Who Am I?

This blog is written using my experiences of living with my own bvFTD and of being a caregiver for three family members who had FTD and my husband who died of Alzheimer’s Disease. I have no medical degree. I research subjects and attempt to be totally accurate. However, I do have bvFTD and can make unintentional errors. I do not suggest you make health decisions based on this blog without first discussing it with your, or your loved one’s, doctor.

Who Am I? That is certainly a loaded question. A mother? A sister? A jerk? An expert in FTD? What exactly is an expert? "noun - a person who has a comprehensive and

 authoritative knowledge of a particular area."

If I only use the first part, I would agree that I am somewhat of an expert but only to the point of dealing with the disease of FTD for 50+ years. In case you don't know me, it started with my grandmother when I was in my teens. I helped care for her for a lot of years. Then, my mother whom I cared for her from early in her disease until she died. Then, the same for my favorite aunt. By the time she was diagnosed, I already had been as well.

If I keep going, though, to the second part of the definition, "authoritative knowledge", NO! to the "n'th" degree! I am not an expert.

Who am I? I am someone who has had experience with FTD for many years... as a caregiver and, now, as one who has the disease. Unless they have decided that just hanging around doctors or knowledge of medical terminology is a medical education, I am no authority.

When I answer the questions of others about FTD, my answers are from my experience with family members and the knowledge I have developed from reading about it. That is rather dangerous because, as we ALL know, no two cases of FTD are the same and a little knowledge about something doesn't make you an expert. 

Answering a question about FTD? I am okay with that as long as you don't ask for medical answers. If I answer based on my own experience, that is reliable.  BUT... no case of FTD I have seen can be the same as yours.

For instance, I can tell you of medications that have helped me through these years, but not which meds that you "need" to take. I can even tell you what meds others with FTD have told me work(ed) for them. Please, never start taking a medication, prescription or otherwise without discussing it with your doctor first. You can tell the doctor you that someone has told of something that has helped them and ask if it could be appropriate for you.  I suggest you never go into a doctor's office and tell them what drug you want or need. That is one of the quickest ways for your doctor to decide he will no longer treat you.

This applies to over the counter meds as well. They are still medication and can affect other medical conditions or interfere with the effects other meds.

This applies to herbal remedies also. Of course, the first that comes to mind is marijuana, whether medical or recreational. I am not opposed to the use of marijuana. In fact, many with FTD (and other diseases) have told me that it has greatly helped. BUT, it also falls under the same umbrella as over-the-counter medications. Using it can result in huge issues if it interferes with or affects any other medications. I would be remiss if I didn't suggest you consult your doctor, not for permission, but to ensure it will not negatively impact any other medications you are taking.

When it comes to FTD, there are no "cookie cutter" solutions. If you notice me, or any other person, giving the same exact answer to similar questions, please consider what I have said here. I would not accept a doctor doing that to me, so I would not accept it from anyone else either.

In fact, if you go to more than one doctor, please make sure you tell each one about all of your medications and medical conditions. Just because a medication helps one issue you are dealing with, it can have the reverse effect on something else.

I go back to "who am I?" I am someone who can share what I have seen, or heard from others, of things that have helped. If a caregiver tells me their loved one keeps picking at their arms and legs, I can tell them my experience of tiny little tingles, especially on the arms and legs and are almost like small electrical impulses. I can tell them that these sensations often make me feel like little bugs are crawling on me and that I am constantly looking for tiny critters on my skin.

Even though I know it is most likely from my FTD, I find myself pushing up my sleeves and pulling up my pant legs to make sure there is nothing there. Someone can tell me not to a hundred times a day, but I still will look. I figure sometime I will embarrass my daughter by looking for "bugs" in all the wrong places.

Telling them about my sensations is one thing, but I should not be telling them absolutely that this is what their loved one is feeling. I could tell them what has helped me (be it prescription meds, OTC meds or herbal meds) but I am not a medical expert who should tell them, absolutely, you need to do the same as I do.

By the way, I have not found anything that helps beyond a momentary relief. I have knowledge of the problem. I do not have authority to tell anyone else what they have or what they need to do about it.

I am not sure what I am, but I am certainly not an expert. 

Reminders to Keep On Going

Lately, I have so many thoughts running through my brain that I was basically accomplishing nothing.  It is to the point that I am having more trouble concentrating on any one thing. I could not even write a blog entry last week. I will try to organize my thoughts so they may make sense. Lately, I was feeling totally useless. (Yes, I know I am not.)

Part of the problem was going through all the toolboxes. My father taught me how to do things rather than just doing them for me. When he died, I kept every tool. I also spent a lot of time with tools with my husband as well. He was a recreational racecar driver and I was often the only one on his crew. So, when he died last year, I kept every darned one of his tools. Plus, I had built up a hefty tool kit of my own.

Finally attempting to sort through them quickly became one of those tasks that is too overwhelming for someone with FTD to deal with so I stopped, deciding to ignore it, once again. This was followed by more little things that I struggled with all week... difficult things, you know, like signing onto Zoom, starting the dishwasher, getting dressed...

All these little things just kept piling up until I was convinced I could not handle anything. So I did nothing. After many days, I had to convince myself to get moving, to just do something little. I chose to find some books that would fill an empty spot on a shelf. Out to the garage again to go through yet more stuff. I spotted a box that I didn't remember at all.  By the number of mover stickers on it, it was obviously not opened much, if at all. I pulled it out and was overwhelmed by what was in there.

It seems my husband was a secret packrat! I found artwork from my daughter as a child, all his original Hardy Boys books and more. Right on top though, was a book I did not remember at all. It was titled, "Mrs. Mike." I do remember being called that many, many times and I finally remembered the book. While racing at Watkins Glen, Mike had to run into town for something. When he got back, it was clear he had visited one of the antique stores. He had a couple really nice things for our daughter and the old book for me. I guess I looked disappointed because I clearly remember him saying, "But, it really is about you..."  I do not remember seeing it at all after that.

Instead of putting it directly on the shelf, I decided to read the book. It was written in 1947 and was about a very strong and courageous woman. She moved to the Northern Territories which seemed to be akin to the US back at the turn of the century. It had nothing to do with dementia, but it told of, not only her own survival and how she helped everyone around her.. She fought for the underdogs and stood up for anyone unable to do so for themselves.

My goodness, that was a lot like me! I could have done what she did, as long as I had heat and air conditioning, modern medicine. You know, the necessities of life.  I know Mike didn't read the book in that antique store. I am guessing the salesperson told him the story and that he didn't just buy it because I was "Mrs. Mike." (I actually kind of resented when people called me that. I was, and always had been, my own person not just an appendage of someone else.)

Then, a couple days later, it is Father's Day. Skipping ahead to the few years before he died, Dad called me "His Crutch" because he relied on me for so many things he could no longer do. I was happy to help him. Dad did not have dementia but he did have a brain tumor and he never agreed to surgery because he could not be given a 100% chance it would go perfectly and with no new limitations. Yep, I definitely got my stubbornness from him. Being the independent cuss that he was, it weighed on him that he had to lean on me for support. Thus, the "crutch."

The book and remembering this about my dad both hit me like a brick and woke me up. I am not useless and I will keep fighting for myself and for everyone who has FTD in their life. I may struggle more and more to do it, but I will.

Mike, thank you for the gift. Dad, Happy Father's Day. I love and miss both of you, so much more than I ever thought I would.

Please Be Patient

 I am so tired today that I wasn't going to write a blog entry. Mostly, I was too tired to think of something to write about. Then an idea came to me! Actually, I guess you could say it came to my hand!

