, he started telling me where we would go, what we would do, and what we would not do. What we would not do was stop for lunch, we would just run in and out of a couple stores and hurry home so he could have the usual snacks he has for lunch each day. That quickly gave me the impression that he didn't really want me to go along, so I refused to go. Actually, I broke down and curled up in a fetal position to avoid dealing with him. Of course I was incorrect in assuming he didn't want me along. Later in the day I explained that a little encouragement was all I needed. If he simply had said he was sorry he caused me to feel badly and that it would be more fun if I came along, that he really wanted me to go, I most likely would have gone.

Why did I include this disaster? I just wanted to explain that just because someone has FTD, does not mean that you should treat them like a child and make all the decisions. It is important that we feel included. No, we with FTD (or at least I) are not able to plan the excursion, but present us with a couple little choices so we feel included. In this case, he could have asked if there was anywhere else I wanted to stop and if I wanted to stop somewhere for lunch or was I okay to just come home. Unfortunately, with my increasing limitations, I tend to feel pretty worthless and need reassurances more than I should. I'm sure he is not going to be happy I included this incident in today's blog, but I thought it was a good example for caregivers.  He is actually a wonderful caregiver for me, but even he can't do everything perfect every time, and he is learning!

Is It Good to Remember?

The first thing you learn when you find out you have FTD, or that a loved one does, is that it is not Alzheimer's Disease.  I have written about the frustration that many have while trying to get a correct diagnosis.  One of the biggest differences is that, in many cases, the memory remains intact. It's in all the research and informational packets out there, including ones in the links that I have included in previous blogs.

The preserved memory is one of the big reasons it is difficult to get a correct diagnosis.  Most dementia screening is geared to memory tests. I continue to have increasing difficulties with getting confused over simple things. This is not a memory issue, it is that loss of executive functioning, not being able to figure things out or think about two things at once.

When I was first diagnosed and started researching this disease called fronto temporal lobe degeneration/dementia, I was greatly encouraged that it was likely that my memory would remain intact because, without getting into the details of the different types, the type I have, Behavioral Variant FTD (bvFTD, formerly called Pick's Disease) quite often spares the memory.  I figured most of the other symptoms, such as getting lost, loss of empathy for others, loss of impulse control, poor judgement and decision making, I figured these things could be compensated for until it got really, really bad. That has actually worked to some extent as my husband watches over me and has taken on a lot of responsibilities that used to be mine.

The bad part is that I do remember! I remember the person I used to be. I remember all the things I used to be able to do. I miss painting and creating things. I miss being able to watch a movie all the way through. I miss being a good friend. I miss having fun! I miss being a wife and feeling comfort in my husband's arms rather than being so dependent on his care. I miss being able to travel. I miss being able to pick up the phone and call someone. I miss being able to go somewhere or do something by myself. I actually miss working (well, sometimes, definitely not during tax season). The list goes on and on...

Now, I often find myself wishing that the disease would take my memory. That is quite selfish of me because I do realize that it would be much more difficult for my family. I am just having a really bad week, what my mother would have called "a feel sorry for Cindy week."  We used to only allow one day of feeling sorry for ourselves when something rotten would happen, then we would get on with making things better. This week though, just when I would start feeling like I could get above the rotten things, another one would pile on. A huge problem of being so dependent on others is that I leave myself wide open to being disappointed.

Are you reading and thinking "Wow, get over yourself already!" or that I should stop thinking about the negatives.  That's okay, because that's what I am thinking the entire time I have been writing this. As I have said many times, I am so very thankful that I still have the ability to read and be aware of what I am reading, along with the ability to write somewhat coherently... so VERY thankful. I am also extremely thankful that I have family to care for me. As I learn of others whose loved ones have abandoned them because of this disease, or the others who are way too young to have to suffer from this disease, some even still trying to raise their children, I do realize how fortunate I am.  I do. It is just tough some days to balance it all out.

I apologize for being so down in this week's blog. I was going to skip writing one this week, but thought that perhaps it might help caregivers to realize some of what is trapped inside the mind of the loved one they are caring for, or at least what is trapped in my mind.  Now, where did I put those bootstraps?  I need to start pulling them up!