We Never Know for Sure

By now, I think that most, if not all, of us who have experienced dementia in any way, have heard of sundowning. I do run across individuals from time to time who give the symptoms and wonder why their loved one is experiencing these things making their life difficult.

Some one related about how the FTD'er they were caring for seemed irritable and restless, confused and disoriented and would wear out the carpet if they did not make her sit down. After I said the word "sundowning", the response was "I always wondered what that was." She confirmed that the symptoms worsened in the evening and night.

I was shocked to learn that sundowning also occurs in individuals who show no other signs of dementia. Then I thought about the changes in season. Many people I know would comment about how difficult it was for their body to respond to these changes or how difficult it was for their pets to adjust. Some brains will not easily adapt to the change. It is no wonder sundowning occurs and is worse for those with dementia. Even the change in seasons, the moon and alignment of the planets can affect some.

I found where one medical scientist believes that it truly does mess up our "body clock."  I did not realize that this truly existed. Since FTD and other dementias deteriorate our brains, it makes sense that dementia could definitely worsen this experience. Sometimes, people forget that the brain controls absolutely everything in our body. If we are experiencing or seeing someone else experiencing the symptoms I mentioned above, it almost certainly originates from the brain.

When the hours of daylight gradually shorten or, in the case of seasonal time changes, sudden changes, it means less light and a greater than normal amount of shadows. It can cause fear which triggers all the symptoms associated with sundowning.

There are many suggestions on how to reduce sundowning. Try to keep the daily routine the same. Don't allow naps except early in the day. Personally, I can't control when I nap. When I am exhausted enough, I fall asleep.  Increase the inside lighting as it gets darker. Close out the darkness with blinds or curtains.

One interesting thing I read suggested that the one with FTD may be picking up signals from their caregiver to trigger it. As the day goes on, caregivers get more and more exhausted. They may, unknowingly, be less patient, sharper voiced or moving faster to try to get everything done.  If the caregiver's schedule and attitude change, it makes sense that the FTD'er can pick up on that and then their own changes.

When my husband began sundowning, I bought a table clock that shows the day of the week, time of day (morning/afternoon/evening/night) and the actual time and date. Once he got used to this, it seemed to help quite a bit. Now, though, he will argue with me about it.

One night last week, he came into my room at 3 a.m. which is often the time he wakes up confused. He insisted he be given his morning pills. When I explained it was 3:00 in the morning, he said, "No, it's not. I need my pills and my breakfast."  I tried showing him on his clock. When that didn't work, I opened the curtains and showed him it was dark out. His response was something like "Huh, that's weird. NOW can I have my morning pills? 

The only other thing I could think of was that he was hungry. Since he always takes his morning pills with his breakfast, it may have become all one event to him. I let him drink a bottle of Boost and got him settled back into bed. When I woke up this morning, he was sitting in his recliner, sound asleep with his head nearly touching the arm of his chair. (That would have made my neck hurt for a week.) I knew he had been asleep like that for a while because infomercials were on the television instead of sports.

When I tried to give him his breakfast and morning pills, he insisted it was nighttime and he should have his evening pills, not morning ones. I showed him how bright and sunny it was outside but again that did not work. I finally came up with "I think I forgot to give them to you this morning, so you need to take them now."  It worked, he took the pills, but had no interest in breakfast.

Fortunately, this was a rare occurrence. I moved into the bedroom right across from his and keep my door open so that I can hear if he gets up, especially if he leaves his room. Perhaps I was more tired than usual or, even, that he was particularly sneaky because he still wanted his breakfast. There is no way know. I do know that it is taking a while to get him back on a time schedule.

Isn't that the way it is with FTD and other dementias? We just never know for sure. We don't know for sure why some with FTD experience sundowning and others do not. We don't know for sure why some get violent and others get sneaky. The only explanation is that it most likely it depends on the areas of the brain that are destroyed by FTD and the order in which they are destroyed as well. 

This fickle pattern is also why I get questioned, nearly every week, about why I am still able to care for my husband (albeit with help for a few hours during the day) or why I can still write and their loved one cannot do much of anything. In addition to reasoning and planning skills (executive functioning) being the first to succumb to FTD, it stole my artistic abilities early on as well. Yet, many others with FTD have developed them. I have difficulty with motor skills which often lead to falls while others don't.  Some can follow movie plots and watch movies and television for hours. I can handle about 45 minutes, the length of one hour of television, yet I can still read. I often stutter or need to search for correct words when speaking. When writing, it is easier for me to find the words. Of course, it is typing, not writing by hand. That went a long time ago. I can still do it, but no one can read it.

I don't need to give you more examples. I will say the expression I hate, "It is what it is." The only thing we know about lost abilities is to narrow it down by what location in the brain controls that particular thing. We cannot predict what will go next or what will stay.

All we can do at this point is to continue to encourage and support FTD research. For those who are able, I encourage you to consider enrolling in research studies. I also encourage anyone with FTD to donate their brain to research. You can do this without donating the entire body. The procedure differs from state to state, but you can easily seek out those in your state who accept the donations for information on how to arrange for it to happen once you have died. A local funeral home should be able to help you as well.

Reading Between the Lines

First of all, I apologize for not being more regular at posting blogs. I am not finding the energy or impetus to write. Thanks, FTD.

One good thing, at least I think it is a good thing, I have noticed since having FTD is the ability to see through all the crap people present us with. When someone says something to me, I can sense hidden undertones in someone's voice, their body movements and can see the changes in their eyes. This helps me to distinguish between the lies and the truth, as well as hidden agendas.

This goes beyond recognizing when someone is lying to get out of a social event with me, the "one with FTD" who might embarrass them. That happens often enough that it doesn't take much to sense that. I think all of us experiencing FTD develop that sense. Like after pictures from a "family" event pop up on Facebook that I was never invited to. I don't have many filters, so I am likely to make a comment like "Oh looks like I missed a good time." or "Damn this disease, I must have set the invitation aside to respond to and then totally forgotten about it." It is actually a form of entertainment for to see them squirm in their responses. Not as entertaining are the ones who openly say they didn't invite me because they didn't think I would enjoy it or other such nonsense. This affects the caregivers as well as those of us with FTD.

I must admit that I have always been an empath. I could sense people's feelings or feel the negative "vibes" in a space. This is not something I was open about. I never shared it with many people at all.  This sense has become stronger since FTD. I attribute that to FTD ridding me of so many filters. It seems they affect both incoming and outgoing thoughts and words. I have always been able to sense things by looking into a person's eyes. Those senses have been accurate enough that I do believe in that ability.

I will give you an example. Back when I was still working, I didn't start until mid-day. When I approached the employee entrance, I touched the handle and immediately pulled my hand back and realized I did not want to go in there, that something wasn't right. When I did go in, I quickly learned the boss had gone on a rampage and had fired three of  his six employees. Fortunately, I worked for the person who rented office space from him, not him, but the mood was black for several days.

When someone asks if I want them to do something for me, I see the "Oh, please, please say no, please, please." in between the lines. This is right along with the ones like, "I didn't know you like to go fishing, I would have asked you to come along." Substitute fishing with any other activity. Thinking about it, I don't think I would like to fish anymore.

I have no explanation for this and also do not know if others with FTD have noticed this with themselves. I would truly appreciate feedback from those with FTD as to whether they have experienced this increased awareness. 

After getting so far into this and after an interruption, I am scratching my head and trying to remember what point I was aiming to make. I guess no point, except to let people who care for or know someone with FTD know that it is not safe to believe they don't know what is going on or what you are saying to others when in earshot of you. They can probably also sense when you say things like, "Oh, you wet your pants again, come on and we'll get you changed again." you actually are thinking, "Oh, damn, wet pants again. Does it ever stop? Why do I have to deal with this?"

