From Both Sides Now

I have loved Joni Mitchell's song "From Both Sides Now" for as long as I remember.  "...I've looked at clouds from both sides now; From up and down and still somehow, It's cloud's illusions I recall. I really don't know clouds at all."  

This song popped into my head while thinking about this blog. Of course, now, I can't get it out of there.

Earlier this afternoon, I was sitting here thinking I would just read through the support group, skip writing a blog this week and then take a nap. Then I read the post of a caregiver who was so exhausted that s/he sounded ready to give up. I realized that maybe, just maybe, I can make a difference in someone's once in a while by writing.

Just before getting on the computer, I gave my husband a sponge bath (anyone who has any tricks to get them to shower, please let me know), washed his hair, beard, face and the rest of his head. Thankfully he lets me do that about once a week. When he was all dry, he said he was going to take a nap. I should maybe remind everyone in case the entire population does not always read my blog. I have FTD, but my husband has dementia from Alzheimer's.

I invited him to sit down across from me and calmly talked to him. It was a miracle that I stayed calm. I pointed out to him, that he got up, ate his breakfast, took a nap, watched some auto racing on TV and fell asleep again. After all that exhaustion, he "allowed" me to wash his head. I pointed out to him that I got up, fixed his breakfast, grabbed a cup of coffee for myself, filled both of his pill boxes for the week, filled my reminder box for 2 weeks worth of pills, emptied the dishwasher, washed the kitchen counters and cleaned the stove top. Then, I washed his head. He wouldn't believe me, though, that my part of that was more tiring than his, because he had to stand over the sink while I did it.

I don't think I have to glorify the role of the caregiver as that is done often enough. Yes, it is probably the worst challenge that any of us will ever face. I manage to get away from the house once in a while, but that time is spent at doctor's appointments for myself or grocery shopping. Wow!  Such excitement and good times! I may have already written about this, but I told one of the Senior Van drivers that riding the van was my social life. He told me he really liked having me on his van and smiles when he sees my name on his schedule, but that I really, really need to get out more. That would be funny if it wasn't all so true.

I think that we, as caregivers, tend to beat ourselves up and think poorly of ourselves when we snap at our loved ones or are grumpy all day. Last time I checked, we are all human beings and are not perfect. Of course we should try our hardest and give it our utmost effort. Of course we should always treat our loved ones with respect and the best care we are capable of providing. The important word there is "capable". 

We need to be smart enough to walk away when we feel like lashing out or screaming at them. Of course our touches should always be gentle and reassuring. Yes, but if we are not endangering our loved one, sometimes we have to put ourselves first. When my husband is napping, I try to take at least 15 minutes to sit, relax and do some deep breathing exercises. If I didn't force myself to do that, I would keep on going full steam to try to get everything done.

Having FTD, obviously, compounds this issue. I was diagnosed with FTD before my husband was diagnosed with Alzheimer's. He was caring for me, pampering me. I was the one who could take a nap once in a while. Now, I push myself much too hard to make his life perfect and forget to take care of myself. Caregivers don't need to have FTD to forget that you can't help your loved one if you don't take care of yourself.

I actually got through to him about all I had already done prior to washing him and that I envied he was that he could go nap while I continued running the household. When he wakes from his nap, he probably won't remember, but at least I got that brief recognition of all that I do.

All well and good for the caregivers and they deserve all the credit in the world. But... those of us with the disease of FTD also deserve a whole lot of credit. We often go through our days totally confused and often in a fog. Sometimes we don't remember to brush our teeth or that we need to wash up or be washed up. Just like anyone else, we want to be comfortable and feel safe in our own environment. We suffer the indignity of poopy-pants. You will have to trust me on this, but it is easier for me to face this problem as my husband's caregiver than it is for me deal with when it is me who has done it. It is humiliating to have to ask someone to clean your butt. As horrible as the chore of cleaning up afterward, it is just as horrible and embarrassing for the loved one.

I will not go into the specifics of how I finally reassured my husband when he had an accident today. He was so upset that he had done it, embarrassed for himself and for me that I had to get up close and personal to his private areas. I will not tell you exactly what I said, but it had to do with the fact that I had been up close and personal with those areas for quite a few years now. By the way, the reason he had an accident was because he felt so anxious that he was causing me too much trouble. After being in a nursing home for six weeks last fall, he is so fearful he will have to go back. It took me long enough to get him out of that place, I'm not about to send him back, but he does not realize this. So we caregivers have to stop and think what we say to them. I did neither of us a service by getting through to him how much I was doing.

Those of us with dementia need our caregivers to offer us as much dignity as possible as well as the courtesy of having a space to ourselves where things are calm and quiet. I am actually very fortunate that my husband does nap so often. While he naps, I can come in here, to my quiet space, and recharge a little. Even if that time is spent on the computer "talking" to others in the support groups I participate in. I don't have any friends who stop by to visit anymore but these people are my friends and understand what I am dealing with.

Another thing I have worked out is that, since his easy chair and tv is right outside my bedroom, I am able to relax in the late evening. He is busy watching sports on tv, something I no longer have any interest in, even for my beloved Pittsburgh Pirates. So he sits there watching and I can relax in my room. Now, some evenings, I get called out because he can not figure out the remote control. That dilemma is a tough one because, with my FTD, I'm no better with it than he is. That one nearly always ends up in an argument. 

We don't always need to be right there together as long as we can tell our loved one is safe and comfortable. I can sit in my room, right where I can hear him if he is distressed, while I try to read, play on the computer or play games on my new Smartphone. I won't begin to get into that. I can play games, but couldn't figure out how to answer calls. My daughter was so sweet and didn't laugh when I called and asked her how to do it. I would bet it wasn't easy for her to hold that laugh in!

I know I have already said it too many times, but neither side of the dementia equation is easy. No matter which you are, it is overwhelming and often times seems impossible to cope. It is never about patient vs. caregiver or the other way around. Not in an individual situation nor with the two groups overall. Unfortunately, there are more situation than most people realize where the person with FTD is also the caregiver for another person with dementia or other disease.

I do not elaborate on being one with FTD and caring for someone with another horrid disease in order to receive sympathy. Instead, I elaborate on the situation to try to improve communication and understanding between patient and caregiver. 

Things Running Through My Mind

This has been a stressful week. Following up from last week's blog, smart phones should come with a warning:  "Someone with FTD who was still using a 20+ year-old Motorola Flip Phone should use caution when operating this phone." 

I can answer calls. At least I think I can. No one has the number so no one has called. I can access my email and Facebook. Better yet, I can download and play games. I have been spending 2-3 hours every day trying to get familiar with the darned thing. I compare my efforts to learning how to operate a computer after only using an abacus. To those of you not old enough to have been taught how to use an abacus, don't worry about it. To younger folks, they most likely resemble a baby toy. I do not think the skill is taught any longer. They could make a quite interesting display item.

So, after a week of trying to use this modern device, I am fairly convinced that with some additional tutoring from my daughter who understands FTD and smart phones, I will eventually get there. I do hope, though, that I do not become a phone addict like most of civilization. I have enough trouble walking, I don't need to be looking down at the same time.  

Then comes today. I open up my blog only to be told that Google+ has been eliminated and it may affect my blog. Of course, the "information", and I use that term loosely, is in jargon that leaves me saying "What the hell? Who wrote these instructions?" 

I followed the directions to back up the blog so I would not lose all my previous entries. The intention was all well and good, except that when I open the file, it is all gibberish. All these letters, numbers and symbols are my blog archives? How do I turn it back into what I have written? I have to trust that somehow it will work. Otherwise, sorry, but everything written before now will be gone. 

