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!!!

Please Forgive the Rant

Warning, this blog is going to degenerate into a rant immediately!

I wish all my "friends" and loving "family" members could see me today, better yet, jump into my brain and realize how it feels to have FTD. I may as well include caregivers in there too. It truly is impossible for anyone who does not have FTD to realize just how much and how devastatingly this disease affects those of us with it. I know many try and actually think they do, but you can't, just as no one can fully understand the strain of being a caregiver. I have been both. I would voluntarily be a caregiver again. I would never volunteer to have this disease again, even if there was a way to go back and not have FTD.

I feel like I am falling apart. My daughter and I are still living in her one-bedroom apartment and will be for another two months. She is also working from home most days and of course, thank you FTD, I forget to be quiet and not interrupt her with questions about what she is doing. No impulse control here.

I feel like the world is falling apart around me. All the hatred being spewed. I do not remember any election becoming as full of hatred as this one has. I can't help but look back at the first presidential election I can remember... Kennedy vs Nixon. Now there was a hullabaloo about the horror of possibly electing a Catholic, but that was even handled with complete decorum compared to this one. The taunts I remember are "Nixon, Nixon, he's my man. Kennedy belongs in a garbage can."  I heard it just as frequently the other way around. As I aged, I still knew of politicians reaching across the aisle to work for the common good. That is a far as I dare delve into politics. I only raise the dangerous subject to explain how all the dissension affects me and piles on the stress to my FTD burden. 

I mention it partly to explain how, this week, when I went to get my new driver's license and was given the opportunity to register to vote in my new state. I was terrified when it was time to declare my political party. As it was, I whispered it to the agent so no one would overhear me. To me, it is pathetic that I had to feel that way. It actually helped when she laughed at me.

I have just one family member living near me (excepting my daughter and sister) who has stood by me through my battle with FTD. She would pick up on when I was feeling down and she would come by the house to help or just visit with her fiance's child who, by the way, looked adorable in his face mask! Yes, it was technically a violation of the stay at home orders, but it was a medical emergency in my mind. Now that I am several states away, she is going through an extremely difficult time and I am not there to stand by her side. So now we add self-imposed guilt into my frame of mind.

Yes, I try to provide support via phone and social media, but it isn't the same. To top it off, she is 3+ months pregnant and a high risk for carrying to term. Thinking about it, it is probably better that I am not there because I would probably be arrested for attacking the other family members who are unreasonably causing the hardships on someone they should be loving and caring for, especially right now.

With all this that I am stressing over, whether justified or not, trying to make choices for the new house we are having built is way too overwhelming. My daughter has her ideas of what colors to paint and I have mine. She has her ideas of what furniture to use and where to put it. It would be ideal to buy new things for a new house, but with more than two households full of everything, it just does not make sense. I don't even want to think about trying to decide how to arrange furniture and such. Already, during a walk through of the house, the project manager mentioned an open area and I said "Oh, good, a place to put pretties." My daughter scoffed and said "Not your pretties!"

I did have a break through today while trying to agree on wall colors. Nine years after being diagnosed with FTD, I discovered it IS possible to cry. It is also possible to curl up into a fetal position while you do, but FTD has never prevented me from doing that. I finally came to the conclusion that my daughter must allow me to select the colors for the rooms in my part of the house and I will allow her to choose the ones for her rooms. The common rooms will be a warm shade of neutral, a vanilla choice really, as that is the name of the paint. That's as close as I can get to being humorous today and that is only pathetically humorous.

I also must add that I am greatly worried about an FTD friend who is worsening rapidly. It is probably more frustrating for me when I am worried about any of my FTD friends than when I am worried for myself. For myself, I seem to be able to go along with "It is what it is" mentality, but not so when it comes to others.

It doesn't help that I just came off a multi-day FTD headache either. At least today I can actually exist without drugs. Oh, and while trying to work through the headache, I burned myself, as I tend to do. forgetting things are hot. Things like that, things that FTD'ers do nearly constantly, make me angry at myself and angry at the world. 

So, why did I wrote this blog entry knowing that it was going to be a rant against everyone and everything? The answer is simple. This is a look into the mind of someone with FTD... constant frustration, much anger, much hopelessness, some paranoia and pain gets thrown in as well. To top it off, I couldn't remember how to go back and correct my typos and ended up deleting entire paragraphs that I had to try to remember so I could rewrite them. 