I am learning to use this increased awareness in my role as a caregiver as well. I am becoming able to slow down and think about what is causing a behavior or what he is needing and can't express. 

I have started letting him sleep as long as he needs, or wants, to in the morning. Well, to a certain extent anyway, If he is still in bed at 3:00 in the afternoon, which he often is, I do go and start to wake him. But I do it gently now. I will crawl up the bed and lay next to him and put my arm around him. Sometimes he says "that feels nice." or "I love you." Don't get me wrong, there are still days when he says, "No, I want to sleep some more." or "Leave me alone." When that happens I try things like "Well, you do need to come out and take your medications. If you do that, you can come back to bed or nap in your chair." 

I also no longer take for granted that he can NOT do things. If he asks for a snack, I will get it and put it on the counter. I give him a few minutes to walk over and get it. If he doesn't, I ask if he wants me to bring it to him. Never, "Aren't you ever going to come get this snack you wanted?"  I have decided that he knows when he has the energy and when he does not or when his legs feel steady and when they aren't just like I know my own limitations at any particular time. I am very aware of that since FTD gives me the same problem. I never know when my legs will work.

I am also more observant of his activities and movement. If he is has had a good evening, I will go to bed before he does. He has a list of what needs done and I go over it before I turn in: turn off the heat on your chair, turn off the TV (both red buttons), close the lower lock on sliding door, turn off all lights except the one on your table. I will admit that I do not go to sleep until after he goes to bed and I go out and check everything, especially the heat feature in his recliner. It doesn't not automatically shut off like his old one and I worry about fire. I feel, though, that I am helping his sense of independence.

On the other hand, if I recognize that when his evening has been stressful, I stay up and help him get ready. We are at about 50/50 on this right now. 

It is not all peachy though. A few nights ago, he got out of bed for three different reasons and fell three different times. When he falls, he just looks at me like "Okay, pick me up." Uh, sorry that just won't work.  I have been using the techniques I wrote about a couple blogs ago. I coax him to lie on his belly, move his legs and arms forward until he is in a crawling position and have him crawl to a sturdy piece of furniture where I can assist him in standing. The looks I get could kill because I won't pick him up. 

The morning after the three falls, he was fine. I had a really painful left hip, a large bruise on my right leg and arm, along with a very sore shoulder. I talked to him again about how he cannot stiffen his body and expect me to lift him. Then I showed him again, while he was awake and alert, how he can get himself up with me aiding him. 

I don't expect miracles and I know that as his Alzheimer's Disease and my FTD worsen, it will become more and more difficult. It is really a dirty trick to give us both dementia, but I will manage as long as I can. 

Oops, Practice What You Preach

I often make suggestions to both those with FTD and their caregivers. Sometimes, though, I forget to make those suggestions to myself.

My husband's Alzheimer's dementia was noticeably worse the past two weeks. He was experiencing urinary incontinence. It also seemed his confusion had worsened significantly. I was coping with it. I was doing two loads of laundry a day which added to my fatigue from FTD. The confusion broke my heart and if it weren't for the apathy bestowed on me by FTD, I would have been crying. I kept feeling like crying, but just could not.

Finally, he mentioned to me that his private areas were itching. I tried to kick myself in the butt, but had to settle for cuffing myself upside the head. Of course! Check him for a UTI!!!

I was lucky that I had no trouble reaching our family doctor because I was totally out of home test strips. (Suggestion, make sure to keep these in hand. I just bought a bottle of 100 for less than $10, so that was not the problem, I just forgot I needed to replace them when they ran out.) I buy ones that test for 10 different indicators of infection. They are not 100% accurate and I know my doctor always wants to run a urinalysis to verify the strip's findings, but when they turn out negative, I am comfortable that it is accurate.

Back to our doctor. She is wonderful and knows us well. She allowed my sister to pick up a specimen bottle and after I got him to fill it, my sister then took it to the lab. The doctor called first thing in the morning and ordered the meds to be delivered by the pharmacy. By 11 a.m., he had his first dose. I was extremely lucky that my sister just happened to be coming by that afternoon and that she was happy to help out. Can you imagine how stupid I felt?

In addition to the suggestion of keeping the strips on hand and not missing the symptoms like I did, I also encourage you to develop a close relationship for your family doctor. To me, once you have a proper diagnosis, I saw no sense in continuing to see a neurologist. First of all, all of them in this area are in the same practice and they all misdiagnosed my FTD as depression. Arrrggghhh!  I would have to travel 100 miles each way to see the neuropsychiatrist who correctly diagnosed me even before the scan that confirmed it. Plus, a neurologist is interested, for the most part, in your brain, not things like your urinary tract.

The other good relationship that can become a life saver is your local pharmacy. If I continued to use the mail-order pharmacy, I would save around $20 a month, but if I had questions or needed a quick delivery, I was out of luck. I actually changed my local pharmacy as well recently because a local one, whom I trust, became a "preferred pharmacy" with my insurance company. They deliver all day and into the evening and will deliver anything in their store to me because they understand our situation, even milk or ice cream!

I have heard horror stories about prescriptions filled by chain box stores with pharmacies being incorrectly filled that either did or could have caused serious outcomes.  I am not talking about chain pharmacies, just chain stores that happen to have pharmacies. Using this type of pharmacy, however, can often save you a significant amount of money. I encourage you to always, always, always check the prescription when you get it. If the pills look different, please ask rather than assuming they switched to a different company.

Something really upset me this week. I noticed several people trying to bring politics and social issues into the FTD support groups. There is no need for that, none at all. We all, FTD'ers and caregivers have an important common interest. We do not need to be divided by outside issues. In my opinion, we need to put all these personal preferences aside and stick to supporting each other. 

I do not care what your religion is, what your sexual preferences are, who you voted for in the last election or plan to support in the next one. If you are dealing with FTD, you have my love and support. To be truthful, I don't care about any of those things in my personal life either, as long as it is presented in a way to support your own beliefs rather than to reject everyone else's. 

As long as I have gone this far, I am going to address one more thing. No two people are alike and no two cases of FTD are exactly the same. Many of us deal with it in different ways. Who cares? Some people can come across as whining or depressed or desperate. Guess what? That is most likely how they are feeling at that moment and they need our support and encouragement even more at times like that.

To me, using any derogatory term to describe an FTD'ers or caregiver is inappropriate. We all address our illness in different ways. Some are able to set their diagnosis aside for the most part and to keep their lives as close to pre-FTD as possible. Others are unable to do that at all, quite understandably. Some choose to be open about their diagnosis and all that is happening to them because of FTD. I honestly believe that those or speak out, or write about, their experiences are hoping that it just might help someone else. I know that is why I do.

I have actually been accused of not really having FTD, that my symptoms aren't bad enough. Can you even begin to understand what that feels like? 

Okay, I will climb off my high horse now. The lessons I learned this week are to be more observant of new symptoms in anyone with dementia and to be more accepting and supportive of everyone dealing with FTD because we are all in the same boat.

Always Reminding Us

Confession time. I have dementia from FTD, Frontotemporal Degeneration.  What? You already knew that? I sometimes forget about it. Like this morning, early afternoon rather, when I nearly bit the neighbor's head off.

Around 1 pm, when I finally had a chance to go out for our mail and newspaper, a neighbor was doing the same. It is hot here, hotter than usual even for mid-summer. She said obviously I was moving slow today too, that she was not going to do anything but keep cool today. Oh, and they were going out for dinner so she didn't have to heat up her kitchen. It must have been hotter than I realized because I am sure I felt steam coming out of my ears. She was very lucky that my lack of filter was moving slowly in the heat. Or maybe I am the lucky one since I can still live in the neighborhood. She knows my husband and I both struggle with our dementias but didn't even ask how we were doing. That lack of filter that I was fighting sure brought it home that I have FTD.