Yes, I have a headache now. When I remember how I used to be able to get a computer to jump up and dance, I just want to cry. I created a billing system within a software package that did not include one, a proud moment. I created an inventory system using just a couple Excel spreadsheets. Yes, it was simplistic, but it worked for what we needed. So, thanks FTD, I feel like a bumbling idiot who is futilely trying to do something that used to be second nature. 

I guess both of these examples fall well within my latest vow to myself. The vow was to stop expecting do everything or even be able to. Just because I could do it all before FTD, I must admit that I just cannot any longer. Beyond that, the goal is to learn that the world does not depend on my abilities and actions alone. I kind of took up the mantle from a family member who always did everything she could to help others until she was forced to slow down from dementia. I am allowed to slow down a bit as well.

I am not saying that someone with FTD has to stop doing everything. I think we should keep active. I think we should keep trying to do things we used to. I also think we should try new things. We may not succeed, but I still think it is important to keep trying. 

For an example, I used to be an artist of sorts. I won local and national awards for my work in ceramics. I did a lot of tole painting, along with just about every other kind of painting. Since FTD, I cannot paint a thing. I recently attempted once again, thinking that maybe it was just "a phase."  Nope, couldn't do it!  I am in awe of the many people with FTD who have discovered new talents or realized they could still do what they did before. Some of the artistry that many of my FTD friends produce is phenomenal. I figure I had my turn at being creative, now it is time for others to step into their creativity. It's my new task to sit back and enjoy their creations while still doing all that I can. 

How many times have we been told (I know I have repeated it often enough) that every case of FTD is different? I am so happy that I still have the ability to write and speak. What it all comes down to, I believe, is that we should stay active, stay creative or use any of our other talents. 

The other day, someone asked me how I manage to always have a smile on my face. (Not true, but much more often than not.)  I answered that just because I have a life-ending disease, my life doesn't have to end now. 

Today, my smiles are because AFTD's Educational Conference is only 3 1/2 weeks away! I hope to see all of you in Los Angeles!

Upgrading My Life

I am literally shaking as I am writing this. I just spent more than ten minutes trying to remember how to get to my blog site to write a new entry. I kept going over Facebook, every which way, trying to remember. It took me that long to realize it wasn't on Facebook, that it was a separate app.

I am hoping that this is due to the fact that I finally gave up my 20-year-old Motorola flip phone. Yes, I have joined at least the 20th century, maybe even the early 21st, that is if I ever figure out how to use it.  I told them I needed a dumb phone, not a smart phone, or at least a smart phone designed for dumb people. So far, I have learned how to make calls, send and receive messages (kind of, and I can't figure out how to delete them). 

Hopefully, because my brain is sort of fried from the phone since yesterday afternoon when I picked it up, that is why I am so confused today. Oh, and I must have kind of figured out Facebook on the phone, because I somehow loaded it three times!  I am going to have to stay at the AFTD Conference in LA for an extra day so my daughter can straighten it out and maybe, just maybe, teach me how do work it. I have it on "Easy Mode" but even that seems to be beyond my abilities. Damned FTD!!!

I am faced with making another decision to make a leap. We have an area rug in our family room which is an extension of our kitchen. I have those rubberized pads under it to keep it down, but that is no longer enough. I have been tripping over it and falling a few times a week. You would have been amazed a couple days ago. I was getting several things out of the refrigerator and then stepped back, tripping on the edge of the rug. I don't know how I did it, but I twisted enough to land on my butt and did not spill or drop a single thing! That year of gymnastics I took 62 years ago finally paid off. Right, keep telling yourself that, Cindy! I was lucky, because I did whack my head on a small sofa and had a heck of a neck and headache for a couple days, but it is fine now.

The leap I am talking about is about what to do about the flooring. I have come up with so many possibilities that I can hardly think about it anymore. It's not easy since it is really two rooms totally connected as though it was one. I guess I will have to break down and have a flooring sales person come out and see what all is possible. Either that, or just glue the area rug to the floor. That sounds like a solution for an FTD mind.

The increase in the number of falls has not been limited to the area rug. I have difficulty with any small difference in the walking surface. What I am talking about are things like a 1" doorstep or a small height variation in the sidewalk or any surface. You would think ramps would be a good solution, but those are often even worse for me. If all ramps were built with a constant degree of incline it would most likely be fine. Unfortunately though, nearly every ramp has occasional adjustment in angle. I cannot see or sense those changes and it ends up like the edge of the area rug. I don't see it, so my brain and feet do not know to adjust and I trip and/or fall. 

Until recently, most of my falls were on stairs. Once I had a stair lift chair installed, the falls were greatly reduced. It bothers me greatly that my deteriorating brain has now found other ways to trip me up.

It is not unusual for me to trip over something and fall, then get back up and trip over the exact same thing and fall again because I had no clue what I had tripped over. It is actually comical, yet frustrating, to me that when people observe me fall the first time, they run to me and offer to help and are quite sympathetic. Then, when I fall the second time, they turn their backs and walk away, mumbling things like I am an idiot or that I am a drunk.

It is frustrating because, in addition to using the stairlift, when I started using a cane, it helped immensely. I hate to think that I am going to need to take it a step further with a better walking aid. As many times as I have recommended to others that it is time to switch to a walker, I have a lot of resistance to that option for myself. Then again, it took me over 30 years to upgrade my phone. The sales people were amazed it still worked!

I do still see my geriatric/dementia psychologist once a month. I think maybe it is time to discuss this with her so she can get help me over the resistance I have to a walker. I really, really, don't know what I would do without this woman. I wish everyone with FTD could find a therapist like her.

On a much more positive note. The AFTD's Educational Conference is scheduled for Friday, May 3rd, in Los Angeles. It is not too late to register. For more information, please visit the AFTD's website, www.theAFTD.org.  

This will be the fourth conference I have attended. As soon as it is over, I will be looking forward to the next. There is a lot to learn at the conference. They bring in many experts who present all the latest information available on the disease and research going on, as well as ways to live with FTD. Just as importantly, at least to me, is the opportunity to meet with so many other people who have FTD and caregivers as well. It also turns out that some of us with FTD really know how to party!  

Don't tell anyone, but it is a month away and I have already started packing!

To Serve or Not To Serve, that is the question.

You know the expression "Damned if I do, damned if I don't" I am sure.  That is exactly what I am feeling today.

Almost exactly a year ago, I was invited to be a member on the Pennsylvania Governor's Task Force on Alzheimer's Disease and Related Dementias. (How is that for a handful of a title?) Of course I was extremely honored. More than that, though, I was thrilled that FTD would be represented on the task force.

I did my best to represent FTD and other dementias against the majority interest of Alzheimer's Disease. It was extremely frustrating, at times, to get them to remember that dementia does not equal Alzheimer's. I am positive that every time I would raise my hand, there were a lot of silent "Here she goes again!"  I did not mind that and I did get through to at least the leaders of the task force. 

I attended all the meetings that were leading up to the State's annual forum on dementia. The forum was cancelled the day before it was scheduled due to a huge snow storm. It was never rescheduled. Then the governor was reelected and he changed his Secretary of Aging, the department responsible for the task force. I figured that was the end of the task force and our efforts. Fortunately, I assumed incorrectly.

