Just Plugging Along... as Best We Can

A few days ago, a friend responded to one of my Facebook posts with "...you are a saint for being both a caregiver and an FTD patient."  My response was "Not even close, all I can do is keep plugging along." I really appreciated his comment, though, because he was recognizing how difficult some days are for me, but I truly don't believe I deserve praise for what I do.

Plugging along... Isn't that we all do, including those of us with FTD or any other dementia and those caring for someone who has it?

There are days, many days in fact, that I am just utterly and completely exhausted. Some of those days, the exhaustion is more related to my FTD worsening and others are due to trying to care for my husband and his Alzheimer's Disease. Then there are the days when he and I are both having bad dementia days. Those days, I tend to fall apart and end up in bed at night, praying that he will sleep at least a few hours so I can get some sleep. 

The nights when he is more confused that usual, he tends to wake me up more than once an hour. Most times he wants to know what day it is, whether he got his pills that day, wants to complain because "they" haven't fed me in days, if I am the one who takes care of him, who else is living here and the list goes on and on. All I can do is answer his questions, reassure him, tell him I love him and that he needs more sleep. I tuck him back into bed and pray for him to be able to sleep.

The days that are the worst for me and my FTD can be many. The day after he has a restless night, my FTD symptoms are exaggerated due to my being exhausted. Other days, like everyone else with FTD, new symptoms pop up for no rhyme nor reason. 

One of the first symptoms I noticed about my FTD was falling and losing my balance. That continued for several years but then lessened in severity. I would still lose my balance, but using a cane was preventing me from falling. I was encouraged by this. I knew that my FTD was not "getting better" but was hopeful that these symptoms had run their course, making way for new ones. I know, I know, wishful thinking. This past month, the falling and loss of balance has come back in full force. When you add to that, my continued weakness in my arms and legs, it has become much more stressful and difficult in caring for my husband. 

When he needs assistance in standing or moving in his bed,  I just do not have enough strength to help him. Of course, being aware of this, I have made compensations. I purchased a lift chair for him and have taught him ways to get out of the other furniture. He does really well on bar stools. They are the right height for him to sit right onto them. It is also easier for him to get back up because he does not need to lift himself, just step down. I have him using the kitchen bar stools with padded seats and backs, along with good supportive wooden arms. Since he still refuses to use his cane, I have taught him how to go from place to place by holding on to solid objects. 

I have found that is the best thing for us. We improvise... we keepplugging along. Well, I guess I improvise and he tries to understand what I am suggesting we try. We manage, though. 

Amazingly enough, when I am having a really bad day due to my FTD, he seems to sense it. He can't really do anything to help me or to help with things around the house, but he actually shows compassion and asks frequently if I am doing okay and do I need anything. When I say "no" I also make sure I thank him for asking and tell him how much I appreciate it. 

Sometimes, on difficult days such as this, when it is bedtime, I will tell him I really, really need to get a good night's sleep and ask him to be more involved in getting himself ready for bed as well. It actually works some nights. I will wake up around 9 a.m. and realize I have slept through the night because he has as well. When this happens, I thank him profusely and tell him how much good it did for me to sleep through the night. Does he understand what he did for me? I kind of doubt it, but praise of any kind (honest praise, no false or condescending praise) is a good thing for anyone. When he doesn't do things correctly or is in a stubborn mood, I try my best to not criticize him. I make sure to thank him for trying. Always trying to keep it positive for both of us.

Sleep is an essential part of living with FTD.  When I am tired, my symptoms worsen. Sometimes I bounce back after succeeding in getting a full night's sleep. Other times I don't. Swallowing is a good example. When I am tired, I have more trouble swallowing. Unfortunately, that does not improve after I get some rest. 

Speaking of which, I just have to write about something that happens a lot. My husband has difficulty understanding words when others are speaking, he hears the noise the words make, but interpreting just what words they are is a problem, just as it can be for many of us with FTD. Because of my swallowing issues, I have to constantly clear my throat, I would guess dozens of times a day, my husband asks, "What did you say?"  He is not able to comprehend that the noise I am making is not words. Fortunately, while this should make me quite sad, I also find humor in it. Because I do, it is one thing that does not tax my patience level. I have not yet snapped at him or asked him to stop asking that. Thank God for finding humor in things.

Plugging along... that's what we do. I have given you examples of how I plug along while being a caregiver. How is it possible, though, to separate and identify the daily issues of his dementia from my own? It seems there is a lot of information out there with suggestions of ways to cope with being a caregiver. Not so much for those of us with FTD. We are portrayed as the "bad guy" in the stories. Oh, the dastardly things we do to make the life of the caregiver so much worse. Many times, it is implied that these things are done deliberately by us. 

To me, and I am told by many others with FTD, these stories and complaints leave a feeling of despair and a strong sense of no longer being loved. The worst for me, is the feeling that many caregivers and those who advise caregivers no longer see us as valuable. We read and hear often enough of all the things we can no longer do and all the inconveniences we cause the caregivers. So often, that we can feel totally worthless and incapable, or undeserving, of being loved.

I am not saying that these caregivers and advisers all truly believe these things or think they are suggesting them at all. I have to believe that they don't realize how we are interpreting their words as something negative. One thing that comes up often is that we do things deliberately. I can say with confidence that most of us with FTD are not capable of intentionally doing many of the things we do that frustrate the caregivers. Most, if not all, of us are incapable of sitting down and thinking "What can I do to irritate my caregiver today?" Even if we were capable of thinking that way, how could we understand and figure out how to enact it?  Along the same lines, something that can can be interpreted that it is deliberate is  when we are told more than one thing at a time. We quickly develop overload and can not understand any of what has been said. 

For instance, if someone were to tell me to gather up the trash, take it out to the can and wheel the can out to the street. I am still thinking "Gather up the trash? Okay, how do I do that. I don't remember, do I bring the wastebaskets to the kitchen and empty them into the bag. Hmm... or do I take the bags to the wastebaskets? I don't remember how I did it the last time. I think I am supposed to bring the wastebaskets to the bag so if it is leaking, I don't make a mess. Oh, wait, is she still talking?" What are the odds that the trash can is going to be taken out to the street without further instructions. It is just not the way our brains work anymore. "One thing at a time" is my mantra.

The role of being a caregiver or being an adviser to caregivers is difficult. There is no doubt about that. Yet, I find myself wanting those writing articles, making speeches and such to recognize that our brains just don't any longer work the way they did pre-FTD and that the "role" of being someone with FTD is difficult, exhausting and depressing just as the role of caregiver is. We also deserve recognition and even deserve some praise for doing as well as we can. I am not asking for an "International FTD Patient Day." I merely want us to feel valuable and loved.

Those of us with FTD just keep plugging along, as best we can, along with the caregivers who are doing the same.

My New Social Life

One day last week, someone asked me why I choose to rely on the Senior Van service to go to medical appointments and even grocery shopping. I threw out all the stock answers: it costs less than driving a car (even if I still had that privilege), they show up in any weather, they give door to door service, they carry my groceries into the house, etc.  This answer didn't seem to satisfy the person asking. I actually stopped and thought about it and said "because it is my social life."

Now, before you start feeling sorry for me and thinking how pathetic it sounds, don't. I have yet to have a driver who was not friendly, helpful and just downright nice. I often have the van to myself, but when there are other riders, we are all in the same boat. Once in a while, a passenger will be grumpy or rude. When that happens, I take it as a challenge. I must say, even if it sounds like bragging, by time I get off or the other passenger does, I have them laughing or at least smiling.