I couldn't help but think of the "helpful" advisers who tell us to just ask our neighbors for help. Be specific and tell them what you need and they will be happy to help. I will admit, I did live in a neighborhood like that once. We used to have progressive dinners and throw impromptu cookouts in the summer and soup suppers in the winter. We would go to someone's house uninvited because we knew we would be welcomed with a cold drink or cup of coffee. Not so much in this closed-off neighborhood. Make that not at all. We moved here 15 years ago and I still miss that cul-de-sac neighborhood. 

As I walked back to the house, I was laughing to myself the whole way. I wondered if maybe I should have asked that when they go out to get some food for dinner, could they pick some up for us. I would have gladly paid for it. In fact, I probably would have paid for theirs as well. I have asked them for much simpler help from time to time and was given one excuse after another. I don't bother any more so no dinner from the neighbors. 

When I was back in the house, I received a phone call from the pharmacy. They are starting us on pill packs. Now, instead of filling pill boxes, we will have a package with all our morning and nighttime drugs in a sealed pouch, all on a roll. They are ready to start my husband's this week. They couldn't start when we first signed up because they had to work around our refill schedule. 

I was on the phone with this supremely organized pharmacist for nearly an hour. We had to go over every prescription, including dosages and when they are taken. Then we had to do the same for all the over-the-counter meds and vitamins. I was confused half way through the first drug. I kept reminding her that I have dementia and needed her to be patient and to speak slowly and clearly. By time we were done, I realized I was never going to be her favorite customer.  Yep, my FTD is surely busy today. 

I decided to tackle some paperwork that I had been putting off. I pay most of my bills online, but some I just can't. I had one that I would need to write a check for, so I went downstairs to get the checkbook. When I got down there I remembered I had one of the daily loads of laundry in the washer and detoured to the laundry room to switch it to the dryer. I was proud that I even remembered to put a load of sheets into the washer. As I was going up the stairs I was reminiscing back to when I only needed to do laundry once a week. I guess that was my husband's Alzheimer's hitting me upside the head that time.

Did you catch it? I forgot what I had gone downstairs for, the checkbook. So, I head back down. On the way, I wondered if I had locked the door when I came in from getting the mail and paper. I usually leave it open in the morning for my helper to come in, but she wasn't coming today. I went out and was quite proud of myself for remembering to lock the door. After I got upstairs again, I still didn't have the checkbook. I was done. I wasn't making any more trips down. Who knows what I would have done next. Fortunately, I looked at the form and it turns out I could do the payment directly online. I still hadn't done it but knew I wouldn't have to remember to go down and get the checkbook. When I realized payment wasn't due until September, I put the form back into my desk drawer to pay it later, there was the checkbook. I had forgotten that I keep it in my desk now instead of downstairs in my husband's. I was really happy that no one had witnessed this mess. Classic FTD story for sure.

I wish I could tell you that the day got better. After all, it had started with clipping my husband's gnarly toenails, so it had to go up from there. Didn't it?

Of course not, since the neighbor wasn't about to bring us dinner, I was going to need to cook for us myself. Except, 6:00, our usual dinner time, came around and I realized that what I planned to prepare needed to cook for a whole hour. FTD actually came in handy for this one. I soothed my carb craving and soothed my hunger by eating a cookie. Then I handed one to my husband and told him he needed to eat it because dinner would be late. He didn't care, he would rather have a cookie and didn't have a clue what time it was anyway. This time, it was his dementia that jumped up to remind me it is still there.

No way that any of us with FTD can forget we have it. It is always right there with us to remind us.

Beware of Snake Oil, But Remember Love

I have not posted a blog entry in three weeks. I hope at least a few readers missed me.  Before I get into anything else, there is something I feel I must address.

After posting my blog, comment messages or questions are sent to me via email. They are plentiful and much appreciated. However, there are often enough to nearly fill my inbox. Mostly they are from someone named "Kate." My last post brought me about 20 or so of the same email. It is from someone offering their testimony about how her husband was "cured" of dementia due to an herbal supplement.

This infuriates me!  Not because, they fill up my mail box, but because my research convinces me to believe the treatment is nothing more than a snake oil miracle "cure" that does nothing except cause you to spend money. This is not the only promised cure. There are many floating around out there. 

I will not say there is no use for these treatments. I am sure some of the supplements offer a modicum of health benefits. I am sure, however, that they will not cure dementia.  You can go directly to the FDA website and search for dementia cures and read their warnings. I prefer this site that is easier to understand.  https://www.alzforum.org/news/community-news/dementia-researchers-commend-fda-crackdown-supplement-hype

Perhaps the person who keeps filling my mailbox truly believes what she is saying. Perhaps she doesn't and is not even a she. I have no way of knowing. I do know that before starting any supplements or regimens, you should carefully research it for yourself and definitely discuss it with a qualified physician. Also bear in mind that supplements do not go through the rigorous vetting procedures that prescription medicines do.

If anyone has read any of her comments on my blog, please know that I do not endorse any products or treatments for dementia. Actually, it is the exact opposite.

That said, why have I been missing for a while? Simple truth? I have just been too exhausted to think, much less type out words that would make any sense at all.

Our caregiver/companion (I really don't know what to call her except, maybe, my salvation? How about, for now, I call her Peg?) broke her shoulder months ago and finally had it surgically replaced. She showed up here to work less than a week after her surgery. I swear they should study her healing powers. There really was not much she could do with her dominant arm in a sling except remind me of everything I needed to remember (what was needed to be done vs. what could wait for her, where I needed to be and when, and help keep my husband as calm as possible."

She has voluntarily stayed overnight a few times so that I could get a decent night's sleep. I swear he knew she was here because he slept through those nights each time she stayed. She convinced my sister to take me out of the house for a day for a break. All caregivers should have the instincts this woman has. I do not go out any more than necessary because if I do, I find she has cleaned at least a couple rooms of the house... all with her left arm!

Other than doing a little of what Peg normally does, I have no clue why I have been so exhausted and weak. I started taking an iron supplement and extra B12 since both of those have tested low a few other times and it has seemed to increase my energy level a bit. As fate would have it though, once I started feeling a bit better, I came down with a cold. 

This made me face reality. My FTD continues to worsen. Somehow, I had convinced myself that I was staying at an even keel so that I could care for my husband with his Alzheimer's Disease. Wishful thinking, I realize that now. At the same time, his dementia is worsening. I am fortunate, that for the most part, he is still easy to get along with. Except for bathing of course. He still hates that. Afterward, he says he feels better, but he just can't make the connection that it is the bathing that makes him feel that way. I guess that connection in the brain no longer works. This is such a common thing with FTD and, I guess, with all dementias. As I wrote before, switching to "wet" sponge baths has helped immensely. He does not mind the water when it is done this way.

Peg is working with me to not jump as soon as he asks for something or looks like he wants something. Included in that is to not help him do things he is still capable of doing. For instance, it takes him a long time to dress himself and it usually isn't in the best of clothes (I think he believes holes makes everything more comfortable) but what does that matter. I do make sure to remove his dirty clothes from his room at night or he would wear the same thing for weeks, even the underwear. Yes, it is gross.

Until she pointed it out, I had not realized that I was doing nearly everything for him. It is sometimes difficult to watch because I know he is struggling, but she has me convinced that it is good for him to be able to do a few things himself. When I thought about how much I insist on remaining as independent as possible with my FTD, that totally makes sense to me now. Now, I often ask him to do really simple things... like opening a box or setting a dish in the sink. He now will, occasionally even take the plates out of the dishwasher when he see me start to empty it.

