Saturday, April 22, 2017

Something To Look Forward To

I have mentioned the AFTD before, but just in case you missed it, it is the Association for Fronto Temporal Degeneration. I have also mentioned that their annual education conference is coming up. Right now, it is 12 days away. Okay, it is actually 13 days away. The difference is that the online support group for those of us with FTD happens the evening before and it's only 12 days till that.

The get together is just for those of us with FTD and the caregiver that has accompanied us. Someone asked me a couple days ago how can I enjoy something like that. After all, it is in a pub/restaurant, is most likely crowded and noisy with lots of commotion. Often, when faced with similar circumstances, I become extremely stressed and need to leave. Good question! The fact that it is one of the rare instances during the year that I consume alcohol, that definitely might explain part of it. I think the primary reason is that we, like everyone else, can be in an "up" state. This is probably excitement, adrenaline or whatever you want to call it. Think about it, when you are relaxed and having fun, isn't it easier to keep going?

The other day a few of us with FTD were video chatting and we all said pretty much the same thing. We go to conference and have a great time, make it through a couple very active days as well as the travel days. Then, we crash. I have the week after the conference blocked out for recovery time. Also, the AFTD provides us with a "Quiet Room" where we can go and recharge ourselves or calm ourselves as necessary. No activites, just quietness, in that room.  Just like in our everyday life, we do get sensory overload which triggers so many of the bad aspects of FTD such as agitation, cognitive decline, anger and the list continues on and on. By giving us a place where we can go off and be by ourselves, we can make it through the day. Since it is held in a hotel conference center, most of us can go back to our rooms for a bit if necessary as well. I know last year, my daughter and I took our lunches back to our room so I could decompress for an hour.

It is not just because we look forward to the conference so much, it is the joy we find in being surrounded by people with the same disease, the same symptoms and the same frustrations. We don't feel like we have to pretend, we can let out hair down and not worry about what the others are going to think about us because we all understand. If we are stumbling around after having an alcoholic drink, we don't have to worry about others thinking we are drunk, we know it is the FTD.  If we are speaking to someone and start stuttering or can't think of words, we know we won't be judged. We share information.  There are questions anywhere from symptoms to help with getting Social Security Disability approved.

This conference is also for professionals, in fact in the beginning years of this conference, those with FTD were not invited.  So, I'm sure you can understand that there is a lot of information presented on everything from the latest research to care decisions, ways to communicate and so much more. Those of us with FTD are also welcome to attend those sessions as well.

One of the sessions this year is a panel discussion with three pairs of someone with FTD along with their primary care partner. I am so honored that my daughter and I have been asked to be part of this panel. If you regularly read my blog, you know how important it is to me to share any and all information that I have in the hope that it just might help someone else. As I say repeatedly, I have experienced dementia from both sides... as a care partner and with FTD. I don't have any more information than the next person, but it does make it a bit easier for me to see the frustrations that both sides are experiencing. I know I will also learn from hearing the stories of the other pairs.

Throughout the conference day, there are break out sessions to provide everyone choices to sit in on the subjects that interest them most. There are also break out sessions for those of us with FTD to cover subjects that are more interesting to us. The nice part, for me, is that it is only us. You have to have FTD to  join in these sessions. Again, no threat of judgement.

I will admit, that despite all the information we will hear and share, the part of the conference I look most forward to is the camaraderie. I look forward to meeting, face to face, those I talk with online. I look forward to all the hugs, all the laughter and all the understanding that we share. This will be only the second conference I have attended. Others have attended many more than that, have more knowledge than I do and know more of the people. That does not matter though, we all are on common ground. It is the only place I have found where I feel totally comfortable to let my hair down and have a good time.

For instance, last year, at the reception following the conference, I spilled a full cup of coffee all over the buffet table. It happened because I was trying to fix my cup of coffee and hang on to my cane at the same time. I was mortified until I realized people were laughing with me and several told me about similar experiences. They didn't care one bit that I am so clumsy that I spill things, because they do too!

As I said, 12 days and counting!

Friday, April 14, 2017

It Doesn't Take Much to Become Too Much

I usually take time each day to visit the online support groups that are for both caregivers and those with FTD. There is one complaints and/or questions that are posted by caregivers way too often. This is the complaint that the loved one they are caring for "just wants to sleep all the time." That one, or "just wants to sit and do nothing" all the time. I cringe every time I read these types of questions. No matter how much I, and others with FTD, try, we cannot convince them that it is not that they "want" to sleep all the time or "want" to sit and do nothing. It is more like they "need" to sleep all the time and "cannot" be doing things. The loved one is not being lazy or uncooperative just to irritate the caregiver/s, I assure you.

I can really only speak for myself, though I see others with FTD saying the same thing. There are days that we cannot seem to get enough sleep, or that we have no motivation or energy to do anything. These things can be made worse by their surroundings or the previous day's activities or just about anything that requires brain power. That includes everything!

This past Sunday was a "down" day for me. I played on the computer, wrote a blog entry and just goofed off all day. The dinner I fixed was super easy. It was a good day to recharge myself. Unfortunately, every week, Monday always comes next. I really wish we could change it around once in a while. Monday is our grocery shopping day. We found out from the store manager that it is their slowest day, so that is when we shop. I make the grocery list on Sunday, just to soften the load on Monday.

This past Monday was no exception. I was already feeling stressed that morning, so I actually took a .5mg Ativan. Shopping actually did go a little bit better than usual, so when we got home and got everything put away, my husband and were still speaking to each other and I hadn't locked myself away in my quiet room. So, he suggested we make a run to Sam's Club. We only needed six things so it shouldn't be too bad. Wishful thinking!

It was a fairly quick trip through the store. The downfalls were the noises of the forklifts running and beeping, people diving in front of me with their carts, just too many stimuli. Plus, who told them it was okay to move things around to different locations? Sure wasn't me, I don't do change! But we survived and made it home just fine.

The problem was that I was totally exhausted, both physically and emotionally. My brain had to work itself much too hard by the end of that second shopping trip. The next day, Tuesday was spent trying to figure out where my husband had lost his ring of store discount cards. I don't know if this exists everywhere, but here in PA, every store has a discount program for you to join and you need to have a card or key tag to get the discounts. We were trying to figure out where he was the last time he remembered using it and it had been five days. He did the running around trying to hit all the stores he had visited since then, but the ordeal taxed my brain and again left me exhausted.

Wednesday, a friend took me to lunch. It was a gorgeous day, so we went to a park to walk off the lunch. It was fun, two "old" ladies walking along an uneven path with their canes. It was quite nice, truly. Thursday, is our usual "appointment day." I went to the doctor's office for a shot and to the chiropractor, then we stopped at our favorite diner-style restaurant for lunch. When we got home, I realized I did not have my cane. Plus, a package we were to leave at the chiropractor's office was still in the car. So we retraced all our stops again. I had left my cane hanging on the counter while paying our lunch tab and they had recognized it as mine, so it was easy to get it back. Then we had to stop for gas and go to the ATM for some cash.

None of these things, by themselves, are too much for my FTD-raddled brain to handle. Start bundling together like we did, and my brain becomes a disaster. My head was spinning, I couldn't focus on anything. I couldn't think about dinner. I ate half a piece of pie we had brought home from our lunch and a cup of tea. I was in bed by 7 p.m. I needed peace, quiet and darkness to survive.

I am still feeling the effects of the brain overload today. I slept almost 12 hours, but my brain is still in what I call it's "spin cycle." That is what it feels like to me when it becomes overloaded. The brain is spinning, trying to figure things out... what to do, how to do it, trying to not scream. I tried to do the puzzles I normally do in the newspaper, but I just sat there and stared at them. I just couldn't do them.

So, I am in my quiet room and this is where I shall stay as much as I can today. I am giving myself the day off tomorrow as well. That is the only way for me to get re-centered and my brain to get back to where it can function up to its ability.

This is what I want those caregivers to try to understand. I am fortunate that my husband finally understand this concept and can tell when I need down time. It's not that I don't want to do some things today, it's that I can't. It wasn't that I didn't want to watch the baseball game with him last night, it's that I couldn't. A friend called today. It wasn't that I didn't want to talk to her, it was that I couldn't I had trouble understanding what she was telling me or how I should be responding.

Usually my weeks are not as hectic as this one became, thankfully! Those of us with FTD can only do what we can and we must remember to not push ourselves to the point of breaking down. This is true for the caregivers as well, but if they could try to understand that we do what we can, it might make it easier for them to deal with the exhausting days.

Sunday, April 9, 2017

Clinging to the Lifeline of the AFTD

I had already written an entire blog entry. When I finished and read over it, I realized it was all about me and my feelings. I was whining because someone had questioned my motives for what I do and hurt my feelings. My feelings don't matter, it is all about educating people about the disease and its ramifications and, hopefully, helping someone better cope with it. So I erased the whole thing and started over.

While dealing with this disease, I have met a lot of people, in person and online. It is awesome to have gotten to know so many other people who are dealing with FTD, those with the disease, as well as those caring for someone who has it. I have to remind myself that 99% of the people I encounter are totally supportive of one another, including me. It is these friends, most of whom I have met through online support groups, who have become a lifeline for me. After my diagnosis, I was feeling lost and hopeless until I found these groups and met these people. It is through many of their examples that I started to advocate for the disease.

