FTD Is A Thief

FTD is a horrible disease, there is no doubt about it. How do you decide what is the worst aspect of FTD. Today, the worst thing about FTD, to me anyway, is that it is a thief. It eventually steals everything, including our lives.

This is Halloween week. Here where I live, Trick or Treating for the children. Yes, I know it isn't Halloween yet. I was flabbergasted when we moved here and learned that it was always on the Thursday before Halloween, even if Halloween is on a Thursday. The children still enjoy it, I am sure, but what do they do on October 31st, I wonder?

Halloween, years ago, was a holiday that I looked forward to for months. I decorated my house, inside and out. I baked cookies and made caramel apples. I sewed my daughter's  costumes. We made her into a Sleeping Beauty, a Rainbow Brite Doll, a Karate Kid and so many more. Sometimes, I could con her dad into taking her from house to house so that I could stay home to greet all the other kids. I loved seeing and talking with every one of them. In some of the places we have lived, we would have over 100 visitors. I was in Halloween Heaven!

Then FTD entered my life and ruined it for me. It has worsened every year to the point that last night, I didn't even want to open the door. Someone would knock and I cringed. I did succeed in opening the door and handing out candy, but I could not care less about how they were dressed, how cute or how scary they were. I was unable to communicate with the kids at all, just handed them a handful of candy. I had not even put up decorations nor carved pumpkins to put on the porch. 

One young family came to the door... mom, dad and a little girl dressed up like a lion. I will say she looked adorable, especially her lion's mane. No scary lion was she! We had not met these parents before because they recently moved into a house at the other end of the street. They introduced themselves as Zach and whatever his wife's name was. I only remember the Zach part because I knew that was the name of my niece's cousin who I knew had moved into the neighborhood recently. So I asked him if that was his last name. They kept talking, talking and talking about themselves, their house, their family and even told us about the trip they made to Florida to visit my niece, his cousin. I was expected to remember all the people they talked about and follow their stories. Obviously, I could not even remember the wife's name!

I was stressed to my absolute limit. I wanted to close the door, lock it, turn off the lights and cry. It was too much, the little girl was squirming and trying to talk to her parents at the same time they were talking to me. The parents were telling me way more information than I could comprehend. We probably only chatted for ten or fifteen minutes, but it was too much after the first minute. Just answering the door and handing out candy to all the kids was too much for me. I wanted to slam the door in their faces. I wanted to scream at everyone to just go away. 

The pathetic part of this is that we only had three trick-or-treaters the entire time. Yes, only three yet it proved too much for me. I spent the entire time getting more and more stressed. I managed to have it totally quiet in the house but that only helped a little because I was on edge, fearing another knock. Kids are only allowed two hours of trick or treating here which doesn't seem that long, but after the first hour, I was done in. I put a basket of candy out on the porch and locked the door. My fists were clenched, my jaw was aching from clenching, to the point that I still had a headache the next day and I was rocking back and forth trying to comfort myself. No candy was taken from the bowl, so I don't think there were anymore visitors which helps me feel a little bit better that I had not shut anyone out.

Three kids and three sets of parents. Who would have thought that FTD would turn me into such a state that I could not enjoy just that little bit of the holiday I used to love. Once I had calmed down, I was angry! I hope and pray that I never reach the same point with Christmas. I am afraid that would totally destroy me. 

All I could think was how much I hated FTD and what it does to us, how it can steal all the pleasures from our lives. I am sure that everyone with FTD would be able to create a long list of what pleasures that the disease has robbed them of, how many events they have had to miss and things they can no longer do or enjoy. 

So many with FTD had so many things stolen, such as the hobbies they used to enjoy, going for walks and so many other things that we used to take for granted. I get angry when I try to watch a movie and have to walk away half way through because I can not focus on anything for more that 45 minutes or so. If it were not for DVR's, I would not be able to watch TV shows either.  If I watch a 60 minute television program and skip all the commercials, it ends up being right at my limit. Some days, though, I cannot even concentrate for that long. I certainly cannot watch more than one a day.

I know I have complained before about the resentment I have toward FTD because I cannot read like I used to. I am actually fortunate that I can read at all, but I can only read novels with no complex plots, too many characters or too much of anything. The good part is that I save a lot of money on e-books because after three months or so, I can reread them without remembering the plots. The books I read are probably at a junior high level. That really hurts.