Today, I received an email from the two leaders of the task force saying that we are to meet again on May 9. This really hit me hard. I knew I could not make the May 9 meeting, but also questioned if I could continue on the task force at all. May 9 is during the week following the AFTD Educational Conference. I know that I will probably still not be recovered well enough to be at my best by the 9th. The biggest obstacle to me attending is that after leaving my husband at home after just being gone for four days. With his Alzheimer's Disease, his anxiety level and confusion continue to worsen. Although the person I have staying with him during the conference is the one person he likes to have around, it is still me he wants and relies on. So the May 9th meeting almost certainly out of the question.

Added to that is the frustration of not being heard at the meetings. As often as I reminded them that Alzheimer's is not the only dementia and we must remember the "other" dementias, it was as if I never said anything. I will say that one of the chairs of the task force did understand FTD and the importance of including it. He also stressed the importance of including the "other" dementias. The Secretary of Aging, at that time, also expressed appreciation of my efforts and I was able to have a lengthy conversation with her about FTD. 

Right this minute, as I am writing these points, I came to my decision. I am going to reluctantly resign. I will stress to the chairmen of the task force how strongly I feel they need to replace me with another advocate for FTD. If not that, then an advocate for one of the other dementias. As you can imagine, dealing with my FTD and my husband's Alzheimer's is overwhelming at best. I believe that right now, I must put the two of us first in my priorities.

I am proud of my efforts over the past year. I am still, truthfully, left  with extreme guilt over this decision. I feel like I am letting all of you and the AFTD down. Hopefully, I did make an impact on at least some of the other members of the task force and they will remember there is more to dementia than Alzheimer's Disease.

Now that I have made my decision, I hope that every one reading this has confidence that I will continue advocating for FTD and those of us affected by it. I will just have to find other ways that I can do it without having to travel out of town in order to be here for my husband. I will certainly continue this blog...

In This Together

I truly had no intention of writing a blog today. I felt much too exhausted and could not come up with anything that interested me enough to write about. 

To the first part of that statement, my husband's Alzheimer's Disease has taken another turn for the worse. He has been so confused. He can no longer operate the remote control for the Dish network. He was never really good at it, but he seems to just keep pushing buttons out of frustration when he cannot find what he wants. He has found some screens and options deep down in the system that I had never seen before. Some have not been easy to get out of for him. Now, we have come up with a solution that I pull up a program for him from the DVR and he watches it to the end instead of switching between different recordings at his whim. Now, isn't that what being a caregiver is about? Instead of griping about what he is doing, it is so much easier and makes life much happier if we work out a solution to the problem.

Another example is that In addition to having more difficulty doing things, he is forgetting more and more. It breaks my heart every time he asks me what my name is. This morning, he asked me if I was the one who last night solved our problem with the television. No matter how many times I tell him that he and I are the only ones in the house, he still seems to think there are more. He also questions if it is our house and if we live there. We have come up with a solution to the name issue for now. I told him how he used to call me "Kid" early in our marriage because he was ten years older. So far, he gets a big smile on his face when he remembers and calls me "Kid."  He also repeatedly wants to compare our wedding rings to assure himself that we are married. He is amazed every time I say that we have been married for 47 years. He does this a LOT, but it does not bother me. I find it sweet. I may have talked about some of this in prior blogs and apologize if I am repeating.

Yes, I realize this blog is about FTD, not Alzheimer's Disease, but it is pretty difficult for me to separate the two just as it is now difficult to separate my role of caregiver from one dealing with FTD. Both are exhausting. I have been getting up more often through the night to check on him which worsens the fatigue I usually feel from my FTD. I do hope that some of my experiences of being his caregiver can provide help to those who are caring for someone with FTD. While the two diseases are quite different, the problems they create are often the very same. 

This morning, while eating my breakfast, I had an episode of swallowing difficulty and started choking. He jumped up, filled a glass of water and brought it to me and fussed over me until I could assure him enough that I was okay. He even cleaned up the mess I made from coughing up the food. To me, that is a show of true love. 

Now, to the second part of my opening paragraph. Being so tired, nothing had inspired me as a subject for writing today. I was not up to doing any necessary research if I was going to write anything informative about the disease or the symptoms it causes. I was just sitting at the computer, scrolling through the few support groups that I participate in. Unfortunately, I stumbled across a post from the writer of a blog who was criticizing another blogger and the contents of the other's blog itself.

You know, we are all in this together. Those with FTD, those who care for someone with FTD or just those who love someone who has the disease and wants to learn more. In my opinion, blogs are like t.v. shows or movies. If you begin one and it doesn't interest you, stop watching or stop reading the blog. I am sure no one enjoys every one of my blogs and that often times they disagree with what I am saying.

That is the good thing about a blog. It is someone's view on an issue and, often, relaying their experience with the issue. The interpretation of information provided can vary as well. Bottom line, we are all different, have different beliefs and see things differently. If you don't like someone's blog, including my own, stop reading it. Hopefully though, with mine anyway, you will come back to the next one to see if it is of more interest to you.

Personally, my FTD often makes it difficult for me to follow some blogs. I get confused enough with my own! When the writer is particularly verbose (that's a pretty good word for someone with FTD to come up with) or is overly dramatic, I am lost. I prefer reading things that are right to the point or, sometimes even, slap me right upside the head to the point that I say "Why didn't I think of that." To me, writing a blog, is not an exercise in creative writing. 

If you ever question something I say in a blog or disagree with me, please feel free to comment. That is a wonderful way to learn and to see things from a different angle. But to see one blogger ripping apart another just does not seem right to me. This is especially true when it is one blogger ripping apart another. It comes across to me as "Nah, nah, nah, nah. My blog's better than your blog."  No such thing. Everyone's blog is personal and if they were all the same, who would read them?

Okay, I will climb off my soapbox. The last thing I will say on the subject is that like any other piece of work, a blog is individual and is full of opinions and subjective information. It is fine to disagree with the words or opinions expressed, but it is never okay to verbally assault the writer. I must also explain, that this is not personal and I was not one of the bloggers involved in the incident that upset me enough to write about it.

As I said, we are all in this together and I think we should be supportive of each other, even if we disagree from time to time. Kind of like a family...

Isolation

Depression has been overwhelming me for the past few days. All I can think of to explain it properly is from the words of Merle Comer and Alzheimer.net.  "Nothing prepares you for this disease. No one is prepared for the isolation. Friends disappear because the person they knew is no longer there..."

I have written several times about how those with the disease of Frontotemporal Degeneration become isolated and lonely. Just like most everyone with FTD, I have experienced this many times over. Longtime friends stop returning phone calls. Friends promise to stop and visit but never show. The invitations to events, even family events, stop coming. Either that or they arrive in the mail with a note "We know you cannot attend but wanted you to know that..."  In other words, we don't want you there, but would you please send a gift anyway. Messages are not answered, whether on the answering machine or social media. 

On one hurtful occasion, I had invited friends over for dinner. We had been talking about Mexican food and I offered to cook up my favorites. We picked a date and time a few days away. I cooked for two days and had the table decorated in a beautiful Mexican theme. You have probably guessed by now, they never showed up. My phone call asking where they were was not answered. Finally, a few hours later, I received a social media message that they were busy elsewhere. I was absolutely devastated and embarrassed. Why I felt embarrassed, I have no idea, but I was.

Over all, though, I think I have dealt with this desertion by our friends and relatives quite well. I concentrated on those who still kept in touch even if they rarely visited. When my husband's Alzheimer's Disease became more noticeable, that group of friends and family dwindled even further. He no longer heard from his best friends.  For him, sadly, it didn't affect him because he does not remember who they are anyway. 