The term "lifeline" is defined as a rope used to rescue someone who has fallen from a ship into the water or used to tie the sailors to the ship during rough seas. I often talk about my lifelines and find the term to be perfect. Without any of them, I would still be floundering around in the rough waters of FTD. I have often talked about having four of them: my daughter, my husband, my therapist and my online support groups. They are all equally important. Without any of them, I would still be wallowing in self pity and anger over being diagnosed with FTD. I think there should be a fifth lifeline, one that I often rely on, yet did not realize how important they are to me.

I am talking about the AFTD, The Association for Frontotemporal Degeneration. I learned about this organization when I first decided to learn about the disease and to not sit around and feel sorry for myself. Through them, I found links to much information about the disease and these links led to even more. It was through their online support group that I was invited to join a couple more. Without them, I would not have the online support from all these friends I rely on for advice, understanding, commiseration and laughter. I would also not have found a lot of the information that I have shared with my family to help them better understand what effect this disease has on me. I'll even be honest, they would not understand why I am sometimes royally difficult to deal with.

This organization puts in a lot of effort toward fundraising and supporting research from those funds. They also have a great system of outreach to help educate everyone about FTD and all the subgroups that make up FTD. One of the ways they do this is by holding an annual conference on FTD to educate professionals. A few years ago, they started including those of us with the disease and our caregivers.

I attended my first conference last year after much encouragement from my support group. This conference was just amazing! To be able to meet the AFTD staff and get to know their organization better was quite helpful. The conference sessions were quite informative and there was much printed information that could be obtained. The best part of the conference was definitely being together with so many people who are also dealing with the disease. We were able to compare notes, swap stories, share coping mechanisms and get to personally meet many members of the support groups. I was able to relax, let my hair down, and have fun. I knew these would be non-judgmental people who would not judge me if I said or did the wrong thing. I had not had so much fun since I had received my diagnosis. That my daughter attended with me made it perfect.

Do I sound excited about the AFTD conference? Oh, yeah! This year's conference is 3 weeks and 4 days away. I won't start counting in days until it reaches the 3-week point. Can you even begin to imagine party time with a whole bunch of FTD'ers? Believe me, it is amazingly fun.

This year, not only are we attending, but my daughter and I are participating in the program. We have been invited to be part of a panel discussion with 3 pairs of FTD'ers and their caregivers. What an honor and opportunity to share! Hopefully it is a day when I can speak well and don't keep stuttering, but I will have my daughter next to me to remind to pause and start over. In addition, these people know about FTD. If I have a problem speaking, they will understand why.

3 weeks, 4 days and counting!!! Look out Baltimore, we're coming!!!

Sunday, April 2, 2017

...so I keep on going!

Today, I received a compliment that "made my heart proud". The words came from someone who is very dear to me who is also dealing with a fatal disease. She said to me, "I keep hoping to die, but then I would miss you, so I keep on going." I suspect that to some people this comment would not be taken as much of a complement, nor that it is a good thing. I disagree.

The way I took it was that I am still making a difference in her life. Since most of us cannot or do not make the decision as to when we die, providing even a small reason to make her feel like there is still a little worth living for, is a good thing in my mind. Neither of us can drive anymore, so we do not get together nearly as often as we would like. I wish she lived next door so we could spend time together every day. We settle for phone calls. She says that I can still make her laugh. I love hearing her laugh!

Neither one of us gives the other those false platitudes of "You are looking better," or "I would never know you were sick." We also would never ask the stupid questions of "Are you feeling better?" or "Have 'they' been able to get rid of it yet?"

People mean well when they say these things, I am sure. However, these words are hurtful and/or discouraging. We have mirrors, we know what we look like. We know the disease has aged us very rapidly. Some days I look in the mirror and it seems as if I aged a whole year overnight. Just yesterday, I was looking in the mirror and was thinking about the annual Association for FTD conference coming up in 4 weeks and 4 days. (Yes, I am counting that closely!) I had just come across a picture of me at the conference last year and I realized that I look ten years older. I am not digging for complements, it is reality. Kind of sad, but I have two choices. I could think that "Gee, I really look bad." or "I don't look too bad for someone dealing with a fatal illness!" Guess which one I choose!

There are better questions to ask someone dealing with a fatal disease. Many are just a word or two different than the bad examples: "You look good today" or simply "I am glad to see you." Instead of the stupid questions you could say "Are you having a good day today?" or a very sincere "Is there something I could do for you?" What I wouldn't give for someone to offer to wash my windows or pull some weeds. Sadly, I would most likely answer the offer to help with an emphatic "No!" simply because I am stubborn. don't want anyone to see my dirty house or to do yard work that I, myself, hate to do. Even though I would decline, I would really appreciate that someone cared enough to offer.

What would be better is if someone just showed up one day, armed with some gloves and supplies, and said that I should find someone to take me to lunch because they are going to do (insert helpful chore here). I would be embarrassed most likely, but how can you politely refuse? I am not writing this to make anyone feel guilty enough to do this and I hope no one take it that way. I am fortunate that between my husband and me, we do keep the house clean enough, laundry done and meals prepared. It is only the bigger projects that fall by the wayside.

My friend's husband was just telling me this morning that both lights in his kitchen burned out last week, so he had to climb the ladder and change the bulbs. It scared the bejeebers out of me as he should not be on a ladder. I asked if there wasn't someone they could call to do that. He hem-hawed around, my friend said yes there is but he won't ask. I pictured him trying to get up the ladder while leaning on his cane and started giggling. I told him "You are such a man!" He admitted that asking for help would have made him feel useless. Useless? He spends several days a week driving her to treatments and/or doctor visits, does the cooking,plus keeps up with as much around the house as he is able. They are a tad smarter than I am because they do have someone come in to clean their home and have someone to do most of the yardwork.

In the meantime, she and I compare notes on how compensate in order to do things and what things we can still do to make us feel useful and our brains stimulated. She and I keep each other going and when one of us is feeling down, the other can usually brighten our spirits.

If you reread the first paragraph, it could also make a good argument for our country to allow assisted suicide. When faced with a fatal or debilitating illness, the time does often come when you know it is time to end your own suffering. That, however, is an extremely controversial subject and I do not care to get into the debate in this forum.

On a final note, I am reading a book, "What If It's Not Alzheimer's? A Caregiver's Guide to Dementia, Third Edition" and is very informational so far. It will take me quite a while to read it since any new information takes a long time for my brain to process. I have heard a lot of good comments about it. I have only read the first chapter and already have a better understanding of the brain. I'll keep you posted.

Sunday, March 26, 2017

FTD = Frustrating Terminal Disease

I do not understand my brain at all.  This past week, I learned how to video chat and participated in two successful Zoom video chats. Now I might even join my support group's weekly chats. Of course I will have to get up early, do my hair and makeup and put on something pretty... nothing vain about me!

I would be really happy about learning something new, except that this past week I also started struggling with the TV remote control and some things on the computer. My brain retains useless knowledge, yet it can't retain how to use the remote? But then again, by next week I may not be able to remember how to do the Zoom chats either. Have I said lately how much I hate this disease?

I can stand at the stove and create a really delicious meal, but I can't figure out how to set the timer on the microwave to  know when the meal is ready to come out of the oven. I think I have explained before that since FTD, I have been able to create really great meals, but I do it by taste. I cannot follow recipes much at all.

 Now, I wonder if my brain compensated somehow or made a new pathway so that I could create the food by taste. Was it that, or is it just that since I am no longer able to work and am home most of the time, that I do it well now simply because I have the time? It does get a little frustrating when I am thinking of what to cook and I think "Oooh, that chicken I made last week was awesome, maybe I could make  that again. Oops, I wonder what I put in it or what it tasted like?"

I guess I shouldn't be too hard on myself for not figuring it out. If anyone could, we might have a cure or treatment by now.

Another thing that has boggled my mind for quite a while is why do they continue to prescribe the drugs that delay the progression of Alzheimer's Disease for those with FTD when they know that they do not work for FTD? Where I live is not exactly a hub of medical research, far from it, but we do have some good physicians. It upset me tremendously when my husband told me that, a few months ago at a local caregivers' conference, the preeminent  psychiatrist in this area spoke to them. He actually stood there and said "We know the Alzheimer's drugs don't work for FTD, but we use them anyway."

I know I mentioned that in a blog back when it occurred, but there is a reason I am repeating the story. Today, I was chatting online with someone who is a care partner with someone with FTD. The person with FTD was prescribed the Alzheimer's medications and they really hated the side effects and did not feel they were doing any good. They did some research, found out they were contra-indicated for FTD and demanded that they be discontinued. After stopping, there was no progression of symptoms and they were saving a whole lot of money.

I know for myself, when I was still on the Alzheimer's drugs, I would go into the Medicare "donut hole" in just three months each year, meaning we paid out-of-pocket for all my meds the remainder of the year. Fortunately, there are now generics so that, while they are still expensive, it is a little better. I was wondering out loud (or rather typing out loud if that is possible) why they insist on continuing to prescribe the drugs. The woman I was conversing with said something like "Because the doctors are pressured so much by the pharmaceutical companies." Now that was an interesting thought and a quite upsetting one if there is any truth to it.