I hate that FTD has stolen my artistic abilities. I have probably complained about this before as well. I used to be an artist, an award winning artist in fact. I used to make money by decorating cakes, even did a few wedding cakes. I did one about six months ago and it wasn't even at the level I could do before I learned how to decorate cakes. 

I really hate that FTD has stolen my ability to interact with others. I cannot carry on conversations with people I don't know or more than one or two people at a time. I get too stressed and actually have had panic attacks. If you have seen me at the AFTD conference, you have seen me how I used to be. You couldn't shut me up whether you were a close friend or a stranger. At the conference, I know I will not be judged if I say the wrong thing or sound like an idiot or take to long to get my words out. It is such a non-threatening and welcoming environment that I talk to everyone practically non-stop. My daughter is amazed at the difference in me between the conferences and my every day life.

I hate that FTD has stolen my ability to look normal, to not stumble and stagger when walking, making people think I have been drinking. One time, I was entering a bar/restaurant when I fell right there in the doorway. Several people came running to help, asking if I was okay, could they do anything. Embarrassed, I finally got myself up and tried again to walk into the building. I fell again and ended up sprawled all over the floor. That time, no one came to help, they looked at me like I was a drunk. When I finally got up, I realized there was just a tiny step, probably less than one inch. With my loss of peripheral vision, I could not see that little rise and that is that was what was tripping me.

I cannot go without mentioning the absolute anger and frustration most FTDers have when we are told, or realize on our own, that we can no longer drive. We lose our freedom and  independence. We lose the privilege of just picking up and going out to eat, shopping, visiting, etc. 

I hate FTD because it has stolen some of the appreciation others had for me. It is so very frustrating that this is almost an invisible disease. People look at us and think we are still the same person we were before. Then don't see any physical symptoms. Perhaps if FTD game us a big flashing sign on the top of our heads proclaiming the disease, they might recognize that we are fighting a disease. Probably not though, they would just look and think we were trying to get attention.

Bottom line, I hate FTD, with a passion. Hate it, hate it, hate it. It has stolen so many things in life that I used to take for granted and never dreamed that I would end up having those abilities stolen from me. 

Finally, back to the holiday issue. To caregivers and those who love someone with FTD, please talk to them and ask what you can do to help the holidays be more tolerable for them. If my husband were capable, I would have asked him to answer the door. There are probably things you can do to help your loved one cope with events and holidays. It is also a good idea to watch them for signs of stress and discomfort before it becomes too much to handle. Like we often say, please try to step into their world and look at things the way they do. See how FTD limits them and their enjoyment and what you can do to help. Everyone deserves some enjoyment in their life, even those of us with FTD.

Eye Issues with FTD

Lately, I have been repeatedly asked about what effect FTD can have on the eyes. The answer to this question varies greatly depending on whom you ask. As you read this, please bear in mind that I have no medical training. I have, however, read an awful lot about how the eyes work and about different diseases of the eye. I have had diseases of the eyes for about 30 years now and that is why my avid interest in the subject. Much of my knowledge has also come from the many eye specialists that I have seen in many clinics across the country.

For me, one of the most interesting thing related to FTD and the eyes is research that is being conducted regarding early detection of FTD through images of the retina. In the research, retinal degeneration possibly can detect FTD before the patient experiences and clinical symptoms.

The retina is often called "the window to the brain" because it is made up of neurons that directly connect to the brain. Researchers have noted a significant decrease in cell activity in the retina of dementia patients. Much of the research, but not all, has been limited to the genetic form of FTD so far.

So, if early detection is possible through the retina, it seems possible that the retina could be the cause of eye problems in FTD. Each eye has its own retina and they each send their images to the Occipital lobe, located in the back of the brain. That is the end of the retina's job. Your eyes each see their own image and each sees approximately 3/4 of the image the eyes are seeing. It is up to the brain to overlay the two images into one image. It is up to the other areas of the brain to interpret those images. Much of this interpretation is done by the temporal lobes.

If the two images transmitted from the retinas are not interpreted by the brain properly, the images may causes many symptoms, including double vision. Double vision is a very troubling symptom to many with FTD.

Quite often in FTD, those who complain about blurry vision are actually experiencing a small amount of double vision. It is suggested to test this yourself by covering one eye at a time and determining if the vision is blurry in just one eye or only when you look through both. If both eyes, by themselves, are not blurry, the cause of the blurry vision is quite possibly a case of double vision.