A few days ago, I was talking to a friend via Facebook messenger. This friend and his wife have been part of our lives since we met through my daughter nearly 15 years ago. We have been through a lot together. Even after they moved about 20 miles away, we still made a point of getting together occasionally. When they would come back to our town, we would often meet up for dinner. I have always supported them, helped them when I could and considered them part of our family. 

During our conversation, I said that I hoped the next time they were in town they would stop by. I explained that we could no longer take them to dinner since neither of us can drive, but I offered to fix a meal or dessert and offered that if they picked us up, we could go to a restaurant. His answer was that they do get down here quite often but they wouldn't be stopping by. Then he quickly said that they usually come down in the late afternoon and figured that I was worn out by then. Wow! Could they be any more thoughtful than that? Was I supposed to say "Thank you for thinking of me"?  I was very thankful that it was a Facebook chat rather than in person or on the phone because I would have been speechless. I felt the rug had been pulled right out from under me. You know that feeling when it literally feels like your heart drops? I felt that. Most of our "friends" and relatives have not been so open about not caring to spend time with us. They just don't return calls until I finally get the message.

Since my aunt and uncle passed away a year ago, the only family we hear from, in addition to our daughter, is my sister, her husband and my husband's sister. My circle of friends now consists, almost exclusively, of my FTD support group friends. 

I do have an older woman who has been cleaning our house for a couple years now. She occasionally takes me to the grocery store and to doctor's appointments, even some that are nearly 100 miles away. She even stops by at least once a week to visit and check on us.  When my daughter and I attend the AFTD Education Conference in L.A. in May, she has offered to stay with my husband. I am quite thankful for that since she is the only person he feels comfortable with besides me. Notice that I introduced her here as my friend. She initially was an employee. She still is our house cleaner and I do pay her for that, but she is all anyone could want in a friend. Without her, I would feel totally isolated in our home. 

Oops, I forgot one. I recently ran into an old friend and he does call every couple weeks to check in and we do manage to get together every couple months or so. Despite him and the woman I just wrote about, I feel deserted and alone most of the time. I never, ever, believed that this would happen to me. 

I go back to the quotation I started with and believe it is correct. People desert those with FTD and other dementias because they do not understand that we are still us. Yes, we act differently now and it may be more difficult to talk with us, but we still have a lot to say. There is no reason to feel awkward to be around us. Even when you don't feel comfortable trying to converse with us, just being there helps. I promise, dementia is not contagious. even though It often feels like that is what people believe. 

Good Days and No So Good Days

There are days and then there are days!  Today has been a day! 

To begin with, someone whom I have long respected really let me down this week. He sent out an email to everyone in an organization I have been a part of for 15 years. I was greatly shocked and outraged that he was supporting a policy that greatly goes against my beliefs. I am not going into what and why. I only mention it because in the few days since reading his thoughts, I cannot get it out of my mind and how wrong I consider his opinion. I suppose I could confront him about it, but not only would it not do any good, it would just bring more negativity into my life than I need or can handle. I tell you this to explain the state of mind I am in to deal with the past couple days.

Something absolutely wonderful happened, though, on the same day I received his email. A friend, one with FTD, rejoined our support group for those of us with the disease. I met this man and his family last year at the AFTD's Education Conference and really enjoyed getting to know him and his wife. He joined our support group after that conference and was a great member. The best gift he gave us was his wonderful sense of humor. I admired the way he faced the obstacles FTD presents and appreciated how he usually had some good words of advice. A couple months later, he dropped out of the support group so he could better focus on himself, which is what he needed at the time. I am thrilled that he is back and that he still manages to brighten my day.

On the other hand there is no doubt that FTD sucks. During the past week, my symptoms have worsened and I have developed a couple new ones. I have been absolutely, and completely, exhausted. I believe I would be able to sleep through an entire two or three days, if only I could. I had a relatively long and demanding Monday. Tuesday was a bit better, but not by much. The next three days, I have been worthless due to exhaustion. I have been unable to accomplish anything. One of the days, I swore I was too tired to chew my dinner. 

Part of the demand, of course, is my husband's Alzheimer's Disease. My sleep gets disrupted at least a couple times each night when he needs me. 3 hours + 3 hours + 2 hours does not equal 8 hours when it comes to sleep. I have been needing to nap during his afternoon naps. It helps a bit, at least giving me enough energy to fix our dinner, and that is about it.  Whether when I start getting full nights of sleep, the symptoms will bounce back a bit, I have no clue. I have been stumbling, losing my balance and falling even while using my cane. 

A more troublesome symptom is that I am beginning to have difficulty speaking. In order for my husband to understand what I am saying, I have to speak slowly and very clearly. Right now, I cannot seem to speak clearly, not enunciating well enough for him to understand. This frustrates me, not only realizing that I am having this difficulty, but because I feel so awful that I cannot communicate with him as well as I would like. I am getting fairly decent at charades though, if anyone wants to play.

Today is a good day in that I only needed to get up once to help him. I heard strange noises coming from his room and went in there to see what was going on. It was him making these sounds in his sleep and one of his legs was rigid and hanging out of the bed in a strange position. I rubbed his leg for a few minutes to relax it, then was able to move it back up onto the bed and under the covers. I leaned over and kissed him like I always do when he needs me through the night. God bless this man, he opened his eyes and said "thank you" in a very sincere tone of voice. I'm not sure if he was thanking me for bringing his leg up or for the kiss, but I'll take it either way. He was also able to get himself up and fed in the morning without waking me. I actually slept until 1:00 in the afternoon. I was amazed that he managed to keep quiet enough for this to happen. The look of satisfaction on his face was priceless and a reminder of the way we used to take care of each other.

The greatness of this event is hugely overshadowed by some news I received. A very dear friend of mine, who also has FTD, told me today that she was waiting for a bed in an assisted living facility. This in itself is not a bad thing and since she has been living alone, it is probably a wise choice made by her and her son. The negative side of this is that her symptoms are progressing to the point that this move has become needed. 

Since my FTD, this horrible disease has claimed many people I had become friends with. Most of them online, but some I have met in person as well. When you suffer from a life-ending disease, this certainly comes with no surprise. It is inevitable. When I realized that my friend's disease had worsened to the point that she is making this move, it upset me. I have not yet met my friend in person. We have become this close just from being friends online. It is like we are soul sisters because we had so much in common. 

Since last year's conference, I have been looking forward to meeting her in person at this year's. It is much closer to her home and she and her son were planning to attend. We had great plans and were looking forward to a great time together. She told me today that they are not going to be able to be at the conference. I am so very disappointed. I am also extremely sad because she is one of the first of my contemporaries (the ones who were diagnosed right around the same time I was) who has reached a milestone such as this. So, today, I am sad.

Then, I remember her words of praise and gratefulness for the support and care her son provides. I understand what she means because my daughter is so important to me as well. Her words were "Yes, we are blessed." We are, no doubt about that. She also has a beautiful (inside and out) granddaughter who brightens her days. 

Tomorrow, this is what I will remember. I will be so thankful that she has her son and granddaughter and that they have found a good assisted living arrangement for her. She will still be the awesome friend and soul sister who shares the same sense of humor I have. We will still trust each other with our deepest secrets. It doesn't matter that we will not meet in person in a couple months because we already know each other so thoroughly. I love this woman and am happy that she will be protected and cared for in her new home.

Yes, tomorrow will be a much better day.

Loss of Balance and Falls

Among the frustrations of FTD are loss of balance and falling. This usually begins to occur in the latter part of the early stages of FTD or in the middle stages. It is impossible to narrow the time line for FTD problems to begin. Unfortunately, FTD does not really have "stages" of progression like many of the other dementias have. The range of symptoms and timing of the symptoms occur based on the order brain cells are destroyed and which role the destroyed cells controlled. 