Ah, yes, FTD how I love thee... no I don't.

The Eyes Have It

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.

It was only a few years ago that there was a discovery that FTD could be diagnosed earlier by evaluating the retina of the eyes. It was discovered that, even early in the progress of the disease, there was remarkable thinning in the retina on the back of the eyes.

We know that frontal and temporal lobes shrink during the process of FTD. We know that the retina is connected to the brain via the optic nerve. The retina is considered part of our central nervous system. I had major retinal issues in my eyes for over a decade before I was diagnosed with FTD which allowed this study to make sense to me.

I was diagnosed with macular degeneration in (I am estimating here) 2002. Macular Degeneration is caused by the thinning of the retina. The retina is in the back

 of the eyes and can easily be viewed through a dilated eye. Three specialists who all concentrated on retinal issues could not find an explanation of why which is common with this eye disease. 

Some of the symptoms of macular degeneration are visual distortions. One example of this is straight lines seeming bent.  It also often causes reduced central vision in one or both eyes, the need for brighter lights and increased difficulty to adjust to lower lighting such as in restaurants. Words may become blurry, especially on the printed page. Now for a couple that I did not know, but have been experiencing for years, worsening as my FTD progresses. It can cause decreased intensity or brightness of colors, loss of depth perception and objects may vary in size between the two eyes.

One that surprised me as I researched this today is difficulty in recognizing faces!  I experience, and have heard of others with FTD experiencing, increasing difficulty in recognizing faces. For instance, all men with dark hair look like the same person, all women with long blond hair look alike. This is accentuated even further on television. The second that surprised me is difficulty in recognizing objects we are searching for. For me, the most embarrassing is when I am needing the remote control and become out of control from frustration only to have someone point to it and I had been looking right at it.

I am not alone in experiencing these gaps between vision and recognizing objects. Many of my friends with FTD talk about experiencing the same thing.

I am not suggesting that everyone with FTD has Macular Degeneration nor that Macular Degeneration causes FTD in any way. I am merely saying that when I read the research on study whether FTD can be diagnosed earlier via examination of the Retina. Also that the symptoms are quite similar. An extreme example is a headache. Is it sinus, is it stress, is it a migraine or a brain tumor.
Symptoms occur in many similar illnesses.

I hear from many with FTD and/or their caregivers complaining of double vision and, even more so, loss of depth perception. The symptoms I mentioned, such as double vision, loss of depth perception and changes in size of image or intensity of color can all be caused by the two eyes not working together. 

Each eye sees its own separate image. The two images are put back together, in the brain, into a single image once more. I have no problem accepting that the vision issues are in the brain not being able to do its part, not the eyes.

Because of this, most of FTD vision issues cannot be corrected by visiting the "eye doctor." I can definitely say, in my case, that the differences between the two images constantly vary as they fluctuate constantly. No eyeglasses, even with prism lenses (which work when it is an eye muscle issue causing double vision) do not help for any length of time, if at all.

I must caution that if you are exhibiting any of these symptoms, you should be evaluated by a qualified ophthalmologist or retinal specialist.  As I said above, I do have wet macular degeneration and regularly must get injections of medication into my left eye because my macula is actually degenerating. This does not cure the symptoms I have discussed, but it does keep it from totally stealing all the vision of that eye.

I wrote about eye issues quite a while ago in a blog. However, since the past couple weeks, multiple questions have been posted in the support groups that  I decided it was times to write about the vision issues once more. Plus, I understand the issues even more than I did before.

For the caregivers, eye issues may explain things like how the FTD'er used to watch movies, television and/or read and no longer have interest in those. It can also explain many other issues, such as tripping, falling and dizziness. Personally, I must watch my feet when walking because I cannot see any difference in the surface I am walking on. For me, I believe I have mentioned in previous posts on the subject, Strangely, ramps and very small changes in depth are the worst. The absolute worst are corners that are adapted to meet disability standards. There are different slopes, beginning at the sidewalk and the street. To make it worse, the sides also slope so that if you are not smack dab in the middle, there are multiple elevations to deal with. THEN, they mess with the brain by being curved and often painted yellow, both of which make it even more difficult to sense the changes in the pavement. 

