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.