If I had to guess, I would lean toward thinking that yes, it could be true in many cases. I hope, though, that the rest of the cases are because, first of all, so many doctors have no clue about anything related to FTD. They think "dementia" and think if the drugs work for one disease that causes dementia, it must work for all of them.  The other scenario I thought of was that the strong desire they have to help their patients might just lead them to trying the drugs because there are no alternatives and they are truly hoping that the drugs just might work.

Bottom line is that life with FTD is frustrating. We never know when we will lose the ability to do something we always did without thinking. That includes everything from the remote control to the ability to walk properly. A thought just occurred to me:  FTD = Frustrating Terminal Disease. That says it all.

Sunday, March 19, 2017

Finding Some of the Old Me

https://www.theaftd.org/wp-content/uploads/2016/12/CindyODell-CopingWithFTD-Dec2016.pdf

This link is to the booklet that I have mentioned before. Late last year, I actually had the entire document as a blog entry.  I keep getting comments from people who say it has helped them which thrills me that I can contribute in some way. Because of that, I decided I would include the link to the document the way it was published by the AFTD. It is merely common sense approaches to the myriad of problems FTD brings to us. I have been both caregiver and, now, one with FTD myself. It gives me two ways to view things. If you haven't already seen it, please check it out to see if it can help you at all.

This week, I joined the 21st century. I now have an e tablet. It is pretty amazing and does a whole lot more than my old Nook does. The only problem, now that I own it, is trying to figure out how it works. I just finished downloading the owner's guide from the company's website. 78 pages!!!  No wonder I could not instantly figure it out.

I bought my tablet from a young woman I have become to consider a friend. She is an example of how some of my empathy came through even though it had been missing to a huge extent since early in my disease process. I still don't have the compassion that I used to have and I don't cry at much. Many of us with FTD are reluctant to attend funerals because we know that we might slip out of the proper demeanor. Not only would we not appear sympathetic or empathetic, but it is in the realm of possibility that we could break out in laughter.

Back to my friend. She has had way too many bad times in her life for such a young woman. When I first met her and her husband at the time, I immediately sensed an abusive relationship. Fortunately, she realized she did not deserve being treated that way and she broke free. She now has a new husband and seems much happier. That, in turn, makes me happy as well. The two of them, along with their two children, delivered the tablet to me Friday evening. Our husbands started talking cars, so we had lots of time to catch up and I was able to get to know the kids. I mention her personal story, not just because I admire her for getting out of an abusive relationship, but because it was my empathy toward her that has drawn us together and allowed us to keep up a relationship for a year and a half. Hopefully that will continue for a long time.

We sat and talked, her two children talked and bounced around the room as kids do. Usually, that much activity would have caused me to freak out and either start screaming or run away. I believe my empathy toward her was so strong that I could handle the commotion. I have, before FTD, tried to help abused women in any way I could. It was our common abuse experiences that drew us together.

I am thrilled that my lack of empathy still allowed for us to keep in touch and to get to know each other better. It is heart warming to know that while I tend, since FTD, to be cold and uncaring, enough of the old me still exists in my brain and can find its way past that empathy barrier. No, I am not suggesting that the disease has reversed itself. I know that there is still not much hope for it in my lifetime. It is simply that I am overjoyed that there are still bits of the "real me" with me.

While I was struggling with figuring out this tablet all day yesterday, I realized that if I had asked her 9-year-old son to help, he would have had it whipped into shape in a matter of minutes. Meanwhile, I just printed out a 73-page owner's guide. I hope I can report next week that I figure some of it out. Otherwise, when I see my daughter in May, I will have to beg her to help.

Now, for an update. The Association for FTD conducts a fundraiser during February, its "With Love" campaign. When I read about it in their newsletter, I thought "Hey, I can do this!" because they do all the work, I just needed to contact people. I set my goal at raising $4000 and thanks to the generosity of my family and friends, we did it! Even better, the entire campaign met its entire goal and raised the most money yet. So, to those of my friends and family who read this, I say a huge "THANK YOU!" If I offended any of you with my begging and pleading, I am sorry. But, guess what, you'll hear the same begging and pleading next year!  Thanks again!

Sunday, March 12, 2017

Caregivers Rock (Most of the Time)

I admire every caregiver out there, especially those who are care partners to those with dementia. Of course I most closely relate to those dealing with FTD. I have been in their shoes. I have been in the caregiver role with family members who had FTD before me. Don't ask me which is more difficult. They are both horrible in their own ways.

My husband is my full-time caregiver. My daughter is my rock and keeps me sane. She knows me so well and is able to keep me on an even keel. She does not live with us and I think that is what makes her such a good care partner. We talk at length almost every day. We have done that since she first moved out of state somewhere around ten years ago. The interesting part of this is that when she first moved, it was me needing to stay in touch to make sure she was okay. Now, it is pretty much the opposite. She calls me to make sure that I am okay.

Because she does not see me, in person, more than a few times a year, she is the one that picks up on the differences in me from the prior visits. My husband, who see me constantly, does not always observe the changes because they can develop slowly. She is the one who will tell me when it is time to see the doctor. She and I have an awesome mother/daughter relationship, always have, always will. She is the one who calms me down when I am upset with my FTD symptoms, limitations and frustrations.

She is the one who can translate things between my husband and me. He and I do not always understand each other or speak the same language. He also is not quick to pick up when there are new things I need him to do for me. Of course, I am stubborn enough that I forget to ask him to do these things. She can be blunt and in my face about what I need to do and that I need to allow others to help me. I love this kid and could not survive this FTD journey without her!

Wow! I started this blog entry to talk about caregivers in general. I didn't see it leading into realizing how much I have come to depend on my daughter. It warms my heart that she is always there for me. It breaks my heart that our roles are needing to reverse.

What I started out wanting to talk about was sometimes needing to avoid caregivers. I visit an online support group for both caregivers and those with FTD. There are support groups for each of us alone but sometimes it is quite helpful for exchanges between both sides. When I read the concerns from the caregivers, it helps me realize what my husband is going through. Likewise, many times I am able to give caregivers an outlook from the other side. Having been on both sides, sometimes I am able to give a different prospective.

The bad part about frequenting the site that includes us both is that there is, naturally, a lot of complaining and venting by the caregivers. That is totally understandable and is a healthy thing for them to do. It is vital to be able to bounce things off others in the same boat and often times, it is only those people who can understand what you are going through. For someone with FTD, a lot of those things are downright difficult to hear. After hearing enough about situations involving people with FTD more advanced than my own, it can become quite depressing. To read things that makes it obvious how much the caregiver is resenting, sometimes almost hating, their loved one is heartbreaking. After enough, it leaves me feeling hopeless and depressed.

When this happens, I have to remind myself that I don't have to visit the site every day. I have had to avoid the joint site for as long as a month at a time. I am not blaming the caregivers. Like I said, they need outlets like this, just I rely so much on the online support group for only those with the disease that I visit most often. They have become my family and friends. I often refer to them as my lifeline. There are quite a few on the joint site that I feel I have a relationship with, but it can never be the same.

This week, I have reached that point that tells me to stay off the joint site for a while. When I start feeling like my life is hopeless and sometimes not worth living, I know this is what I need to do. Even though the caregivers come to feel the same way at times, it isn't the same. It seems to work the same way for the caregivers as they are often not receptive to the point of view from people with the disease. When you are not sleeping or having time or energy to live a life of your own, you don't want to hear why or what their loved one is feeling. Fortunately, they have closed support groups that are only for the caregivers as well.

I have, literally, forced my husband to join a local caregivers support group. It is not focused on FTD, but all dementias. Since so many of the frustrations are the same, it should help him. I have to keep reminding him, though, that the group is about him and his frustrations, not about me. It is a safe place where he can vent his feelings. Unfortunately, he is usually the only man attending. No surprise there, most men don't like to share feelings. A friend of ours goes to the monthly meetings with him so he won't feel so alone and she plans on doing this until he becomes comfortable with the group. I wish more men attended as I am sure the male perspective can be quite different.

It is tempting to ask my friend what he has talked about, but I resist. She wouldn't tell me anyway. Now, that is a good friend!


Sunday, March 5, 2017

Brain Strain is a Pain

I swear there is a phenomena with FTD that causes all other illnesses to be worse. I doubt there is any scientific validity to this, but I have experienced it many times. I get a cold, it develops into bronchitis or pneumonia. I have a gout attack, it immobilizes me. I have a headache, it stays for days and feels like the worst migraine ever.

Wait, that last one is true. FTD headaches are the absolute worst and this comes from someone who has suffered from migraines her entire life. I have experienced gout pain for years as well. Those have always been controlled by diet and eating dried cherries which can act as an anti-inflammatory, so no problem. Since FTD, even though my diet is much healthier than it was while I was still employed, I get horrendous gout attacks. Attacks so bad that I had to use crutches and a wheelchair. By the way, I can also attest that it  is difficult for someone with FTD to understand the workings of crutches.

The gout attacks have become frequent and increasingly severe. I also, months ago, experienced a kidney stone that, when analyzed, was caused by excess uric acid. After that really severe case of gout, I agreed to go on uric acid reducing medication. According to my lab reports, it has been effective. According to my foot, not so much.