One thing that continues to amaze us is that he recognizes all of his medications. He takes 13 pills in the morning. None are for dementia, obviously. Most are for his heart and blood pressure, the rest are vitamins. If I have made an error filling his pill boxes, he catches it. I cannot even do that for my own, yet he can do it without fail. Because I struggle with it, we have switched pharmacies and will soon be using pill packs to eliminate me filling the pill boxes. I have confidence that he will still be checking them every day.

Caregiving can definitely be exhausting and leaves one with very little time to do the things that were enjoyed prior to becoming a caregiver. It is not at all an easy role to fulfill. Even raising children was easier. First of all, most of us were younger and still full of energy. We were mostly not stuck at home because it wasn't nearly as difficult to take them along with us. Plus, it was, for the most part, a role we had chosen. I stress here, as well, that all this is also true for those with FTD... it is definitely the most difficult task I have ever faced. Caring for my husband makes it worse, but it was extremely difficult on its own.

Caregiving, at least for me and for many caregivers I have spoken with, is easier when we remember the love we have always had for each other. I constantly remember to give my husband a kiss (It's usually on the top of his head or on his neck because I still cannot get him to regularly brush his teeth.) or just a loving touch a little rubbing on his arm or back. Romance is definitely out of the picture, at least for my situation, but love is always there. He will come to me and ask for a kiss or to hold him for a while. It's not always at a convenient time, but I make time. Of course, sometimes, he asks me if I am his wife first. I can live with that.

I've Fallen and I Can't Get Up

It has been an interesting week in our household. Along with our "new normal" activities and adventures, we just had to add some more. For one, I got my annual case of poison ivy. Not life threatening of course, but irritating enough to make everything else seem worse. Okay, I will admit, I was really, really grumpy.

It was also the dreaded week when I needed to take my husband, who has dementia from Alzheimer's Disease, to our doctor for a check up. This included an entourage because in addition to my husband and me not being able to drive and his refusal to take the senior van, our caregiver/companion is recovering from shoulder surgery and could not drive either and I really needed her along. Before his appointment, I was seeing the doctor's P.A. for my poison ivy because by then it was on my eye lids. There was no way he would have stayed calm in the waiting room with only my sister but we needed her to to drive us all. This ended up being way more stressful than it needed to be for various reasons. The actual doctor visit was fine because she understands and knows my husband so well and he really likes her. It was just too much for him.

I knew that as stressful as the visit became, that he would have trouble afterward. What I did not realize is that it would last for two days. He was more confused than he has ever been. He kept getting himself up and dressed in the middle of the night and ask for his breakfast and morning pills. He was imagining strange events and kept insisting that there were other people here. I don't think I will ever figure out who was giving out goldfish and, no, I could not tell him if they were doing it safely. It took a while to get him calm after that one.

We finally got through the couple days of this added stress by keeping things calm and on schedule for him. We are not quite back to our normal, but we are getting there. 

At least it was until early morning when he decided he wanted to climb into my bed for a while. I had no problem with that, but I learned that a memory foam mattress is not the best bed to climb into when you are far from strong and nimble. He sat on the bed and tried to get his legs (not much strength there) up onto the bed, the memory foam had dipped from his weight on it and he slid right off.

My first instinct was to not let his head hit the marble top on my bedside table and I was successful in doing that. Now, though, he was wedged into a small space, less than 3' x 5', and there was going to be no way for him to get himself up. I won't go through all the details, but if it had been filmed, it would be a hit on YouTube. It wasn't easy for him to understand my instructions, but we did get him up safely. I knew enough to not try to lift him, especially by the arms, because that action can actually end in broken arms or arms pulled of their socket. Instead, I used my tried and true method of getting myself up after a fall. 

When asked how to get up once you have fallen, I usually give the advice of making sure you are not injured, if so call 911. If not, roll onto your tummy and crawl to a sturdy chair or other piece of sturdy furniture. I don't know how I learned to do that, most likely from falling so often.  Today, while trying to learn if there was a better or esier way to get my husband up from a fall, I found a great explanation of the technique I use.  I thought this might benefit everyone, so here is a link:  https://www.stayonyourfeet.com.au/over60/what-if-i-do-fall/get-up-off-the-floor/  They explain it a lot better than I can.

Also, here is one for how you can help someone else up if they need assistance.  It is the same basic procedure, but with some help.  https://www.youtube.com/watch?v=10jR0zjl19Y

It is essential in either case, to do an inventory of the body to check for injuries before using this technique for yourself or when helping someone else. If there are injuries, call 911 for assistance if at all possible. 

Please bear in mind, through all of this, that while extremely effective, this technique to get yourself up from the floor after a fall can be quite embarrassing in the middle of a CVS store. Thank goodness I was not too far from the pharmacy where I knew some sturdy chairs were available. Needless to say, I now shop at CVS online.

FTD Is Never Ending

During this past week, a fellow FTD'er asked the question as to whether we just get sick and tired of FTD.  I never really thought of it that way before. I hope she does not mind me using her wise question as the theme of this blog. 

Short answer?  YES!  

How can you not get sick and tired of it. Number one, we have it and bravely deal with the symptoms everyday. Secondly, I at least, get tired of it occupying every minute, every second of every day. It never goes away. It does not get better. So we deal with it. Thirdly, I get so tired of having to explain the disease to everyone. It is usually an exercise in futility anyway, because I can almost hear them thinking "Oh, it must be Alzheimer's" or "but she doesn't look sick.)

Yes, we deal with the symptoms everyday as bravely as we can. Some days, I must admit, these symptoms defeat me and I am sure other FTD'ers as well. This is especially difficult when new symptoms appear.

This week, an old symptom came out to play. When I was first diagnosed, it was FTD w/MND (motor neuron disease, related to ALS). The decision to include MND with the diagnosis was made based on symptoms. I could not take more than a couple steps without stumbling. The way they tested it was to have me walk, in a straight line, down a hallway. There was a handrail along the wall and I had to grab on at least every three steps. There were other tests they did, but that one explained to me why other people, when following behind me, were assuming I was drunk. I was ready to make a sign for my back that said "I'm not drunk, I have FTD."

These symptoms never went away, but they never got noticeably worse either... until last week. I either lose my balance or one of my legs, usually the left one, does not get the message from the brain to move. I don't have a way to tell you how many aches and pains this is causing. My hips hurt, my calves hurt, my waist and abs hurt. These pains are being caused by me contorting myself to keep from falling. Yes, I know I should use a walker. It is just that using one in my home is awkward and almost as frustrating as falling. We have a narrow hallway and doorways. We also have very tight corners.

I guess this is an example, almost, of remission. Only in this case, not the disease, just the symptoms of another one. With these movement issues, it was really easy to ignore them. There is no way to ignore them now, especially when I am lying on the floor trying to get up. With my husband's Alzheimer's, he is of no help. I am trying to remember to keep my cell phone on me at all times. I must give a huge thanks to my daughter for "forcing" me to get a smart phone a couple months ago. It gives me security to know I can call for help if the need arises.

Now, for the second point of not being able to escape from it. For a couple years, I felt guilty because every time a caregiver would talk about getting or needing a "respite," I would feel angry and resentful. Calm down now, I am not saying that caregivers don't deserve/need a break from that role. It was simply like rubbing salt in a would because, it was possible, albeit quite difficult, for the caregivers to step away for a bit.  Those of us with FTD do not have any such option. There is no way to get away from the symptoms of the disease. They are always with us, making our lives difficult and sometimes painful, full of the frustration of being limited in what we can do and realizing that it will only get worse. I finally got over the feelings of anger and resentfulness, because with now being a caregiver as well, I couldn't get away anyway.