As FTD progresses, many begin to have weakness in their muscle and unexplained movement disorders, including rigidity, unsteadiness or slow movement. These, along with other causes, contribute to the falls.

Loss of balance and falling were two of my earlier symptoms. When I was still working, in fact, my supervisor had banned me from going to the upstairs portion of the office. Not only were the stairs steep, there was a curve in them. This change of direction messed with my brain every time I used them, especially going down. I didn't mind her doing that at all. All the file cabinets were upstairs so I didn't have to do any filing any longer. It didn't really impact me very much until a couple months later, after our busy season, she fired me. 

Falls and loss of balance may occur for a large variety of reasons in FTD. If we try to do anything else while we are walking, our brain can get confused since it now has to concentrate on both activities. As I often say, with FTD it is "one thing at a time." If a person with FTD is experiencing rigidity in their body, that can cause an unsteady gait. Paranoia and hallucinations can play a role. If you think someone is going to reach out at you or you see imagined people or object, it can cause a sudden change in step, resulting in falls.

Some of the subgroups of FTD have more prevalent movement disorders that can affect the ability to maintain balance and a steady gait:

In Corticobasal Degeneration (CBD), the ability to control movement develops, often developing only on one side of the body. With symptoms such as these, it is obvious how loss of balance occurs, leading to falls.

In Progressive Supranuclear Palsy (PSP), it is common to suffer falls. PSP causes progressive loss of the ability to control movement.

FTD with Parkinsonism brings symptoms mimicking those of Parkinson's Disease. These can include slowed movement and changes in gait, stiffness and balance problems.

FTD with ALS (also called Motor Neuron Disease or MND) also causes progressive muscle weakness as seen in ALS in addition to FTD symptoms.

While this is not a complete list of complication of FTD that lead to accidents, it give you a good idea that we not falling because we are being careless or not paying attention to what we are doing.

I have written before about eye issues with FTD, primarily double vision. This can start out as seeming like blurry vision because the two images are not overlapping to a great extent. It eventually can appear as two distinctly different images. The double vision is caused in the brain. Each eye sees a different image, usually about 3/4 of the image, then the brain, puts the two images together. To test this, you can place your hand of one eye and see if the visual disturbance is gone. This usually is not able to be corrected adequately with eyeglasses, including prism lenses, since the problem is not in the eyes and seems to fluctuate constantly. For me to be able to watch television, I must cover one eye. In other cases, bifocal or trifocal lenses or "invisible line" lenses can contribute to difficulty with walking and trigger falls.  You can find more detail on this subject in my blog from October 2018 "Eyes Issues with FTD."

So, what can we do to help avoid as many falls as we can? The first thing that people tell you is to pick up throw rugs, anchor larger rugs to the floor, make sure things are not being left lying around on the floor. Okay, rather obvious, but it's a start. 

There are more of the easier things to do in your home, in addition to picking up rugs. Install grab bars in the shower or by the tub. Use a shower chair so if you lose your balance, you are already down. Some find a raised toilet seat can help. Keep open pathways throughout the house so you can more easily navigate your way. A more expensive suggestion, though some insurance but not Medicare will help, is a stairlift chair. It is definitely the best investment I have ever made. One or two avoided trips to the emergency room equals the cost of the chair. Another item to consider is a lift chair or recliner that helps lift you to a standing position. Barring that, try to have a chair for the person with FTD with a firm cushion and firm arms to better enable their getting up from the chair.

You may want to consider consulting with a physical therapist for ideas of strengthening exercises or with an occupational therapist for a safety evaluation of your home as well as suggestions to help. 

The best thing someone with FTD can do for themselves is to get over the reluctance to use walking aids. I started out with a walking stick of my grandfather's, then graduated to a cane with three feet. The next step is a rolling walker, then a wheelchair. At this point, I only use those two when I am needing to walk any distance. For each of these, I suggest visiting a mobility equipment specialty store to be fitted for the appropriate one for you. There are many different types that benefit each individual. You don't have to buy it there if you don't want to, just get an idea of which is best, then find it at the lowest cost.

Exercise is often recommended as well. I will caution you about the use of a treadmill. Be very careful, make sure you hold on at all times and keep the emergency shut off cord attached at all times. I had a quite nasty fall off our treadmill. I did both of those things, but the emergency cord pulled away from my clothing without enough force to stop it. Let me tell you, that rotating belt can quickly cause damage to one's skin when you cannot get away from it.

We can also try to focus on one thing at a time, as I said above. I try to not immediately stand up and go to a different spot when I think of something I want to do. I try to pause for a few seconds so I can get my focus back onto moving.

Once someone falls, it is best to not rush to get them upright. Do it slowly. Assess any injuries and let them rest for a bit. Falling can wear one out, from the frustration and/or embarrassment alone, so staying down and resting for a a few minutes can help in getting them back up again. We keep a very sturdy, padded ottoman that can be brought to me to assist me in getting upright by myself when I fall in the house. It is a firm cushion on a wood base with four wooden legs. Lightweight, yet quite strong. It helps me to feel a little more independent and less embarrassed if I can get up myself. It is important to get over that embarrassment, but I have not succeeded yet.

Some of the frustrations I experience, when I lose my balance or fall, is people immediately saying "Be Careful!"  Really, do these people, first of all, think I am being careless or stupid?  Secondly, what help do they think this will provide? Another is when they ask "What did you do?" or "What happened?" How am I supposed to know? It comes on all by itself without any warning and so quickly that I have no clue what happened. I just know I am on the floor and having someone questioning how I cannot know what happened surely helps nothing.

One of the most embarrassing incidents since developing FTD, was walking up a slight grade on the sidewalk to our car after leaving an event. We had been sitting for over two hours, so my balance was off. Then I heard these words from behind me: "Come on, let's get around this drunk!"  I wish I could have responded to them, but all I could do was hang my head in embarrassment and cry.

An example of how quickly a fall can happen, a few days ago, I was in my bedroom, simply walking around the end of my bed to the other side. Wham! I fell onto the side of my hip and whacked the back of my head on the wood floor. I have no clue what happened. I was upright, then I wasn't. There was nothing there to trip on. It seemed like my vision became distorted or just blank, making me a bit dizzy, losing my balance and going down.  All within a second or two.

Just Plugging Along... as Best We Can

A few days ago, a friend responded to one of my Facebook posts with "...you are a saint for being both a caregiver and an FTD patient."  My response was "Not even close, all I can do is keep plugging along." I really appreciated his comment, though, because he was recognizing how difficult some days are for me, but I truly don't believe I deserve praise for what I do.

Plugging along... Isn't that we all do, including those of us with FTD or any other dementia and those caring for someone who has it?

There are days, many days in fact, that I am just utterly and completely exhausted. Some of those days, the exhaustion is more related to my FTD worsening and others are due to trying to care for my husband and his Alzheimer's Disease. Then there are the days when he and I are both having bad dementia days. Those days, I tend to fall apart and end up in bed at night, praying that he will sleep at least a few hours so I can get some sleep. 

The nights when he is more confused that usual, he tends to wake me up more than once an hour. Most times he wants to know what day it is, whether he got his pills that day, wants to complain because "they" haven't fed me in days, if I am the one who takes care of him, who else is living here and the list goes on and on. All I can do is answer his questions, reassure him, tell him I love him and that he needs more sleep. I tuck him back into bed and pray for him to be able to sleep.