My broken wrist is healing nicely thanks to the plate and screws. The x-rays prove that. Except I keep forgetting about the other two breaks on the other side of the wrist. The repaired side is getting stronger every day and I keep exercising it and using it as I can. Of course, that means the outside of the wrist that is meant to heal on its own gets used a lot as well. 

As recently as yesterday, I could nearly make a fist. Okay, I had to force the fingers into it, but it was getting close. I could wrap the fist around two of my fingers on the left hand and apply pressure. Progress! Yep, until I got out of bed this morning. I had used my right hand and wrist too much yesterday so the muscles and tendons seem to have forgotten what they are supposed to do. From experience, I know it will come back as long as I go back to treating it the way I am supposed to: use it but with lots of rest in between, gentle stretching and back to the easier usage.

I can hear you!  I just heard a very loud "Well, duh! You knew better!" I know that, but I was leading up to something. 

Along with the overuse of my hand and wrist yesterday, I overused everything, including my brain. My sister and brother in law are coming to visit so I worked at putting the house in tip-top shape. Then I went to the grocery store with my daughter because I could not think well enough to come up with some of their favorites to have on hand. The store was not crowded at all, I drove the scooter cart and all I had to do was point and Kris would fetch what I needed.

Yes, I know. That is just as exhausting for someone with FTD as physical exercise. Between the housework and shopping, I was done for the day.

All of us with FTD and, hopefully, most caregivers know that any activity can exhaust the brain. It can be physical or mental activities and it can leave us unable to even think much less figure out how to do anything.

I had plans for today. I was going to clean the kitchen. It isn't dirty, but I need it sparkling for my sister. Uh-uh, no way today! It took me several tries to figure out how to use the Keurig for my morning coffee. I kept pushing the power button to get it to brew. I didn't even realize I was turning it on and off. Then, two of our cats were fighting but I couldn't remember either of there names to get them to stop. I didn't even realize that I didn't need their names, it was the raised voice that would startle them enough to stop. Maybe tomorrow I will clean the kitchen... or maybe not!

How do you explain things like this to all those people who don't believe we have dementia? You know the ones, "You look perfectly fine, you can't have dementia!"  How are we supposed to look? Today, if one of those people stopped by, they would probably just accuse me of being lazy or, maybe, faking it. They should have been here earlier when I was trying to explain to my sister how to download GPS onto her phone. I should have told her I would call her tomorrow and tell her.

Unfortunately, this fatigue factor is also difficult for some caregivers, family members and friends to comprehend. "You did this last week, stop being lazy and just do it." or even "Get out of bed, brush your teeth and get dressed. Then you can have breakfast!"  STOP!  That is four things to remember and is three too many. When my brain is exhausted, I am lucky if I can remember how to do only one. Each one is a multi step procedure. While "get dressed" is a simple step for those without dementia, for us it can be: take off whatever you slept in, put them in the laundry hamper, remember where you clothes are kept, find underwear, pants, shirt, socks and shoes. Figure out which goes on first. Figure out how to put on each piece of clothing. By time you are done, you are ready to lie back down for a nap.

I am not exaggerating. It is a difficult concept for those without dementia to understand.  If anyone watched me try to put on a bra on days such as today, they just might understand. I usually with give up and not wear one rather than as for help.

When my mom, before FTD finally ended her life, had taken to showering with her bra on because she could not figure out how to take it off or put it back on. This was not even long past onset. She was still living alone and, obviously, showering and caring for herself. It is also when I figured out she needed more help. I did not yell or even reprimand. I simply went and got a dry bra from her dresser and waited until she finished her shower.

That is what we, or at least I, crave when we become confused about "simple" things. One does not have to be in advanced stages to be unable to do things. We may just be more tired than usual and need understanding and patience.

Different Yet the Same

While I do try to not speak for everyone with FTD, sometimes it is difficult not to. Yes, no two cases of FTD display the same exact symptoms and the disease progresses differently in each person with the disease. One person can need to use a walker or be in a wheelchair to be able to move from one place to the next. The next person can take long walks or even jog with no assistance. One FTD'er discovers hidden or new artistic talents but the next loses artistic abilities they had before they were destroyed the disease. Some can still hear well, the brains of others do not allow them to hear, or they hear the sounds but the brain can no longer interpret the sounds into words. Absolutely everything a human being can do is controlled by the brain.

A good example is the hearing. A person with FTD can score perfectly in a hearing test conducted with just the beeps because our ears can hear fine. I explain it as "My ears can hear, but my brain can't." I become irate when someone says to me, "You just have to do it more often" or "You only have walking issues because you need to get out of your chair and walk more often." There are an endless examples.

I already know the limitations my disease has put on me, I don't need people telling me I just need to pay attention. I do not need people accusing me of being stupid or lazy. I often feel that way on my own even though I know I am not, so please don't remind me.

Last week I visited the office a physician I had not seen before. The physician's assistant came in first to get my history and explain things to me. With everything being automated, he was typing into a laptop the entire time so he was not looking at me. Since he was in front of me, but several feet out of his visual field. He was rattling off the same information and questions that he does dozens of time in just one day, so it was rapid-fire.

On that same trusty laptop, I suspect it clearly said "frontotemporal degeneration" or, at least, "dementia." I finally, politely I hope, said "Excuse me but I just cannot hear you." I explained that I had FTD and if I could not see him, I stood no chance of understanding." He was gracious and apologized. He apologized and took a step closer to me and started talking much more loudly. I kept the irritation in and laughed that he thought he had to speak louder. A HUGE but here... when he started dumbing down his vocabulary and defining one or two words in every sentence, I lost it.

I was good, honestly I was. I didn't scream at him, jump up and down, slap him or walk out. I certainly wanted to but instead said (okay, I said it very loudly.) I am NOT STUPID! I only need for you to speak clearly and at a normal pace instead of rattling off all the things that I am sure you get sick of saying." He left the room quite quickly after that and, most likely warned the doctor before he came in. 

Fortunately, the doctor was somewhat familiar with FTD. He is a gastroenterologist and has dilated enough esophagus's to know at least that issue the disease can bring. I actually loved him! I did not complain about the PA but, if I experience it there again, I will. Didn't seem wise to complain before he sticks scopes up and down inside my body!

I wish it was only PA's and Physicians or other medical providers who act this way with someone who has FTD. Unfortunately, it is rampant.

I cannot count high enough or remember well enough to tell you how often I am told things such as "You can do that yourself, you know how!" which develops into a shouting match and I break down crying and apologizing profusely. When I started to be able to cry again, after several years of FTD preventing it, I thought it was a good thing. Nope, no way! Crying is no longer cathartic. Throwing things at someone is not very helpful either. Fortunately, my aim is off because of my double vision so I haven't hurt anyone... yet.

I guess I should clarify. I don't recommend yelling at healthcare professionals, caregivers or family members. It doesn't help these relationships at all and can leave you more upset than you were by whatever it was that happened. Yep, I don't recommend that but cannot tell you how to control outbursts that come out of total frustration. I haven't figured that one out yet.

To clarify this to family, friends and caregivers, I am fairly certain that it is not just me, this one person with FTD, who cannot control the outbursts. I know I cannot stop them, it is the disease that robs us of that control. I will not say "It's not me, it's the disease." I hate that expression! I am a person, a human being, and do not deserve to be defined by my disease. If you know someone who is missing a leg and cannot climb stairs in that manner? "Oh, don't mind him, it's just his condition." Would you tell that person, "You know you can do that, just do it"???

Well, that explains us. No, you cannot see a missing body part on us. However, you should be able to relate to the fact that there are parts of our brain missing.