The other thing that does not go away is the realization that we are causing difficulties for everyone around us. Trust me, there is not one of us who wants to inconvenience their loved ones. None of us are happy that we are unable to work anymore and that we can get Social Security Disability payments. Trust me, those payments don't often come even close to what we were previously able to earn. There is also the stigma of being fired for many of us. There is no question that FTD affects those with higher intelligence more often than not. Therefore, most of us were making a pretty decent income. After FTD we sit around feeling useless because we cannot financially contribute or, in many cases, cannot even do chores to absorb some of that burden.

This fact is also difficult for the caregivers. Here they are, exhausted, maybe even already worked a full day at their job, then need to come home and do everything else... cook, clean, laundry, taking out the trash. You know, all those thankless jobs. On the other hand, we FTD'ers have to sit there and watch the caregivers wear themselves out and yet we still have to ask even more things of them.

I don't have to even talk about the third thing that I am so tired of dealing with. I don't think there is anyone reading my blog that does not understand this one. How many times have each of us been asked "what is FTD"? I find myself shaking my head before I start to explain because I know, 9 out of 10 of them are going to shake their head and walk away thinking either "they don't have dementia or they wouldn't be able to know they have it" or "they don't look sick."

I was chatting on Facebook with an old friend (we have been friends for 50 years) and Facebook has allowed us to get in touch once more. I asked him if he had seen the "Sixty Minutes" piece on FTD. He had not, so I sent him the links. I knew he had watched all three segments when a friend asked, as a reply to one of our posts about it, "What is FTD?" My friend typed, "It is a form of dementia, the worst kind." He got it! If only others would take the time and effort to even just Google FTD. I get very tired of trying to explain it to people who have no clue.

So, in answer to my friend's question, YES, I do get tired of FTD and all the energy to deal with it, explaining it and coping with the symptoms.  I will admit that I even get tired of advocating for the disease, but I will never stop. I will also not stop all of those things I mentioned, especially educating others. It is something that needs to be done. It is also something that rewards me by being able to feel useful and feeling that I just might be helping others. (Not looking for complements, it is just the truth."

Exhausted

I am exhausted. There are several reasons, I believe, for my lack of energy and no desire to do anything. Of course the first is FTD. Anyone who knows much of anything about FTD knows that it steals our energy and ambition and replaces it with exhaustion and apathy. Plus, researchers have found that those of us with FTD have "fragmented sleep." What that means is that we awaken numerous times through the night and then need to fall back asleep. Because of that, plus trips to the bathroom and all, we require a lot more sleep than those without FTD to feel rested.

I am not sure that all caregivers realize that. Not only does FTD limit our energy and desire to do things, we don't get enough sleep.  In fact, most of the research results that I found all mention the caregiver fatigue as well. I don't think anyone questions that fact at all. Personally, I now require around twelve hours of sleep to feel refreshed.

When people look at someone with FTD, they might see them sitting around all day, doing nothing. Their natural reaction is that we are lazy and, since we are probably in clothes that we have worn for several days and haven't showered, that we just don't care. To some extent we, or at least I, do care. Because I am so tired and have no desire to do anything, including bathe and get dressed, it probably looks like I don't give a damn about anything. 

This part of the equation I can accept. The part that confounds me is that I do care about what others think of me. I get hugely offended every time someone does that head to foot look-over, then either rolls their eyes or sniffs up into the air, and turns away. I don't sit or stand there and think, "Gosh darn, I wish had the energy and desire to get cleaned up and dress well all the time so everyone thinks well of me." What I am thinking is "Okay, what gives them the right to judge me? They don't have FTD and don't have a clue what it is like." Since I have no buffer, I am likely to say it out loud as well.

Now, from the caregiver point of view (and still to the FTD'ers point of as well), if one more person says to me, "You have to find someone to come in and help you." Or "Ask your family, ask at your church, ask your neighbors. You just have to be assertive, tell them you need help, don't ask."

I am extremely happy for those whom have success with that. I would try asking all those people, but they have all already disappeared from our lives. Between my dementia and his, no one has anything to do with us. 

I did have a close family member who at least would call every couple weeks and check on us. He would always end the call with, "Let us know if you need something." Then he started sending cards instead of calling. He always writes, "I know you are busy so I didn't want to bother you with a phone call." Let's see now? A friendly and concerned voice on the phone offering to help, even though he is hoping I don't say "yes" or a purchased piece of paper with a pretty picture on it?  Hmmmm...

I have seen church members purposely skip an aisle in the grocery store when they see me. I have probably already written about how one of the pillars of our church asked me what was wrong when he saw I was using a cane. I told him that I have FTD and he looked at me and said those dreaded words. "You know, if you think you have dementia, then you don't."  I almost didn't hear the last couple words because he had already turned and started walking away. I was diagnosed in 2011, stopped going to church in 2012 after I talked back to the pastor during his sermon. I only got a couple words out, but he heard them. Since then, he visited our home one time and he seemed extremely nervous. I guess being with two people with dementia really makes you liable to catch it.  I later found out that he only stopped by because the President of the Women's Group learned that he had not visited and confronted him as to why. So getting help from the church is not happening. 

Where I have found help is in hiring the woman, who has cleaned our house for the last three years, to be our part-time caregiver and companion. Without reading back through my previous blogs, I don't know if I have mentioned her before, but she is my savior. Even my husband likes having her around. Perhaps because she is in his age bracket. She is 80 and he is 76. She can convince him to do a lot more than I can. She reminds me to sit down and rest. Better yet, she is my reminder-in-charge. She does not let me forget what I need to do each day, whether it be phone calls or appointments. She never writes it down, she just remembers.  Hmmm... I sort of remember when I could remember. I am so thankful for this woman. She even found a young man for me to hire to spread mulch in our yard. At the risk of making her a sterotype, she knows him from Bingo.

At the same time I hired her, I hired an agency affiliated with our county's senior services. They were to start by sending a nurse every two weeks to fill our pill organizers and surreptitiously check out my husband's health. It's been six weeks, and they have not sent one yet. Yes, they remember. She calls the same nursing service each time and they say they don't have anyone, so she drops it. By that time, I was thinking I couldn't even hire help.

Last week, though, a social worker who was provided, without cost, by our insurance company called and she had found the perfect solution for us. She remembered meeting with us a couple times in the last three months or so and kept trying to come up with a solution and she did!  It felt so good to call the so-called "case manager" from senior services and tell her we no longer needed their services and tell her I expected to received the deposit of nearly $500 they demanded to use their services by the end of next week. I guess she finally took me seriously because the check showed up today.

I sure got off the subject of being so exhausted. Our caregiver/companion had shoulder replacement surgery 10 days ago. She came back to work 7 days ago. I was able to convince her to stay with us for a few days because I was so worried about her being at home alone. What tired me out was trying to do everything before she did and coaxing her to eat. While I went out to the grocery store during one of the days, she cleaned our kitchen and family room floors. I guess I should have tied her in the chair. She has gone home now and I ordered her to not show up here for three days. It helps that it is my sister who has been driving her around. 

The other component of my being exhausted is that since she is not here, all my husband's care has fallen back onto me. That is not a complaint. I love this man and will do anything I possibly can to keep him comfortable and happy. The last part, I admit, is that I don't know when to say "enough" and sit down to rest.

What a Day for a Daydream...

This blog is going to be about how FTD robs us of the ability to daydream and remember some of our past.  But first, I've got to write about a couple other things. If you don't care about my personal life, just skip ahead two paragraphs.