The days that are the worst for me and my FTD can be many. The day after he has a restless night, my FTD symptoms are exaggerated due to my being exhausted. Other days, like everyone else with FTD, new symptoms pop up for no rhyme nor reason. 

One of the first symptoms I noticed about my FTD was falling and losing my balance. That continued for several years but then lessened in severity. I would still lose my balance, but using a cane was preventing me from falling. I was encouraged by this. I knew that my FTD was not "getting better" but was hopeful that these symptoms had run their course, making way for new ones. I know, I know, wishful thinking. This past month, the falling and loss of balance has come back in full force. When you add to that, my continued weakness in my arms and legs, it has become much more stressful and difficult in caring for my husband. 

When he needs assistance in standing or moving in his bed,  I just do not have enough strength to help him. Of course, being aware of this, I have made compensations. I purchased a lift chair for him and have taught him ways to get out of the other furniture. He does really well on bar stools. They are the right height for him to sit right onto them. It is also easier for him to get back up because he does not need to lift himself, just step down. I have him using the kitchen bar stools with padded seats and backs, along with good supportive wooden arms. Since he still refuses to use his cane, I have taught him how to go from place to place by holding on to solid objects. 

I have found that is the best thing for us. We improvise... we keepplugging along. Well, I guess I improvise and he tries to understand what I am suggesting we try. We manage, though. 

Amazingly enough, when I am having a really bad day due to my FTD, he seems to sense it. He can't really do anything to help me or to help with things around the house, but he actually shows compassion and asks frequently if I am doing okay and do I need anything. When I say "no" I also make sure I thank him for asking and tell him how much I appreciate it. 

Sometimes, on difficult days such as this, when it is bedtime, I will tell him I really, really need to get a good night's sleep and ask him to be more involved in getting himself ready for bed as well. It actually works some nights. I will wake up around 9 a.m. and realize I have slept through the night because he has as well. When this happens, I thank him profusely and tell him how much good it did for me to sleep through the night. Does he understand what he did for me? I kind of doubt it, but praise of any kind (honest praise, no false or condescending praise) is a good thing for anyone. When he doesn't do things correctly or is in a stubborn mood, I try my best to not criticize him. I make sure to thank him for trying. Always trying to keep it positive for both of us.

Sleep is an essential part of living with FTD.  When I am tired, my symptoms worsen. Sometimes I bounce back after succeeding in getting a full night's sleep. Other times I don't. Swallowing is a good example. When I am tired, I have more trouble swallowing. Unfortunately, that does not improve after I get some rest. 

Speaking of which, I just have to write about something that happens a lot. My husband has difficulty understanding words when others are speaking, he hears the noise the words make, but interpreting just what words they are is a problem, just as it can be for many of us with FTD. Because of my swallowing issues, I have to constantly clear my throat, I would guess dozens of times a day, my husband asks, "What did you say?"  He is not able to comprehend that the noise I am making is not words. Fortunately, while this should make me quite sad, I also find humor in it. Because I do, it is one thing that does not tax my patience level. I have not yet snapped at him or asked him to stop asking that. Thank God for finding humor in things.

Plugging along... that's what we do. I have given you examples of how I plug along while being a caregiver. How is it possible, though, to separate and identify the daily issues of his dementia from my own? It seems there is a lot of information out there with suggestions of ways to cope with being a caregiver. Not so much for those of us with FTD. We are portrayed as the "bad guy" in the stories. Oh, the dastardly things we do to make the life of the caregiver so much worse. Many times, it is implied that these things are done deliberately by us. 

To me, and I am told by many others with FTD, these stories and complaints leave a feeling of despair and a strong sense of no longer being loved. The worst for me, is the feeling that many caregivers and those who advise caregivers no longer see us as valuable. We read and hear often enough of all the things we can no longer do and all the inconveniences we cause the caregivers. So often, that we can feel totally worthless and incapable, or undeserving, of being loved.

I am not saying that these caregivers and advisers all truly believe these things or think they are suggesting them at all. I have to believe that they don't realize how we are interpreting their words as something negative. One thing that comes up often is that we do things deliberately. I can say with confidence that most of us with FTD are not capable of intentionally doing many of the things we do that frustrate the caregivers. Most, if not all, of us are incapable of sitting down and thinking "What can I do to irritate my caregiver today?" Even if we were capable of thinking that way, how could we understand and figure out how to enact it?  Along the same lines, something that can can be interpreted that it is deliberate is  when we are told more than one thing at a time. We quickly develop overload and can not understand any of what has been said. 

For instance, if someone were to tell me to gather up the trash, take it out to the can and wheel the can out to the street. I am still thinking "Gather up the trash? Okay, how do I do that. I don't remember, do I bring the wastebaskets to the kitchen and empty them into the bag. Hmm... or do I take the bags to the wastebaskets? I don't remember how I did it the last time. I think I am supposed to bring the wastebaskets to the bag so if it is leaking, I don't make a mess. Oh, wait, is she still talking?" What are the odds that the trash can is going to be taken out to the street without further instructions. It is just not the way our brains work anymore. "One thing at a time" is my mantra.

The role of being a caregiver or being an adviser to caregivers is difficult. There is no doubt about that. Yet, I find myself wanting those writing articles, making speeches and such to recognize that our brains just don't any longer work the way they did pre-FTD and that the "role" of being someone with FTD is difficult, exhausting and depressing just as the role of caregiver is. We also deserve recognition and even deserve some praise for doing as well as we can. I am not asking for an "International FTD Patient Day." I merely want us to feel valuable and loved.

Those of us with FTD just keep plugging along, as best we can, along with the caregivers who are doing the same.

My New Social Life

One day last week, someone asked me why I choose to rely on the Senior Van service to go to medical appointments and even grocery shopping. I threw out all the stock answers: it costs less than driving a car (even if I still had that privilege), they show up in any weather, they give door to door service, they carry my groceries into the house, etc.  This answer didn't seem to satisfy the person asking. I actually stopped and thought about it and said "because it is my social life."

Now, before you start feeling sorry for me and thinking how pathetic it sounds, don't. I have yet to have a driver who was not friendly, helpful and just downright nice. I often have the van to myself, but when there are other riders, we are all in the same boat. Once in a while, a passenger will be grumpy or rude. When that happens, I take it as a challenge. I must say, even if it sounds like bragging, by time I get off or the other passenger does, I have them laughing or at least smiling.

A good example of this happened this week. When I got onto the van at a doctor's office, another woman had already been picked up. She started griping when she thought the driver was going the wrong way. He told her we had one more to pick up. She started complaining that her home was just a couple blocks away so we should go there first. Turned out that her home was much further away than a couple blocks and the woman we were picking up lives in the same apartment complex. I started chatting with her and discovered that we had both lived in the Philadelphia area and we started talking about places and things we had in common there. By time she got off the van, she was laughing and said she hoped we got to ride together again.

My mother always said that if I didn't have anyone to talk to, I would talk to a brick wall. While that might be part of it, it's not the total picture. 

I am trapped in my home most of the time. Between my FTD causing me to not want to venture out and needing to care for my husband with the limitations his Alzheimer's Disease brings, home is where I usually belong. This is not a complaint, just a simple fact. While I do talk to people on the phone most every day, there is very little conversation in our home because my husband is usually sleeping or just unable to converse. That is a big part of why I like riding the van a couple times a week. I get to meet new people and visit the "real" world. 

