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!

Keep Calm and Try to Lessen Stress

I apologize for taking another break from blogging. For the past month, I have been getting my house ready for sale and keeping it model home perfect. Fortunately, I had an offer in just four days at the full asking price. That should have removed most of the stress and anxiety I was experiencing. My FTD never allows my stress and anxiety to ebb to the point where I am comfortable. Add in the paranoia that FTD has given me, I will not be able to relax until all is done here and I have moved into the new house.

About that: When my husband passed away in November, I said I would not make any major decisions for six months. Around the 3 month mark, my sister and my psychologist both reminded me that I had been planning to move near my daughter for several years but was unable to convince my husband. I am quite proud of myself that I actually let my adult daughter pick out a house big enough for us each to have our own space. Turns out, she is having one built. I asked her to make all the decisions about it  in order to not add more stress and anxiety to my life.

So, my house sold very quickly and the home inspection was scheduled for today. I never stopped to think that it would be cancelled due to the COVID19? Turns out real estate is not an essential business and is shut down. I am now paranoid that it won't pass inspection and I will have to go through the entire process again. Fortunately, my realtor is very helpful and keeps reassuring me.

How have I been surviving? Lists, lists and more lists. Even simple little things that I would not have to think about. I have actually figured out who will help me when I ask (read that as "beg"). The only ones I can rely on is my brother in law (and my sister), along with my niece and her fiance. Without them, I would have not been able to show the house. They, along with my daughter who is three states away, can calm me down.

It is a relief that no strangers will be roaming through my house looking in every nook and cranny so that I can stop worrying about their health affecting mine.

I am happy self-isolating. I have always self isolated to some extent, but am now pretty close to self-quarantining. I take this very seriously as should every one with FTD and their caregivers. FTD, as most diseases, weakens our immune system, making us more vulnerable to any virus. Obviously, this is something for caregivers to do as well. The Corona virus has a long incubation period yet the person may not show any symptoms for two weeks which risks it being transferred to everyone they are exposed to. 

I have not allowed my caregiver to visit at all this week because she had a sore throat. I will not allow her to come next week either. Self isolating is really easy for me since I don't like anyone around me anyway, especially when I am stressed.

I did go to the doctor yesterday, but they were taking many protective measures so that I was not closer than 6 feet to anyone and they cleaned the exam room before I went in. Only two patients were allowed in the waiting room at one time and they were limited to one person assisting them and no one under the age of 18. All of my other appointments have been cancelled. The only reason I went yesterday was a UTI that did not resolve with the first round of antibiotics.

Urinary Tract Infections must be taken very seriously. I tell those with FTD and their caregivers this all the time. It can cause a worsening of any or all FTD symptoms. They should be checked out any time there is a rapid increase of symptoms. Obviously, the cause is not always an UTI, but it is the easiest to rule out.

When getting ready to write this, I searched "FTD and urinary tract infections" and what was at the top of the list but a blog I had previously written on the subject. I guess I never learn. I will give you a link about that if you want to read more: https://ftdnoflowers.blogspot.com/2017/09/urinary-tract-infection-and-dementia.html

Reading back over what I have written, it reads disjointed to me. I apologize, today is a bad FTD day for me. The most important thing I have to say is, "Don't panic about the Corona Virus, prepare for it." If you don't have bleach spray, you can make your own if you have bleach, a 30 to 1 dilution. Washing your hands thoroughly with bar soap is better than hand sanitizer. Above all, don't allow your FTD'ers to watch non-stop TV reports about it. Most of us can not handle the added stress, anxiety and fear.

Decisions, Decisions

I sat down to write this blog because, even though it taxes my brain at times, my body needs to rest. Both are exhausted but this will use my brain differently than it has been the past few days. 

When my husband died back in November, I promised myself that I would not make any important decisions for six months. Here it is, only three, and I have made a huge one. If you don't know, I live in beautiful Central Pennsylvania very close to where I grew up. My adult daughter is firmly ensconced in the southern part of North Carolina. She has a great job and quite a few friends. I would never ask her to move back here. 

Instead, I am taking the leap and moving down there. I met with a realtor last week and will activate the listing in two weeks if I get everything spruced up by then. This is a monumental task for anyone, much less someone with FTD. I am blessed to have a niece and her fiance who are always willing to lend a hand even during the times when all I can do is watch them work. I also have my sister and brother in law who will do anything I ask of them.

They are the four whom I will miss the most when I move. There is only a small handful of others. I do not count those who say to call them anytime for help. Oops, they are busy that day or Aunt Susie's granddaughters's friend's next door neighbor needs them to help them that day. They are also the same friends and family who never call, visit or invite me to join in family functions. 