My theory is fairly simple but is not founded on any medical evidence or research that I have read or heard. I believe that the stress of coping with FTD is an enormous burden on the human body as well as the brain. Because of this constant strain on the brain, I believe there is not enough energy left to fight off these irritating illnesses. The immune system is just over-taxed and can't keep up.

I have steps that I take to help my body deal with the reduced ability to fight things off. I get my vaccines for flu, shingles and pneumonia. I know there is a huge debate out there about the safety of those vaccines. For me, weighing the assistance to fight these diseases far outweighs the perceived risks of the disease. They stopped using live virus for flu vaccines years ago, so you cannot develop the flu from the vaccine. One word of extreme caution:  This is not true of the NASAL vaccine. It IS made from live viruses and should never be taken by the elderly or those with compromised immune systems.

I avoid going out in crowds. I have learned when the grocery store is the least crowded and do my shopping during that time. I avoid movie theatres, malls and any place with large crowds of people. Unfortunately, this includes church as well. I have found that people think they must go to church, even if they are not feeling well. We go to restaurants during off-peak hours. You get the concept, I am sure.

I take echinacea and vitamin C (I use Ester-C, but there are many other brands.) every time I get home from a crowd, a doctor's office or from being exposed to anyone who displays any sign of possible illness. You sniffle in front of me, I take them both to boost my immune system. I am also one of those irritating shoppers who stands at the cart area of the store and clean my cart. Let me apologize here to all the people whose lives I have slowed by 30 seconds. I try to get out of the main traffic patterns, but sometimes you can't. Some times I apologize but, I admit it, most times I do not. I figure if someone gets that angry and upset from losing less than a minute out of their lives, they aren't going to appreciate my apology anyway.

I was prompted to write on this subject today because of something I am experiencing right now. For about 12 years now, I have had macular degeneration in my left eye. It was caused by an unusual disease, histoplasmosis, that in rare cases can spread to the eyes. (Yes, I do seem to be the queen of rare diseases.) Because of this, I have very little vision in my left eye. Yesterday, I realized I am showing the signs of macular degeneration in my remaining good eye. I was never very frightened when this happened in my left eye, probably because I still had one good eye remaining, but I am now!

Now that I am seeing symptoms of macular degeneration in my right eye, I am very frightened. Reading is a cherished enjoyment since FTD has stolen so many others. I have been extremely lucky to still be able to read and understand books. As I have explained many time before, the books cannot be complicated, but reading is still one of my favorite things to do. The thought of losing that ability is downright terrifying to me. There is also the fear of not being able to do much of anything. I also know my husband will dress me funny. This has been a standing family joke for years since he has no fashion sense at all.

To tie this into the beginning of this diatribe... Dealing with the stress and fear of the black spot in the middle of my vision is adding to the strain of FTD. Since discovering the problem, I am stumbling more, stuttering more and my thinking is much fuzzier than usual. It makes sense to me somehow. My brain is trying to deal with the stress and the fear from the eye issue which takes away from its ability to cope with my FTD symptoms.

I guess this all makes me think of that little childhood ditty of "The head bone's connected to the neck bone, neck bone's connected to the back bone....  them crazy bones." Let's start a new one, "The brain is connected to my worry bones, the brain is connected to my gouty bones, the brain is connected to my....  that crazy brain." Nah, doesn't have the same ring to it. I don't think it will catch on, but it does explain some things.

Sunday, February 26, 2017

Snowy Days and Sundays...

Forget the song about rainy days and Mondays. Today I am thinking snowy days and Sundays. But I refuse to let them get me down.

Today, once again, I witnessed a caregiver complaining about their family member craving sweets. She also said she makes sure there are no sweets in the house. I strongly disagree with this tactic. FTD brings so many frustrations and so much discomfort with it that I cannot see intentionally adding to it.

 For most people, FTD brings along with it, an intense need for sweets and carbs. I say intense need, because it is beyond a craving in my opinion. You cannot control the desire and need for sweets without causing a lot of discomfort. One theory behind this is that we crave these high calorie foods, and pack on weight, because we will need the extra weight later on in the disease. Eh, maybe, I guess.

I have hung onto a piece of paper with this info on it for a few months. I apologize that I cannot give the source:

"Neuroscientists have shown, using fMRI to scan the brain‘s activity in real-time, that sugar leads to dopamine release in the nucleus accumbens – an area associated with motivation, novelty, and reward. This is the same brain region implicated in response to cocaine and heroin."

Perhaps this information explains why the craving is so extreme and craving sweets is a whole lot better than craving drugs. The sugar also gives an instant bit of energy. Those with FTD lose so much energy and long for the days, pre-FTD, when we actually had energy to do things. Also, we feel downright crappy quite often. If the sugar consumed does trigger motivation, enjoyment (novelty) and a feeling of pleasure (reward), it makes sense to me that this creates a feeling of need.

One thing I remember learning years ago is that hunger for food and hunger from sex come from the same area of the brain. We already realize that FTD often brings out an increased interest in sex. From these two facts, it is pretty easy to conclude that it is our brain that is screaming for the treats.

What I try to do, and have suggested often to others, is to try to make sure the sweets I am eating have at least a modicum of nutritional value. I love Quaker Dipps. They are granola type bars coated in chocolate and a couple of the flavors, caramel nut and peanut butter, taste like a good candy bar to me. I realize the nutritional value is small, but there are some oats in there and a tiny bit of nuts. A small amount is better than none. I try to eat dark chocolate when I am craving chocolate.

I also try to make my own snacks as often as I have a clear-headed day with a little extra energy. I make a few different kinds of cookies that are mostly ground oats. I have also had some success with sneaking in a little powdered dry milk without ruining the recipe results, the same with peanut butter or adding some nuts or dried fruit. I use natural peanut butter instead of the more processed kinds. 

Many people use low fat yogurt as a sweet snack, but I am not a yogurt lover. I barely tolerate it. I do like cottage cheese with some canned fruit over it. Even some peanut butter and crackers will do it for me sometimes.

I try to make sure my sweets have some nutritional value. Other times, the need is so strong, I will eat anything to satisfy the need.

I strongly believe that the caregivers who think, by depriving the sweets and carbs, that they are helping and doing good for their loved one, are wrong. Being deprived of the sweets and carbs that we crave increases our frustration, irritability and stress. It takes away one of our last sources of pleasure. I think it comes close to cruel and unusual punishment. 

One final point, one that is totally "in your face," FTD is going to kill us. We don't have much life expectancy left. The pleasures we still have in our lives are few. Why should we be denied one of the very few things that give us pleasure?

Okay, I am done with this rant. Time to go have a sweet carb or two, then settle in with a glass of wine and watch it snow!






Sunday, February 19, 2017

Why Do I Feel So Crappy?

I have been feeling downright crappy the past few days. No illness to put my finger on, just a normal FTD headache that I can't stop with my normal self-help of caffeine and reiki. Even sticking my head under really hot water isn't helping. I know this sounds backward. Most headaches respond better to putting cold on your head to dilate the blood vessels. My FTD headaches actually worsen with cold. I always did have to be different. I don't believe it is the headache that is making me feel crappy, it is the other way around. Feeling crappy has given me the headache.

It isn't the weather that is affecting me. It is mid-February and I live in central Pennsylvania. Not only is it not snowing, it is sunny and almost 70 degrees and days like this one are a true and unexpected gift. Yet, I am grumpy and feeling angry at everything and everyone and every little ache and pain seems magnified. I don't envy my husband at all. I can't even stand to be around me.

This brings me to the question: Which is worse, having FTD yourself or caring for someone who has it? My answer varies from day to day. Today, I would say my husband has the wrong end of the deal. Other days, it is me.

I have lived this disease from both sides, as a care partner and as the one with FTD. Trust me, they both just plain suck sometimes! The frustrations of being the caregiver can be extreme. You are watching someone you care about struggle to live a good life while dealing with the effects of the disease. Some days, I visualize myself as going through life with a 20 lb. ball attached to each ankle. This extra struggle makes everything difficult. The caregiver is there, willing to take some of the burden of the weight. The problem then becomes that they are carrying around their share of the extra burden while trying to deal with everything else in life.

Often times, the caregiver is still employed full time since loss of employment is the norm, rather that the exception, for the one with FTD. They also have to take on all the responsibilities like taking care of the finances, the pets, the kids, household repairs, car maintenance, shopping, cooking, laundry, house cleaning and on and on. These tasks used to be divided up and yet could still be overwhelming at times. Now though, it is all on the caregiver.  All this on top of trying to ease the burden on the person for whom they are caring. When do you sleep? How can you maintain a healthy diet? Being the caregiver is not an easy life.

We are a little better off than many dealing with the issues of FTD. My husband retired early before we realized there was something wrong with me. Of course, it wasn't long until I was "retired" or "fired" depending on which way you look at it. He had already taken on some of the household chores, including laundry, and I was still able to cook and care for the house. Now that even those tasks are becoming quite challenging for me, it keeps getting more difficult.

It is a dirty trick how FTD seems to make many, if not all, of us very quick to anger and quick to become frustrated. I can still dress myself, but putting my jacket on and taking it off has become difficult. The zipper and sleeves of my jacket seems to be defective. The zipper just won't put itself together and pull itself up. I have to struggle to see the two sides of the zipper (not easy with the double vision FTD has given me) and figure out how they can possibly fit together. Then, the armholes always seem to move and hide so that my arms can't figure out how to get into them.  My husband is always right there to help but, after struggling, I am so angry and frustrated that it is too late for me to accept it. Not being able to be self sufficient enough to do simple things is a horrible feeling. As a result, I go out with an unzipped jacket more often that I should.