A good example of this happened this week. When I got onto the van at a doctor's office, another woman had already been picked up. She started griping when she thought the driver was going the wrong way. He told her we had one more to pick up. She started complaining that her home was just a couple blocks away so we should go there first. Turned out that her home was much further away than a couple blocks and the woman we were picking up lives in the same apartment complex. I started chatting with her and discovered that we had both lived in the Philadelphia area and we started talking about places and things we had in common there. By time she got off the van, she was laughing and said she hoped we got to ride together again.

My mother always said that if I didn't have anyone to talk to, I would talk to a brick wall. While that might be part of it, it's not the total picture. 

I am trapped in my home most of the time. Between my FTD causing me to not want to venture out and needing to care for my husband with the limitations his Alzheimer's Disease brings, home is where I usually belong. This is not a complaint, just a simple fact. While I do talk to people on the phone most every day, there is very little conversation in our home because my husband is usually sleeping or just unable to converse. That is a big part of why I like riding the van a couple times a week. I get to meet new people and visit the "real" world. 

Unfortunately, dementia isolates us. Not only because we frequently don't care to venture out because of the risk of sensory overload, but because others isolate us as well. I don't remember how many times I have mentioned in my blogs about how family and friends practically run away screaming once they learn of a diagnosis of dementia. I don't believe they are thoughtless or rude, they just don't know how to deal with it. I refer them to 
as ostriches because they must think if they stay away (or bury their head in the sand) the dementia doesn't exist and those of us with the disease are still the way we used to be.

If I hear one more person say, "But, I just want to remember them the way they were. It just makes me sad to see them this way."  I will probably give them a huge piece of my mind. I just want to say "I wish those of us with dementia could do that too, remember you the way you used to be because you used to be kind and loving." Most of us don't even welcome long visits, just a short visit to let us know we still exist and you still care. Maybe bring us some cookies, we can never get enough of those!

Just about all the people I meet on the Senior Van are not judgmental. Most all of us have a limitation or two and we are quick to help each other out. The drivers are mostly people who have retired early and are just out to keep busy because I know they don't get paid very well. The day last week when I visited that doctor's office? I had been dropped off at radiology. When it turned out to be the same driver who picked me up, he asked if everything went okay. He said, "You're smiling so you must have gotten good news?" I had been there for further testing because of questionable results during a prior test. The radiologist met with me and assured me it was a false positive and that all was well and I was thrilled to be able to share my good news.

When I say that riding the Senior Van is my social life, it is indeed a good thing. It is just the right amount of time to visit with someone before I get sensory overload. I love making the others smile because it makes me smile as well.  So, if you live here in Blair County in beautiful Central Pennsylvania, maybe I'll see you on the van!











k

It's All About the Little Things

This past week seemed to be a lesson in accepting and celebrating the little things. It was also about not letting the petty little things drag me down.

On Monday, I needed to visit my glaucoma specialist whose office is 1 1/2 hours from home. A relatively new friend (she did not know me pre-FTD so is more accepting of me the way I am) switched work schedules around so that she could drive me there. Not only did we get a good report and the possibility of a laser treatment to improve my clarity of vision, but we both immediately thought of the same place to go for lunch and enjoyed it greatly.

On Tuesday, I needed to return to the Ophthalmology office to see my retina specialist. Yes, this was bad timing to schedule them back to back, but that's just how it worked out this time. That day brought us a pretty bad snowstorm. My sister was supposed to drive me there for this one, but she is recovering from a broken shoulder and gets anxiety when driving in bad weather. I knew I did not dare cancel this appointment because I knew I needed a shot into my eye to stop a retinal bleed, not something to be delayed by weather.  My awesome brother in law gave up his day and drove us safely through the storm.

On Thursday, here we go with another transportation story. For local trips, I try to utilize our Senior Van Service which is awesome. Door to door service and only $1 or $1.50 per trip depending on the distance. Plus the drivers are extremely helpful. They even carry my groceries or other packages into my house when they bring me home. On this day, there were two other passengers in the van and a really friendly driver. The four of us were carrying on and laughing so much, I was disappointed when we got to my destination. Kind of sad that the van service is also my social life, but these trips actually do brighten my day and my attitude. This service makes it so much easier to accept not being able to drive.

On Friday, I went to see a pain specialist to get nerve blocks into my occipital nerves. It was another day of snow and another day with an awesome van driver. It was just the two of us as many canceled their trips. We exchanged stories and kept each other entertained which helped me to not think about the painful injections I was facing. In addition to dreading the shots, I was dreading the possibility of the doctor telling me there was nothing wrong with me and that it was all in my mind. Getting that answer so many times while trying to get the diagnosis of FTD, has really made me fear hearing it again every time I see a new doctor. My sister even braved the snow to join me at the appointment so I had help with explaining and understanding things. I also had the opportunity to explain FTD to this doctor and he accepted a copy of the NIH booklet so he could read more about it. Advocating and educating about FTD always brightens my day.

To top it all off, my husband did not waken me once through Friday night and slept late in the morning. Not only did he allow me a full night's sleep, but I was able to accomplish some things that required my fullest focus before I had to help him get his day started.

Notice that I skipped Wednesday. That day was fairly uneventful, That is, until I helped my husband get ready for bed as usual. I set his nighttime pills on the counter and reminded him to take them as he was going in to brush his teeth. I did not get even one continuous hour of sleep that night. He either called for me or wandered into my room being extremely confused. I even tried getting into bed with him, hoping to calm him down. He kicked me out. It wasn't until 8 a.m. that I discovered those four nighttime pills still sitting on the counter. I immediately gave him one of the Seroquel tablets and within thirty minutes, he was calm and much less confused. 

Of course, I started blaming myself and asking myself if I could possibly be any more stupid. Then I realized, I was exhausted and not thinking clearly myself. Added to that, I learned a lesson to always check and make sure he has taken those medications before tucking him into bed. So it could be a good thing in the long run.

There were also those petty little issues I mentioned earlier. They could have really gotten me into a foul frame of mind throughout the week. I had two instances where someone was really snarky, demanding and critical... make that three. Each time, I was able to back off for a minute and dealt with what happened in a calm way. I realized that these were things that I did not cause and I was not obligate to "fix" anything. In each case, the other person calmed down without me coddling, wheedling or arguing as I usually would. I simply walked away from the situations or shut off the conversations.

Fortunately, this coming week should not require any out-of-town trips and only one scheduled appointment. Plus the friend who drove me to my Monday appointment will be dropping by to visit one day. My husband really enjoys her company and interacts with her more than he does with anyone else. She is my go-to person to stay with him when I know I am going to be gone on my husband's bad days or if I need to be gone longer than a couple hours in the afternoon. He is much more aware and able to care for himself between about noon to 4 p.m. and I still feel comfortable leaving him for only short periods during those hours.

I end this week pretty darned proud of myself for successfully identifying the good little things that happened, as well as successfully handling the bad ones.  With my FTD, I have had to learn to break tasks down into smaller tasks. Now I am learning to take pride in dealing with the unexpected little things that complicate my life, trying to keep them small and not growing into ones that are impossible to deal with.

On one down note, I really, really wish I could find a way to make people understand the limitations that FTD puts on us. This includes, not just the physical limitations, but also the emotional ones and the difficulty we have to diffuse situations. If anyone has any ideas, I would sure like to hear them. I firmly believe this is the root cause of all the pesky bad little things that try to infiltrate my life. It is even more frustrating that the ones who don't "get it" are often the same ones who proudly tell others that they do.