Anyone with FTD understands what I am saying. Because these people are uncomfortable with my new normal, they are more comfortable avoiding contact. I can only assume that if they don't see me, that I and my FTD don't exist.

I know making this move is risky in that all the work, planning and confusion could cause my FTD to worsen. So this is a conscious decision to take the risk that will help me more in the end. In the meantime, the local Rescue Mission loves me. They have come three times already with their large van to take things to their thrift store and I am well into the fourth load. My trash man may not though. One side of my double garage is filled half way back from the door with things to go out. I guess he really does love me because he told me not to worry, just give him a call when I am done or nearly so, and he and his guys will come pick it up right from the garage.

I have been packing some things already, especially in my husband's dungeon, pack rat haven or whatever you want to call what he insisted was his office. I am having it brightened up with some paint so I had to pack a lot of things to make room for the painter. However, I do not plan to do it all myself. I will hire packers to do what I don't get around to doing. I am trying to pace myself and not do too much in one day.

I present you with a word of advice. Sort through all your stuff now while you still can. Possibly even mark who gets sentimental or valuable items to avoid family feuds later. Doing a little each day should not exhaust you too much.

Enough about all that. I am pacing myself but, yes, I do realize I will exhaust myself. 

As I mentioned earlier, my husband died on Nov. 18th, 2019, from complications from Alzheimer's Disease. His choice was to have his body donated to science and, once we were not wrapped up in mourning any longer, to return to his hometown in Illinois and have a Celebration of Life. He was surely thinking of making it as easy for me as possible. He also had not cultivated any friends since we moved here and joked that no one would show up anyway. Many were shocked that I had no viewing or funeral service but I honored his wishes.

My daughter and I are trying to plan this celebration for a weekend in May, working three states apart and three states to his hometown. Last Fall, I purchased a notebook with erasable marker pages. For anyone who is not super-organized, it is a great help. I started using it when my husband began getting hospice support here at home. Next was for all the paperwork I needed to complete. There was a long list of that! I simply erase as I accomplish a task. I am using it again for the celebration and for the move. It may just be tricking me into feeling organized, but I'll take even that. Before you ask, you can see them online at The Grommet. They are not cheap, but well worth the price and should last forever.

Forgive me because my mind is just spinning and where it stops, no one knows. I sure don't. I learned a huge lesson yesterday and today. On Facebook, I re-posted what I thought was a hysterical political meme. Mind you, I usually avoid any political posting but this made me really laugh. In my mind, it was making fun of every political entity, not just one candidate. This meme did not even mention a particular candidate. Holy crap!  I was attacked. One person assumed that I was an uneducated, unaware idiot and suggested I find a child who could educate me. I will never, ever post another even remotely political item on Facebook. Since I have had FTD, I have the most horrible of all paranoia and I take everything seriously and to heart. I don't understand sarcasm either, but I do know that was not what this attack was.

I can survive moving, dealing with selling the house, attending conference and planning my husband's Celebration of Life. I cannot survive being attacked by others who happen to disagree with me. They can disagree all they want and even post that they do but attacking someone so viciously is nearly unforgivable. I will survive though because I recognize that there are a huge gambit of opinions out there and everyone is entitled to theirs, even me, the uneducated one who needs to be taught by a child.  

Maybe I will ask the 3-year old boy I am going to meet tomorrow. I am betting that what I will learn is that we should respect everyone and their opinion. That we can have opposing views of each other civilly and still respect the other because we are all in this together.

Hmmm..., this could be said about all of us with FTD as well, couldn't it?

Zeroes and Heroes or Somewhere in Between

Many years ago, I took a few classes on psychology. I wasn't pursuing a degree nor a career in the field of psychology, I was just fascinated by it all. I don't remember much from those courses, but there is one lecture that has stuck with me all this time. 

The lecture began about how some people rate others on a scale of 0-10. It is pretty much self-explanatory. Someone you despise would be a zero. Someone you idolize would be a 10. Unfortunately, it didn't stop there. Apparently there are many who rate others only as a zero or a ten. I wasn't quite that bad, mine was more of a 0-3 to 7-10 scale.

I had always sought out the company of two different groups of people: those who I could help and those who could help me. Thankfully, this happened in my early 20's and I started seeing the value of everyone and how narrow-minded I had been. This greatly helped me in my career and in my private life as well. 

What on earth does this have to do with FTD? The answer is simple. There are many people who view all of those with FTD as a "zero" and view all caregivers as a "10". The reverse is true as well.