Now, why do I scream these things at a family member or friend but don't at those like the PA that started me into this rant? That is easy. Just as a child whose teacher tells you how kind, helpful and sweet your child is and makes you turn your head to see who is behind you because you are positive the teacher cannot be describing your child. Yours is the one who comes home grumpy, grunts a few words or explodes at you and when you ask a question and refuses to do a simple chore. How can this be? Simple, because if s/he acts out at home, s/he probably knows there may be repercussions but that you will still love them. So that is where they are comfortable to let out their frustrations just as we are.

But, I also don't like being referred to or treated like a child. I may, at times, behave like a child but I am not one. Yeah, caregivers can't win some days either!

Better Informed but More Frustrated

 If you have any doubt if I have FTD, let me tell you... I just spent 2 hours trying to get logged in. I have no clue what I was doing wrong. I know I kept having to log into Google and enter password. I was looking at my list of passwords, but it wouldn't work and I ended up having to change passwords about 5 times and resetting my privacy settings. Whatever, I don't remember it all, but I am here. Yes, that sounds excessive and it was. I know it was user error, I just don't know what error triggered it. More about my loss of technology ability later.

Many of you know, but the Association for Frontotemporal Degeneration (www.theAFTD.org) has annual education conferences for all interested in FTD, from those with the disease to medical professional and more. I, and if I may speak for all of us with FTD, look forward to the next one as soon as we return home. It is a wonderful opportunity for those of us with FTD to meet, learn, share information, and have fun. To meet and hug and then spend an entire day with others with FTD is priceless.  We can let our hair down and not worry if we aren't using the right words or stumble across the room. We can be ourselves. Then came COVID!

Last year's conference was cancelled due to travel restrictions, size of gatherings and risks of infection. We were REALLY looking forward to this year's but it met the same fate.

The AFTD responded by planning two days of an online virtual conference. We were given just as much information as we did when it was in person, thanks to many wonderful experts on FTD. It was obvious that everyone with the AFTD must have put in a huge effort and utilized a lot of technical abilities.

There was enough information shared that I had to feel a bit hopeful. Let's be realistic. I know there will not be a cure for me. We all know that even when a cure or treatment is found, it will need to go through years of testing and trials to get government approvals. I heard enough, though, to be hopeful for the next generation. And, that was just the first day!

I am blaming the progression of my FTD for this next part. The second day, Friday, was again loaded with presentations by many experts. The information seemed more geared to everyone, except those with FTD. I will admit that I was exhausted after the first day which took its toll on my brain functions. Fortunately, there was a link on the screen for technical help. I needed help. 

My screen was frozen and I had no clue what to do. I clicked on the link and was answered immediately. They asked what operating system I was on. I had no clue. They said if I could switch to Google, the broadcast would be better. I thought I was on Google but they could tell I was on Microsoft Edge. Kind of scary they could know that and I couldn't. So they suggested I go ahead and download Google. I think my response was an intelligent, "Huh?" Fortunately, there was an alternative to just click on the reload icon. That I could do and it worked. I had to ask for help a couple more times from them and twice from my daughter who just kept saying "Stop crying!" She wasn't being mean or thoughtless, it was that she could not understand what I was saying. 

Lovely, I was left feel stupid and useless. This did not help my mental state at all! To add to my mushy brain function, the information being presented did not seem geared for those with the disease.  A couple presentations were about the care team you should have. I wonder if this was mainly geared to caregivers and family members because it sure didn't help me.

Yes, it makes total sense that you should have a social worker to coordinate things and find things and ways to ease the way. We also were to have a neurologist, a family doctor, any other needed physicians, a caregiver who comes to the home and helps with things like housework, bathing, etc. Someone was to coordinate medical appointments and respite for the family member who whoever provides the constant care. I think I am forgetting a couple, but it doesn't matter.

My thoughts were, "How do I find these people?" "If I do, how the heck am I supposed to pay for them?" "How am I going to keep track of all these people?" "What are the odds I find that many people who have knowledge of FTD?" I don't know, maybe the social worker does that. I also worry about being stolen from. The part time helper I finally got when my husband died and I was still in PA, was robbing me blind. Sob story after sob story, I would help her out with money I couldn't afford. Eventually, she would come over, take out the trash then sit down and watch soap operas, then wait for me to fix dinner. I knew she had helped herself to several things in my home, but it wasn't until I was moving that I realized how much was missing. She even maneuvered me into signing my car over to her. So how do I find a "team" I can trust?

At one time, when still living, alone, in PA, I was offered assistance through the county's Senior Services program. A social worker visited and explained all that she could do for me. The main thing was she would coordinate my care and find help for me so I could stay in my home. BUT, I would have to pay, if I remember correctly, $270 a month for her services. Then I would have to pay the going rate for all the help she found for me which ranged from around $10-25 per hour. Some even higher. I had to try to educate her about FTD on top of it. She had no clue. The worst part was that I never heard from her again, even after paying the first month of her services of $270. This was not a fly by night company, it was the county's answer to the state mandate of a Senior Services organization.  They did provide van service for seniors at a very low price, but I had already set that up for myself.

I understand that if you are eligible for Medicaid in your state, most of these things are provided at no or little cost. I am on Medicare but I receive around $150 a month too much Social Security to receive Medicaid. That whopping amount wouldn't even have paid for the social worker. 

I am okay with that. I manage fine now that I am living in my daughter's home.

However, being told I need to have this "team" broke me. I felt even more stupid, useless and worthless. Why cannot I not find these people? I don't even have a doctor who understands FTD, except for my new gastro enterologist and, fortunately, my retina specialist. . If I could travel to one of the research medical facilities, I could maybe find what I needed. But what good would having these professionals 150 or so miles away with no way of getting there. My daughter's employer is already complaining about the time she has to take off for my local appointments.

To manage this myself would require more searching for and arranging transport, to say the least, than I am capable of. Right now, I am not even sure I could research these things on the internet. I couldn't even switch between sessions for the conference. To be perfectly forthright... today, when logging in to start this blog, it asked for my email address. I panicked for about ten minutes. What is an email address? I tried putting in just about anything. I finally thought I had the answer and got up to get my list of passwords. I tried putting that in which of course didn't help either. I finally figured it out. Part of this is because I am still tired from the two days of conference. If anyone has the answers, I would be glad to hear from you!

I have utilized technology my entire life. My first paid job was operating computer equipment. I loved it and it was definitely my niche! I went on to operate huge computer systems, back in the days when they filled an entire room yet didn't have the power this laptop has. I programmed computers. In later life, I was an expert in an accounting system and was on the company's support list for others to call for help.

Now, I cannot remember what an email address is?

I still want to profusely thank the AFTD for their monumental efforts to put together this virtual conference. The information presented was priceless and very much appreciated. Next year, it hopefully will be an in-person conference so that those of us with FTD can receive the social value as well.

FTD Mistakes and One Phenomenal Book

 I hope at least some of my blog followers noticed that I was not posting new ones! I have a good excuse and because of it, this one may be short because I still cannot type very well.

I have had a few FTD "moments" lately. Actually, I call them "brain farts." These are moments when I seem to forget I have FTD and think I can do anything I used to. Most of the time, these instances end up harmless and are things we just laugh at.  Not this time...

My daughter has a very tall bed and a squishy foam mattress. I wanted to talk to her, so I climbed up on to the frame at the foot of the bed. I have tried many times to get up onto this bed, but never succeeded. My FTD brain decided that I could use that to step up onto and then I could get onto her bed. My FTD brain was oh so wrong.

 Before my daughter could say "NO!" I was standing on the bed frame. It looks like a step up onto the bed. Really, though, it apparently is a launching pad! I flew down and landed on my right hand and then the rest of me landed. My poor wrist took the brunt of it all. It instantly swelled and I was black and blue from fingers to nearly my elbow. The worst part? Six feet away, on the side of the bed was a stepstool. I guess it was two brain farts.