That issue, of course, is a huge one that I probably will never be able to solve no matter what I try. I will just have to keep focusing on the good little things and continue to try to ignore or walk away from the bad ones. 

I Am the "Perfect Storm"

When I write a blog, I usually wait to post it until the next day so that I can do one more edit. I did that yesterday and this morning, I edited it right out of there. I was writing it from the prospective of a caregiver. This morning I realized that mostly all of us already know everything I had written. The caregiver role sucks, nearly as much as having the disease sucks. Especially when you are doing both.

Do you remember the book and movie The Perfect Storm?  I don't remember the details of how three weather events collided and caused this horrible storm which was misnamed as the "perfect" storm. I only remember how horrific it became.

I realized that I am a perfect storm. The combination of my bvFTD, my role as caregiver for my husband with Alzheimer's Disease and, finally, my constant pain from bilateral Occipital Neuralgia all created it. I say it is a perfect storm because it has turned me into a horrible terror.  Actually, I would say a royal b*tch, but that just seems rude, although a perfect description.

My patience level is about non-existent and what little I have is devoted to caring for my husband. In actuality, for some reason, I have been blessed lately with a lot more patience and understanding with my husband. He has been so confused lately about whether this is our house and if we are allowed to live here and if he is married to me. He keeps holding his wedding ring up to mine and asking me if that means we are married and that we can continue to be married. When I realize he is confused about simple things like this, it is no wonder he is confused by the remote control, folding his towel and so much more. It is a mixed blessing when, after hearing that we can remain married, he asks how he gets rid of the other three women he is married so he can keep me as his wife as he likes me best. It warms my heart all the while it saddens me that he is so confused.

I do seem to need all my stores of patience and energy for him and there is nothing left for anything or anyone else. I have had no tolerance for other people or anything that happens out of the ordinary day. It is a wonder that anyone wants to deal with me at all. At least I recognize what I am doing and find myself apologizing quite often, but it is a difficult thing for others to accept. 

Very few people, except for those of us with the disease, can understand how difficult our lives now are. It is so difficult to accomplish much of anything because it takes our total focus on every little thing as we go about every day life. Often, we cannot even see to the end of a single small task, we have to take it one tiny part of the task at a time or we would not be able to do anything at all.

Caregiving is certainly extremely difficult as well. You have to keep the person with FTD in mind with everything you do. Going about what used to be simple chores and errands are compounded in difficulty when you have to worry about someone else's safety and comfort. It can be totally exhausting to get through some days.

Chronic pain is another thing that many people deal with everyday. It takes a huge toll on your body and your brain. It makes us have to overcompensate constantly to try to block out the pain and continue to allow us to function. Many, many times, it is just impossible to do this and trying to push through is simply self-defeating. It is exhausting, yes, but at least for me, it is also infuriating at this time when I need more energy and concentration to deal with my disease as well as my husband's. All too often, I get to the point when the excruciating pain seems to block out all other brain function. Neither the brain nor the body cooperate when it reaches that point because both are exhausted. Fortunately, it doesn't reach this extreme for me until 5 or 6:00 in the evening so I do continue to be able to push through the day until then.

Just as it is frustrating that seemingly no one else can understand the toll that FTD takes on us and limits everything we can do, the chronic pain does the same thing. With the exhaustion and brain fog of chronic pain it becomes difficult to exist through the day. The most unfortunate part is that no one else can see it. 

When I snap out rude words or roll my eyes at something I perceive to be wrong or a waste of time, I come across as being a rude, obnoxious b*tch. After the fact, I often recognize that I said inappropriate things and often apologize to those I feel I may have offended. Only a few are able to understand and forgive. Those would be the people who know that this is not my normal self and those who experience similar reactions due to the things they are coping with.

FTD, caregiver exhaustion and chronic pain don't always show on people's faces. They are also things that I, and I believe others experiencing it, do not talk about because they know two things: most of us are busy dealing with our own crap and/or they wouldn't know what to do anyway. Add in the ones who think you are faking, are trying to get attention or, God forbid, you are "just depressed" and you give up trying.

I don't think it is the responsibility of others to try to figure out what I am dealing with in order to understand my behavior. Anyone dealing with any aspect of FTD has their own set of circumstances to cope with to be worrying about mine. I do wish, though, that people would notice the dark circles under my eyes, recognize the fake smiles I have on my face and the way my head will jerk forward from shooting pain that feels like an electrified nail is being driven into my head. 

If I have offended any one of you, I do sincerely apologize and beg you to understand that it is not the "real" me you are witnessing. Hopefully the doctors will soon find some way to relieve the Occipital Neuralgia. Just eliminating that one part of my perfect storm will hopefully bring me back to a better and kinder state of mind.

As I have often said, I do not know which role is worse, that of someone with dementia, or someone who is caring for someone with dementia. They each bring many different frustrations but in experiencing both roles, I really can not say which is worse. They both just plain suck, especially when you are doing both while dealing with this horrible chronic pain.

The neurologist told me that only 3 in 100,000 people experience the type of occipital neuralgia I am have. Add in the slim odds of developing FTD and it is no wonder I cannot win the lottery. All my chances of beating the odds were used up with my health issues. Then again, they tell me I need to remember to buy a ticket before I can win.  

Twisted Sensations in the FTD Brain

How in the world can a gentle touch feel like pain? This is a question that has come to my mind many time. At times, if someone touches me, even a gentle touch, I somehow feel pain instead of the gentle touch that the person is intending to transmit to me.

I just spent two days researching this subject on the internet. I am amazed at how complicated our sense of touch is. I will try to simplify it from all that I read. Touch stimulates sensors in the deepest layer of our skin, the dermis. This layer of skin is loaded with a huge number of nerve endings. These nerve endings transport the feelings from touch, whether pleasant or painful touch, are converted into electrical signals. The signals then travel through the spinal column to the brain. 

One type of pain is called Neuropathic Pain which is caused by abnormalities in this system. The problem can be in the nerves, the spinal cord or the brain. Neuropathic Pain can cause people to feel pain from a stimulus that is not normally painful, such as a light touch or cold temperature. Pain in different areas of the body are sensed in different parts of the brain.

I was not able to find any information about this in any specific way to link it to FTD. However, if the touch/pain signal goes through our brain and that part of our brain is damaged by FTD, it leads to believing how it can be misinterpreted. It would also explain why some of us experience this misinterpretation of touch and others don't. FTD attacks different parts of the brain, in differing order, for each one of us, as we all know.

Another cause can be sensory overload. When we experience this, everything can become painful. I often feel like my entire body is being bitten by fire ants or being touched by stinging nettles when there is too much going on around me, changes in lighting or noise. I think all of us with FTD have experienced this and can understand why our brain will misinterpret a gentle touch as another assault on our bodies.

This also explains one of the reasons people with FTD and other dementias are reluctant to shower or bathe. The feeling of the water is not the same for many of us. The feeling of the water hitting us in the shower can overwhelm us and cause us to feel that we are being attacked. That is why some do better with a shower mounted at shoulder level or a handheld shower head. From what I have heard from others, it can cause feelings of pain no matter where it hits the body, but the head is worse. Personally, it is just getting hit in the face with water than bothers me. I have solved that by taking baths rather than showering.