At the risk of offending caregivers, I will start there. I have heard and read many caregiver comments about how horrible their FTD'er is. How they don't do anything to help around the house, how they wet the bed or poop in their pants, how they only want to eat sweets, how they have gained weight and how rude and unappreciative they are. This is only a small fraction of the complaints.

I am going to keep my response to that simple. These things are not a conscious decision for the one with FTD. It is a compulsion they cannot control, especially for the poor diet choices. The FTD brain craves sugar and carbohydrates. I read somewhere that the brain is fed by sugars and it realizes it needs help so it demands them. I think I am remembering it correctly. It makes sense to me, but I won't swear it is accurate. 

FTD'ers don't help around the house, at least not properly, because they can't. You should see the basket of laundry I just folded. I cannot fold a shirt. I cannot even fold my underwear. Forget a fitted sheet and even the towels are all catty-wompus. That means messy in case you don't understand Cindy-speak. Telling me to vacuum the floor may end up with me vacuuming the kitchen or not remembering where the vacuum even is. Add to that the fact that every seemingly small task we do exhausts us. The more exhausted we are, the less our brains work. 

Trust me, no one with FTD wakes up in the middle of the night and thinks that it is too much trouble to go to the bathroom so they wet the bed. Nor do they deliberately dirty their pants during the day. Our bodies and brains do not always communicate. Our body needs to move its bowels but the brain doesn't realize it until it is too late. 

Our sense of taste changes with FTD. What we used to like to eat may not taste good anymore and some days it may be that nothing tastes good. Well, except for the sweets. Adding a little agave nectar or honey, even sugar, to the food may even help with that problem.

Before you get angry and quit reading, I will switch to the vice-versa. Caregivers are not all evil, screaming lunatics either. They often break down from frustration. They may even scream. This is not because they are evil or they are bad caregivers, it is that they do not understand what is causing the FTD'er to act the way they are which leads to total frustration. They are also exhausted. In most cases, they must now do all they used to do plus all that the FTD'er used to do. 

Caregivers also realize that their role will not get any easier as the FTD progresses. People tell them to just ask for help. So easy to say to someone, not so easy to obtain. It's not easy to ask and the excuses received in response are endless. I must also mention that having someone else pitch hitting is not always welcomed by the FTD'er who can become uncooperative.

Those of us with FTD have to remember that it is not always possible to have meals on the table right when we are ready to eat. Those meals may not be of top quality sometimes due to lack of time and energy. It would help, also, if we could remember that we just asked for the same thing five minutes ago!

Yes, I know, I have written about these things before. I have especially written about the things that stress both the FTD'er and the caregiver. I just had to reiterate a lot of these things to try to get across the fact that NONE of us is perfect. The reverse applies as well. None of us deliberately tries makes the other's life miserable. 

However, if you think about it, none of us was a zero and probably very few were 10's prior to the invasion of FTD. None of us was without faults but I am sure that all of us had many positive sides. Life is not zero or a hero. It does not matter how good of a caregiver you are, you are not a 10. Though, if I am honest, I can think of a couple who are close to a 9.9. The best part is that they don't even realize how good they are. 

For the FTD'ers, none of us are a 10, probably not even close to it. Many of us do our best to be helpful and not to complain (too much anyway) and be appreciative of all the caregivers do for us. At the risk of sounding like a cliche, we need to meet in the middle of the road. If we both manage to be a 5, perhaps we can make a 10 between us.

I must close by telling you what inspired this post. During my husband's last days, I kept reassuring him and telling him it was okay to go, that I would be fine. Finally, my helper told me that "You know he doesn't hear you, you have not whispered to him in years." Uh, I admit she was right. When I went back into his room, I spoke to him in my normal not so whispering voice the exact same thing I had been telling him all along. He actually opened his eyes and I do believe he heard me. Later that evening when I gave him a kiss, which I did a lot, he responded and kissed me back. I bet you figured out the end to this story. That was the night he passed on. Neither one of us was perfect. Not when he was serving as my caregiver, nor when I was his. What we did do, was always take a few minutes each evening to remind the other how much we still loved and shared. I will treasure that kiss forever. It is at least tied with our first kiss, if not better.

Please try to take those few minutes everyday to reconnect. It may make a big difference. But don't whisper!

Missing Family and Friends

As well as I know I have FTD, I also know that the day will come that I won't have any friends or family remaining who will still want to deal with me.