Anyway, this tale is taking too long. One cast, one surgery, a non-removable splint and, now a removable splint later, I can finally use my right hand a bit. The bad thing still on the horizon, though, is there will be yet another surgery to remove the metal bar and screws when it has healed.

The good news is that the doctor, anesthesiologist, nurses and the other multitude of staff truly responded to my FTD. They allowed my daughter to be with me at every appointment and procedure, except the actual operating room. The anesthesia team spent about 20 minutes researching for a pre-op drug other than Versed and Fentanyl (this one is not because of FTD, it is a personal allergy) and never acted put out. My daughter and I, of course, educated everyone who entered my room about FTD

Any way, this is a good incident to show FTD brain mistakes. 

Now, I had several other things to write about, but they can wait until another day...

If you haven't seen or heard about a new book about FTD, I must tell you about We Danced. It was written by Scott M. Rose whose wife developed and eventually died from FTD. I rarely read books anymore because it is difficult with FTD. I read this one in two days, over 300 pages. So you should know how awesome I think it is. Also, fortunately, the text is in a larger font.

Scott began the book by telling of their beautiful love story. He verbally painted a portrait of his wife, Maureen, their romance and marriage. Sadly, Maureen was diagnosed with the Semantic PPA variant of FTD. He stepped up and became her caregiver. Their love never wavered. I can't tell you how many times I laughed and how many I cried.

He had never heard of FTD but he learned everything he could, and more. It seems to me that he followed his heart and love for his wife and mixed it with what he could learn and his common sense. I have been calling it a "primer for caregiving" for all.

They both kept journals and Scott has included passages from those as well as some of the blog entries that he wrote after her diagnosis. It is indeed their personal story of love and caregiving.

I have never gushed about a book like I have We Danced. I did have the pleasure of briefly meeting Scott at the AFTD Conference a couple of years ago, but never knew him. I never even met Maureen. I sure wish I had. After reading this book, I feel like I do.

I am not trying to boost sales, but I would be remiss if I didn't include that it is available on Amazon in hardcover, paperback and Kindle.

I apologize if any are offended by my gushing over someone else's book. However, there is no way I can keep quiet about it. That is just how good it is and how much I loved reading it. Plus, it proves that FTD and love can exist together. (I asked Scott for permission to write about his book, he humbly agreed.)

Wrist-permitting, I will write about the other things I intended to write about today.

My Mind Rambles...

It takes a lot of energy and focus for someone with FTD, myself included, to explain things to people. I often struggle to explain what FTD is, what it does to me and how difficult it is for my family to deal with it. Someone recently asked, "How on Earth does your daughter work full time and still be able to care for you?" If you have been following my blog for any length of time, I am sure you understand that my reaction was one of anger and frustration.

We had been chatting on Facebook for nearly an hour by time she asked that. Reading back, I do believe all of my answers were somewhat intelligently written and most of the words were even spelled correctly except for when I was typing too fast and the wire from brain to fingers got confused.

I cook for both of us. I clean the house (no more than I have to) and do my own laundry. At least until late stages, many with FTD do not sit around, unable to contribute to our care. Absolutely, my daughter's life has changed since she convinced me to move in with her after my husband died. Absolutely it has, some for the better, some for the worse. Caring for the caregiver is essential, but what the person asking about her welfare obviously didn't realize is that this last sentence is true for me as well. My life has also changed, some for the better, some for the worse.

Fortunately, I held my tongue long enough to find some humor in the situation. I was able to answer by saying, "She does it quite well." Our chat ended shortly after that. I am not sure if I ended it because I didn't answer how she was expecting or if I became a bit testy after that. I suspect the latter.

Frontotemporal Degeneration definitely alters lifestyles of those with FTD, their family and caregivers. I know I am not easy to live with. (Truthfully, though, I never have been.) With FTD, though, I rarely want to go out anywhere nor to visit with anyone. I forget things. I often struggle to make civil conversation. If I am asked simple questions, maybe like, "I am making a list, is there anything you want from the grocery?" My answer is usually a dumbfounded look. I have to sit and think, go through the past few days to remember what kind of things I may have used up.

It shouldn't be difficult. My needs are simple and boil down to coffee, tea, agave nectar, half and half, frozen waffles, oatmeal and granola bars. Oh, and ice cream. She always keeps us provided with fresh fruits and veggies and healthy snacks.  I have meal kits delivered because they make it easier for me to still be able to cook and they are healthy meals... low fat, low carbs and fresh, healthy ingredients. Plus they are premeasured and simple recipes laid out step by step. Everything is included, so I don't need to worry about the groceries I will need for dinners. Yet it will take me 20-30 minutes to figure out if I need anything for the grocery list.

I try to do housework, one task a day. One day last week, I knew there was something I intended to do that day but couldn't come up with it at all. I mentally walked through the house but, nope, couldn't remember. Later in the day, I was talking to my sister on the phone and she said something about her floor. Aha! That was it, I had intended to mop the kitchen floor! We cut the call off immediately so I would not forget again.

From talking with others with FTD, I know that is how an FTD mind works... in bits and pieces, in forgetting and remembering, in needing to do things right then before the thought drifts off into black holes.

It isn't easy. As the disease progresses, the black holes multiply and grow. Unless I must venture out of the house, I am always dressed in comfy clothes. Usually flannel pants and a hoodie or tee shirt. Sometimes I struggle to remember to put clean ones on. I swear I have the most organized clothes closet only so that I can easily find something to wear and, hopefully, that the colors match. I learned over these FTD years to limit my choices so there are not a huge number of clothing pieces to choose from... except for plenty of hoodies and flannel pants. This should just take me back to my childhood when my father believes no one should need more than 4 or 5 outfits to choose from. It did matter then due to peer pressure. Now, not so much. My peers have FTD so they don't care any more than I do.

I do remember to do my laundry but it is more difficult to remember to wash my bedding. I eventually get there and this crap doesn't matter. It used to matter to me, but no longer. If I am dressed in mismatched clothes, as long as they aren't clashing horribly, it doesn't matter to me and not a lot to my daughter. If it bothers anyone else, so be it! Now, part of this attitude may be helped that I don't know more than a small handful of people down here in NC. It is easier to not worry about what people think when they are all strangers.

For those with FTD, their family and their caregivers, it helps if you learn to fly by the seat of your pants. It helps tremendously to be as flexible as possible. It is more than enough stress to worry about the important stuff like taking meds, remembering to go to the bathroom before it's too late and brushing the teeth.

If a day or two go by without me having a balanced meal, it doesn't matter. Much longer than that, it may start to be concerning. If I don't eat protein for a couple days or fresh fruit and vegetables or anything else we "should" eat, it doesn't really matter. If I want to sleep for 12 or more hours in a day, it matters but only because I need that much sleep that day and if I don't get it, I am in for a bad FTD day.

To me, the bottom line is that FTD is killing me anyway. So why stress about if I eat properly, sleep too much or spend an entire day petting the cat or dog? Keeping a routine can be necessary for the family and/or caregivers but no so much for the FTD'er.

Today's blog is also an excellent example of the wandering mind of someone with FTD. At times, an FTD'er is like someone with AD/HD. You must watch out for those squirrels and I seem to have plenty of them jumping into view today. 

I hope that, despite my wandering mind, I have said at least a couple things to help you cope a bit better.

Ramblings of the Exhausted

I don't want to have FTD anymore. Not that I ever did, but it just keeps getting more difficult. I often say that there is no way that anyone who does not have FTD can understand it. There is no way to explain how having the disease feels.