For those with FTD, if you are not comfortable walking outside, take a look at the sidewalks, cracks and the sloping corners to see if that is one of the reasons it makes walking so difficult. Stepping off curbs is a hazard as well, at least for me, because with no depth perception, I cannot tell how high the step is.  I find myself holding onto to something or someone and stepping up or down slowly and carefully in order to not fall. Even then, when my foot hits solid ground, it is a shock everytime.

It is safe to say that everything all do is eye-related. The only exception to that is when I am sleeping. I am able to walk just fine in my dreams.  Again for the caregivers, try walking around your house or backyard with your eyes closed. That will give you an idea of what we constantly deal with plus help you find things that should be changed or moved. For me, the absolute worst is when something appears right in front of my face. Moving things closer does not help me at all. If I turn a corner in my hallway and there is an object right there, it startles me even if it has been there for ten years.

One more suggestion, this time for those of us with FTD, I find that watching television with only one eye makes it doable again once you get used to it. I usually drape a cloth over my head to cover the weaker eye. I am also getting good at keeping one eye closed. Please use caution though, when you open or uncover the eye, the shock of the difference in light for the covered eye can make you dizzy for half a minute or so. For me, it is worth learning to remain still for a minute before standing and walking.

Again, to the caregivers, these eye issues can explain a lot of the things that upset you about your FTD'er. Why they do not recognize your face yet still seem to know who you are after a while, why they are constantly losing things (they aren't lost, they just cannot see them... there is a difference). The eye issues can take away the enjoyment of many things they used to love. If you ask, do you see two of everything, they may not realize they do. If you ask them if their eyes make it difficult to walk, you just might get a blank stare. That doesn't mean the issue isn't there. It might be that they simply don't recognize the symptoms exist.

Another suggestion is to decide what are the most important things to them. You can put a large and bright colored sticker on them as an experiment to see if it helps. We all know, though, just because something works for me does not mean it will work for your FTD'er. Experiment with different things to make important things more visible in case you can make their life just a tad easier.

If any of you have any other suggestions, especially to help an FTD'er more able to find things, please let me know because I really could use some!

Struggles, Frustrations and Disappointments

It is usually easy for me to realize when I have chosen the wrong topic to address in my blogs. Either I will write the first couple paragraphs to introduce the topic and then sit here and not know where to go with it or I will have written a ways into it and some computer voodoo occurs and what I have written disappears. Today, both happened. So I scrapped that idea and decided to go with what has been bothering me lately.

Anxiety, anxiety, anxiety! It is often one of the symptoms that develop prior to even realizing there is a neurological issue. I remember talking to my doctor about it before we addressed the more obvious signs of FTD. She prescribed a low dose of Ativan to be taken as needed after I made it clear I didn't want to be on anything on a regular basis. 

After learning the benzodiazepine anti-anxiety drugs are not a good choice for treating FTD, I was glad I insisted on PRN. The largest risk with these drugs is increased confusion which leads to increased risk of falls. While I still take Ativan on a limited basis when I am out of control, it isn't often. There are other alternatives. Buspar/buspirone is one that is successful in treating many FTD friends on a long term basis. So if anxiety is an issue on a long-term basis, I would suggest you consult your doctor.

Personally, after my husband succumbed to Alzheimer's, my anxiety level decreased significantly. So much so that I did not recognize that I was still experiencing quite a bit. Moving obviously increased it and now, living with my daughter in her one bedroom apartment until our house is finished being built, it is rearing its ugly head once again. Honestly, with her working from home due to the pandemic has not helped.

I am so comfortable here with her that I did not realize how much anxiety I was still having... until I went off on her because we haven't yet begun to choose which of her things we would want in our new house and what should be tossed, sold or donated. After all, we only have 2 months until the move. She was smarter than I was and simply moved into a different room. It wasn't until the next day that I recognized I am still having anxiety related to this move, not stopping to think that it truly is two separate moves for me. When I went in to her room to apologize she laughed and asked "Where exactly is your Ativan?"