The first reason is one I have written about so many times. For whatever reason, when someone hears a person has FTD they start avoiding them. I have no idea whether it is that knowing someone they love has dementia makes them afraid to face their own mortality. Perhaps it is because they don't want to be saddled with any responsibility of taking care of someone with dementia. Maybe they think it is true that everyone with dementia is the same and does not realize what is going on, so why bother to visit since they won't remember anyway. I don't think any of us will even solve that conundrum and we will never understand why.

Then comes the difficult reason to admit. I fear that one day I will offend enough people to the point that no one will even love me anymore.  Yesterday was an excellent example.

I had offered to pay a couple family member to come to my house and help me go through more of my late husband's "things" and there are a lot of them. They agreed to be here at noon. When they finally arrived at 2:30, my FTD had me quite wound up. Me, I started working on things at the noon hour when I expected them. Now, I must add, they did send a message that they would be late but, of course, my  phone was upstairs so I didn't read it until after they had arrived. 

Fortunately I love these kids (actually 20 somethings) so much that I kept forcing myself to calm down and kept reminding myself that some people actually have lives that don't include helping me clean out the basement and garage. When they did arrive, without much of a howdy do, I assigned them tasks. I was very glad that I had calmed myself down because they worked quite hard and I have to say that my garage has never looked so clean! Not even when we moved in!

You all probably know already how much any activity can exhaust someone with FTD. If I cook dinner, I am often too exhausted afterward to even eat. I hate it! So you know that working pretty much non-stop going through everything in a file cabinet and an entire closet where my husband stored everything he didn't know where else to put it. It is made even worse because of the emotions involved with going through his things. Around 5:00 or so, a dear friend came by. He is an old family friend so I knew his coming by would not bother the kids and we had not seen each other since weeks before Christmas. This is when the trouble started.

He walked in and a cloud of cologne hit me. He always wears cologne, but this was a different one and it immediately attacked my allergies. Part of the problem was could have been that after breathing dust and probably mold for five hours, my allergies were already kicked into high gear. However, I was exhausted from working so hard for a few hours so reason was not going to be part of my response. 

Without even thinking, I asked him, "What did you do, take a bath in cologne?" He snapped back at me, "Not exactly and there's nothing you can do about it now."  Ohh, them's fightin' words pardner. I said something to the effect that I could send him upstairs to wash it off or he could go home, take a shower and put on different clothes. 
His quick response was "Go ahead and try."

I looked at him for a bit and remembered how long he has been a friend so I choked back the next words my exhaustion and FTD were wanting me to say. There were more unpleasant moments, like when he looked at a couple plastic totes that I had very carefully packed using bubble wrap and lots of packing paper. He said "What the hell is that? It looks like boxes of garbage. I explained it was just the packing paper he was seeing and then he said "It still looks like garbage to me." I took a deep breath and explained that they were two totes packed with expensive dishes that our aunt had passed on to my daughter and that they are in no way garbage. He had to do it though. He said one more time that they still look like garbage. 

At that point, I so much wanted to ask him to leave and never come back but I took a couple more deep breaths and let it go. I knew I did not dare open my mouth or this 50-year friendship would be over. Instead, I said that I thought it was past time for us to knock off for the day and invited the kids along to our planned dinner out so I would have a buffer.

It helped a lot. The kids are quite entertaining and I talked mostly with them, including him at times. When he drove me home and came in to visit a bit, I was very careful and kept things light. As exhausted as I was and irritated to boot, I did not trust myself at all. 

I can see that, as my FTD progresses, the more I am going to offend people, perhaps not even realizing it when I do. Even though I have explained to people, including him, many times about the symptoms of FTD and how they affect my words and actions, they just do not get it. They think they do and say they do, even to the point of reminding me that I have already told them thank so they understand. 

You all, I am sure, whether one with FTD or as a caregiver and/or family member, have had to deal with similar experiences. I wish I had an answer but I don't. I have explained it so often and in so many different ways that I truly do not think they will ever get it. Perhaps, unless you have dealt with FTD in the first person, it is not possible to understand. 

I often become resentful that I need to measure every word and every action beforehand. That is nearly impossible for someone with FTD to do. We have no impulse control, little or no empathy and enough apathy that we often don't care if we insult people.  Attempting to control everything you do or say is exhausting if possible at all.  I want to scream to the heavens, "I'm sorry, but I just cannot help what my brain does or what it makes my mouth say!"

Some family members and a couple friends seem downright insulted that I prefer talking to my FTD friends, whether online or on the phone, over talking to them. It is comfortable to be talking to someone who cares and who understands. It is relaxing and assuring to be understood and loved despite this disease. It is so much easier to get the correct words out and understood when you don't have to measure every word before it comes out. At least I used to do that. I can't anymore. So, I foresee the day when my FTD friends are the only friends and family left.