Unfortunately, dementia isolates us. Not only because we frequently don't care to venture out because of the risk of sensory overload, but because others isolate us as well. I don't remember how many times I have mentioned in my blogs about how family and friends practically run away screaming once they learn of a diagnosis of dementia. I don't believe they are thoughtless or rude, they just don't know how to deal with it. I refer them to 
as ostriches because they must think if they stay away (or bury their head in the sand) the dementia doesn't exist and those of us with the disease are still the way we used to be.

If I hear one more person say, "But, I just want to remember them the way they were. It just makes me sad to see them this way."  I will probably give them a huge piece of my mind. I just want to say "I wish those of us with dementia could do that too, remember you the way you used to be because you used to be kind and loving." Most of us don't even welcome long visits, just a short visit to let us know we still exist and you still care. Maybe bring us some cookies, we can never get enough of those!

Just about all the people I meet on the Senior Van are not judgmental. Most all of us have a limitation or two and we are quick to help each other out. The drivers are mostly people who have retired early and are just out to keep busy because I know they don't get paid very well. The day last week when I visited that doctor's office? I had been dropped off at radiology. When it turned out to be the same driver who picked me up, he asked if everything went okay. He said, "You're smiling so you must have gotten good news?" I had been there for further testing because of questionable results during a prior test. The radiologist met with me and assured me it was a false positive and that all was well and I was thrilled to be able to share my good news.

When I say that riding the Senior Van is my social life, it is indeed a good thing. It is just the right amount of time to visit with someone before I get sensory overload. I love making the others smile because it makes me smile as well.  So, if you live here in Blair County in beautiful Central Pennsylvania, maybe I'll see you on the van!











k

It's All About the Little Things

This past week seemed to be a lesson in accepting and celebrating the little things. It was also about not letting the petty little things drag me down.

On Monday, I needed to visit my glaucoma specialist whose office is 1 1/2 hours from home. A relatively new friend (she did not know me pre-FTD so is more accepting of me the way I am) switched work schedules around so that she could drive me there. Not only did we get a good report and the possibility of a laser treatment to improve my clarity of vision, but we both immediately thought of the same place to go for lunch and enjoyed it greatly.

On Tuesday, I needed to return to the Ophthalmology office to see my retina specialist. Yes, this was bad timing to schedule them back to back, but that's just how it worked out this time. That day brought us a pretty bad snowstorm. My sister was supposed to drive me there for this one, but she is recovering from a broken shoulder and gets anxiety when driving in bad weather. I knew I did not dare cancel this appointment because I knew I needed a shot into my eye to stop a retinal bleed, not something to be delayed by weather.  My awesome brother in law gave up his day and drove us safely through the storm.

On Thursday, here we go with another transportation story. For local trips, I try to utilize our Senior Van Service which is awesome. Door to door service and only $1 or $1.50 per trip depending on the distance. Plus the drivers are extremely helpful. They even carry my groceries or other packages into my house when they bring me home. On this day, there were two other passengers in the van and a really friendly driver. The four of us were carrying on and laughing so much, I was disappointed when we got to my destination. Kind of sad that the van service is also my social life, but these trips actually do brighten my day and my attitude. This service makes it so much easier to accept not being able to drive.

On Friday, I went to see a pain specialist to get nerve blocks into my occipital nerves. It was another day of snow and another day with an awesome van driver. It was just the two of us as many canceled their trips. We exchanged stories and kept each other entertained which helped me to not think about the painful injections I was facing. In addition to dreading the shots, I was dreading the possibility of the doctor telling me there was nothing wrong with me and that it was all in my mind. Getting that answer so many times while trying to get the diagnosis of FTD, has really made me fear hearing it again every time I see a new doctor. My sister even braved the snow to join me at the appointment so I had help with explaining and understanding things. I also had the opportunity to explain FTD to this doctor and he accepted a copy of the NIH booklet so he could read more about it. Advocating and educating about FTD always brightens my day.

To top it all off, my husband did not waken me once through Friday night and slept late in the morning. Not only did he allow me a full night's sleep, but I was able to accomplish some things that required my fullest focus before I had to help him get his day started.

Notice that I skipped Wednesday. That day was fairly uneventful, That is, until I helped my husband get ready for bed as usual. I set his nighttime pills on the counter and reminded him to take them as he was going in to brush his teeth. I did not get even one continuous hour of sleep that night. He either called for me or wandered into my room being extremely confused. I even tried getting into bed with him, hoping to calm him down. He kicked me out. It wasn't until 8 a.m. that I discovered those four nighttime pills still sitting on the counter. I immediately gave him one of the Seroquel tablets and within thirty minutes, he was calm and much less confused. 

Of course, I started blaming myself and asking myself if I could possibly be any more stupid. Then I realized, I was exhausted and not thinking clearly myself. Added to that, I learned a lesson to always check and make sure he has taken those medications before tucking him into bed. So it could be a good thing in the long run.

There were also those petty little issues I mentioned earlier. They could have really gotten me into a foul frame of mind throughout the week. I had two instances where someone was really snarky, demanding and critical... make that three. Each time, I was able to back off for a minute and dealt with what happened in a calm way. I realized that these were things that I did not cause and I was not obligate to "fix" anything. In each case, the other person calmed down without me coddling, wheedling or arguing as I usually would. I simply walked away from the situations or shut off the conversations.

Fortunately, this coming week should not require any out-of-town trips and only one scheduled appointment. Plus the friend who drove me to my Monday appointment will be dropping by to visit one day. My husband really enjoys her company and interacts with her more than he does with anyone else. She is my go-to person to stay with him when I know I am going to be gone on my husband's bad days or if I need to be gone longer than a couple hours in the afternoon. He is much more aware and able to care for himself between about noon to 4 p.m. and I still feel comfortable leaving him for only short periods during those hours.

I end this week pretty darned proud of myself for successfully identifying the good little things that happened, as well as successfully handling the bad ones.  With my FTD, I have had to learn to break tasks down into smaller tasks. Now I am learning to take pride in dealing with the unexpected little things that complicate my life, trying to keep them small and not growing into ones that are impossible to deal with.

On one down note, I really, really wish I could find a way to make people understand the limitations that FTD puts on us. This includes, not just the physical limitations, but also the emotional ones and the difficulty we have to diffuse situations. If anyone has any ideas, I would sure like to hear them. I firmly believe this is the root cause of all the pesky bad little things that try to infiltrate my life. It is even more frustrating that the ones who don't "get it" are often the same ones who proudly tell others that they do.

That issue, of course, is a huge one that I probably will never be able to solve no matter what I try. I will just have to keep focusing on the good little things and continue to try to ignore or walk away from the bad ones. 

I Am the "Perfect Storm"

When I write a blog, I usually wait to post it until the next day so that I can do one more edit. I did that yesterday and this morning, I edited it right out of there. I was writing it from the prospective of a caregiver. This morning I realized that mostly all of us already know everything I had written. The caregiver role sucks, nearly as much as having the disease sucks. Especially when you are doing both.

Do you remember the book and movie The Perfect Storm?  I don't remember the details of how three weather events collided and caused this horrible storm which was misnamed as the "perfect" storm. I only remember how horrific it became.

I realized that I am a perfect storm. The combination of my bvFTD, my role as caregiver for my husband with Alzheimer's Disease and, finally, my constant pain from bilateral Occipital Neuralgia all created it. I say it is a perfect storm because it has turned me into a horrible terror.  Actually, I would say a royal b*tch, but that just seems rude, although a perfect description.