Of course, the pain or fear of the water hitting the body is not the only reason many with FTD are reluctant to shower. A lot of it comes from our feelings of apathy. If you don't care about others, you may not notice or care that you smell bad or look dirty. On top of that, you don't care if it bothers anyone.

I never understood how bad this aversion to showering or bathing can be. When my husband's Alzheimer's Disease started to h progress rapidly, he developed this same aversion. I have tried all the regularly suggested steps to deal with it: a sturdy shower chair; a shower head that is mounted at shoulder level or can be removed to be handheld; a non-skid surface on the shower floor and a gentle shampoo that does not burn the eyes. I admit that I have even resorted to begging and bribing which has never worked for me. 

Now, I realize that if a simple touch on my skin can feel like pain, it certainly makes sense that the shower spray could do the same thing to him. I am still waiting for a magical answer. In the meantime, I am using waterless shampoo and antibacterial disposable wipes to stretch the time between showers. Even this is difficult for him to accept at some times. I should take a moment to tell you about the shampoo "gloves" that I found at CVS online. They are really mitts, not gloves, but they have a gel type product in them that releases as you rub the head. This is the one thing my husband responds well to. He says it is because it feels like I am massaging his head. I am not pushing you to try them, it is just one more item to try until you find something that works for you or your loved one.

I hope I have succeeded in explaining this complicated issue of senses of touch being misinterpreted in an FTD brain. Some days it seems like everything can be affected by FTD. That is one of the reasons it is such a difficult disease to deal with... whether it is the one with the disease or the caregiver. In the meantime, if you see me, please don't touch me!

Oh, So Frustrating...

I do not think it is possible for anyone who does not have FTD to understand the frustrations we deal with. It all begins when you realize, or someone else tells you, of the symptoms you are having. Most of your friends and family will say, "Oh, come on, there is nothing wrong with you. I do that too!"  Then, when you finally make that doctor's appointment, the doctor often dismisses your complaints, orders an anti-depressant or refers you to a neurologist.

I cannot begin to tell you of how many people with FTD were put through batteries of testing by neurologists, only to say the same things or blame it on depression. If not depression and they understand dementia, most will diagnose Alzheimer's Disease. The first action most of them take, at this point, is to hand you a prescription designed to treat Alzheimer's. (Aricept, Namenda, Exelon, Galantamine) That would be great if these meds improved FTD, but they usually do not and, in fact, they often worsen FTD.

By the time many of us are diagnosed, we are much further along in the FTD progression and have dealt with a lot of stress in trying to locate a neurologist who actually does know FTD.

I know I have ranted about this subjects many times, but it struck me again this week. I have been having brutal headaches in the back of my head, nearly constant.  This headache is similar to an FTD headache in the fact that it is extremely painful and nothing relieves the pain. I knew the area was in the area of the occipital lobe and I knew I was scheduled to see my retina specialist soon, I waited. I told him about the pain and he asked me to show him where it was. He responded that I had shown him the area of the occipital lobe. Gee, why didn't I think of that! That was the end of the conversation. I was so frustrated because this man is a brilliant retina specialist and has been saving my vision for nearly 30 years. Because of our history, I do not hold this against him.

My next step was to break down and call my family doctor. She reacted immediately and ordered an MRI and carotid artery scans. When these provided no answer, she referred me to a neurologist. I really do not like neurologists after being misdiagnosed by three of them here in town. I did agree to see a fairly new one who is much younger, so I thought she should have learned about FTD in med school. I had to wait over three weeks for an appointment with her, even though I begged them, explaining how much pain I was in.

Finally, at the appointment, where I told her I had FTD, she immediately said "Are you on the dementia drugs?" No, I am not, they are contra-indicated for FTD. "So, you aren't taking them?" No, not only are they contra-indicated, they often worsen FTD. "Oh."  About five minutes later, "Would you consider taking the dementia drugs?" The frustration came out and I growled out "I refuse to take a medication that might worsen my dementia." Fortunately my sister was in the exam room with me. She took hold of my arm and whispered "It's okay." So I was able to proceed.

Then the doctor asked about my double vision since I had noted that as one of my symptoms. "Have you tried prisms?" What? (With her accent, I had difficulty understand the word.) "Sometimes at the eye doctor they will put prisms in your glasses and that fixes it." No, that would not work because the problem is in the brain. It is unable to bring together the images that each eye sees. "Will you try them?" Okay, I lost it again. I asked her, in a questioning, and probably sarcastic, tone of voice, "Do they make prisms for the brain? I didn't know that." Again, my sister had to calm me down before I was asked to leave.

She did give me a diagnosis of bilateral Occipital Neuralgia. That basically means pain in the head, which is a shade better than pain in the butt which we already know I am! She referred me to the only doctor in our area who gives the needed injections into the occipital nerves as a nerve block. It was either that or adding yet another medication that may or may not work and may or may not conflict with other meds I take. That had been her answer when I asked if the would. Even though I do not look forward to getting injections that close to the brain, I chose that option. She said she would send the referral and the pain management office would call me to make an appointment.

I did not hear for 2 1/2 days, so I called the pain management center. Yes, they had the referral. No, they could not give me an appointment until I filled out the packet of forms that they had mailed to me on that day and I sent them back. I have not received these as of yet which means until I get them filled out and delivered back to them it will be yet another week. I know how busy this doctor is because we had to wait weeks to get a spinal tap done on my husband a few years ago. I also know how good he is and I feel safe putting myself in his hands.

Bottom line, by time I get the nerve blocks, I will have suffered through this horrible pain for at least two months. No medication touches the pain and it is debilitating most of the time.  This is only one event in my nearly eight years since I first noticed symptoms of dementia. Experiences like this are fairly common for those of us with FTD and is just one in a long list of frustrating experiences I have had to deal with and I am not alone.

I won't go into detail about many other frustrations we must cope with: The inability to do things that we could do before FTD, things that we used to enjoy. The times when our body fails us and we fall or stumble into things. The times our loved one or caregiver criticizes us or refuses to believe that we truly cannot do something they are expecting us to do. The number of friends and/or family members who now ignore us. Obviously, this list is but a tiny few of the frustrations we deal with constantly and that worsen as our disease progresses.

Whatever you do, please, please, please do not tell us "Oh, you look fine" or "You are too young to have dementia."  I am at the point of frustration where I just might kick the next person who says it to me! 

I Am Finally Writing Again

I apologize for being missing in action for the past few weeks. I was having enough trouble getting through the days that I could not think beyond that. Why? A new symptom, of course. More about that later.

There have been a few things I have read about this past months while being MIA. I read an article about CBD oil, Many of us are using this oil to treat various things with our FTD, primarily stress. While they acknowledged that it probably helps with stress, CBD oil can interfere with prescription medicines. The most serious reactions are those medications for the heart and blood pressure.

So, please, like any over-the-counter medications or supplements, make sure you inform your doctor you are using CBD oil. Ideally, please discuss it before you start using the oil, especially if you are on any medication for heart and/or blood pressure issues.