First of all... Rushing around is apparently a bad idea for those with FTD, at least for this person with FTD.  I received a call from dispatch for the senior van that my van was going to be 10 minutes early. So, I ran around like an idiot. Made sure my husband was in place with his caregiver. I hustled across the garage floor, leading to my flying across the garage floor. I have many bumps and bruises. The only thing that has caused an issue is my knee which remains swollen.  Two lessons learned:  1. This FTD'er should not try to hurry. 2. Using a cane does not keep you from falling when you are doing things you know you shouldn't. What I haven't figured out yet is how does one manage to land on both knees, hit the front of your head on the concrete floor, then land hard on your back and shoulder? I didn't drop my cane though! 

The next thing is actually a blessing. My husband's caregiver, also our friend, had to have shoulder replacement surgery. I was feeling guilty that I could not go to her house and help her out. Her son only stayed until the day after surgery. This wonder of a woman never asks for help, so I was thrilled when she called and took me up on my offer for her to stay with us until she was mobile and comfortable enough to stay by herself. So, here we are, one with FTD, one with Alzheimer's and one who can't do much of anything, all taking care of each other. Believe it or not this is working really well. Who would have guessed it? Just three peas in a pod.

Thank you for bearing through my personal tales. 

Last week, during a support group meeting, another FTD'er mentioned that it is impossible for us to daydream as well as not easily remembering the past. This was an eye-opening bit of information to me.  Of course, I had to research the subject, and she was definitely correct.

Daydreaming, it turns out, is an important part of life. It is during daydreaming that we often have that "why didn't I think of that before" moment leading to solving a problem we had been struggling with. What happens is that our mind is wandering, opening it to envision answers to problems that we were previously unable to do.  Daydreaming also provides part of our individual identity.

Yes, researchers have found that this ability to daydream, as well as to remember past events, can reduce our sense of identity. When the ability of the brain to remember the past or predict what might be in our future is stolen, it seems to make us question just who we are, figuratively, not literally.

Think about what you do when you are bored. Most likely, your mind wanders and your imagination kicks in and you find yourself daydreaming.  What would happen if you could not sit and daydream?  You would be stuck in that moment. You can't remember many things from your past and can not imagine what you might do in the future. If this is true. and according to three resources I found, it is, then hink about it. If you are limited in what you can do due to your FTD and you cannot even let your mind wander into a daydream to ease your boredom, or imagine how to do something, how would you occupy your mind?

Those of us with FTD tend to be, dare I say, stubborn?  If you cannot visualize an alternative, you would want things to be the way they have always been or done. That could also be why we tend to need routines in our life, because we cannot imagine doing it any other way. 

Does this affect everyone with dementia? This problem is most prevalent among those with FTD. It does not seem to affect those with Alzheimer's Disease, certainly not to the extent it does with FTD.

I wish I had suggestions on how to "fix" this problem but I could not find anything except that over-used suggestion "Try to keep the mind busy." Wait, what you just told me is that I cannot think about new ideas. How am I supposed to learn how to do something new? Next, are they going to suggest we eat more green vegetables? Or to keep busy by doing crossword puzzles? I apologize for being cynical here, but I am tired of hearing the same generalized advice that is given to everyone. 

My bottom line here:  

Caregivers, if you know these facts, hopefully, you will be able to understand your FTD'er a bit better.

To those of us with FTD, my advice is to stop beating yourself up because you cannot figure out how to do new things, cannot remember how to do the things you used to do, need a list or post-it note to remind yourself to do things or to not do things, do not realize when you see something that needs done but don't realize you should do something about it or get agitated because there is something new in the room. It's not your fault that your brain can't do it! 

I am guessing this is why I won't let anyone move anything in my house. I want things where they have always been and can not imagine why anyone would want to move them since they are fine where they are. I realized, as soon as my friend on the support group said we cannot daydream, that I don't. If I am sitting around with nothing to do, I do what I call "zoning out". Not exactly keeping my mind busy...

War Veterans and FTD

I am sitting here writing this two days before Memorial Day is celebrated in the United States. More and more, too many people see this as just one more 3-day weekend for picnics, short trips or, here in the northeast, it is the day the swimming pools open.

Yes, it is all of those. None of these should take away from the reason we celebrate Memorial Day. It is the day our country has set aside to remember and honor all of those who have given the ultimate price of their lives in order to protect all Americans and our country.

What better time to talk about a subject that is getting quite a bit of attention and a lot of research. It is being investigated as to whether Traumatic Brain Injury (TBI) increases the risk of dementia with particular interest in FTD.

TBI has been getting a lot more attention since the Gulf and Afghanistan Wars due to the use of Improvised Explosive Devises (IED's). The incidence of TBI's among those serving in those wars is much higher than during any other war. With the recognition of those facts, more and more research is being done on the comparison of Veterans with Traumatic Brain Injuries to those without. 

The National Institute of Health has publicized a study of over 188,000 veterans. The number of those who had a TBI diagnosis were 60% more likely to develop dementia. Yes, that is 60% increase in risk!

Interesting to me is that research programs are continuing to see how many of these cases have led to FTD compared to other dementias, including Alzheimer's. In the same study of veterans that I just mentioned found that TBI's were more than 4 times more likely to be present in FTD than other forms of dementia. If this is true, if 100 veterans were diagnosed with dementia brought on by traumatic brain injuries, 80 of them would be FTD and only 20 to be spread among all the other dementias.

There are additional continuing studies on these findings. After discovering this in veterans, the researchers are considering whether this is true of anyone who experiences traumatic brain injuries. These could be from playing sports, accidents or any hits to the head. This is the reason so much more attention is being paid to the importance of preventing TBI's and concussions in sports. 

I can only speak for myself, but when I was younger I had confirmed diagnoses of two concussions. I also had head injuries at least once a year, usually to the front of my head. My family would joke that we finally knew it was Summer when Cindy had a huge (and very painful) lump on her forehead (usually from falls down to the concrete). I also know, from speaking to others with FTD, many had suffered concussions and/or head injuries in years past.

I am not implying that head and/or brain injuries are the only or even the largest cause of FTD. For instance, I also have a family history of FTD and dementia. My only thought is that these head injuries may have made me the likely one in the family to develop FTD instead of others. 

It may be years before we know if these studies pan out to anything but, to me, it is reassuring that such studies are being done. One more reason I support the AFTD.

I must end with a huge and sincere expression of appreciation to all who died to defend our country, to the families who went on without them and also to all those whom have been dealing with injuries ever since their service. Yes, I do know Memorial Day is only for those who died, but when I visit the VFW post and see the artificial legs or scars from head injuries, how can I not include them? Their lives have been changed forever as well.

It is okay, though, to still enjoy the day off as well!  Just avoid those crowds, noises and commotion of the celebrations. I know I will be staying here at home the entire weekend. Oh, wait! I do that every weekend... Okay, I'll grill some burgers, after I put out the flag.

Talk About FTD... Please!

Last evening, while wasting time on my computer, I reconnected with an old friend. (Isn't that the best part of Facebook?) Let me rephrase that... I reconnected with a friend I haven't talked to in quite a while. He and I both may be retired, but I refuse to believe we are old. Except for the fact that he mentioned he saw patients for over 38 years before he did retire.  Then I realized that it has been about 45 years since we last sat down and talked. 

He mentioned the 38 years as part of a statement that he had been seeing patients that long and, yet, had never heard of FTD. He has never been one to stop learning, so this is sad proof that the word about FTD is just not getting out there.

I always come home from the AFTD's annual Education Conference with my spirits lifted. I hear about the advancements in research and am confident that everyone there is doing their part in spreading the word and trying to find a cure. 

While that is true, they cannot do it all. The 60 Minutes story that was broadcast two weeks ago goes a long way as well, but with only 14 minutes of content, it didn't go far enough. The hopeful part is that, now that people have heard that FTD exists, it will be talked about even more. Some day, I hope, it will be recognized as its own disease and (meaning no disrespect to step children and step parents since I am a stepchild) no longer be the red-headed step child. Sorry, but I do love my cliches.