Realistically, I do understand that I should ask for help ahead of time or explain to him that I need him to help me with tasks that are challenging me each time before I get myself so tied up in knots. To me, that is a horrible option and would be like admitting I am useless. Don't say it. I know it doesn't make me useless, but trying to stop those feelings is like trying to stop a freight train with my bare hands.

This is just one of the stupid things that happen throughout the day that leave me angry and frustrated. It is so difficult to explain to anyone how often things like this happen throughout each day. Once I have a day containing enough situations like this, I am done. I am exhausted from the anger and frustration and so sad that this is how it is forever going to be, that it will only get worse.

Even when I have good days, like last weekend when I successfully made Valentine's cookies, until I realize how worn out I am from struggling with even a successful task.

Anyway, this has been a long and round-about way of explaining why some days I feel so crappy when there is no reason that I can identify. During days like this, I have to just keep plugging away and stay away from people so I don't lash out at them. Now, everyone who knows me well enough is going to say i is okay and that they are willing to take the chance and would just shake off the abuse if I do blow up. If only it were that simple. Can you imagine how frustrated and angry with myself I am after I do lash out at people who love me? I can't take the risk.

I think it is a pile up of these kind of things that is making me feel crappy, not a pending illness. Fortunately, it will disappear as quickly as it came on. It just takes longer!

Sunday, February 12, 2017

Making Time for Love

This week, it is Valentine's Day and way past time to defend my husband. I have spent a lot of time and energy complaining about him and his lack of understanding of FTD. He still does not have a total grasp of the disease and I truly sense how much he is trying to understand. He also has more patience with me than I should ever expect. Plus, I must keep reminding myself that it is pretty much impossible for someone without the disease to understand what an FTD life is like. On the other hand, it is often difficult for me to remember what it is like for him, to live with someone who has it. I have experienced that with family members, but it doesn't seem to translate into my own situation.

The lack of patience and impulse control that FTD brought to me fairly early in the progression of the disease causes a myriad of problems. It has put me into some pretty dangerous situations. In addition to that risk, the lack of patience and impulse controls makes it so that when I am displeased or frustrated by something, I often lash out. It is not a pretty situation as I can be downright nasty. This happens when I am stressed because I cannot do something I used to be able to do. It also happens when someone, usually my husband, does not understand the concept of "one thing at a time." It becomes worse in a noisy or crowded environment because, in those, there isn't even room for one thing. The noise and crowd fully take up the one thing. I know, by now you are probably saying "Yeah, Cindy, we get this!"

A couple weeks ago, I wrote a blog entry that included learning to try to keep it positive. I did what I said I would and posted notes in a few places that I am most likely to see them. It's simple, just a plus sign on a yellow post-it note. I have one on the wall next to where I get out of bed. I focus on that each  morning and remind myself what it means. That move is finally paying off. I see one of those notes when I start losing it, I take a deep breath first. That, just in itself, is often enough to prevent a blow up. More often, it just reduces the volume and degree of the outburst.

Afterward, when we are both calm, I ask him if I can explain what happened. I explain how many things were involved in what I was doing and what that one extra thing was that set me off. A sincere apology is usually in there somewhere, most often both ways. We have set up some strategies for dealing with the overload.

I have suggested that when I am doing something and he needs my input or participation in something else, he lightly touch me on the shoulder. Then I can say "not now" or, if convenient, stop what I am doing and listen. This is working, partly because it gives him a second to question whether it is important enough to interupt what I am doing. This doesn't always work, but it is getting better. If it doesn't work, it is at least much easier to discuss it later when things are calm.

I also asked him to not stand behind me or to walk up to me from behind. FTD, along with my lifetime eye health issues, has stolen my peripheral vision. Because of this, he often startles me when I am focusing on something. It has seemed particularly dangerous when it happens while I am cooking. So he now approaches me head on or from the side. If he cannot, he will say "Behind you!" This is making a positive difference as well.

He may not always understand my outbursts, but he has always been extremely forgiving of me when I do lash out. Now, he is also more willing and open to discussing it later so he can understand. He is also better understanding for my need of a few hours of 'chill' time each evening. This is when I go into my room, in the dark and quiet when I try to read or just sit and ponder.

For the past couple months, he has been attending a local caregivers' support group. Perhaps some of the improvement is from that, just by listening and knowing others are going through the same things. I do, though, credit my new positive attitude for part of the difference. I hope it is making a positive difference for him as well.

Now, for the Valentine's Day part.  It is pretty darned difficult to maintain a romantic relationship when one has the disease and the other is the caregiver. My husband has always been a hugger and a snuggler with me. Since FTD, I have not wanted that, especially after a frustrating day. I made myself to start accepting and enjoying those hugs. Now I cherish them as I did before FTD. It's amazing what a difference it makes to me and, I hope, to him as well. I still cannot accept hugs when I am struggling to deal with something. With the sensory overload that comes along with the struggles, the sense of touch is way too much right then and makes the situation worse for me. Plus, to him, at those times he must feel like, on top of lashing out, I am rejecting him and that is not healthy in a marriage.

Accepting those hugs didn't feel right to me at first, the ones in the morning were easier but, after a day of dealing with the frustration and anger than FTD brings, the evening ones were pretty tough some days. It did not take long, though, to cherish the hugs and the time it gives us to reconnect. It is important for us to stay close and remind ourselves how much we love each other if we are going to walk this journey together.

All that is left to say is, "Mike Odell, I love you!" 😍





Saturday, February 4, 2017

Sweet and Sour Notes

Last week, I wrote about changes in my taste for different foods as well as my craving for sweets. The subject of craving sweets came up again this week in a discussion on one of the online support groups. Many of us with FTD have an intense craving for sweets and carbohydrates. This, fortunately, often comes and goes at different intensities but lately, for me, has been really intense. I say an intense craving and that is what it is, intense. It's not like "Gee, that sounds good. I'd better not though." It is strong enough that I become extremely anxious if I do not give it to it.

I do try to resist as often as I can. When I cannot resist, I try to only eat sweets that have at least some nutritional value. This can come through whole grains, nuts, peanut butter or raisins. There are more, but you get the idea. If I am going to eat too many calories, I want it to be a tiny bit good for me.

I eat granola bars in the late afternoon so that I don't start eating everything in the house while I wait for dinner. I am not here to endorse products, but one I love is Quaker Dipps. They are covered in dark chocolate and contain some whole grain. Different flavors contain nuts or peanut butter or raisins. To me, they taste like a candy bar and they trick my mind into thinking that I have eaten something really indulgent. Yes, I do know that the nutritional value is quite small, but since I am going to eat something sweet and starchy anyway, any value is better than totally empty calories. With the whole grains, it gives me a bit of a full feeling. My husband keeps several candy dishes here at home with different chocolate candies. By eating my sweets in the way I choose, I am actually able to resist all the candy dishes. I probably haven't opened one of them in 3 months.

I have a couple favorite recipes that I use to make homemade treats. I got this recipe 30 years ago when my daughter was taking a children's cooking class at the YMCA. They are so easy, yummy and have the nutritional value of the all natural peanut butter and the milk powder. Some even believe that dark chocolate provides some value. Surely all that offsets all the sugar? Just a little?
   
     Quick Energy Pick-Ups

1 cup powdered (confectioners) sugar
1 cup all natural peanut butter
1/2 cup instant powdered milk
1 cup mini semi-sweet chocolate chips
3 Tablespoons of water

3 or 4 graham crackers, crushed

Reserve the graham crumbs and mix all other ingredients together. Roll into balls and roll in the crumbs.  Refrigerate for at least 20 minutes. That's it... easy, peasy.

I have others as well, but you can find your own favorites. I choose ones that are easy enough to make for someone with FTD and with the fewest artificial ingredients.

Don't let me kid you though. I still get cravings. Yesterday, my husband bought me a bag of an Easter candy that I love, marshmallow chicks and rabbits. I don't know why I like them, they taste like those circus peanut candies that are clearly bad for you. It is 24 hours later and the entire bag is gone. I didn't eat them all though, he ate three or four of them. There's probably only 30 or 40 in the bag. He had actually bought three bags and I begged him to hide the other two. I sure hope he hid them well!

On a more sour note, this past week I heard of a few instances of individuals with FTD being disrespected. It hurts when it happens to me and infuriates me when I hear of it happening to others. I swear we should wear a badge around our necks that says "Yes, I do have dementia, I am not stupid and I CAN hear you!" I know I will be experiencing this next week when I attend a luncheon with a group of women from church.  My friend who talked me into going keeps telling me to just don't let it get to me, it's their problem, not mine. Yep, that's true, but extremely difficult to do. There will be some who ignore me, some who cast sideways glances and those who mean well, but will say things like "You look great, just like you always did, are you sure you have dementia?"

I have actually offered to do a short presentation, at one of our meetings, about the differences between Alzheimer's and other dementias. That offer was never even acknowledged much less accepted. It is difficult to spread the word about FTD when people refuse to listen or to learn that it exists. That doesn't stop me though. I will continue to spread the word wherever, whenever and as often as possible. I have a bully pulpit I carry along with me!