Also, a friend who also has FTD, found an article that was extremely interesting to me. I think it is one of the best stories and explanation about FTD that I have ever seen. So, I am sharing the link to it. Please take time to read it. I might be one you will want to share with others to help them understand just what we are dealing with.

https://l.facebook.com/l.php?u=https%3A%2F%2Ftheconversation.com%2Fexplainer-how-is-frontotemporal-dementia-different-and-what-are-the-warning-signs-95436%3Ffbclid%3DIwAR3edcGbGfz3fyGNMv3JvGiP5Ya_gyYqI9Jn90l9jQMbw2T9lwLWZDpH8xs&h=AT0eewj6fVacY6zZxEilg1G8-2OPO3LFsLTiO0R-IC1882OafUvs1ObCiWdPdcTPUSfvxC5gnQwYCI8A39pbjSSh_RRMfPslkk4rWhMlnCe6LtgzDFJg12Y

Another important bit of info: The AFTD 2019 Educational Conference will be coming up in May. It is being held in Los Angeles, California. Registration will begin on January 11, 2019 and more information can be found on the AFTD website:  www.theAFTD.org

I must share that I finally found the secret to making my holidays more survivable. My daughter was home for the entire Christmas week which helped immeasurably. We limited all visits to five people or less, including ourselves. I still, with her help, prepared our traditional Christmas morning brunch. All other meals were purchased and required very little effort to prepare. Not to give free advertising, but we went to Honey Baked Ham for ham and turkey, as well as all the sides needed to make wonderful dinners for Christmas Eve and Christmas Day. I also only baked only about twelve dozen cookies in the two weeks leading up to the holiday, giving up on the 100-200 dozen I usually would do. I will admit several people showed disappointment when they did not receive cookie trays, but having FTD, there have to be limits put on to what I try to do. To not be totally out of commission for a week or more after the holidays is the best gift of all. My solutions may not have worked for everyone else, but there are ways to cut back and enjoy the holidays.

Now, back to why you have not seen any blog entries from me for the past few weeks:

I have written many times about "FTD headaches" and how debilitating they can be. I thought there could be no headache more painful than those, until now. I have developed a new kind of headache in the back of my head. I was at an appointment with my retinal specialist and when he asked where the headaches were, I showed him an area on the back of my head. His response was "You just showed me the entire area of your Occipital Lobe."

I was desperate enough for relief that I visited my family doctor. Of course, an MRI was ordered which showed nothing, not even my FTD!  How frustrating is that? A SPECT scan in 2011 clearly showed FTD, and they still see nothing on an MRI? No wonder we are so often misdiagnosed. I cannot help but wonder if there is actually nothing that shows on the MRI or if the diagnostician does not know what to look for with FTD?

Trying to figure out what was going on, my doctor gave up and insisted that I consult with a neurologist. I do not like them, Sam I am. I would rather eat green eggs and ham! I have this fear that when I see the neurologist (one whom I have not seen before) next week, she will say "There is nothing wrong, it must just be depression."  This is what I heard from other neurologists in the same practice back when I first knew something is wrong.

My sister asked if I wanted her to accompany me to the appointment. At first, I said 'No." Then I quickly changed my mind. I knew I needed to take her with me because if the doctor even started to say there was nothing wrong, I would not be able to control my reactions and have no idea what I might say or do. So, please think positive thoughts for me this week... not just for an answer and some relief, but that I don't end up locked up for assaulting a doctor.

I will make no absolutely promises, but I will attempt to get back to writing on a more regular schedule. I hope at least some people missed me rather than saying "Geez, I'm glad she stopped writing."

Good Intentions Get Sabotaged One Again

I had great plans for today's blog. I did a lot of research about medications that are not the best choices for someone with FTD. Unfortunately, writing about that subject is going to have to wait until another time. There is no way I can do it today because my brain needs to be working in order to write about a subject this complex.

Before I started writing, I decided to check my emails. Included, was an email from the Pennsylvania Department of Transportation. Our state is so far behind most of the others in activating "Real ID" on drivers licenses. We are one of the reasons the federal government had to delay the requirement of having Real ID for boarding airplanes until 2020. Yep, our DOT's slow and sluggish reaction is causing a possible risk to our air safety. Welcome to Pennsylvania.

The email informs me that, after checking my records (which took them nearly a year), they discovered that they do not have all the necessary information on file. I clicked on the link they provided for a list of the documents that I will have to take to the DMV to obtain a new driver's license or ID card. 

I now must find my original Birth Certificate. I actually know where this is, but it must have a raised seal. I am not sure mine does. Because my Birth Certificate is, of course, not in my married name, I must find my Marriage Certificate. What? I have no clue where that is or if we even have it. There are a few more requirements like proving I live at my address, etc. A valid US Passport would help, but if I am not mistaken, mine expired a month or two ago. And... if I read it correctly, if I were a legal immigrant, I would only need to present one document. That just doesn't seem right!

This kind of thing can be extremely overwhelming for someone with FTD. In fact, just meeting one of the requirements could be overwhelming to someone with FTD. I started panicking immediately upon reading the instruction brochure. Not only will I have to find all these documents for myself, but also for my husband as he is incapable of doing it. His passport expired nearly 10 years ago. 

I keep trying to calm myself down because I do have a few months to get all the documents together. Unfortunately, calming down is not something I do easily. It is not just true for me, but the same for many others with FTD. When I get into that panic mode, my heart is racing, I literally pull on my hair and I am incapable of thinking about anything at all. Heaven help anyone who happens to ask me a question or tries to reason with me. It's not going to happen.

This is one of the things I harp on often because many caregivers still fail to realize it. We do not purposely react to circumstances in this way. It just happens and there is little, if anything at all, that we can do to calm ourselves down. In addition, at least with me, if someone tries to calm me down or tell me to "take it easy," it escalates. Many times, if I am asked what is wrong, I won't even be able to explain it anyway. I usually need to resolve it on my own. Knowing my husband is safely in his recliner watching (or sleeping) football, I have stayed in my room all afternoon to avoid conflict.  That is often the best action for a caregiver to take... do nothing. Make sure we are safe and not banging our heads against the wall, then leave us alone to work it out and get ourselves calmed down. Yes, sometimes intervention is necessary, but not until you try the least confrontational methods first.

Running through my brain is: How do I get to the bank to go through the safe deposit box? Where did my husband keep the key? What do I do if we don't have the correct documents? How can I figure out how to get them? Why do I have to pay a one-time fee $30.00 for a "free" ID Card since I can't drive anyway? Leave it to the DMV to think this makes sense.

 All I can say is welcome to my brain. It is nearly impossible for anyone who does not have FTD or other dementia to understand what happens when something like this pops up. I am exhausted from panicking, yet I know I will not sleep tonight (or maybe until I can get to the bank) because I will lay in bed worrying. Someone with a "normal" brain would just set the email and brochure aside and worry about it later, much later. 

For me, it doesn't have to be something even as complicated as this issue (which is probably not complicated at all without FTD). This next scenario is another example:  

I need to meet my my elder care attorney within the next couple weeks. He is also my financial adviser so we need to do it before the end of the month. His assistant has contacted me to change the appointment three times now. The last time was because the conference room is busy that day. I was thinking that since there will be only three of us, can't we meet in his office or something? After emailing back and forth several times, we found a new date that worked. Then, she writes back and says "Oh, we can meet on the original date. There's only three of us so we can meet in Jeff's office." And I'm the one with dementia???  I was ready to just cancel and find someone else. It was fortunate we were doing in via email. If we had been on the phone, that would have happened without a doubt.

This has been a long attempt at explaining how my brain gets so scrambled when facing things that it destroys my ability to set it aside and focus on things that I can do. Things like cutting things up to cook dinner without cutting myself, remembering to keep the sink spray nozzle aimed at the sink and not the middle of the room, remembering where I am in the house so I don't run into walls and all the things anyone with a non-FTD brain takes for granted. I did all three of these not-so-smart things today, along with many more. All because I decided to check my email before getting in to writing my blog. 