The other realization I came to this week was just how much my memory is failing. I had noticed this for a while now, but attributed it to my anxiety. Within the past couple days, though, it kind of slapped me in the face. I was talking with a friend, who also has FTD, and I was totally surprised when he told me his daughter was having his first grandchild. It wasn't until we had been talking about it for a few minutes when I asked "Did I know this already?" His excitement is what triggered me to ask that question. We decided that, yes, we had already had this discussion. It hurts that I would forget something so important in the life of an important friend. 

My daughter is now the keeper of my calendar and all my passwords for online accounts. She also stays calm when I lose important things and is patient while I search and search. Eventually, when I give up, she finds whatever it was.

This all saddens me. Not so much because of what is happening to me, but realizing that many of us who became aware of our FTD right around the same time are experiencing similar increases or worsening of symptoms.

It hit me quite hard earlier this week when I was told that the AFTD would probably not be holding a live education conference again in the Spring of 2021. I am not sure they realize just how important this event is to so many of us. To get together, in person, with so many others who are dealing with their own FTD. I have no clue how to explain how important this experience can be to those of us with the disease. Just to be able to hug each other and know we are not alone is simply priceless.

Combine that news with the realization that I don't know how many years we will able to attend was devastating. Right now, there is still so much we can all learn from each other. It truly saddens me to think that we will be losing that forum for another year, not knowing how many years I have left. 

I do understand the logistics of planning such a conference require months and months of planning and arranging, so I don't fault them, I just wish it could be different.

Weary? Maybe, but never weak!

I had a difficult time getting myself in the right frame of mind to even attempt writing yesterday. In the greater scheme of things occurring in our world, it seemed trivial, totally inconsequential. I even had difficulty getting out of bed. I know I ended last week's blog by saying support groups and politics is not a good mix. I will probably walk a fine line, but I am going to attempt to restrain from discussing politics and religion.

Right now, until our house is finished, my bed is a futon in my daughter's living room. That became a blessing today. She came out and turned on the television to our church's broadcast service. They still are not able to have in-person services but, fortunately, they always broadcast their service anyway. That is what inspired this blog entry.

While Pastor was speaking, several of his points were quickly relating to FTD in my mind. His message was about when we are tired and weary. "When you are weary, you start fighting battles that should not be battles at all. Then we become so tired of fighting those battles that we create more battles."

The difficulty I had dragging myself out of bed was because I knew we had to go to the grocery store, one of my least favorite things. I was trying to come up with reasons why I should not go even though I had not been outside in a full week. I have been feeling exhausted mostly due to the general feeling in the world right now. All the anger, blame and violence was overtaking my entire mind. I was fearful of going out, afraid of what conflict I might find.

Conflict is something I can no longer deal with with my FTD brain. I cannot process things when some in my life whom I respect and love make decisions about what my opinions are. My immediate reaction is one of paranoia. Are they making these assumptions because I have FTD so they figure I am stupid? Or since I have FTD, I should be easy to convince to reverse my thoughts? Unfortunately, with my FTD, I end up verbally lashing out at them no matter what their reason.

Thinking about battles led me to the battles between FTD'ers and their caregivers. Unfortunately, there are many. Caregivers are tired and weary and it is not rare for them to become resentful for the sacrifices they must make. There is also the frustration of not knowing what to do or what choices to make, as well as no idea where to find the energy to keep on going.

FTD'ers become beyond weary of dealing with the illness just as much as caregivers even if in different ways. We cannot take a break from the disease and the difficulties it brings us. We cannot take a respite break or get away from it for a few hours. It is always with us. The only break we get at all is when we are sleeping but, even then, we are plagued by nightmares, hallucinations and general sleeping difficulties.

Then Pastor added, "Just because you are weary, does not mean you are weak."  Aha! Thank you Pastor!

Just because I am weary does not mean that I cannot stand up to those who assume what my feelings and opinions are. They are certainly entitled to jump to their own opinion. That they do, does not mean I am too weak to choose to ignore their opinion or comments. I am not too weak. I can tell them that they have no idea what my opinions are and that, yes, I have FTD but am still capable of making informed opinions and choices. And, yes, I am not so weak that I cannot decide who to block on social media.

I can be weary yet still strong enough to tell those caring for me that they are not experts in FTD because they knew someone who had Alzheimer's. I am strong enough to tell a doctor that s/he must do some research on the disease or I must go elsewhere.