I am so very tired of hearing FTD not being referred to by that name but instead being labels as "Other Dementias."  Alzheimers Disease and "Other Dementias" or even worse, Alzheimers Disease and Related Disorders. Even more irritating is, since those are long titles, it keeps getting shortened to just Alzheimer's Disease. 

Last year, while serving on Pennsylvania's Governor's Task Force on Alzheimer's Disease and Related Disorders, the name kept being abbreviated as ADRD. To make it worse, they kept saying "Alzheimer's" alone when speaking. I know they got tired of me reminding them that there is more to it than just the "AD".  At least include "related diseases" or something similar to recognize we were working on a plan to address ALL dementias. I knew they were tired of me saying it because I saw many eye rolls. I thought if I said it enough, some of them might actually "get it" and acknowledge the ever elusive "related disorders."  If not that, then at least start saying it just to shut me up.

The responsibility for educating the general public is not only the job of the AFTD or government agencies. I believe it is the job of every one of us who knows FTD. My friend watched all three reports related to the 60 Minutes story, the 60 Minutes Overtime as well as the follow up story aired on CBS This Morning. He also watched my presentation during the Lifelines closing portion of this year's conference. I know my friend well enough to know that he will talk about it to others. Then, hopefully, they will then talk about it to others who will talk to others who....

My daughter and my sister (and probably a lot more who have heard it from me) talk about it every chance they get. You already know that I do that as well... probably to such an extreme that people get tired of hearing about it.  I talk about it at my chiropractor's office, my doctors' waiting rooms, really anywhere that I have a captive audience. I also never go to see a new doctor without an NIH brochure on FTD in my hands to leave with them. On a recent return visit to a new (to me) physician, a member of his staff told me that she had seen him reading it at his desk and she was pretty sure he kept it. 

I had finally broken down and gone to a podiatrist prior to attending the AFTD Conference so that I would be able to walk without grimacing in pain. (It worked by the way!) He looked at my chart and asked me about my FTD. I thought I was going to get the standard question of "What is FTD? I've never heard of it." Instead, he told me he had a friend who also had FTD. We spent the entire appointment talking about it. Yes, he did take time to diagnose what was wrong with my feet and gave me some good old school treatments. I did walk pain free at the conference. Just what I love in a doctor... well informed, intelligent and tries conservative treatments first!

One good news/bad news aspect of FTD, at least for me, is the lack of inhibitions. I will, and do, talk to anyone. I can do public speaking without any nervousness. Though I do still obsess about it. It's kind of a bad combination when you get FTD while you have had OCD your entire life. I actually printed three copies of my presentation and packed one in each bag while traveling. That way if a bag got lost or stolen, I would still have one. It's a wonder I didn't sew one into my pocket. Hmmm.... good idea for next time?

In the meantime, the AFTD was live streaming most of the conference. It is now available online. Simply go to theaftd.org and it is under "News and Events".  Or, here is the link:  https://www.theaftd.org/2019-aftd-education-conference-materials/   I think it is wonderful that they have done this. Now all those who were unable to attend the conference can get all the same information the conference attendees received.  

I will end this by asking, no, begging you to spread the word. Look those people who believe that, since they never heard of FTD, there is nothing wrong with you right in the eye and say "Let me tell you about it!"  I often go as far as saying "You never heard of it? I hope you never get it because it kills you." Sometimes I get angry enough to get even more "in your face" about it but I won't suggest for you to say what I do at that point.

I don't really care what you say, just please talk about FTD!

Travelling with FTD

Time has been flying by!  I apologize that I have not posted anything new for 2 1/2 weeks. The first week, I was getting ready to go to the AFTD Educational Conference, the next week WAS the conference and then it has taken me a week and a half to recover from the trip.

Speaking of the conference, it was fantastic!  They had a new format and things seemed to flow much more smoothly. The presenters did not talk over my head like they often do. I actually skipped the research presentation because this subject is usually so far over my ability to comprehend that I would become quite stressed. So this year, I went to the quiet room. I was supposed to staff the quiet room for a while anyway, so I thought this would work out well. Then I find out I missed an excellent presentation.

That should work out okay in the long run. Because the AFTD live-streamed much of the conference, it will soon be available online. I am looking forward to seeing the part I missed. I will admit that I am also looking forward to seeing my presentation, out of curiosity. Every one kept telling me how good it was, yet I thought I messed it up in a couple places. Oh well, I guess I proved I have FTD.

I really, really, really had a good time at the conference and want to congratulate the AFTD on its success.  It is obvious that the entire staff put a lot of work into it. It was not all sunshine and roses for me though, unfortunately.

I kept becoming stressed as I would realize I had lost things. First is was all of my cash, then my new noise canceling headphones, followed by my cellphone. They all were nearly followed by me losing my sanity!  While packing, I carefully divided my cash into three piles and hid each in a different bag. I was so clever, at least I thought so. Reminder to self:  "Next time, tell someone where you are hiding it!"  That's right, I couldn't remember. Once I remembered one, I relaxed and quickly found the next. The third I did not find until the next morning. That morning I also found my headphones after my daughter suggested I ask at the front desk. Someone had turned them in! The cellphone was easy, we called it and "Whew! I had actually left it turned on."

Let me get back to the present.  I am still exhausted, yet I have been home for 10 days now. When I am at the conference or any other event I love. (though I can't think of any), I run on adrenaline. I am so happy to see all my FTD friends, my friends from the AFTD and making new friends. I also love learning new information and sharing whatever I can contribute. 

All this comes with a price. Once I get home, I crash. I am left with no energy and no desire to do a danged thing. I sleep more hours than usual, take naps and don't do much at all. I understand and expect it now so I don't beat myself up over it.

In the support groups I often see questions from loved ones and caregivers about how their FTD'er doesn't seem to want to do anything but sleep and has interest in the usual things they enjoy or do. Some even regress in their abilities. After asking, I usually learn that there was a big event... a wedding, a graduation, a family reunion, visitors in the home or, yes, even the conference trip.

Just like I described in my recovery process from the conference, it is a common reaction to too much stimulation. Just about any activity or interaction with people can have this effect. Fortunately, in most cases, if we are left to rest both our bodies and our brains, we bounce back to how we were previously. 

This worsening of condition can occur after even a visit that only lasts a couple hours or simply a shopping trip. I say "simply" but there is no activity is simple to those of us with FTD. Anything outside our normal routine is a challenge and a drain on our energy and brain. I call it "Brain Strain." Please don't try to force them back into their regular routine, let them recover with the time they need.

I have done nothing since getting home from L.A. except one short visit to the grocery store. It isn't until today that I have any energy to do things. The first time I experienced this, I was frightened because I thought my FTD had taken a nose dive.  This reaction also causes the caregivers and loved ones to panic or not know what to do. My answer is always "Let them rest as much as they can and keep their routine as normal as humanly possible."

An expert in dementia, Dr. Oscar Lopez of the University of Pittsburgh, explained to me (after he gave me my diagnosis) that in almost all cases of FTD, if the progression is slow, it remains slow. Unfortunately the reverse is also true. If the progression is fast now, it will not slow down. Because of his belief, he repeated my SPECT scan exactly one year after the one he used to diagnose me. Fortunately, mine is fairly slow progressing.

Because he explained that to me, the first time I crashed after a big event, I had faith that I would recover from it and I did. I am not afraid to push myself to get to conference, firstly because I know once I get there I will run on adrenaline and, secondly, that once I get home I will bounce back eventually.