Caregivers, please try to realize how an FTD brain works or, rather, doesn't work. Actually, could everyone plese realize this? Also, please don't then shake your head and say "there s/he goes again!" while we can still see and hear you.  To the Pennsylvania Department of Transportation, could you please wake up, use some common sense and realize what you are asking of us? Could you not have done your part on a timely basis? To my hairdresser, "No, I have no idea why all my hair is missing! I wouldn't pull it all out, that would be downright silly!"

When to Say "When"

Everyone needs to know when to say "when."  It is something that I definitely need to learn more. I will admit that I was never one to quit until something was finished or when I had done all that I could. I always believed that I could just do a little more and do it a little better. 

For instance, I believe I said last year in a blog around this time of year that I was done hosting Thanksgiving dinners. I explained that it was just too complicated for me to coordinate all the dishes to make sure everything was ready on time. It was also way too exhausting for me to complete.

I actually did remember that this year, but Thanksgiving, to me, is a family day. The only family I have near me is my sister and her husband. Unfortunately, she fell several weeks back and shattered her shoulder which required a total replacement. There was no way she could help, much less do it all. So, of course, I called and invited them over. 

Everyone said the meal was wonderful, but I know better. I could tell that most of the dishes were cold because I didn't do a good job of coordinating them all. I could tell how dried out the turkey was because I forgot to keep an eye on it. I learned how tough the turkey was the next day when I wd as preparing leftovers and my husband requested that I "find some tender pieces for him because all that he ate yesterday was too tough to chew." Guess who was told to fix his own turkey?

I had actually considered picking up one of those pre-cooked feasts from one of the local restaurants offering them. You pick them up the day before and then just have heat everything up. I knew they wouldn't be as good as homemade, so I couldn't accept that it would do. Next year, I hope I remember that even though I tried to make the meal simpler than usual, it was still too much. I needed to say "when" and that I had to stop trying to host the meal. I must say, though, that even with the frustration of doing the meal this year, I would never give up sharing the day with my family.

I am going to use this newfound knowledge when it comes to decorating for Christmas. I have about ten totes full of Christmas decorations, not including the tree and trimmings. I went downstairs this morning and pulled out less than two totes worth of decorations and am going to do my darnedest to stick to it. I already told my daughter that I was not putting up the tree. I figure it was to do all the decorating and forego cookie baking or the other way around. At least after Christmas, the cookies don't have to be taken down, boxed up and hauled downstairs.

It isn't just the holidays that require knowing when to say enough is enough. There are times I need to do things like totally staying away from the support groups for a few days. It isn't very difficult to ignore the support groups for caregivers as well as those with FTD because those are the ones that drain me the most. It is not pleasant to read caregivers talking about and criticizing the person they care for. In fact, it is very sad and depressing at time. It is the groups that are just for those of us with FTD that are nearly impossible for me to ignore. 

I get so much support from everyone else with FTD and feel guilty, beyond belief, if I am not there to support them just as much. I do not need to avoid these groups as much as the caregiver groups, but I need to know when it is time to say "when."  I am trying to learn that some days, if I am feeling depressed and not feeling like communicating, that this is probably not the time to be commenting or advising anyone about anything. If I cannot stay away (which is about 98% of the time) I am learning to just read through in case someone does need some urgent support. I may click on "like" or something with just a couple words, but try to not share my negativity and general grumpiness. In this, I am actually making progress on saying "when" and need to keep it up.

The next, and maybe largest, thing I have to learn is that I need to not count on others to do things for me. The hardest portion of this is to not rely on friends. Just when I have reached the point of saying that I have given up on friends, a friend will actually get in touch with me. They will do things with me, usually nice things like take me out somewhere even to just get out of the house. Unfortunately, it seems like everyone's limit is three times. We will go out and, to me, it seems like we are having a great time. I certainly know that I am and I truly believe the other person is as well.

Just as I am feeling great and enjoying myself, the calls and visits come to an end. I call them or send a message, just to say hello. They will usually say something about getting together soon. Soon never seems to come. Of course, with the paranoia I have with my FTD, I am always sure I offended them or did something wrong. I wrack my brain (what is left of it) and cannot come up with anything. It always seems like they were enjoying our time together just as much as I was. 

These experiences are extremely heartbreaking. I wonder if it is not time to say "when" on counting on having friends. They certainly seem to have the ability to decide when to say "when" with their dealing with me. It's like I climb out of my non-socialization hole for a few weeks, then it is "wham" back in the hole and it is just a little deeper each time. 

I have to remember how exhausting it can be to deal with someone with FTD. It can be difficult for them to realize just why I have to be home before sundown. It is probably quite frustrating to listen to me tell them the same stories over and over again. It can probably be exhausting to try to figure out what I am trying so say when my words are not coming out correctly. It is possible that, even though I think we are having fun, to others it is not worth dealing with all the baggage I bring with me.

It is certainly when to say "when" with this blog entry. I am not as depressed as this has made me sound. I am, though, still exhausted from the holiday and the thought of preparing for the next one. At least I don't do a big Christmas dinner. We have brunch which is much easier and is a very informal buffet. Some of us are even still in our pj's. You may want to read that as "Cindy is usually still in her pj's" and add in that she is drinking another Mimosa!

Narcissists Are Not Great Caregivers

I am sure all, or at least most, people are familiar with the mythological character of Narcissus who was so impossibly handsome that he fell in love with his own image in a pool of water. Ergo, the term "narcissists".  Several things have been brought to mind recently that centered around narcissistic people.

Narcissistic people tend to not be good caregivers. Obviously, it can cause a problem because they tend to think of themselves instead of the one for whom they are caring. This is not the best case scenario for care giving, but can actually still work if there is enough room for thinking of the one with dementia as well as themselves. 

Unfortunately, I have known several people who have become caregivers for their own selfish reasons.  In one case, he didn't want to look bad to all who knew him. His mother was very much admired and respected by the entire community. Adding to it is that they lived in a very small town where everyone knew, pretty much, what everyone else was doing. So he made a big production out of everything he did. He would tell everyone how he was taking supper to his mother every day. What he didn't say is that he was doing the absolute minimum he could. Usually, her supper consisted of two hotdogs from the local gas station that sold them two for a dollar. His mother was living alone and he was not helping with any upkeep of the house. He would pick up her medications from the drugstore on his way home from work, yes. What he didn't let people realize is that he would open the front door, throw them in and leave without so much as a "Hello, how you doing?" Eventually, he asked a social worker to inform the rest of the family that she must go to a nursing home. She did not survive long in the nursing home and it eventually came out that he never even visited her while she was there. I guess it was out of sight, out of mind. Plus, he no longer had to worry what other people were thinking of him since he had done "the right thing" to get her the best care.

I have witnessed several examples of a different type of scenario involving narcissists acting as caregivers. In this scenario, the caregiver gets involved, again, because it makes them look good to others. They jump in and totally assume all control over the life of the one with dementia. They seem to be willing to dedicate their lives to that care and go above and beyond what is normally expected. I find them easy to identify because they come off as totally phony. "Oh, just look at him, isn't he so sweet!"  "It just makes me sooo.. happy that I can help her." "Doesn't she look pretty today? I love it! It's just like dressing a doll!" 