Family members, caregivers and professionals often insist that they do understand. Nope, sorry, unless you have it yourself, you don't!  This past week I have experienced a lot of the vast spectrum of feelings involved with having the disease.

Just two days ago, I participated in a forum organized by the Association of Frontotemporal Degeneration on FTD. It was a virtual presentation to the Food and Drug Administration. The purpose was to educate them on FTD, its effects, the difficulty of getting diagnosed and, most of all, the lack of available treatments and resources for those with FTD, their families and caregivers.

I was happy to participate and provided a prerecorded testimony on my and my family's history of the disease, trying to explain to them how it devastates families and how it can continue for generations.

I did not expect to be affected very much by watching the entire presentation but hearing so many stories of frustration, destruction of lives and fear of the future left me exhausted... mentally and physically.

It seems that it is difficult to anyone, outside of the disease, to understand. Once the event was over, they could jump back into their lives where they left off that morning. It isn't that easy for anyone involved in the world of FTD. It can be difficult for them to comprehend how it can leave us mentally and physically exhausted. "Come on, it's been two whole days, why are you still exhausted from that?"

In my case, after a while, I will realize my daughter is talking to me and that I had missed most of it. Of course, my reaction and next word is "Huh?" Sometimes she will repeat it, other times she will mumble under her breath and, usually, somewhere in between. No, I cannot understand what she is mumbling, except for a word here or there. It doesn't matter what the words are. As soon as I said the dreaded "Huh?" I knew she would be upset. She is not being mean and she isn't angry. She is simply as frustrated as I am.

I have written about this inability to comprehend spoken words. If an FTD brain is not aware that words are coming, it often takes long enough to know and, by then, you have missed something. 

The frustration for everyone other than the FTD'er is akin to living with someone with a hearing problem. It is not the same, though, because those problems can usually be helped.

I do realize I mentioned this is a recent blog. Sorry I got lost on a tangent again and I hope you are still reading... The other thing that has me emotionally exhausted is hearing of three different situations involving an FTD'er and the current circumstances being thrust upon them. I will not even begin to explain the individual issues, it is not my place. You will just have to trust me that, while each is totally different, they all left me concerned, sad and angry.

In two of the cases, it would be easy to blame it totally on the caregiver. In the past, I probably would have. This reaction usually comes from the knowledge that the caregiver can change the circumstances while the FTD'er cannot. But, is that really true? In so many undesirable situations, it may seem to be impossible. When a caregiver or family member is already bogged down with worry, lack of sleep or just plain exhaustion from all the seemingly unending caregiving acts, it can be nearly impossible to come up with solutions that would have come easily before dealing with FTD. Yes, in an ideal situation, the caregiver would have endless energy and patience.

Sometimes I wish that my total apathy and lack of empathy would come back. The years I spent without those were easier. On the other hand, I don't really want to lose them again. I did not feel like myself knowing that I should care but didn't. 

Now, I am wondering if in circumstances that are intense and seemingly impossible to do, if that forces apathy and lack of empathy onto the caregiver. I am not believing that this is true for all caregivers. There are way too many truly bad caregivers out there. You know the ones... the ones who say horrible and hateful things about their FTD'er, the ones who leave their FTD'er home alone for hours even though they know it is not safe, the ones who ignore signs and symptoms... I do not need to go on. 

I don't know about you, but I can understand how caregivers could reach a breaking point and just not care as much as they used to or even as much as it seems they should. Now, it would be easy to say that they should ask for help. Again, yes, in an ideal world, it would. Unfortunately, most of us know how impossible that can be. If you can't even get family or friends to stop by and visit with the FTD'er for an hour or two so you can get some things done or at least to sit down and catch your breath, what is the likelihood of anyone being willing to come and really help?

Those of us with FTD should better recognize how difficult it is for the caregivers. I fear, though, it is often impossible for many caregivers to understand how difficult it is for the FTD'er. We often cannot discern the mood and comfort level of the caregiver. We don't understand subtleties like that. We don't understand sarcasm or have the ability to recognize joking. 

I know how, when someone is dismissive or reluctant to do something I need, I don't have the ability to realize that they might be tired from a day's work or because the store was crowded. If after coming home from the grocery store they say, "It took forever because I couldn't find the things you wanted," What I hear is something like, "It's your fault it took me so long because you wanted all those things!"  Yes, when the paranoia that FTD brings is the filter through which you hear everything, it can cause huge misunderstandings and hurt feelings... on both sides.

I do apologize for rambling. I tend to do that vocally when I am exhausted and, obviously, it is the same when I am writing! Oh, wait, I forgot to say that caregivers don't always pick up on the subtleties of what the FTD'er says or does. Okay, that is for another day...

Unanswerable Questions

If you know me, you know I talk a lot. When I was a child, my mom said that if there was no one for me to talk to, I would probably talk to a brick wall. She was mostly right except that, instead of the brick wall, I it is more likely I would talk to myself.

Because of this, I was stunned twice this week when I was left with absolutely nothing to say.

The first was when someone asked on Facebook about what it physically felt like to have FTD. I can't remember ever thinking about that before. Sure, I often think and talk about the emotional, psychological and medical issues but physically, not so much.

Of course there are the usual physical issues like falling, tripping, loss of strength and energy, tremors and general lack of coordination, but those lead more to emotional and mental frustration, embarrassment and discomfort. .

There is pain involved when falling but, thinking about it, I kind of don't even focus on physical pain. Except for the FTD headaches...  there is no ignoring those. My answer to the question was something like, "Huh? I don't know!"  It hit me as strange. I know I do experience physical pain. When my muscles are weak, my arms and legs hurt if I push them to keep going. They will often feel heavy and uncomfortable but it is the mental frustration that comes to mind, not so much the physical discomfort.  

I am usually covered in bruises from bumping into things, like furniture, not only from falling. If I look at the bruises, I know they should hurt, but I don't feel it. I am guessing that the pain doesn't register with my brain. To further confuse things, there are times that someone will gently touch me and I feel it as horrible pain. I can grab a hot pan without a potholder, but don't touch me!

One day this week, my daughter came to my room because it was past the time I am usually up and about. She asked if I was okay. I answered that I didn't know, that I just felt like something was not right. She inventoried the possibilities and I just kept saying "I don't know." She encouraged me to get up and see how I was, which I did. It wasn't long until it was very apparent what the problem was and it related to scallops we had for dinner the night before. I won't go into the physical details, but there was no doubt that the scallops were off.

How could I have not known? My body had to be feeling at least discomfort and probably pain. Between this experience and drawing a blank when asked about physical feelings of FTD, it was an "Aha!" moment.  I still don't have an answer. Yet, when trying to think about it, all I come up with is examples of when I am physically worn out enough that I cannot keep going. I will go for days of simply existing from the lack of energy.

That would have to be my answer of how FTD physically feels, "Exhausting."  It is exhausting both physically and mentally which leads to a lot more emotional and mental issues that drag me down more than the physical.

The second question of the week was when I was getting my Covid vaccine. The nurse, after my daughter and I needed to explain my FTD due to some confusion I was experiencing, turned to me and asked, "So what do you do to keep busy?" What came to mind is that most days, just continuing to live is enough. Knowing she would not understand that, I said "I guess nothing."

She turned to my daughter who, fortunately, has a much quicker thinking process. Paraphrasing here, she kindly said that I still do pretty much everything that I used to, just not as well and much more slowly. She went on and explained how much of my energy goes into advocating for FTD and for those of us with FTD. God bless this daughter of mine! 

My reaction was, "Huh, yeah, that. I guess I do have things I still do." The truth is that I have so much frustration that I CAN'T do everything I used to be able to, I don't really stop to think of what I still CAN do.