I can be weary yet still strong enough to tell family, friends and caregivers that I need some "me" time... that I need to go into my room and retreat to silence and allow calmness to come over me... before I explode.

I am weary when I am not being included in making decisions for myself.

This was true for me when I was my husband's caregiver just six months ago. I was not too weak and weary to serve as his advocate. When hospice turned him down, I found the means to obtain the equipment and supplies I needed to make the time he had left just a little easier for him. I was also not too weak to stop trying to get hospice in to help and I succeeded.

Those of us with FTD, those who love someone with FTD or care for someone with FTD are often weary... but we are not weak. Anyone dealing with this disease just cannot be weak. 

Making New Friends

Bear with me for a minute here... Arrrrrgggghhhh!  I just spent an hour an a half writing a blog entry. Of course it was brilliant. I found all the right words. Solved all the FTD problems in the world and  amazed others with my brilliance. Don't I wish? I did have today's blog completely written and swore I had saved it properly. Perhaps the internet gods knew that no one would have wanted to read it anyway.

The main topic was about the joy I was blessed with today. Earlier this week, I received a private message from an FTD'er who was going to be visiting my newly adopted home of Charlotte NC and hoped we could actually meet... in person.

I do hope she had as much fun as I did. I love getting to meet my FTD online friends in person. In this case, we hit it off from the moment she walked in the door. There is nothing like starting a visit with a huge, heart-felt hug! Our conversation never stopped and we never had to worry that when we struggled for a word that the other would interrupt and try to complete our sentences for us. My daughter, my designated drive as well as all the other roles she fills, understands the how and why of letting us think of the words ourselves as well. When I started having swallowing issues, no one asked why I was not eating. Like so many of us with FTD, my new friend and I had a huge amount of things in common. Of course our signs and symptoms varied because, as we all know, NO 2 CASES OF FTD ARE THE SAME.

Shout that from the rafters everyone, please! I keep thinking I should save a file of stock answers to questions. Why does my xxx not do yyy like many of you other FTD'ers can?  Answer: The brain consists of a huge number of brain cells. Your signs and symptoms are determined by which brain cells are killed off and by which ones have been spared so far. It might be nice to have a chart of what abilities we will lose when, but that will never happen.

I often have my diagnosis questioned because they cannot understand how I can still write somewhat intelligently. They don't stop to think that perhaps my writing was better before FTD, and it was. The biggest difference is that back then I did not need to proofread everything at least 12 times. For instance, The last sentence "...still write somewhat..." Before the fourth read through, it still said "...still write someone..." They also have no idea that all my artistic abilities are gone. When I packed up my house to move, I threw away all my trophies and awards for my artwork. They meant nothing to me anymore and only served as a reminder of what I have lost.

I kept the art pieces, but did not want reminders of what I used to be able to do. For me, it is healthier to focus on what I can do now. Past awards mean nothing to me now but it may be the reverse for others. It may be more helpful to keep the reminders of past abilities you had. We rarely react in just the same way, because we are all different when it comes to progression of our disease.

I cannot help but think of my friend, Alan, who now writes beautiful, heartfelt, poetry. He wrote a poem for me when my husband died that is now one of my most prized possessions. My friend, Dale, has found new artistic abilities. When she and her husband came to my aid when my husband died, she gave me the gift of one of her paintings she had done after FTD when her amazing artistic abilities came about. Her husband gifted me a piece of his art of making beautiful things from ordinary stones. All three of these gifts will be treasured forever.

Wow, I really digressed here. I was talking about how much fun we had at brunch and veered totally off subject. Then again, as vast as the subject of FTD can be, maybe it was all the same subject.  Yeah, Cindy, keep telling yourself that!

Back to the subject of enjoying my visit so much.  I have written many times about the joys of attending the AFTD conferences. I have convinced quite a few others to attend them along the way as well. I do believe they enjoyed themselves just as much as I have. 

To me, at conference, my FTD symptoms disappear. The last one I attended in Los Angeles, I had the opportunity to speak on stage. I realized that my Parkinsonism symptom of shaking kicked in while holding the copy of what I was going to say and that caused me to lose my place a few times. When I later saw the tape of it, I realized just how badly I was shaking. It didn't bother me though. I knew my fellow FTD'ers in the audience understood and I figured it was good for all the audience members to see it happening. Then again, they may have thought I was extremely nervous. The thing with that is, that since FTD I can talk to anyone, in front of anyone, including crowds. 