So, to all my FTD friends out there, a huge thank you for being there for me anytime I need emotional support. Thank you also to those who put up with me when I am being obnoxious or saying things in a way I think make sense but are in reality not saying what I am thinking.

 Above all, thank you God, for giving me a daughter who understands it all, still sees me as just her mom, laughs most of it off and still loves me when she can't.

Once More: One Thing At A Time

I think we all have them and sometimes I wonder if they are contagious. They certainly snowball, rolling fast enough that there is no way to catch up to them. Many times, you chase them long and hard enough that you are exhausted for days afterward.

What am I talking about? Those days.... the days when everything goes wrong and the problems just keep getting worse or more difficult to fix or both. I can give you an example and how the day tried to destroy me.

Monday morning on Martin Luther King day, I never had a chance to reflect on this saint of a man. I woke up that morning at 8 a.m. which is actually, yes I admit it, early for me. My helper/care partner was not even at the house yet. Upon awakening, I did my usual morning activity of going to the bathroom (of course) and brushing my teeth. Unfortunately, the toilet and sink faucet both sputtered a few seconds and then... nothing. I grabbed a couple bottles of water and finished up.

Next step was calling a neighbor to see if the problem was isolated to me. No one was home, no one!  While continuously telling myself to calm down, that I could handle it, I started calling the water authority. No answer. The water emergency number. No answer. The fire department non emergency number. No answer. The police non-emergency number. At least they allowed me to leave a message but they never did call me back.

Wait, let me set the proper tone here. We had an ice storm the day before and there was an inch of solid ice covering everything. The night before, when I was preheating the oven, I heard horrible popping and sizzling noises. I ran over and shut the stove completely off and then grabbed the fire extinguisher which, thankfully, I did not need. Chalk one up for me. Of course I had to wait until the next day to call.  

Finally, I calmed down enough to venture downstairs to see if something was leaking. As soon as I hit the bottom step, I could hear a river roaring through the garage. One of the water softener canisters had exploded. Fortunately the floor drain was keeping up with the river. (But can you imagine next month's water bill?)

I was so proud of myself, I remember what lever to push down to shut the water off just before the softener. Long story short (I guess it's too late for that.)  Someone came out from the softener company and bypassed the softener so we could have water. With the ice storm they had no repair people available until late the next day. Yep, I need to buy a new water softener. Mind you, I plan on selling and moving within the next few months. I could not leave it on bypass if I did want to sell. Plus our water is horrid without one. It will be installed this week.

Our wonderful appliance repairman called and, after standing on my head, I was able to give him the model number so he could order the part and he scheduled to come install it two days later.

The day after all this, I managed to fix my missing internet connection all by myself. Don't ask what I did, I just kept trying things one at a time, but undoing what I did when it didn't work. That was a successful one thing at a time. I was kind of proud of myself until I realized it was just trial and error.

As I write this, a full week after the ice storm, the drive is still thick with ice but I am relying on the sun to melt it, I spread just five pounds of salt on the edge of the drive so we could at least have a path to the mailbox. My father is probably still cringing in his grave. You NEVER put salt on the drive!  Yes, Dad, I know.

My stove is working again. Dang... I have to cook. Actually . I am very thankful I remembered my One Pot so after the first night, I could cook. Pretty good thinking, if I have to say. All I have to do for the water softener is to write a painfully large check when the installers show up. I wish I could skip that "one thing".

If you have been reading my blogs for a while now, I am sure you are familiar with my mantra of "One thing at a time!"  When I started to feel overwhelmed, I kept saying that over and over. It worked. I could not make repairs myself like I would have pre-FTD, but I got it done. I must also add that the husband of one of our FTD'ers (they live 4 hours away) offered to drive up and help out. My FTD friends are probably the best, at least truest, friends I have ever had in my life.

Now that you are bored or thinking, "There she goes again, making something out to be much worse than it was", I will admit that pre-FTD, I would have handled it all without the blink of an eye. I would not have become frantic at all. It would have been just another day, except maybe an excuse to take a day off from work!

That is the thing about FTD which many caregivers cannot seem to understand. We are only capable of doing one thing at a time. For instance, trying to cook the next night... I had to remember I even had a One Pot and then where the heck it was. Then I had to realize I should rummage through the freezer for things I could put in the pot.  Then I had to go to the pantry to find something to make it saucy. Working the pot was trial and error. I somehow had it on pressure cook not intending to. When I tried to correct that, I had it turned off. I had to figure out how long to cook it. The instruction book did not specify how long to cook frozen meatballs, a packet of dry onion soup mix and a quart of beef broth and a few noodles thrown in. Eh, I did it though and didn't give up. We had a decent dinner as a bonus. All in all, it was probably at least 10 separate things I had to focus on to get that simple meal ready for the table.