Saturday, January 28, 2017

Changes In Taste

Earlier today, someone posted something on one of my online support groups that jumped out at me. He was saying that everything tasted salty to him and was wondering if anyone was having the same experience. My answer? Yes, but never gave a thought that it could be FTD.

The day after New Year's Day, I made ham broth by simmering the bone for several hours. I added a bunch of diced up ham, then froze the broth so I could use it once I wasn't tired of the ham. Earlier this week, I pulled the container out of the freezer and popped it into a soup kettle. I made ham pot pie, lots of it. If you aren't Amish or familiar with their cooking, ham pot pie in this area is basically ham broth and ham with potatoes and pot pie noodles (large square ones). I have always loved it so I was looking forward to it. Once it was ready, I tasted it and it was like licking a salt lick. I had my husband taste it and he said it might be a bit salty, but not much. I dismissed his opinion, because 'he can't taste anything anyway', and threw out the whole 4 quarts.

When my friend posted the question about salty tastes, I thought perhaps I should have believed my husband. I now think that I was simply tasting the inherit salt from the ham in the broth and my sense of taste was bad, not his. I had not added any salt to the broth since it gets plenty from the ham bone and it had not been a very salty tasting ham. What a waste!

Last evening, we were both tired and dinner time was running late. We ended up having fried egg sandwiches.  I normally use just a tiny bit of salt on my fried eggs, but a ton of pepper.  When I was eating mine, I kept thinking that I  had over-salted my egg because I was tasting the salt, even over the taste of all the pepper. Now, I think back and remember many instances of turning down a salty food like chips. They just don't taste very good to me anymore.

I have gone through several other changes in eating. For about three months I craved Chips Ahoy Candy Burst chocolate chip cookies. Unusual for me because I have never liked pre-packaged cookies at all. I was going through an entire package in one week then, suddenly, didn't want them anymore. I found them dry and tasteless... from one extreme to the other.

I have always loved Italian food. Now I almost detest red sauce, even on a pizza. I made a small pan of lasagna last week. Usually, that is two meals for us. Right now, half of it is still sitting in the refrigerator waiting for me to toss it. Any Italian food that does not include red sauce, I still love.

I have written before about how most people with FTD crave sweets and carbs even if it was something they never craved before. There is no doubt about that. I hadn't added sweetener to a cup of tea since I was a kid. Since FTD, I want it sweet, almost as sweet as southern sweet tea which I used to abhor. I get migraines from any artificial sweetener so my evening cup of tea is just empty calories... but at least it still tastes good.

It has become more and more difficult for me to decide what to fix for dinner. I will go through all the possibilities and nothing will appeal to me. I do have trouble making decisions since being diagnosed with FTD, but it has been getting ridiculous. Now, I am thinking it is because the foods I normally have in the house are ones that I used to like but no longer appeal to me. How do you shop for groceries when you have no idea what you will be willing to eat for a week's time? How do caregivers deal with such changes in taste. It must be frustrating to keep someone with FTD fed when their taste changes so dramatically.

Anyway, when my friend wrote the question about salt, I felt relieved. Now, I can convince myself that all my strange food cravings and avoidance is related to FTD and not just getting cranky (crankier...) now that I turned 64.  [Imagine Beatles music here...] "Will you still need me, will you still feed me, when I'm 64?" It just might be a challenge!


Wednesday, January 18, 2017

Keeping It Positive

I do realize that it is more than half way through January. I have, however,  decided that I need to make a New Year's resolution. I must resolve to do my best to remain positive.

This thought hit me in the face today while scrolling through Facebook. I swear every other post was something negative, mostly about politics. I had already convinced myself that it was way past time for us all to come together no matter which side of the aisle anyone leans toward. Our nation can accomplish much more by working side by side and supporting each other rather than wasting time tearing each other down. I saw, on a friend's post, someone wrote "I am remaining positive in 2017, I am remaining..." Then I saw him posting it again and again. It may as well have slapped me upside the head. I think I will respond with something similar from now on in an attempt to get across the message that we must stand united or our enemies will see us as weak and we will get nothing accomplished.

That is way too much politics to worry about in this blog, but I needed to set the stage. I have been depressed lately and I do believe a big part of it is reading all the political haggling. I am going to attempt to avoid as much as I can while still staying informed.

I must also remain positive about my life with FTD. I need more "I will try that and see if I can," instead of "Forget it, there is no way I can do that!  I must realize a cure will be found. It may come too late to help me, but it will be in time for future generations. This is important to me because my FTD is familial and I worry so much about the next generation, my cousins and my niece. I must remain positive that a cure will be found before any of them are affected.

I believe strongly in research and believe it is my responsibility to participate as much as I can to help. I participated in a study for several years and was recently invited to participate in another. Unfortunately, since the closest research center for the study is a five hour drive, I have not agreed to do it. My husband is not comfortable driving that distance anymore. In order to remain positive, I must accept his limitations as well as my own. If I don't, we will always be working at cross purposes and I will never be in a positive frame of mind.

I think it is a very thin line between worrying about the FTD symptoms, that will most likely develop, and being prepared for the possibilities. I must find a way to make changes to our home to make it safer for someone with FTD, yet not allow the necessity of the changes to spiral me down into depression.

A big thing that frustrates me, along with just about everyone who is diagnosed with FTD, is people's ignorance of the disease. This ignorance leads to their dismissal of my symptoms and limitations. In addition to this lack of knowledge, there are many others who are knowledgeable about the disease but refuse to believe that I will ever "get that bad." I guess there is an even finer line between non-acceptance and keeping on with life despite the disease.

Last week, a repairman was in our home. He looked down at the crossword puzzle that I was doing and actually said "Don't you have anything better to do?" This man had been in our home once before about six years ago. He did not know me well enough to say this, even if he was joking. I defended myself by saying that I have a brain disease and that it was actually good for me to do. Not only did I feel it was necessary to defend myself, but I was down in the dumps about it for more than a day. I need to become strong enough to not allow other's ignorance or rudeness affect me.

It is okay to be frustrated and slightly fearful. I think it might be possible to have those feelings while convincing myself to maintain a positive attitude. I also need to remind myself that I always tend to become depressed after the excitement of the Christmas holidays. These post-holiday blues tend to linger until the days start getting longer.

I am already counting down until it is time for the Association for FTD's annual spring conference which I will be attending again this year. Perhaps I should add a count down until spring. In the meantime, I will keep giving myself pep talks and kicking myself in the butt as necessary.

I will be putting up post it notes around the house to remind me to be positive. I am sure I will need a lot of reminders, but I can do this!


Saturday, January 7, 2017

Reminders for Caregivers

It has been a while since I wrote a blog entry aimed more at the caregivers. This past week, several things have happened that triggered the feeling that I have been over this before, so why does it keep happening?

The first big one is that those of us with FTD do not deliberately do things to drive the caregivers or others out of their minds. It might seem that way, but a lot of the things we do are not done intentionally. This occurs more and more as the disease progresses. For instance, if the one with FTD repeatedly asks "When is dinner"? While this can be extremely frustrating to the one being asked, it is most likely not deliberate. They actually do not remember that they had asked three minutes ago or elsed remember they asked, but cannot remember the answer you gave.

If the one with FTD has just eaten breakfast and had a cup of coffee and fifteen minutes later wants a cup of coffee, it is most likely they don't remember drinking the coffee or are actually thirsty. My immediate reaction is, give them another cup of coffee. If too much regular coffee makes them jittery or something, switch to decaf, make their coffee weaker than you normally make it or make it half a cup of coffee and half a cup of water. You could also try a substitute like "How about a big glass of ice water, would that work?" If they are asking for breakfast, they most likely don't remember eating it or are having cravings which are common with FTD. Some days you would need to hide all the sweet or carb-loaded foods from me, because if I see it, I will eat it.  Try a strategy such as, "Yes, we just had breakfast, how about we go and do this and then it will be time to eat again." or "You already ate breakfast, how about eating this banana to tide you over till lunch."

You get the idea. Truly, it is not limited to eating. We don't urinate into the closet intentionally, we don't smear poop around the bathroom intentionally, we don't pace around the house intentionally. Why does someone with FTD do these things? Who knows? It makes sense to them at the time, but if you ask them why, they probably will have no clue. Fighting the repeated action will only lead to frustration for the caregiver and the one you are caring for.

Another issue that I cannot stress enough is the "one thing at a time" principal. If the one with FTD is doing something, this is not the time to ask a question. You will most likely get a blank stare, a snippy response or both. When someone asks me a question while I am doing something, it wipes both of them out of my mind. I will be totally confused, probably a blank stare on my face, and shake my head. I wouldn't be ignoring you, it's just that I heard "wah, wah, wah, wah" like the talk on a Charlie Brown television show. It works better if you say, "may I interupt you for a second" then make sure I am looking at you and engaged. Then ask the question.

In the same vein, do not expect me to do a task that involves multiple steps. Perhaps try to ask me to do one step at a time or help me come up with a way to remember all the steps. Perhaps you could write a brief list, then suggest I cross off each step as I do it. If I am folding some laundry, don't ask me what if I want spaghetti for dinner. You will get the same blank stare I talked about before. It is just too overwhelming. I like to describe it as my brain going into a spin and nothing clicks into place. I, literally, can no longer focus on anything.