All those inhibitions are gone. If I goof up or someone finds fault with what I say, who cares? I sure don't. Those inhibitions probably disappeared right along with my loss of impulse control. Now, that one does get me into trouble once in a while. Okay, maybe more than once in a while. But... going to an expression I hate... it is what it is. I can't stop it. I can try to reel it in and I definitely apologize often but if I think of saying it or think of doing it, I probably will.

As many times as I proofread my blogs and other writings, inappropriate things do slip in there. The ones I care most about, my fellow FTD'ers, understand and accept or at least forgive. And, that, my friends, is the reason I love spending time with FTD'ers.

Dawn, I loved meeting you today and hope we get many more opportunities. Fair warning though, I will keep encouraging you to go to conferences... if we ever get to have one again.

Oops, one more thought. Politics and FTD, at least in my mind, do not mix well. 

There are no Absolutes!

Things have been interesting since I was able to once again start blogging after a couple months of being too busy and too exhausted. In addition to having the time and energy to blog, I have also been spending more time in the support groups. That has been heartwarming and informative, yet, sometimes, downright scary.

Many bloggers have been posting very strong and absolute opinions. I know I have been guilty of making absolute statements once in while, but I really do try not to.  As we all know, no two cases of FTD are the same. There are no absolutes. That is except for the absolute that FTD sucks all the way around.

When I see other bloggers and self-appointed "experts" asserting things like "No one with dementia should be on this medication." or "Your loved one obviously has xxx/diagnosis," I get frightened. We are not experts and there are perils in diagnosing when you don't have an M.D. or D.O. behind your name. I will admit I have caught myself coming downright close to that, but when I do, I back off and recommend that they discuss it with their or their loved one's doctor. Just because we have FTD or care for someone who does, it does not make us an expert. I try to use the word "possibly" or "could".

Medication that help one person with FTD may not help the next person. Answers to behavioral questions are the same. There are so many different ways for an FTD (or any dementia) patient to react to the same stimuli that, just as with medications, one way of handling a situation with one patient may worsen the situation for another. 

Posts by caregivers often anger me. I am pretty sure everyone knows it when that happens. I try to bite my tongue, but sometimes I just cannot. No, the FTD patient is probably not plotting to make your life miserable. First of all, the FTD mind is usually not able to put together a plan to do so. More often, they are desperate for love, signs of affection, understanding or comfort. Also, you must include how frightened they can feel and lonely in their battle. "Why is this happening to me?" "Why does no one understand or tell me what and why these things are happening to me." 

This is not to say that someone with FTD cannot try to gain these things when they are lacking. My mother, while in an assisted living facility that was near to my sister, would do things like hide her glasses. She could remember that the last time that happened, the staff called my sister and she came right over. To me, this was not being manipulative. It was just a case of her being lonely and actually able to come up with an excuse to get my sister to visit. She was not able to think through that if she was not there, my sister must be busy or not feeling well. That is too many layers of thought processes for her. She was lonely and came up with a way to get my sister to visit. The end! Of course it only worked once. She was not being selfish, not being mean, not being manipulative. She was lonely and bored.

I just have to share one of my favorite memories of my mom while she was in that assisted living facility. My husband and I had driven to Florida from Pennsylvania and were visiting with her as much as we could. After a few visits, my mom looked at my husband, put her hands on her hips and said "Just who are you and what do you want?" No, it wasn't funny that she was confused. It was that this was totally something she would have done and in the same manner in years past. My poor husband suffered the abuse of all of us asking him that until he died. Hey, you have to find humor where you can.  

Recently, I read a post that said "No one with dementia should ever take this drug!"  That is probably true of many drugs, such as the anesthesia medication Versed, but there are no absolutes. There are times that even Versed must be used despite the probable escalation of FTD symptoms. 