My patience level is about non-existent and what little I have is devoted to caring for my husband. In actuality, for some reason, I have been blessed lately with a lot more patience and understanding with my husband. He has been so confused lately about whether this is our house and if we are allowed to live here and if he is married to me. He keeps holding his wedding ring up to mine and asking me if that means we are married and that we can continue to be married. When I realize he is confused about simple things like this, it is no wonder he is confused by the remote control, folding his towel and so much more. It is a mixed blessing when, after hearing that we can remain married, he asks how he gets rid of the other three women he is married so he can keep me as his wife as he likes me best. It warms my heart all the while it saddens me that he is so confused.

I do seem to need all my stores of patience and energy for him and there is nothing left for anything or anyone else. I have had no tolerance for other people or anything that happens out of the ordinary day. It is a wonder that anyone wants to deal with me at all. At least I recognize what I am doing and find myself apologizing quite often, but it is a difficult thing for others to accept. 

Very few people, except for those of us with the disease, can understand how difficult our lives now are. It is so difficult to accomplish much of anything because it takes our total focus on every little thing as we go about every day life. Often, we cannot even see to the end of a single small task, we have to take it one tiny part of the task at a time or we would not be able to do anything at all.

Caregiving is certainly extremely difficult as well. You have to keep the person with FTD in mind with everything you do. Going about what used to be simple chores and errands are compounded in difficulty when you have to worry about someone else's safety and comfort. It can be totally exhausting to get through some days.

Chronic pain is another thing that many people deal with everyday. It takes a huge toll on your body and your brain. It makes us have to overcompensate constantly to try to block out the pain and continue to allow us to function. Many, many times, it is just impossible to do this and trying to push through is simply self-defeating. It is exhausting, yes, but at least for me, it is also infuriating at this time when I need more energy and concentration to deal with my disease as well as my husband's. All too often, I get to the point when the excruciating pain seems to block out all other brain function. Neither the brain nor the body cooperate when it reaches that point because both are exhausted. Fortunately, it doesn't reach this extreme for me until 5 or 6:00 in the evening so I do continue to be able to push through the day until then.

Just as it is frustrating that seemingly no one else can understand the toll that FTD takes on us and limits everything we can do, the chronic pain does the same thing. With the exhaustion and brain fog of chronic pain it becomes difficult to exist through the day. The most unfortunate part is that no one else can see it. 

When I snap out rude words or roll my eyes at something I perceive to be wrong or a waste of time, I come across as being a rude, obnoxious b*tch. After the fact, I often recognize that I said inappropriate things and often apologize to those I feel I may have offended. Only a few are able to understand and forgive. Those would be the people who know that this is not my normal self and those who experience similar reactions due to the things they are coping with.

FTD, caregiver exhaustion and chronic pain don't always show on people's faces. They are also things that I, and I believe others experiencing it, do not talk about because they know two things: most of us are busy dealing with our own crap and/or they wouldn't know what to do anyway. Add in the ones who think you are faking, are trying to get attention or, God forbid, you are "just depressed" and you give up trying.

I don't think it is the responsibility of others to try to figure out what I am dealing with in order to understand my behavior. Anyone dealing with any aspect of FTD has their own set of circumstances to cope with to be worrying about mine. I do wish, though, that people would notice the dark circles under my eyes, recognize the fake smiles I have on my face and the way my head will jerk forward from shooting pain that feels like an electrified nail is being driven into my head. 

If I have offended any one of you, I do sincerely apologize and beg you to understand that it is not the "real" me you are witnessing. Hopefully the doctors will soon find some way to relieve the Occipital Neuralgia. Just eliminating that one part of my perfect storm will hopefully bring me back to a better and kinder state of mind.

As I have often said, I do not know which role is worse, that of someone with dementia, or someone who is caring for someone with dementia. They each bring many different frustrations but in experiencing both roles, I really can not say which is worse. They both just plain suck, especially when you are doing both while dealing with this horrible chronic pain.

The neurologist told me that only 3 in 100,000 people experience the type of occipital neuralgia I am have. Add in the slim odds of developing FTD and it is no wonder I cannot win the lottery. All my chances of beating the odds were used up with my health issues. Then again, they tell me I need to remember to buy a ticket before I can win.  

Twisted Sensations in the FTD Brain

How in the world can a gentle touch feel like pain? This is a question that has come to my mind many time. At times, if someone touches me, even a gentle touch, I somehow feel pain instead of the gentle touch that the person is intending to transmit to me.

I just spent two days researching this subject on the internet. I am amazed at how complicated our sense of touch is. I will try to simplify it from all that I read. Touch stimulates sensors in the deepest layer of our skin, the dermis. This layer of skin is loaded with a huge number of nerve endings. These nerve endings transport the feelings from touch, whether pleasant or painful touch, are converted into electrical signals. The signals then travel through the spinal column to the brain. 

One type of pain is called Neuropathic Pain which is caused by abnormalities in this system. The problem can be in the nerves, the spinal cord or the brain. Neuropathic Pain can cause people to feel pain from a stimulus that is not normally painful, such as a light touch or cold temperature. Pain in different areas of the body are sensed in different parts of the brain.

I was not able to find any information about this in any specific way to link it to FTD. However, if the touch/pain signal goes through our brain and that part of our brain is damaged by FTD, it leads to believing how it can be misinterpreted. It would also explain why some of us experience this misinterpretation of touch and others don't. FTD attacks different parts of the brain, in differing order, for each one of us, as we all know.

Another cause can be sensory overload. When we experience this, everything can become painful. I often feel like my entire body is being bitten by fire ants or being touched by stinging nettles when there is too much going on around me, changes in lighting or noise. I think all of us with FTD have experienced this and can understand why our brain will misinterpret a gentle touch as another assault on our bodies.

This also explains one of the reasons people with FTD and other dementias are reluctant to shower or bathe. The feeling of the water is not the same for many of us. The feeling of the water hitting us in the shower can overwhelm us and cause us to feel that we are being attacked. That is why some do better with a shower mounted at shoulder level or a handheld shower head. From what I have heard from others, it can cause feelings of pain no matter where it hits the body, but the head is worse. Personally, it is just getting hit in the face with water than bothers me. I have solved that by taking baths rather than showering.

Of course, the pain or fear of the water hitting the body is not the only reason many with FTD are reluctant to shower. A lot of it comes from our feelings of apathy. If you don't care about others, you may not notice or care that you smell bad or look dirty. On top of that, you don't care if it bothers anyone.

I never understood how bad this aversion to showering or bathing can be. When my husband's Alzheimer's Disease started to h progress rapidly, he developed this same aversion. I have tried all the regularly suggested steps to deal with it: a sturdy shower chair; a shower head that is mounted at shoulder level or can be removed to be handheld; a non-skid surface on the shower floor and a gentle shampoo that does not burn the eyes. I admit that I have even resorted to begging and bribing which has never worked for me. 

Now, I realize that if a simple touch on my skin can feel like pain, it certainly makes sense that the shower spray could do the same thing to him. I am still waiting for a magical answer. In the meantime, I am using waterless shampoo and antibacterial disposable wipes to stretch the time between showers. Even this is difficult for him to accept at some times. I should take a moment to tell you about the shampoo "gloves" that I found at CVS online. They are really mitts, not gloves, but they have a gel type product in them that releases as you rub the head. This is the one thing my husband responds well to. He says it is because it feels like I am massaging his head. I am not pushing you to try them, it is just one more item to try until you find something that works for you or your loved one.

I hope I have succeeded in explaining this complicated issue of senses of touch being misinterpreted in an FTD brain. Some days it seems like everything can be affected by FTD. That is one of the reasons it is such a difficult disease to deal with... whether it is the one with the disease or the caregiver. In the meantime, if you see me, please don't touch me!