Those without FTD, no matter how often we say that it doesn't work to give broad instructions. They still insist on saying things like, "wash your hands and then put the milk on the table." Each of those involves several activities. Going to the sink, turning on the water, finding the soap if we even remember we need soap and then drying the hands. By then we have probably forgotten what we were going to do next and will go sit down in our comfort chair. 

I will go as far as saying that I see this as almost a form of abuse. If the care partner knows we can only do one thing at a time and it needs to be in small of steps, why do they do it? What happens is the one with FTD becomes very frustrated because they know there is something they are supposed to do but don't want to ask because they are afraid they will be yelled at. The care partner is probably tired and when they see the milk is still in the refrigerator, they may even yell, "Where's the milk I asked you to put on the table?" and worse, "Can't you do anything right?"

The answer to that last question is "No, I can't." Honestly, we can't and we know we can't. It is not that we don't want to or that we are lazy or don't care. We just can't. Another part of this is that the FTDer probably already feels worthless and does not need that reinforced.

It takes at least two to make things work. Both parties must remember "one thing at a time." That goes for the care partners when they are faced with overwhelming tasks. When I was caring for my husband (who died in Nov. of Alz.), I kept a list of things I needed to. I would look at that list several (probably more) times a day to determine what was the most important to do. Then, if the important ones were done, I would only work on the others as I had the energy.  Like everyone with FTD, I only have a limited amount of energy. If I go beyond that limit, I am unable to do much at all for a couple days at the minimum. 

I greatly admire the FTD spouses out there who have to juggle, caring for their loved one, working at a job, household chores and raising children. I don't know how they do it.  I do have help in my home a few days and nights. I first hired her so she could be here when I needed to those needed things like grocery shopping. She started staying nights to help with the nighttime situations toward the end of my husband's life so I could sleep. Her main responsibilities are to calm me down when I need to, to focus me back on what I was doing when I get distracted and keep track of my schedule. She does do some light housework as well. Without her, I would most likely be in assisted living. I guess she is my equivalent of an FTD spouse. Thankfully, she has enough patience and stubbornness when each is needed.

I know I have written on this subject a few times, at least, previously. It is so important, though, I think it bears repeating for those who have not been reading my blogs for long. It also is something we often forget. I know I did when I was caring for my husband. When you are exhausted beyond belief, it is difficult to immediately think to give them only a small thing at a time to focus on.

Without "One Thing At A Time", it would have gotten very ugly here on Monday. I was still incredibly exhausted but I did it. I was also proud that I did.

We Are Not Children

I don't often have difficulty coming up with subjects to focus my blog on each week. Ideas pop up all the time in my life and in others relaying frustrations or questions and observations. Today, in one of the online support groups, a person with FTD asked about caregivers and others treating those of us with FTD as though we are children.

This has been one of my pet peeves since being diagnosed. I often get frustrated enough to say, "I do have dementia, I do not have stupid!" Most of the time the other person does not grasp what I am saying but I'm pretty darned sure they get the message from the tone of my voice.

When I replied to the gentleman's question this morning about family members, caregivers and others treating someone with FTD as though they were a child, it hit home.

I answered his question that he was certainly not alone in this frustration as did many others with FTD. I also told about how I sometimes judge people by whether they treat me like a child or the intelligent person I still am.  If I am meeting with someone I have not met before' yet considering doing business with them, I use this as a litmus test. I tell them that I have FTD, a rare disease that causes dementia. I watch their face, especially their eyes, to see what changes come across them.  The reactions vary.

Many times, just by watching their face while I tell them, I can immediately tell whether this bothers them or not.  The next part of my test is whether they start speaking to me differently than before I mentioned the "D" word. Unfortunately, quite often, their reaction changes their entire demeanor. This is when they start speaking me like you would a child.

How do they act differently? The start speaking more slowly and, for some reason, louder. I have not heard of very many cases of dementia  causing deafness, yet they do. They start using smaller words or defining words to me as though I could not possibly understand what they are saying.  Or, if there is someone with me, they will start addressing them instead. It could be comical if it didn't anger me so much. These are people I do not do business with. I have walked out on a financial advisor, a social worker and sales people.