In cases like this, anyone who has ever been a caregiver for someone with dementia can quickly see that they are doing what makes them feel good and look good rather than what is best for the one they are caring for. These people are usually pretty quick to burn out on care giving. Once they do, they often blame it on the one needing care. "Oh, he just doesn't appreciate what I do." or "She won't cooperate or do anything I say." Once again, it is about them. They appear to be good caregivers until the novelty wears off.

I actually had a friend who jumped into being my caregiver with both feet. At first it was wonderful. She would take me out so we could have lunch, take me to women's meetings at my church and when I needed it, she would take me to doctor's appointments. One of the first signs that things were not what they seemed was at the women's group meetings. There was always an opportunity for everyone to report on something good they did for someone during that month. I never raised my hand and reported on anything I did. I always believed that I did those things because I cared, I could and that this is what Christians do. Every month, though, she would report on what she did for me. There I sat next to her as she was telling people everything I "needed" her to do for me and soaking up the praise she received.

It got worse. She insisted on calling me every day. I hate talking on the phone, really, really hate it. She was constantly telling me what I "must" do and what I must say to others. She was pressuring me to leave my husband and move three states away to where my daughter lives. I kept telling her that, yes, I would love to do that but that I believed in that vow I took of "for better or for worse, in sickness and in health." I will say that often she truly was a big help and stepped up when there was an emergency. As time went on, though, it just seemed like she was not only trying to prove to others that she was such a "good" person, but was also trying to control me. 

For my own state of mind, even though she was a help, I had to break those ties.

I have witnessed other incidences where people jump into caregiving to make themselves feel good about themselves, as well as looking good to others. I have actually seen a case where the person jumped in and took over as a caregiver, forcing out the other person who had been doing a seemingly good job of it. I later found out that her husband had been pressuring her to get a job and she used this caregiving responsibility as an excuse as to why she could not possibly go back to work. Later, when she realized just how much work it was, she dumped the person back onto the previous caregiver.

Those of us with dementia and the majority of caregivers for someone with dementia are extremely aware of how difficult the job can be. For someone to jump in due to their own selfish reasons is not going to result in the best care, physically, emotionally and mentally. For someone with dementia to be yelled at about how they don't appreciate everything the caregiver is doing for them, it can be totally demoralizing. 

For someone to make a big production out of taking over and acting as the caregiver and making others aware of everything they are doing, just raises red flags to me. Especially when they move the person with dementia into their homes, take over their finances and control everything they do. When this is done out of true love for the person, that is absolutely wonderful and a laudable action. When it is done to feel better about themselves and appear better to others, it is an absolutely selfish thing to do.

Yes the person with dementia needs assistance. However, the person with dementia needs love, respect, proper medical care and as active a life as possible while being provided with that assistance. When I say they deserve respect, I mean they do not deserve to overhear jokes about them, dementia or the funny or irritating things they do from time to time. They don't deserve to be talked about right in front of them, thinking that either they won't hear or they won't understand. 

Fortunately, the majority of caregivers are not narcissists and truly do all they do out of love. They know it is a pretty much thankless job, yet they willingly do it anyway. They keep at it through exhaustion, frustration and heartache. These are people who should receive the glory for what they are doing, but that is the last thing they would expect. These are the caregivers who need to be thanked. 

This week brings the Thanksgiving holiday to those of us living in the U.S. Let us all take the time to be thankful for the caregivers!

We ARE The Champions, My Friends

I did a lot of learning this past week. As you know, not only do I have bvFTD, but my husband has Alzheimer's Disease. The task of being his full-time caregiver can be extremely onerous, frustrating and exhausting a much of the time. I have done a lot of complaining about how family and friends, with the exception of my sister, run away in droves as though if they take an hour or two to help out, they might "catch" dementia. After my sister shattered her shoulder badly enough that she is out of commission for many coming weeks, I finally became determined to find some independence.

We, here in Pennsylvania, are fortunate that our state lottery system provides funds for Senior Services van service. You don't even have to be a "senior" as you are eligible at age 55 and at any age if you are disabled. The price per trip is usually between $1 and $1.50. I would pay more in gas if I was still able to drive. A couple years ago, before my sister was able to devote so much time to help me, I had utilized the van service quite a few times but it became more convenient to rely on her, so I stopped calling for the van.

I used the van for three trips in the past week. It means scheduling appointments carefully since the service starts early in the morning, but the last van is at 2:00 or 3:00 depending on which way you are travelling. It has worked amazingly well. I used it to go grocery shopping, to the chiropractor and to a medical appointment. It truly lifted my spirits to have a renewed sense of independence.

Also, this past week, I needed to make a 150-mile round trip for an appointment with my retinal specialist. There now is a retinal specialist in a nearby town, but I have been with Dr. Hoffman for over 25 years and we know and trust each other... me to trust his judgement and knowledge and him to trust my observation abilities and to know when to call for an emergency and when it is okay to wait until the next appointment. When a doctor is sticking a needle into your eyeball, it really helps to know him and have complete trust in him. So the long trip has never bothered me.

However, when you have no transportation, it can be difficult to arrange for an alternate. I finally became desperate enough to post a plea on my Facebook page for someone to drive me. I offered a generous payment and my step-niece stepped up and rearranged her day to take me. She and I have never spent much time together, so it was a great opportunity for us to get to know each other a bit better. So it ended up being a double benefit. We found we have even more in common than we thought we did. I knew her grandmother was dealing with dementia, but did not realize my niece had resigned her job to become a full-time caregiver for her grandma. She is really an amazing person.

I realized that I have to be more proactive in seeking out assistance, knowing that, like many others dealing with FTD have found, friends and family are not exactly beating down our doors to offer help.

A (nearly) life-long friend called to chat earlier this week and I boldly spoke up and asked him if he had any interest in seeing the movie "Bohemian Rhapsody" on his day off which happened to be the next day  I bought tickets for an afternoon showing, figuring it would not be crowded (good choice, there were only 10 people in the huge theater). I knew my husband would be okay for a few hours during daylight. (I did not realize how long the movie was so it was dark by time we got home and he was agitated, so I must be more careful about that since it gets dark so early now.) I packed up my earplugs and off we went. I did not even need them. Yes, it was loud but only during the music parts and that was just fine because Queen music has to be played loud, doesn't it? Queen and vintage Beastie Boys, for me, must be blasted!

Despite my apathy that comes and goes, I cried twice during the movie. Of course, one time was when Freddie Mercury died. The biggest cry, though, was when the song "We Are the Champions" was being played. The words really hit me:

"We are the champions, my friends,
And we'll keep on fighting 'til the end.
We are the champions,
We are the champions,
No time for losers,
'Cause we are the champions... of the world." and some excerpts from the stanzas:

"...But it's been no bed of roses,
No pleasure cruise.
I consider it a challenge before the whole human race,
And I ain't gonna lose." and...

"And I need just go on and on, and on, and on."

These words hit me so very hard because it was this week when I became determined to regain some independence and I realized that these words could be sung by every one of us who is dealing with FTD. It hit me that we ARE the champions. I don't think many people realize how strong we are forced to be and how most of us step up to the challenge to keep going on, keeping strong and fighting until the end.