So what does having FTD physically feel like to me? The answer would have to be it makes me feel totally exhausted because doing anything most often requires more energy and ability than FTD has left me with. When I get busy, I forget to take breaks, rest and drink water, which all add to feeling things physically. Everything else is frustration. Even when I experience pain or discomfort, the frustration that I do feel those is stronger than the actual physical feelings. How can I explain to anyone that FTD leaves me so physically and mentally exhausted that I am unable to know or  express how I "feel"? 

There are just things that FTD does not allow me to understand, feel or express.

FICKLE!

fickle

[ˈfik(ə)l]

ADJECTIVE

1. changing frequently

   synonyms:

   changeable · variable · volatile · mercurial · vacillating · fitful · irregular

I have often referred to FTD as being fickle. It is fickle in its choice of who to afflict... its vast array of possible symptoms... who gets what symptoms and in what order... the speed of progression... the ability of the patient and the caregiver to cope. I do not have to continue, you surely already know.

The problems of this are endless. Misdiagnosis often occurs because there is no list of signs and symptoms that physicians can refer to. It is common for family, friends and even the patients to refuse to accept the diagnosis because the one with FTD can seem normal in many ways. For instance, I am often asked, "How can you write a blog if you truly have FTD?" 

The symptoms of FTD can seem fickle in any one person. The symptoms can come and go. They can vary from day-to-day, hour-to-hour, even minute-to-minute. There are many variables that can cause these fluctuations, including stress, amount of sleep, amount of disturbances to environment, over-stimulation and nearly everything that may happen over hours, days, weeks or months. 

There are days when I appear somewhat normal, especially to those who do not know me well. If someone does not see me walk very often and, when they do, I seem to move along just fine and they then hear me say that I have difficulty walking, fall often and at times my right leg will drag, they tend to not believe me.

Yesterday, one of our cats stole a piece of food from me. This little rascal is so fast, he can hop up and grab something from my plate before my brain can recognize what is happening or what to do about it. Yes, most days I would have realized he had stolen it and known to catch him to take it away from him. At that moment, though, I froze and just looked between him and my daughter. She reacted and did what I should have done. However, I could not help but realize that she was upset with me. I had been suffering from a headache for three days. That left my reactions slower than normal and the connection between what I was seeing and my brain was just not in working order.

One day last week, I managed to cook dinner. It wasn't a complicated meal, but did require multiple tasks and multiple pans. By time the food was ready, I did not have enough strength left to dish up the food for me. I had to ask my daughter to dish it up. How do you explain that to someone? How do you explain that, on occasion, no matter how delicious the food looks and smells, you don't have enough energy to eat it?

When people tell me that I look wonderful and how I don't seem any different than I ever was, I wish they could see me when I cannot do things like figure out how to put a bra on because I cannot understand it is twisted. I knew something wasn't right but could not figure it out. I never did put it on that day. Good thing I was at home all day!

The bra incident reminded me of the time, years before she died due to her dementia, I realized my mom was showering with her bra on. I did finally realize that she was not taking it off because if she did, she would not be able to put it back on.

When a caregiver or anyone working with someone with FTD, it really helps if they are able to realize that symptoms can pop up anywhere, anytime. Just as an example, if someone with FTD is seen picking things out of soup they were given to eat, it is better to try to figure out what is happening rather than snapping "You know better, use your spoon!" Are they having trouble with their hand shaking enough that it is spilling? Do they recognize they have a spoon to use?

I am not being flippant here. Yes, those of us with FTD can be looking right at an object and not see it. The eyes are seeing it, but the brain isn't. By the way, if they are struggling with using a spoon, sometimes a weighted spoon will help reduce the shaking that may be causing the problem. I bought mine online.

Those with FTD often still have the ability to pick up on tone of voice and mannerisms. After experiencing this enough times, it is easy for us to give up. We believe that no matter how hard we try, we will still be disappointing the caregivers and family members. There is also the risk of us actually believing that we are stupid and/or worthless and giving up.

Since moving in with my daughter, she has implemented a rule that I am not allowed to say "I am stupid" or "I am worthless". When I am feeling like that, I am only allowed to say, "I hate this disease!"  There is usually an adjective in there describing the disease that I will abbreviate as "F...ng". 

That is just a small thing, not always easy to adhere to, but it does keep things in perspective. I am still worthwhile even if I have this f...ng disease! This is a good premise for everyone dealing with FTD... FTD'er, caregiver, family member or friends... everyone!

There can be no perfect caregiver, but my daughter comes pretty darned close. If she, at times, gets frustrated at my limitations, it is totally understandable. No one dealing with FTD, whether the one with FTD, caregivers, family or friends, can possibly be perfect. Just as FTD is fickle and unpredictable, all human beings are as well. 

Communication

When I resumed blogging last month, I vowed to myself that I would be more considerate of the feelings of caregivers. I am trying to always keep my caregiver experiences in mind. At times, though, it seems like I am picking on caregivers because they are the ones who are capable of change while the FTD'ers often are incapable of changing.

Communication is extremely important in any situation. With FTD, it becomes even more so. Talking to each other becomes a challenge for the one with FTD as well as the caregivers.

One of the biggest obstacles is that it is very difficult for someone who does not have FTD, even for the best and most experienced caregivers, to understand that while it quite often comes across as though we are ignoring you. Most often, it is quite the opposite. We do try to hear and understand what is being said to us but, as we all know, an FTD brain doesn't work in the same way as a healthy one.

The first issue is that our brains, as well as our bodies, often are slower to react to anything.

When someone talks to me, it takes at least a couple seconds to realize someone is talking, then a couple to realize they are talking to me. By then, the speaker is several words into what they want to say and those are the words that usually clue you into what the subject is.

So, by now, I am lost. I truly am attempting to hear and understand all the words but this is often difficult to do when you have already missed so much of it. I will give you an example: The other day my daughter said what I interpreted as "... ... blah, blah blah... the powder room still is really pink." Later, I remembered what she had said and went to look in the powder room because I did not remember putting any pink in there because it wouldn't go with my color scheme. I didn't see any pink. When I came out, I said "The paint in the powder room still makes it stink." She got upset and snapped "I just said that a few minutes ago!"

I quickly left the room, then returned and told her what my brain had heard. She looked at me dumbfounded but at least we had a good laugh.  

I had not ignored her at all, it was a perfect example of how to not communicate when FTD is involved.

The best way I have found, back when I was a caregiver and now with FTD, is to make sure the FTD'er is aware you are about to talk to them. The trick is to make sure they know you are about to say something. If you are nearby, a gentle touch and looking them in the eye is great. I find that if someone goes to the trouble of doing this, I know to pay attention. If this is not possible, it helps if you say a few words before you say anything on the subject. "I want/need to tell/ask you something," just a few words for their brain to kick into gear to give them the best chance of hearing you. Ideally, you could do both.

Another thing that helps is for the speaker to take a couple good breaths before speaking to ensure the tone of your voice can not be interpreted as hostile. Just the other day, someone told me how his caregiver had verbally attacked him. When he told me what was said and what had led up to it, it was easy to see how this could have been intended as a helpful conversation yet interpreted as a hostile one. I probably wouldn't be speaking in a pleasant tone either but if she had paused and breathed a couple times, she may have been able to control the tone of her voice. It may have kept things calm and not led to the hostile afternoon he described.

Volume and tone of voice make a huge difference and it would be ideal if both caregiver and FTD'er could control their own. Unfortunately, in real life, it often doesn't work that way. Often, I believe the caregivers, as well as family and friends, try to speak more loudly to me. They think that I am not hearing them and that if they speak louder, and often slower, my ears will hear them. If only it would be that easy.  Hearing aids are often of no help either because the issue is with the brain, not the ears. 