If I ask a question, give me just the bit of information I am needing. If I ask you "What time is it?" please do not answer with something like "It's 3:30, don't you remember you just watched Judge Judy? She is always on at 3:00." You may as well tell me "Okay, Cindy's brain, start spinning." Then two minutes later, I will probably ask you what time it is again because I got nothing out of your answer. If you say that it is 3:30, leave it at that. I may still forget and ask you again, but maybe it will take 5 minutes instead of 2, but if we're lucky, it will sink in and stay for a while.

This is such a difficult concept for many caregivers to grasp because it doesn't make sense to them. To a normal brain, that wasn't two things, you were just answering the question and making it a little clearer. In a brain that is being attacked by FTD, it cannot work that way. Brain cells are being attacked and killed off constantly and once gone, they never come back.

I remind myself every day to be thankful for the things I can still do, not worry about the ones that I cannot. For instance, I am thankful every day that I can still read. I may be reading books that are probably on an 8th or 9th grade level, but I am still reading and that is something to be thankful for. I am able, in the evening, to go into my darkened and quiet bedroom and read for a couple hours. It calms me enough that I am able to sleep.  On the other hand, if I tried to read a book like I used to read, one that actually takes a brain that still works like mine used to, I would become more agitated and frustrated and would have great difficulty going to sleep. Would I be embarrassed if those who don't know me well realized the kind of books I am reading? Yes, I would be absolutely horrified because above all, I need to retain my dignity.

That leads to a final thought. Please, please, please never say to someone "Oh, s/he has dementia, s/he is too stupid to understand that" or  bump the person with FTD aside and say "You can't do that." You can say, "S/he may have difficulty with that could you explain it again?" or for the second example, "I can help you do that if you would like." Yes, doing it the first way would probably save you some time, but not reacting like that probably saves your loved one some dignity.

Also, a reminder that caregivers may get some benefit and understanding by reading my publication "Coping With FTD" that can be found in my blog entry dated Nov. 12 of 2016.


Saturday, December 31, 2016

Post Holiday Blues

It is obvious that it can be difficult to celebrate holidays and birthdays when you know you have an incurable disease. Sometimes you just don't feel well enough or don't have the necessary energy to prepare for or even enjoy the celebrations.

At one time, I had a fascinating and fun job working in the newsroom of a fairly large newspaper. One of my responsibilities was to edit all the obituaries. I was shocked during the weeks after Christmas and New Year's by the much larger than normal number of obits.  One of the funeral directors explained to me that many people struggling with a life-threatening illness are desperate to make it through a special event. It can be the holidays, a wedding, graduation, anniversary or anything meaningful to them. They rally all their energy to make it through but when the event is over, that extra bit of energy goes with it and they surrender to the illness. If you let it, it can make you feel pretty sad. On the other hand, they had that last celebration, most likely with family and friends and that is a good thing.

For someone with a chronic or incurable disease, the holidays and special occasions can be exhausting and sometimes depressing. For myself, I miss the big family gatherings and the satisfaction of making every one's celebration perfect. I used to put a huge amount of effort into making every holiday or special occasion perfect for everyone. I loved doing it. I loved the smiles and laughter and I found great joy in getting down on the floor and playing with the kids.

Now, though, with limited energy, limited ability to be among others and general limitations of FTD, the celebrations can become painful. For most people diagnosed with FTD, one of the worst symptoms can be the loss of executive functioning. This makes it nearly impossible to focus on more than one thing at a time. When you add in the voices, music and activity going on around you, it can quickly lead to a meltdown which can ruin the day to those of us with FTD, as well as everyone else around us. The fear of doing this puts even more strain on me.

I did a pretty good job (patting myself on the back now) preparing for the holidays. I successfully cut back on things that we really didn't need for our celebrations and actually asked for help once in a while. I made it through Christmas, proud of myself for making it special for family and friends while holding myself together... mostly anyway. There were a couple meltdowns but not when many people were around, only those who understand what is happening.

Now, I am battling the "post-Christmas blues" and am melting down more often than usual. I am having more trouble speaking and am experiencing way too much anxiety. I miss having my daughter and my 'grandkitties' here for the week most of all. There are no more preparations to be made to use up any of the anxiety. I am left with a feeling of "Okay, what now?" Unfortunately, the only answer that pops up is to take down all the decorations and pack them away to hopefully use again.

Packing away all the decorations has always been kind of sad. Instead of the feeling of the holidays are coming, it is the holidays are gone, it's Winter, so now what? The house always looks so empty and sad once the decorations are gone. I will force myself to do it. I will do it over a period of a few days like I did for putting them up, but I can not think of a way to make it anything more than a chore.

Quite honestly, I didn't find anyway to avoid the question "Will this be my last Christmas?" I really don't think so because my case of FTD seems to be progressing slower than some, but none of us knows for sure. It can also start progressing more quickly whenever it wants.

On top of the post-holiday blues, the same thing is happening now because my birthday is less than two weeks away. I will only be turning 64 and can't stop myself from feeling just a little sorry for myself. I seems unfair that at this young of an age, I am dealing with this horrid disease instead of preparing to retire, travel and have fun. When I am already feeling down, it makes it easier to sit here and feel sorry for myself.

I will get through it, I always have before and I refuse to allow FTD to win this time around. My mother and I had a thing for when we were feeling sorry for ourself. It was usually after a romantic breakup or being hurt by a friend. We were only allowed one day to feel sorry for ourselves. We could wallow in self-pity, cry as much as we needed and curse at the world if need be. The next day, though, we had to be strong enough to put it behind us. It worked for us believe it or not. So, I am thinking that this is a tough one, so I will allow myself one week to feel blue. By next weekend, I will be strong enough to put it behind me. Party anyone? Oh, but remember, it must be a small and quiet party!

Thursday, December 29, 2016

The Best Christmas Gift Ever

I blogged yesterday about some of the trials and tribulations of Christmas. Today, I am writing about an excellent idea for those of us with FTD that became my best gift ever.

I mentioned a couple blog entries ago about a special gift I had made for my daughter that I was giving to her for Christmas. I made a cookbook of all our favorite and family recipes. I used a free software app that did all the layout and such.  I only had to type in the ingredients, the directions and any personal stories about the recipe that I thought should be preserved. The software created the cookbook, separated the recipes by category, alphabetized them and created an index. I was able to choose the design, name the book and just personalize it.

It was easy, but still took a while for me to do. I worked on it for about nine months. Obviously I didn't work on it straight through, just a few recipes at a time so that I didn't get overwhelmed. It wasn't difficult at all, but I have trouble focusing on something for any significant length of time. I finally finished it a couple weeks before Christmas, then purchased a nice binder and page protectors. The binder had a clear pocket on the front for the front cover sheet. It turned out beautifully.

I also copied a couple pages out of my go-to cookbooks, such as a roasting guide. This is in the original cookbook I received when I got married 44 years ago and I still turn to every time I want to roast anything. The software also added helpful pages such as emergency substitutions, equivalent measurements, etc.

I presented this gift to my daughter on Christmas Eve during a time when it was just the two of us. It was such a personal gift that I just wanted it to be a personal moment. It was more than I could have every hoped for and worth every bit of time spent. She loved it every bit as much as I did!

I wanted to write about this in a separate entry because I think it is an idea that others might want to do. It could be someone like me, with FTD, or the opposite. A family member could work with the person with FTD to preserve these recipes and memories for themselves and other family members. I have heard from quite a few people who were regretful that their loved one's recipes were gone forever.

The software also allows you to include pictures of either the recipe or someone or something that pertains to the recipe. I did not do this because I was intimidated by the process of downloading or uploading the pictures. The idea of preparing all the recipes to take a picture of each was out of the question as well.

My sister saw the book as I was putting it together and now she has a copy as well. I just think it is a wonderful idea for anyone to do. I know how many old family recipes that have disappeared from my grandmothers, so I didn't want it to happen for my daughter.

I will give the web address for the site in a minute. I did end up having to pay a small price for the software. I believe it was when I hit 70 recipes, I was blocked from adding more. I was trying to figure out a way around it (creating more than one book, then putting them both in the same binder) but when I realized how little the cost was, I went ahead and paid. They also are in the business of printing cookbooks, so they offer to print them for you at a price. Obviously, you would end up with a professional looking book. I was, however, more than happy with the print it yourself for free option, especially since I don't have a large family and only planned on one copy.   http://www.familycookbookproject.com/
This ended up being one of the, if not the, best gift ever and I wasn't even the one getting the gift. I take that back. My daughter's love and appreciation of her cookbook was the best gift I could ever receive.

Another idea I have heard of for preserving memories is to actually write down all those wonderful family stories and memories. There are books you can purchase for this purpose. After it was suggested to me, I checked them out, but the project was too overwhelming for me to attempt. I think, though, it would be a great project for the one with FTD to do with a partner who could help remember and to write it all down, either in a book or on the computer.


Wednesday, December 28, 2016

Christmas Lessons

The Christmas holiday is officially over. It ended for me when my daughter left our house, along with her cats, to return to her home several states away. Before the holiday, I was so excited that she would be here for a full seven days. I didn't even lose one of those days to her travel time. It just seemed like it was going to be a wonderfully long visit and I had been looking forward to it for months.