To sum up my week, I found some independence and "I ain't gonna lose."  I will still have bad weeks, bad days and bad moments but I "will keep on fighting 'til the end." I know I am the edge of being corny, but, damn... it is irrefutable in my mind, as I wanted to get up and shout at the end of the movie, that we truly are the champions. We keep on fighting this disease and the naysayers who insist there isn't anything wrong with us. We have learned to stick together and fight together. We have learned to love each other, lean on each other and learn from each other to find the courage and determination we need to keep on fighting and struggling to find comfort and I will cling to that 'til the end.

We ARE the champions, my friends!

It's Always Something

Having FTD just plain sucks. Sorry for the in-your-face verbage, but that is the only way I can explain it so that people just might understand. It seems like every day brings new frustrations along with it. So even though we celebrate each new day, some days it just becomes hard to do.

Having FTD means that you must rely on others for nearly everything. I need help grocery shopping, going to the bank or post office, doctor and dentist appointments. I have been extremely fortunate that when my husband was diagnosed with Alzheimer's and could no longer function in the capacity of caregiver, my sister stepped up big time. Even though she lives about fifteen miles away, she drives me where I need to go, sometimes three or more times a week. She has done this every time with a smile and a reassurance of how happy she is that she can help me.  Everyone should be as lucky as to have someone like her.

Unfortunately, two weeks ago, she fell and shattered her shoulder. The stress of not being able to be by her side while she was in the hospital for 10 days was astronomical. Fortunately, my awesome brother in law not only called two or three times a day with updates, he also brought her here to visit with me yesterday. 

The worst part, for her and for me, is that she cannot drive for 6-8 weeks. What do I do now? Well, I am getting reacquainted with our county's Senior Services Transport Van. They are very inexpensive, but the times are quite restrictive. For instance, I could get a van to take me to my scheduled dentist appointment next week at 2:30. Unfortunately, they would not be able to bring me home because the last van leaves that part of the county at 3:00. I rescheduled for next month, but since my appointment is at 1:20, they cannot guarantee I will be there in time unless I take the 12:00 van. It makes it difficult for someone with FTD to plan life around their van schedule. It is the same for every appointment I have. I am guessing I will get to know the van drivers pretty darned well.

I am thankful for the service though and don't mean to be whining about it. Ten days or so ago, I was able to find a friend to drive me to the grocery store. This week, no such luck, so I will be taking the senior van. Should be interesting because grocery shopping with someone along with me is a challenge in itself!

I am getting better at asking for help. I called several family members and friends trying to find someone to drive me 90 miles to my eye specialist this week for a necessary appointment. I finally found my step-niece to drive me, which is quite awesome of her to be willing to do. Out of everyone else I tried, either they couldn't do it, or they said they probably could, but when I contacted them again to pin it down, surprise... can't do it anymore.

Being the caregiver for my husband who has Alzheimer's Disease is an extreme challenge for my with the limitations FTD pours down on me. With the transportation issues, along with the constant concern for my sister and regret that I can not help her despite how much she helps me, and the 24/7 care of my husband, I am stretched beyond my limits.

These are the kind of things that so many caregivers fail to realize. Many are not able to recognize how difficult and frustrating it is for those of us with FTD to tackle every little thing all day and all night long. A huge number of them see us sitting around doing nothing and adding to their workload constantly. Yes, many of us do. However, it is not because we are lazy or do not care. We do have apathy, but the realization that we are seen as an imposition is heart breaking. We don't do the things we used to be able to do because we don't want to. We don't do them because, first of all, trying to get through a day with FTD is exhausting. The other factor is that we may not remember or understand how to do those things. It breaks my heart when I find yet another thing I can no longer do. I am sure it is the same for others with FTD as well.

Let's compare my sister's situation to mine. She has a huge sling/brace apparatus that she must wear 24/7 for the next six weeks. Anyone who looks at her immediately realizes that she has limitations as to what she can do. People automatically hold doors for her and offer to bring in meals, etc.  For someone with FTD, people cannot see what our limitations are and jump to the conclusion that we are lazy or just don't care enough to do things anymore. 

People can often recognize those with Alzheimer's Disease because their symptoms are at times visible to those observant enough. With FTD our symptoms are often hidden.  Add in the fact that we can often get "up" enough to seem normal to others. I firmly believe that is due to pure adrenaline. The adrenaline allows us to function at a higher level than normal. We pay for it though. After expending the energy to be as normal as we can, the adrenaline crashes and we suffer for at least a day, sometimes longer. We can be totally exhausted, irritable and difficult to get along with. It is pure and total fatigue, physical and mental.

This is difficult for others to understand. I understand that for strangers and those with limited experience with FTD. I do expect that our care partners and loved ones should understand and compensate accordingly. I do realize how exhausting caregiving can be. I am doing it now for my husband and have been caregiver for previous family members with dementia, now thought to be FTD.

I will actually run the risk of offending caregivers here, because today I am exhausted enough and have enough apathy that I just don't care. I become resentful when I hear or read caregivers complaining about how exhausted they are and how much they need to have a respite from their care giving role. Don't get me wrong now, I am not saying they do not need or deserve a break. What I am trying to say is that I resent that none of us with FTD can have a respite from the disease, not ever. Trust me, we are just as sick and tired and exhausted from dealing with the disease as any caregiver can possibly be. 

I feel resentful, and yes, probably jealous when I hear about their wonderful respite adventures. I am not proud of this at all, it is just the way it is.

While I am on this subject, I am going to really take the risk of offending another group of people. I am jealous and resentful every time I see or read a story about the brave FTDers and their amazing caregivers who travel, attend banquets, dine at fancy restaurants, visit exotic places as well as museums, the theater or more despite their illness. I hate that I feel that way, but I cannot deny that I do. Most of the FTD'ers that I know are not able to do things like that. Not only do we not have the energy or ability to do them, but FTD drains all of our financial resources to the point that we can't. The only travel I do, as well as a lot of others, is to the annual AFTD Education Conference. 

I would never suggest that these other FTD'ers should not do and enjoy everything they still can. It goes without saying, as far as I am concerned, that everyone of us should do everything within our resources to enjoy the life we have left. Those who are able to do it on a grander scale than I can, I actually applaud you and encourage you to keep on doing it all. 

The point that I am trying, maybe not so well, to make is that we need to hear about the others. The magazine articles, films and broadcasts need to include the ones who are struggling... the ones who can no longer afford to go to the doctor or to have the tests they need. Either they no longer have insurance or the co-pays are too much for the budget. This would include those who are just enough above the poverty level that they do not qualify for Medicaid or any other assistance programs.

The ones who can still do, and afford to do, these wonderful things certainly should be celebrated and honored. Though sometimes I think it is the ones who have the least yet manage to cope with FTD (or any other disease) are the ones to be honored and applauded. The ones who struggle to be able to put food on the table and still pay for their medications. are heroes to me.

Now, before you accuse me of feeling sorry for myself or throwing stones, I am in between my two examples. I am not in a financial position to travel, mostly because I would also have to hire someone to come in and stay with my husband, but we are financially stable. We are living comfortably on our Social Security and retirement savings. So it is not just sour grapes. I just still have enough empathy left in me that I worry about those who are not living comfortably.

This blog is an excellent example of how the frustrations and exhaustion of FTD can affect someone. Both are a drain on me and, obviously, sometimes bring me to the point of resentment and anger. Again, I am not casting stones at anyone, not implying that those of us with FTD are better than our care givers nor that anyone should feel guilty about what they can or cannot do. I am merely expressing the frustrations that I am feeling right now, and nearly all the time. We are all in the same boat, every one of us... every one with the disease, every caregiver and everyone who loves them.