Communication is not limited to speaking. Gentle touches, even gentle hugs, communicate volumes. To me, they say, "Hey, I still care about you." Sometimes though, even if the hug is gentle, it can feel too confining. With me, hugs are not the way to apologize to me because I am probably still hurt and/or upset. But gentle hugs or touches are often the best way to say hello or I still love you or I'm sorry you were upset.

One more thing, listening is as big of a part of communication as speaking. There is nothing more upsetting to me than when someone finishes my sentence, thinking they know what I am going to say but that they can say it more quickly. That is often true and more often than not, the finish it correctly.  It can also be interpreted as "you are so stupid you can't even get the right words out."  You don't need to tell us that, we already often feel that way ourselves. Please believe me, it is horrible to feel that way. In fact, my daughter made it a rule that I can never say, "I hate myself" or "I am so stupid!" Instead, I say "I hate this disease!" It has helped because it reminds me that I am not stupid nor worthless. Simple things often do help.

Do I think it is possible in all circumstances to follow all these suggestions, especially when in a hurry or there is a concern? Absolutely not. Believe it or not, I yell sometimes and can not always follow my own suggestions. However, if you do these things most of the time, it won't be as frightening or depressing  to the FTD'er when there is yelling and frustration.

Why Do Doctors Not Understand?

 I know fully well how difficult it is to understand FTD, especially for those who have never heard of it before. I know I didn't understand it when I was first experiencing it.

What I don't understand is why many doctors do not understand it or assume that since they know about Alzheimer's they know about all dementias. Before I go to a new doctor, I ask if the doctor knows about FTD. My current family doctor assured me that she knew of it but admitted she didn't know a lot but was willing to learn. The first visit to her office was okay. Despite Covid, she allowed my daughter to go in with me which helped and she willingly sat and listened and took a lot of notes. 

At the end, since it was the first time we had met, she asked if she could schedule me for a revisit in three months. She also handed me new prescriptions for all my medications for issues other than FTD because I had recently moved from another state. She gave me a 3-month supply with a refill for another 3.

I returned for the 3-month revisit and we went over all my lab results and discussed a few things, again not related to FTD. We did not make a follow up appointment but were to do so in six months. Which, to me, meant six months after that visit and we made the appointment online after we got home.

Last week, I received a call from our pharmacy that she had refused to refill my prescriptions without seeing me first. This is why I ask why they do not understand. According to the way I looked at it, it had only been 3 months. I suspect it is not even her rule to be seen before refills. It is more likely that the health system she is part of is responsible for such rules

For those without FTD, or even any dementia at all, it is no big deal except, maybe, missing a couple hours of work. Maybe we would also spiff ourselves up a bit to look our most presentable. Not that simple anymore...

Now it means worrying about the appointment: how I would get there, if my daughter could miss half a day's work, and if I was going to have to explain everything all over again for a third time. When the date of the appointment arrives, I have probably forgotten about it. My daughter would remind me I am going that day and panic would set in.

For someone with FTD, it is all extremely stressful. I am going to need to shower which is stressful and exhausting in itself, pick out something other than flannel pants and a sweatshirt to wear and worry about the trip to her office which is in the city. Riding in traffic stresses me so much that by time we arrive, I am already a nervous wreck. 

The practice of this office is that they make the appointment but tell you that you must be there 15 minutes before the appointment time. All that happens when you get there is they ask if all my information is the same and, if I have a copay, I am to pay it then. I don't have one so that isn't even necessary. They stick a thermometer in front of my forehead and find I have no fever. Then I am told to have a seat. I am happy to take a seat as, by then, I am exhausted and it took one or two minutes, not 15.

Well after the appointment time (I understand how doctor's schedules work and if mine is always right on schedule I wonder if they truly take the necessary time for each patient or just end it when time is up.), I am taken back to an exam room and a medical assistant comes in and goes over my history, verifies all my meds and asks if I am having any new problems. By then, I am so exhausted and stressed that I don't even know if I gave the right answers. 

After another wait, the doctor finally enters and asks most of the same questions I was just asked. I am relieved that I am finally seeing the doctor but already so worn out that I cannot remember the answers. All I want to do is get out of there and get home.

It is both physical and mental exhaustion. I am beyond cranky and am probably irritating her. After all, she truly is there to try to help. I have to look to my daughter for every answer because I am either unsure of or don't remember anything. I am close to biting a hole in my tongue if she asks the same question again, even if it is because my answer was not very clear. I even get irritated if my daughter does not know the correct answer because then I have to come up with the proper words to correct her answer.

At this point, I just want to be at home, back in comfy clothes and probably curled up in a fetal position in bed. So she gets very brief answers at best which is not the ideal situation for a doctor to understand and help a patient. Usually, blood is drawn for some lab tests. These results will arrive later, via email, and I don't get to discuss them until the next visit. At least those are now going to my daughter so I do not accidentally delete the email... again.

It does not matter what time the appointment is, by time we do the return trip, I have nothing left. I am sure you understand that I am immediately back in my comfy clothes and into bed.

For those of you with FTD, I am sure you have experienced and understand this or a close variation. To those of you who are caregivers for someone with FTD, you are probably reliving the nightmare as well. You have the added pressure of trying to keep us calm enough to not create a scene. The others, especially those in the waiting room who have no clue that I have dementia, must think I am a royal you-know-what and are thanking their lucky stars they don't have to live with me. I don't blame them. I don't like myself much at this point either.

Is there a solution? Not that I know of. The situation can be improved a bit if everyone in the doctor's office understands FTD. The odds of that? Probably zero.

Would it help if this was a visit to a neurologist instead of my family doctor? I doubt it very much because most of them do not understand FTD either, much less their staff.

The only thing I can think of is to give a copy of this blog to my doctor. I don't know if she would read it. I DO know that I would most likely be searching for a new doctor. At this week's appointment, I am going to take my lap pad sized weighted blanket. Hopefully, it will help! Other than that, I am out of ideas.

ANTICIPATORY GRIEF

I have decided to begin blogging again after a six month hiatus. I apologize for being gone for so long, but it was time I needed to regroup after my husband's death. I am now happily ensconced in a new home that I share with my daughter who is now my caregiver. I am greatly enjoying the much milder North Carolina winters compared to those in Pennsylvania.

Today, I saw the term "anticipatory grief" and in that particular usage, it confused me. I, of course, know the term and have read about it often. I looked up the definition and to summarize, it is when you or your loved one has a terminal disease and you are planning ahead for the death that you know is coming. It can happen to the one with the disease and/or their loved one.

This definition actually surprised and explained my confusion because I had always heard this term in relation to the caregivers. It is totally understandable in the role of a caregiver because they tend to be constantly exhausted, weary and missing the person their loved one used to be all while knowing (and anticipating) the death that is coming.

Because I had always heard of anticipatory grief in relation to the caregivers, I often wanted to scream out "What about us? We are in constant grief." I know I have been, even before my official diagnosis. My FTD is hereditary so I recognized I had it long before a doctor diagnosed it.

Knowing you are going to die is one thing. To paraphrase what was actually said recently to someone with FTD... we are all going to die sometime. And, yes, I am still appalled someone said that to her. The context was basically, stop complaining. 

Of course we, myself included, know life is not eternal and normally one doesn't focus on the fact we will die one day. Unless, of course, you know that you have a terminal disease that is constantly stealing abilities, both physical and mental. We know this will continue until we do die. We also know that our death will most likely be horrid. That definitely falls under anticipatory grief.