Who knew that seven days could fly by so quickly? We accomplished a lot while she was here. We visited several groups of family along with a few longtime friends. My daughter was able to meet the granddaughter of my really good friend and I think they will now be forever friends. They have so many common interests and that is why my friend and I planned on the four of us getting together.

My "grandkitties" finally, after several years, seem to have accepted me and I got a lot of cuddle time. I very much miss having a cat in our household. Our cats brought me so much comfort over the years, but I blame myself for the death of our last cat, myself and my FTD. Without FTD, I firmly believe I would have noticed that he was not well much sooner than we did. He still might not have survived, but I refuse to take the chance. So that kitty-cuddling was priceless.

Our wedding anniversary happens to be two days before Christmas. 44 years together is quite an accomplishment. I often wonder how anyone could put up with either one of us for that long. Certainly, we had planned a celebration. It was just to be a quiet family dinner, just the three of us, at a relatively quiet restaurant, perfect for someone with FTD.

Unfortunately, when it came time to leave for the restaurant, my daughter offered to drive. She is a great driver, always has been (knock on wood here), as well as a safe driver. My husband freaked, no other way to put it. Of course he would drive. He is the father, he must drive. He used to drive race cars so he must be the best driver ever.  This experience should be taken as "used to drive" as his driving is not the same as it used to be. The debate went on and on until our daughter felt totally disrespected. I still don't know the exact words that were exchanged but I took our daughter aside and asked her to please let him drive.

The drive to the restaurant was undeniably the quietest ride ever. When we got out of the car, our daughter confronted her father and told him that she felt totally disrespected and that she felt it was unacceptable. I was crying but managed to pull myself together to go into the restaurant. When we arrived at our table, they were still arguing and I had a meltdown. I got back up and walked out, telling them I was leaving and that they could leave with me or give me the car keys and I would wait for them in the car. Of course they came with me, and we celebrated our anniversary with me crying and with us eating fried egg sandwiches.  I was so afraid that she would pack up her stuff and leave. I would not have blamed her a bit and she told me later that she was ready to but realized it would break my heart.

The next day, Christmas Eve, she left for a couple hours and I thought she had left for good and the tears started again in earnest, leading to another, even worse, meltdown. Finally, when I saw the cats were still here, I knew she would be back and she was. The two of us went out for lunch to unwind.

I relay this story, not for you to think either my daughter or husband are nasty my holiday was ruined, because neither of those things is true at all. It only impacted about twelve hours out of our visit. I tell the story to point out some lessons about FTD.

Caregivers must bear in mind, as I keep saying, that those of us with FTD cannot handle stressful situations, conflict and sensory overload. Believe me, those twelve hours intensely involved all of those. A couple things that could have helped: Obviously, if one of them would have swallowed their pride and immediately given in to the driving controversy then waited to discuss it later, that would have eased the tension and eliminated the blow up, or at least postponed it. Also, if they both stopped to realize the effects it was having on me, not just because they were arguing, but because of how FTD makes me react to the situation, they may have backed off.

Caregivers must also bear in mind that someone with FTD is not necessarily able to smooth things over. I have always been the peace maker, beginning as a young child. I grew up in an unstable home and was always being the peacemaker, even to the extent of taking the blame for others to make things easier for everyone else. I have continued through my entire life as the peace maker, so I tried to smooth things over between them. Before FTD, I probably could have. Now, with FTD, I cannot think of the words to say nor speak them without stuttering before each word when I do think of what to say. Now, with FTD, trying to keep everyone happy merely leads to a meltdown not to a peaceful solution.

One thing I learned this holiday, is that making things simpler can be a good thing. I have struggled the past few years trying to recreate our usual Christmas feast. I eliminated a couple dishes and actually allowed my daughter to help. I don't usually work well with others because I have always believed that I must do it all, and do it perfectly. Allowing her to help made for much quality time working together in the kitchen. Admitting to myself that FTD limits my abilities is a hard thing for me, but I actually did it! What's more, no one seemed to miss anything and still enjoyed the smaller feast!

I know this blog is getting lengthy, but I must share something wonderful that happened.

When I started preparing for my pre-holiday cookie baking spree, I realized that I wasn't going to be able to bake as many types or quantities as usual. I felt bad about this because sharing my cookies with everyone has always brought me much joy. I posted about this on Facebook a week or so before Christmas. Low and behold, on Christmas Eve, the doorbell rang and I opened the door to find a friend holding a big tray of cookies for me. I don't know how she knew my favorites, but they were on there.

I learned that it is okay to start handing the reins over to someone else and to begin accepting assistance in doing things. That is a good thing!

Sunday, December 18, 2016

A Day Off, Is It a Good Thing?

I forced myself to take a "day off" today. No working, except to fix an easy dinner. I have been overdoing it, trying to make everyone's Christmas perfect. Now that I have slowed down and am actually taking deep breaths, a lot of things have occurred to me.

I work way too hard at trying to make everyone's Christmas perfect. Decorate the house perfectly. Make everyone's favorite cookies. Shop for the perfect gifts for everyone. Clean the house until it sparkles. (Okay, I may fail on that one, but at least I try!) Wrap the gifts perfectly. Write the perfect notes in everyone's Christmas card, even if it's not very legible anymore. Plan the best meals for the entire week.

Today I started wondering, "Who works at making MY Christmas perfect?" Uh, let me see... The only one who comes close would be my daughter. She is the one who tells me that I can wait to do cookies until she gets here and can help. I don't do that, because I only get her for a week and would rather do other things. She is the one who tells me to stop worrying about cleaning, that it's just her and if anyone else who visits seems worried about it, I should hand them a dust cloth. I kind of listened on that one. I cleaned the kitchen floor yesterday after finishing the last cookies and will do a quick dusting tomorrow. She is also the one who will notice when I start getting too stressed and will work at calming me down.

Today, I stopped to realize how wonderful my best friend is. She came over yesterday to learn how to make baklava and brought her granddaughter. We had a good time, but then a swear word came flying out of my mouth. I immediately apologized to her granddaughter and started to try to explain that I have a brain disease. She stopped me and said that it is okay, that her grandmother had explained this to her before they came over and told her of some things that could happen. Leave it to kids, I had no clue that she knew because she was treating me just like she would anyone else. It is a shame that most of the adults in my life cannot learn this lesson from her.

The past few days, I have been thinking about the importance of research being done for FTD. Someone actually pointed out that, as one with FTD, it is my responsibility to participate in any way I can. It is most likely too late for me, but it just might help future generations. Since my FTD is familial, it is even more important. There is very little research being done for FTD, because the research dollars tend to go to Alzheimer's disease, not other causes of dementia. I have been invited to participate in an FTD research project. Unfortunately, it would be necessary for us to travel four hours to the closest location of the research project. It is a city where we lived nearly 20 years ago, so we still know our way around well enough to manage. We also still have friends and family there whom I would love to visit. I say "unfortunately" because my primary caregiver is needed for this research project as well. That would be my husband who is unwilling to travel. Now, wouldn't that be the perfect gift for me... to simply tell me that he will take me and participate?

I was also reminded, today, that I am tired of having to make all the important decisions or at least being responsible to keep pestering until the important decisions can be made. This makes me feel like a nag and even worse when I get no response. That means I must try again later, and again and again.

FTD makes me tired. Some days I feel what my grandma used to call "bone weary," totally exhausted to the point that even moving is too much effort. Thinking on those days is absolutely out of the question. This makes it extremely difficult for me to take care of the tasks I always took care of before. Making phone calls is nearly impossible for me most days.  Despite this, I am seem to be expected to "take care of this" for all sorts of things. I used to do all these things. My husband worked 15-18 hours a day until he retired, so I took on dealing with these things. What I can't seem to get across is that just because I used to do it, does not mean I still can.

We received a letter that our dehumidifier has been recalled. In order to get the replacement, we need to take a picture of the model numbers and other numbers that are on two different stickers located on the back. We must then cut the electrical cord, write our name on the back of the unit and take a picture of that. Then, I must figure out how to upload the pictures and submit with the online form required. Of course, the first words were "You can take care of that with your camera and send it in, can't you?"

How many times is it necessary for me to explain FTD to people, to explain what the 'loss of executive functioning' entails. To me, this task becomes a multitude of tasks and immediately overwhelms me. I will have to make a list of all the steps, do one at a time and check it off the list as I go. Doing a task like this will be all I can do that day as my brain will be worn out. I realize how difficult this concept is for those with a "normal" brain to understand, I do. But, once it has been explained to the same person every few days for several years now, I would hope it would sink in. It has been explained by expert medical personnel, not just me.

I also realized that I must learn to say "NO!" I should be able to say "No, I cannot do this, it is too much for me." Only problem with that is that it would then not get done. We would continue to use the dehumidifier with the fire risk and I would be constantly worrying about whether it is catching on fire today. So, yes, I will do it, but not until next week. It doesn't run in the winter, so there isn't any risk of waiting until after Christmas.

Bottom line of all these rambling thoughts today? Maybe taking a day off is not the best thing for me to do. Either that, or I need to do it more often so I don't have to stress over so many things in one day. Oh, great, now I have to worry about which of these to do!