The problem in this particular incident is that it was a prescription medication that helps a huge number of dementia patients. Without it, the patient can hurt themselves and others from lack of sleep, too much restlessness, agitation and anger. Yes, it would be ideal if no one with dementia had those symptoms or if those symptoms did not create dangerous situations. Perhaps a particular medication is not the ideal for FTD/dementia, but this is something that needs to be discussed with the patient's doctor. It must be weighed between the side effects of the medication versus the risks presented by not taking it. It must also be remembered how many different types of dementia exist. A medication that is good or harmful with one type of dementia may be the opposite for someone with a different type.

Caregivers can fall into the same trap with absolute advice such as "You MUST not allow this" or "You must stop allowing them to eat this" or "You must take this step to prevent injury." Just because something has worked in their situation, does not mean it will work for all. 

A good example is one of my pet peeves... when caregivers talk about locking up food from the FTD'er. I have written about it many times. To me, that seems cruel and obvious that the caregiver does not fully understand the intense cravings many with FTD experience, especially for carbs and sugars. They do not realize that the person with FTD is not creating these cravings on their own. It is their brain. Brains need sugars to function. A brain that is not functioning properly causes the cravings. It seems that maybe it needs to be weighed as to whether the quality of life for the FTD'er is more important than gaining weight which will be lost later in the FTD process. Is it worth the fight? However, as I said, no absolute. If the one with FTD also has diabetes, the fight is definitely worth it. Each case is different. While the idea of locking up and depriving someone of food they are craving is, to me, abusive, there are times when not doing so is.

Yes, I do catch myself giving absolute advice. I am relieved when I realize it before I post. But, unfortunately, I have FTD and do slip up. I rely on others to tell me I am wrong or simply goofed up. I encourage everyone to question what I say or write. I do not become offended, at least after I realize I did say something inappropriate.

I also try to be tactful when I am taken aback by something said or written. My words and I are not always seen as such by the one I am saying it to, but I do hope everyone can realize that my suggestions and advice are always meant to help, not to offend.

I have the advantage (or is it disadvantage) of having been the caregiver for 3 family members who had the disease before me. There were more than three, but I was not the caregiver for the rest. Now that I have it, I am usually able to look at issues from both sides of the problem of caregiver vs. FTD'er. I have also researched dementia, Alzheimer's and FTD for 25 years while trying to understand and find ways to help my family members. 

Am I an expert? Absolutely not! I have no medical background other than working in a hospital data processing department, marrying a hospital executive and hanging around with a lot of doctors through the years. I don't count managing a chiropractic practice or working in finance at a respiratory therapy company. The only benefit from all that experience is that I have a good understanding of medical technology and terminology. I also understand that medical personnel and physicians are human beings. The benefit of that is that I am not afraid to ask questions, discuss or question anything when dealing with doctors. 

I wish I could have learned through osmosis from dealing with all these professionals, but we know it doesn't work that way. I am not afraid to research and question things but certainly do not do so at a level above that of any of us dealing with FTD. 

I say all this because when I slip up and talk in absolutes, I hope everyone tells me I made a mistake.  Also, to those who I question about the same thing, I hope they understand why I do. I am not questioning their knowledge, I am questioning how they share it.

Lessons Learned Through Change

Logging in, I was shocked that my last blog was nearly 2 months ago. It is difficult to realize how much moving involves, especially during a pandemic. 

I have done interstate moves nine times, so it was easy for me to choose doing all the packing myself. My diagnosis was in 2011 so you would think I would have some idea of the limits on my energy and strength. I had a limitless supply of boxes, tape and other packing supplies, thanks to Amazon, my best friend. I did not have a limitless abount of energy. Since stores were almost all closed, this was a big help.
There were days that even assembling boxes was exhausting and some were downright difficult, especially the six foot tall ones. I made the mistake of assuming my "caregiver" would pitch in. She did do a good job of watching me though. It was frustrating enough, that I began to do the work when she was not there so I would not get as angry.

I have just told you the two lessons I actually learned and used. I learned to listen to my body and my brain. After several days, I had to start resting when my body and/or brain was tired. I kept at it long enough to realize that I could only work 4 or 5 hours a day, usually divided into two work sessions. Even with those limits, when either brain or body was exhausted, I actually took a day off to rest. 