Anticipatory grief hits me every time a new symptom appears or one worsens enough that I notice it happening. It hits me every time I see a look of irritation on the face of a caregiver. It hits me every I am struggling to do a task that used to be second nature. 

An example of this occurred yesterday when I could not remember how to print a document I had just typed on this danged computer. I became so frustrated that I yelled, "I feel so stupid and useless!" My daughter, who is working from home, thought I was yelling because she couldn't help me right then and promised she would as soon as she could take a break. I yelled again, "I know you will, that doesn't matter. I just feel so stupid and useless!"

It wasn't only that I couldn't do it. Yes, that was a part of it but it was combined with the knowledge of what is to come. I know the ability to do what used to be simple things will continue to grow. Had she not been here, the printer would be toast. I would have thrown it to the floor or beat on it until it was totally broken and probably the computer as well.

When the solution was as simple as restarting my computer, you guessed it, I REALLY felt stupid and useless. I curled up on my bed and grieved. There is no other word for it. I grieved that my symptoms will continue to worsen until I am 100% dependent. I should be caring for her, not the other way around.

She would have told me to stop if she knew what I was feeling. She does know what to expect because she watched me caring for my mom and aunt until their passing. What I know, however, is that she will still be working full time long after I die. I was working part time or not working at all when I did it.

This was a great example of anticipatory grief from both sides. She grieves because she knows I will continue to worsen and need more of her care. She is also fully aware that she will no longer have me to depend on. I grieve because I know how horrible my future will most likely be and because I know what I will put her through.

This whole incident happened just a couple days after an incident when I was unable to breathe. I had swallowed a large pill but didn't realize it was still stuck in my throat. Most people would have realized that and taken another drink but, no, I took two more smaller pills that just added to the blockage and I could not breathe at all. We were both thankful that she was here, working from home, knowing I very well could have died. Seeing the fear on her face is something I never want to experience again. Yes, more grieving.

I apologize that my return to blogging was not an uplifting one. When I blog, I sit at the computer and somehow whatever is on my mind comes out. Hopefully, the next time, happy things come out!

Give Me a Break

 I disproved one of my own theories about FTD. I was diagnosed in 2011 and realized, even then, that I could no longer cry. I would feel an intense need to cry and often felt, that if I could just cry, I would feel better. Many, many other FTD'ers have said the same thing. I have probably even said this in a blog or two over the years I have been writing. How did I disprove it? Strait forward, I cried for two days straight early this week and have continued to break down occasionally in the days since.

Earlier this week, I was contacted by the admin of one of the support groups that includes caregivers and those with FTD. This group is the only support group I actively participate in other than the private FTD Patient Support Group and the AFTD's support group.

The admin, after apologizing, asked/insisted that I removed all of the posts containing links to my blog. She informed me that she had been receiving complaints about the posts and just didn't have the energy to support me any longer. She would not just delete them, I had to go in and delete each one. The ironic thing is that I haven't even been blogging very often since my husband succumbed to his Alzheimer's Disease back in November. So, I went in and after a year or so's worth, I just couldn't do it anymore. It felt like I was cutting off a part of me. About 3 or 4 deletes in, that is when I started crying. Mind, I did not post my blog entries, merely a link to them. If someone objected, they could have skipped right past the links.

When I wrote to the admin and told her I had deleted that far back and if she needed further than that, if she could just delete them all. She then tried to tell me how much she had been supporting me by defending my posts about the fundraising I have done for the AFTD. That was the final straw. I asked her to please remove me from the group. No, I would have to do that myself but I could not figure out how to do that as my FTD was in high gear. 

She wrote me detailed instruction and it still took me half an hour to figure it out. The ironic part of needing to do it myself? A dear friend actually posted in the group, clearly upset that I was pushed out. Her post and her access to the support group were terminated in less than five minutes. 

Back to the fundraising posts. The bylaws of the group read that fundraisers could be posted if all the proceeds were to benefit the AFTD. The only fundraising I have done benefited the AFTD. The last fundraiser I did, before the current one, was for caps and shirts bringing awareness to FTD. Plus, the ones done last year were at the request of quite a few caregivers, not those with FTD, and I modified the wording for caregivers. 

A fundraiser had just ended, so I was fairly certain the complaints were about that one. I had come up with an idea to have face masks that raised awareness of FTD.  Since the masks had already been paid for by my daughter and I, 100% of proceeds went directly to the AFTD. I did not touch the  money. All the ordering and donations were handled by Classy, the AFTD's preferred fund raising platform. All that I did was design the masks, pay for them and mail the orders out once they arrived. I followed the group's rules so I was floored by her telling me there had been objections.  When I had extras at the end, I took the orders but the donations were again made directly to the AFTD. I had told no one except a member of the AFTD staff that my daughter and I covered the costs of the masks themselves. I would never have mentioned it here except for hearing of their objections to my posts about the fundraising. It should have stayed between me and the AFTD, but I felt I needed to defend myself. Seems quite pathetic to me that I needed to.

Back to the complaints about the masks. I was accused of running a scam. I was informed, not so politely, that someone's dad had ordered 5 masks, but only received 2. I told her that since 5 masks would not fit in one envelope, they were split between 2. I have not heard back from her so I am pretty sure he received the the second envelope by now. I know I did mail them. There were more...

I support the AFTD because of how much they support me and those with FTD and how they strongly work for research on FTD and possible treatments. It seems the least I can do. I do not do it for self-gratification.

The past 12 months have been difficult beyond belief for me. I was my husband's full-time caregiver while dealing with my own FTD. I scheduled a Celebration of Life to be held in his hometown in IL. We couldn't have it do to Covid 19. 

For his last few months, I had a woman who stayed at my house 2 or 3 nights a week so I could get some sleep. After he died I had her still come to work for me 3 afternoons a week. It wasn't until I was preparing to move to NC and share a home with my daughter that I realized she wasn't even doing any work except taking the trash from the kitchen to the garage. When I would mention we needed to clean the house, she would insist my house was not dirty. When I would ask her to do a specific chore, her injured hand prevented her from doing it. She did, though, take paint left over from getting my house ready to sell, to her house and painted all the trim with that very same hand. She informed me, after she had done this, that she had taken the paint. I didn't need it, but was planning on leaving it for the buyer so they had matching paint if they wanted to paint another room. As the moving date grew closer, I discovered that she was taking other things from my home. She also conned me out of my car. 

Family members had been warning me, but I chose to trust her. Until... her son and his family had stopped by one day to pick up the rug from my husband's bedroom. (She didn't ask if she could have it, she went into the room when the installers were there with the new carpet and told them she was taking it. She even tried taking the large sections left over and handed me a 1" x 12" scrap "in case I needed to patch anything.") While they were in the driveway, I don't think she realized I was close enough to hear, she told her son to go in the garage and see if there were any tools he wanted because I would give them to him. He actually started telling me what he wanted before I informed him I was taking all of them to NC. I wasn't, but I sure wasn't giving them to him.

Of course there were other things... they just kept piling on... but I was semi-holding myself together. After all, I had my FTD friends to support me. Many of them did, The hurt I felt by being rejected by one of my 3 support groups?  It devastated me. I did literally cry for two days. I cannot handle any more of this and still hold myself together. I need what little energy I have for when we can finally move into our new house.

I am going to take a break from everything... from blogging, from support groups, from everything FTD related. Fortunately I already have a very small, private support group and I will rely on them for support, as they always have done.

IF, you need answers to specific questions about FTD, I am still here for you. You can private message me any time. If we are not Facebook friends, feel free to send me a friend request. Perhaps, in a few months, after settling into our new house, I will jump back in. At least that is my current plan.  Please take care of yourselves!!!