One of the most interesting things, at least to me, about those with FTD is that a majority of them are above average intelligence. Many have held high-power jobs and highly responsible positions. We do not all of a sudden lose that intelligence with FTD. We may struggle for words or ask someone to repeat what they are saying. I swear sometimes if I just blink, I miss the entire sentence someone is saying. I find this is because I can not instantly jump back into what is being said after being distracted, not that I am stupid. It is simply having a shorter attention span than I used to have. 

Are those with FTD like children?  I say "Hell, no!"  We may exhibit some childish behaviors but that does not automatically reduce us to the level of a child. What am I calling childish behaviors? Having no filter between brain and mouth. We think it, we say it. Also, we often display dis-inhibition. Just as a child may walk into a room in their underwear, someone with FTD may not stop to realize they are not dressed appropriately for company.

Sometimes, it will seem as though we experience meltdowns and appear to be throwing temper tantrums. Maybe some do, but the majority of us do this when we are totally frustrated. It can be from not being able to do something we used to, being criticized or made to feel inferior/worthless or not being able to express what we want to say. 

When the person has Aphasia, many seem to dismiss their value. It is as though they think if you can't talk, think of words or use incorrect words, that you can't think either. 

I clearly remembering a time when a caregiver for someone else said, while dressing the one with dementia, "Oh, isn't she just so cute? It's just like dressing a doll." Excuse me? She is not a doll. She has a brain, has preferences and feelings.

One thing I beg of caregivers and medical providers. Please remember that we can still hear, understand and think. When we are talked down to, it is demeaning and defeating. In my case, you would be taking cover because I would start lecturing quite loudly. When my daughter was quite young and she was waiting and being ignored, she would say "I'm still here!" That is the way I feel when someone is speaking to my caregiver or family member instead of talking directly to me. Before my husband succumbed to Alzheimer's Disease, when home care workers would start talking to me, usually over his bed, I would say that he could probably answer that better than I could.

Give us that chance to speak or the time we need to gather our thoughts. Then, if we still cannot express ourselves, that is when someone else may jump in with prompts or help with words. I acknowledge that we sometimes act childlike but that does not require anyone to respond as though we are children.

Again, I will use an example of my daughter. I never spoke "baby talk" to her, at least not after she was a month or so old. She may have been doing childish things, which was really her job, but I did not respond childishly. I spoke to her all the time. If I was making a bed, I would talk about making a bed. That could explain why her first words were "kitty cat" and "Daddy go to work?" Now, during the teenage years, I will admit to responding to her in kind which led to a lot of screaming matches until I realized that was just making things worse. Once I stopped screaming, so did she. 

Like with my daughter, perhaps if you respond to the FTD'er calmly and softly, they just might calm down. If nothing else, it will ease the strain on your vocal cords. I realize it may not always work, you may have to try redirection or distraction, but my days and nights were much nicer when I was speaking calmly to my husband, not adding to his frustration or causing a meltdown. I can also honestly say that I never treated him like a child, not once, even when he was doing childlike things. 

I Am Back

When I logged on this afternoon to attempt to write, I was shocked that it had already been 3 months since I have posted. In addition to that, the 3 months before that were pretty sporadic. Somehow, it made me feel extremely tired.

The last 6 months, especially the last 3 have been a challenge. I hope I met that challenge well. I certainly hit it head on. I do believe the last 6 months have aged me about 3 years. I see it every time I look in the mirror.

If you are new to my blogs, I should explain that after my being diagnosed in 2011 with FTD, my husband was diagnosed about 3 years ago with dementia, most likely Alzheimer's. I had promised him that, as long as it was at all possible, I would keep him at home and care for him. Proud to say, I kept that promise. Mike died on November 18, 2019, right here at home. I did allow I friend to help out on a part time basis to help me and relied on my sister to help as well. Since I needed help as well due to FTD, it was the only way I could do it.

I am not going to pretend it was all smooth sailing. It wasn't. 

If you do much reading on the blogs and support groups devoted to FTD, you will think like I did. Hospice and palliative care is out there and you just have to ask for it. It sounded too good to be true and it was. When I was finally feeling that I could not do it without more help, I took him to our doctor.  She kindly made a request for a hospice evaluation. They responded on a timely basis, but he was not accepted into the program.

Medicare controls the hospice regulations and they have become stricter as of late. Their medical director must be able to, without doubt, believe the patient will not live beyond six months. Unfortunately, just as FTD patients can, Alzheimer's patients can also put on the charm when strangers are around. He not only cooperated, he joked and flirted with the hospice personnel. There are a couple private hospice companies in the area and I was told they might accept him, but I had not heard the best things about them. Also, would I really want him to have care from someone who was willing to skirt the rules?