I did it! When everything was packed and the house clean, I was proud of myself. I  also was able to part with gave a lot of "things". A few years into my FTD, I realized that things don't matter nearly as much as they used to. Knowing that FTD affects thinking processes, I would set things I didn't think I needed aside for a couple days. I would look at everything and reassess a few times. After that, I decided what to toss, what to donate and what to give away to friends/family. The local rescue mission grew to love me. I gave them two van loads of items they could sell. With the third and final load, they had to bring the small bus they use to transport the less fortunate to church. They filled it except for enough room for the three guys.

I also offered many items to family and friends. A lot got tossed but most everything else was taken by my "caregiver." I learned to accept help. My brother in law was always there when I needed heavy work. My sister was the one I needed to support me along the way, bringing me food when she knew I wasn't eating and suggesting a day off when she realized how tired I was before I did. It was a difficult, yet necessary, thing to learn. 

Lesson number two is the reason I have "caregiver" in quotation marks. Mine was good while my husband was still living, but afterward, not so much at all. The one thing I will never forgive her for is that during the half hour  break I took from lying next to his bed, she checked on him. She realized he was finally giving up the battle and would die within minutes. She stayed with him "until she was sure he was gone." To deprive me of that moment, to be with him, is totally unforgivable. I had spent 4 days sitting or lying next to his bed, holding his hand. I left his side for a few minutes to rest my back. I don't understand how she could have done that unforgivable action. I did manage to make it less painful by closing the door to his room and bathing him before the necessary people arrived.

After his passing, I will admit, she broke her hand. However, considering she had previously continued to work after full shoulder replacement surgery, I was angry that she stopped doing anything. 

This is a very important lesson. If you hire a caregiver, make sure s/he is giving care. Caregivers, please observe them often and at different times a day. Unfortunately, I did not listen to my sister, daughter and friends who all tried to tell me how she was taking advantage of me for the five months after my husband's death. I hate any change and this would have been a major one to me. To those with FTD, when more than one is telling you someone is taking advantage of you, please consider that they just may be right. It took me realizing that while I was pushing myself beyond my limits, she was sitting and watching soap operas. I never fired her  until a week before the move. 

The thing that decided I couldn't even keep her for another week was a biggie.  The home buyer's house was to come the next week on Wednesday. When she left on Friday, I told her to be prepared to thoroughly clean the house. Surprise! Instead of showing up 11:00, she didn't appear until 2:00. Of course, I had nearly everything done by then. I had saved the vacuuming for her to do and, even then, I needed to redo it the next day even though I had broken my foot over the weekend. So instead of stressing the broken bones on just Monday, I had to do it again on Tuesday.

In the end, the home sale went perfectly and I am now in beautiful North Carolina and happier and more relaxed than I have been in two or three years.

I hope you picked up on the lessons I was trying to share. For caregivers and/or family member: If you have someone helping in your home, please check on them when they aren't expecting you to and do it often. If your FTD'er is like me, they just might cover for them just to keep the peace and avoid change. Offer help when your FTD'er appears to need it, but don't take over unless there is significant danger. I recognize that it is often easier to take over, but it surely was a benefit to me when my sister forced herself to sit and watch, only offering occasional help when she believed I was endangering myself. 

For those with FTD: as much as we hate change, sometimes it is a good thing. I kept paying my "caregiver" for nearly a year when I should not have.  Change is often a good thing. Don't be afraid to take on tasks you want to do as long as it doesn't involve knives or power tools, etc. Then again, seeing as how I trip over air, maybe keep the tasks simple. Packing boxes was fairly safe for me, I only cut myself one time and it wasn't even bad. I cut it on the metal edge of the tape dispenser. There's no way we can know when we will have an accident. Yet I really believe that we often just need to do it by ourselves.

For family and friends, besides encouraging you to spend time with your FTD'er, keep an eye open and if you suspect something is wrong tell both the caregiver and the FTD'er. For me, I would have to add "often" because I sure don't catch on right away... or even after months of being told.

What else did I learn? The biggie was that most things don't matter to me. I kept small reminders of family and friends but was able to part with things I was keeping just because they had belonged to someone I loved. I actually learned that it is okay to ask for help or to at least accept it the third or fourth time it was offered.

The best thing I learned? It sure feels good to have time, energy and my brain functioning enough to blog again. Thanks for waiting for me!