I will admit this time it has taken longer. I am sure part of the reason is that as my FTD does progress, it will be more difficult to recover. For this trip, though, I blame it on the fact that I had three flights and two lengthy layovers to get there and again on the way back. I scheduled these deliberately so that I could connect with my daughter and have her with me for the long leg of the trip to L.A.  I will also admit that I had a horrible meltdown in the Pittsburgh Airport. I was so fortunate that two other passengers stepped up, got me to sit down and get the situation taken care of. When deplaning, two other lovely women made a point of coming up to me and telling me that the check-in person was rude and did not handle the situation correctly. Without these four ladies' assistance, I am sure security would have been called and would have never made it to California. 

I hope that my telling you about my experience will help you stay calm when your loved one is having a meltdown during travel so that things do not get out of hand. Also, when others offer to help, allow them to. This is for FTD'ers and those caring for them. I doubt very much if I will ever book my travel to include changing planes and layovers. 

Also, remember TSAcares. They are fantastic. The TSA agent in Pittsburgh and L.A. both called my daughter ahead of time to assure me they would take care of me and they did. Wheelchairs were waiting at all the gates and they took me to the next one. The wheelchair attendants even offered to stop at the bathroom. When arriving at the airports, TSA took me to the front of the line and assisted me going through the screening. 

When my daughter and I arrived at the L.A. airport to return home, on an early flight, the TSA line was probably about 200 people long. It was early so there was only one line open. I nearly panicked when I saw it and kept repeating "I can't do this, I can't do this." They made sure that I could.  The phone number is 1-800-TSAcares. Web address is www.TSAcares.gov. Call about a week ahead of time for best service, or you can call up to 24 hours before your flight.

I am not sure my writing is the best right now, but I hope you got two things out of this:  The AFTD Conference is well worth the stress and inconveniece of travel... and, please allow anyone with FTD to recover from any stressful event at their own pace. Also, the event may not be stressful for someone who does not have FTD, yet will be very stressful for the FTD'er.

Hopefully, I will see you all at next year's conference. It will be in Baltimore in mid-April. Info should come out around the first of 2020.

Are They Really Out To Get Me?

I don't think there is anything more frustrating to someone with FTD than to be told they look like there is nothing with them.  I know how much it frustrates and irritates me because I know I don't look nearly as good as I used to.

Yesterday was a glorious day, so much so that I went outside and sat on the wall along our driveway to soak up some  sun. Our neighbor saw me and came over. We spent a few minutes talking about the new neighbors and the progression of my husband's Alzheimer's Disease. After a few minutes, he looked at me and said, "Cindy, you are looking good." I replied that it was because FTD doesn't always show in the face until later stages. His reply, "No, you really look good."  After bristling a bit, I replied "Thanks, I guess the strain and fatigue of caring for someone with dementia when you have your own kind of dementia just doesn't show on the face."  That was my polite way of saying "Stuff It!" I guess he got it because he walked away shortly after that.

This really bothered me, as usual. I was angry and felt rejected as a person, not just as someone with FTD. Then this morning, I read a caregiver's post on one of the support groups about how her loved one is so paranoid.  My immediate reaction was "Oops!" I consciously realize that I do suffer from paranoia. My FTD friends have often remind me of it when I am questioning them about how someone has treated me. That is why I reacted to my neighbor the way I did. I did not believe him that I looked good, even if he was implying that I was looking good despite all I was dealing with. I probably did look better than I usually do because I had been sitting there relaxing and probably even had a little color on my cheeks for a change.

Responding to this caregiver's question really made me think inwardly. So, why do I suffer from paranoia. A huge part of it has to be the anger and frustration I feel at not being able to do the things that I was able to do pre-FTD. Not being able to, and, not having the energy to do them even if I could.

I know I have previously talked about the loss of my artistic talent and how that has affected me. I hate it! I loved my painting, my ability to create gorgeously decorated cakes and the awards I have won for my ceramic art. Perhaps I took too much pride in them, I don't know. While I loved my accomplishments, I always down played them to others. I think it is more that I experienced self-satisfaction from it. It was more a part of my self-identity. We all need to feel appreciated and that we can accomplish things that we want to.

When FTD robbed me of these talents, my identity, it was beyond frustrating and I realize created a lot of the anger I had toward the disease. Now, whenever anyone talks about my artwork or sees some of it, I cringe. I don't want to hear about it. In fact, most of my artwork is hidden in the basement. Seeing it makes the feeling of loss much worse.

In addition to the loss of my artistic abilities, I have lost my ability to cook the way I used to, not to mention baking. Again, I felt people identified me by these abilities. I do recognize that, for someone with dementia, I do look fairly good. Plus the fact that I still smile easily helps some as well. However, when someone says that, I believe they are lying just to make me feel better. Yep... paranoia!

Does FTD cause paranoia?  It surely can.  "Paranoia is sometimes a symptom of certain physical illnesses such as Huntington's disease, Parkinson's disease, strokes, Alzheimer's disease and other forms of dementia." (Quote from Mind, For Better Health website."

Paranoia can be much more than just thinking someone is "out to get you". Yes, it does often manifest itself in that way. However, it does a whole lot more. It strips a person's confidence and can leave them lonely and frightened. It can cause panic attacks and the tendency to worry about absolutely anything and everything. People with paranoia often appear to be selfish and self-absorbed. Those with paranoia often push people away and when that starts to work, they believe this is proof that they were right all along.

Another point is that depression and anxiety can cause or worsen paranoia. I don't know of anyone with FTD who does not have some degree of both depression and anxiety. You can see, therefore, how these things just compound each other.

So, what do we do?

Advice for the caregivers:  Understand what paranoia is and look for the signs of it in your loved one. Many people with FTD need constant assurance that they are okay and that they are still loved. They can also have a fear that their loved ones will leave them. Myself, I realize when I am being obnoxious to my loved ones. I don't mean to be, but I also cannot stop that behavior. I have the behavior variant of FTD and there are a lot of behaviors I cannot stop before I act out on them.

Also, as difficult as it is, try to realize that the nasty things they can say, accuse you of doing or nasty things they might do, are possibly stemming from paranoia. Try reassuring them even more that you love them and will always be there for them. Come think of it, this happened in my life just a couple weeks ago. My husband's anxiety level was going through the roof and I was at my wit's end. After I calmed down, I sat down with and talked. I ended up reassuring that I had no intention of putting him in a nursing home and that the only reason he was in one for a couple months was a separate illness and once it was under control I had fought everyone there to get him home. He was so much calmer and I could only wonder why it had not occurred to me sooner that he was worried about this. Now, I wonder if his anxiety was from paranoia causing him to think I was trying to get rid of him.

My advice to those with FTD is basically the same. Try to learn what paranoia is and what things that are frustrating you just might be a feeling of rejection that are being caused by paranoia. Also, paranoia, depression and anxiety can all feed off each other making each worse. Do not be afraid to seek counseling to help you through. Therapy is covered by Medicare or there are often free or reduced cost mental health services available. 

Personally, I see a psychologist, at least once a month, and she has no problem telling me that what I am complaining about is really my own paranoia. Seeking help or recognizing paranoia, anxiety or depression does not mean you are crazy or that you have a mental illness. It can be symptoms of FTD. Talking about it with a confidential and neutral person helps me immensely.

Also, for those with FTD, stop and think if perhaps some of the problems and/or anger between you and your, family members, friends or caregivers just might be signs of paranoia. Many with paranoia firmly believe, not just think possible, that no one wants anything to do with you. Then, we convince ourselves that, "See, I am better off alone," and pull away from others even more. It can be a vicious and endless cycle. Look for ways to end that cycle. Talking to each other calmly, talking to a neutral psychologist or even a friend just might help you realize that you are looking at things through glasses formed from paranoia.

For me personally, it is a good thing I am scheduled to see my therapist soon. After researching this topic, I know I have a lot more to talk to her about!