I asked about palliative care. I had been reading so much about that on the FTD support groups. They looked at me as though I had horns. They "explained" to me that palliative care is what the hospice provides, keeping the patient comfortable through to the end. When I explained what I had been told and what I had been reading, it was two separate things and asked where I could get palliative care. They did not know, but did contact our doctor and suggested she request home nursing to come out. They did and provided a physical therapist, an occupational therapist and a home health aide 2-3 times a week.  This did not accomplish much except entertaining him but he did allow the aide to shower him, something he never allowed me to do, only sponge bathes.

After 3 weeks, home nursing called our doctor and suggested a second evaluation by hospice. We were fortunate that the same nurse practitioner came for that visit. She was taken aback by how much he had deteriorated in that time. For instance, his calf measurement was 3 centimeters smaller. They immediately accepted him this time.

They came armed with equipment, an air mattress (I had already obtained a donated hospital bed) to prevent bed sores and for more comfort as well as every supply I could imagine, even his Boost nutritional supplements and adult briefs. BUT, they only could come three times a week and would only be there for less than 2 hours. I also could not leave during that time. 

By this time, I was beyond exhausted. I am not sure what you would label that as, but whatever it is, that was me! My friend who had been helping us out for the past year started spending more time and would alternate night duties because he did not sleep more than an hour at a time. I don't know if I could have kept him at home if I did not have her help.

After just 3 weeks, he was put on daily visits. That was a Godsend, mainly for the health aide coming every day. She would shower or give him a good sponge bath, help me change his bed and help me coax him to eat or drink. After just one week of this, I started sleeping on the floor next to his bed. The hospital bed I had been given came with a mattress and since his bed now had that wonderful air mattress, I put the original one on the floor and that is where I slept, always holding his hand or arm.

He slept a lot better because when he would get restless, I would assure him I was right there. My daughter came home and spent a few days with him during this time but finally returned home because she firmly believed he was hanging on so she would not see him die. The second night she was gone, I became very uncomfortable lying on the floor, got up and went into my room to lie down for a short bit. This is when he chose to leave us.

I so regret leaving the room. After I was out of his room for about 15 minutes, my helper/friend went in to check on him and realized he was dying. She waited until she was sure he was gone, then came and woke me. Even though I know he chose to not give up while I was with me, that haunts me. I cannot understand why she waited, but I have forgiven her. 

I immediately called hospice and they were there within 30 minutes to declare him dead. (It was about  a.m.) That was the last time I saw or heard from anyone from hospice. Something that brought me great peace was that, while we were waiting for the nurse to arrive, I gave him one last sponge bath. His final two days, he was feverish and perspiring heavy. Being able to do that, just the two of us in that room, is now a fond memory.

I am guessing that in more populated areas than this one have more options for palliative/hospice care, but all those things the "experts" claimed could be provided for us just were not available.  Don't get me wrong, I would recommend them to anyone and everyone, they were wonderful. I was just disappointed that everything I had heard about available care just did not exist.

So, it has been two months since his death occurred. Christmas holidays were difficult yet, in other ways, very special for my daughter and me. 

How did I do it? How did I manage to care for him at home? It was not always easy. In fact, some days were downright difficult. How I got through it was by relying on my common sense. I have no medical training but I have a lot of common sense. If he was fussing or trying to get out of bed, I would assess what was going on and come up with ways to keep him comfortable. I wrapped sheets of dense foam around the bed rails so he would stop getting his feet stuck and injuring himself. If he didn't want to eat, I did not force him. I would encourage him and make things like a Boost milkshake that he would most often drink. I constantly encouraged liquids. I sang to him. Now with that, I pity him because since FTD, I cannot carry a tune at all. He was not a practicing Christian, but I would pray with him. That seemed to soothe him. I talked to him nearly all the time. I read to him... chapters of the book he wrote and had published about his brother and growing up in simpler times.

Above all, I kept assuring myself that it was okay if I was not perfect. If I judged incorrectly and did something wrong, I kept telling myself that the worst day at home with me making a mistake or two was better than any day in the nursing home. There was no way this man was going to die alone.

As I said it aged me. When I look in the mirror I am shocked some days. Where did those wrinkles come from anyway? I am sure it shortened the time I have left because I sure didn't take care of myself as well as I should have. But, hey, I have FTD and it's going to kill me. What better way to spend a couple years of it. After 47 years of marriage, I was willing to push myself as far as I could to care for him.

That is our story. That is why I have not had the energy or time to blog for 3 months. I am back though and my New Year's resolution was to get back into writing my blog, helping others with FTD and shouting out to the world about this horrid disease. Thank you for your patience and for all the encouraging email. I love all of you.