In some cases, the double vision can be extreme. Instead of appearing as blurry vision, the patient may see two distinct images. This can be quite troublesome in many ways. For instance, when travelling in a car, I see two images of cars coming toward us. One of them appears to be in our lane which causes me to become frightened and I often distract the driver by my reactions. 

Along with the double vision, there can be other differences in the image from each eye. For some, if you cover one eye at a time, you can often tell that one image is larger than the other. It can also reveal a different in color intensity and/or a difference in depth. This depth perception can be troublesome in itself.

Now, I would be negligent if I did not mention that there is no way for corrective lenses to correct these vision issues. For most people, double vision can be corrected with prism lenses to bring the two images together. In FTD, the two images fluctuate constantly. The prism lenses may help intermittently, but they can make it worse the rest of the time. I mention this because many optometrists will suggest this and, with the costs of glasses, it can become a huge waste of an investment. 

The easiest way to explain why our double vision issues are different because of our FTD is to explain that it is the brain seeing double, not the eyes themselves. In the case of non-FTD patients, the cause for double vision is quite often muscular issues with the eyes. Not so for us. 

Poor vision can also affect those with dementia with the loss or restriction of peripheral vision. Let me tell you, I am a terror in the grocery store because I cannot see other people or their carts until I am right up to them, usually bumping into them.  I read that the loss of peripheral vision can also add to difficulties dementia patients experience eating. In the late stages, when they are needing to be fed, they don't see the food or utensil until it is right at their mouth and it scares them. This is also part of the issue of FTD patients being afraid of the shower. They cannot see the water until it hits them. Many experts will tell you that when approaching a dementia patient, approach from the front, not the back or sides because they can't see you and will be startled.

There are other things too. For instance, double vision can rapidly tire the eyes and lead to horrific headaches. Add that to the already existing problem of FTD headaches and you have a real mess. Eye strain is an issue as well. I can only watch television for short intervals, about 45 minutes. The only way to continue after that is to cover my left eye (which in addition to double vision has a huge blind spot) because the right is strongest and finish watching with one eye. I can't do that for very long either.

Fortunately, at least for me, the double vision gets worse with distance so I am still able to read and do things on the computer

The other thing I advise for those with FTD is, when you are wanting to have your eyes checked, please see an Ophthalmologist (preferably one who is quite knowledgeable about retina issues) and not an Optometrist. I have always found that Optometrists are the best when you are needed corrective lenses, but for diseases of the eye, always an Ophthalmologist.  

I am probably forgetting some of the issues with FTD and vision, but this is certainly enough information for one blog. Again, please remember that I have no medical training and that if you have questions about your eyes, please see a professional!

Random Acts of Kindness

I absolutely love acts of kindness.  As long as I am on the giving end anyway. I just love bringing a smile to someone's face without having them fuss about "oh, you shouldn't have." I do it because I want to, not because I have to. It just warms my heart to be able to do something.

One time at Bible Study, as Christmas was nearing, an older woman mentioned that no way is she going to put up a tree this year. Several of us offered to go to her house and do it for her. She refused, saying it is too much work for anyone to do. I went home to my craft room and grabbed an artificial 20" tall tree and hot glued some beautiful ribbons and decorations onto it.  Later, when I knew she would not be home, I left it between her storm door and front door with a typed note "Everyone needs a little Christmas."  The next week, she suspected it was someone from out group and raved about it yet she fussed that someone went to too much trouble for "just" her.

How difficult does something have to be until we think it's not worth bringing a smile to someone's face or a warm feeling in their heart? Does it have to be for a friend or an acquaintance so that you can actually see the smile or can it be for a stranger? I don't need to see the smile, I get all the reward I need when I know I will make their day just a tiny bit better. It just makes my heart smile!

You are probably asking what this has to do with life with FTD. I will once again need to put my caregiver hat on to explain it. My husband, who is in the late stages of Alzheimer's, is home with me again after being in the hospital and rehab center for four weeks. Our Home Nursing Agency has sent a nurse to see him a few times already as well as a physical therapist and an occupational therapist. (On a side note, they scheduled a home health aide to come help him shower. He said he would let the aide help him, as long as he could leave all his clothes on.  Obviously, I canceled the aide. I even managed to not laugh in his presence.) Together, we managed to get him showered. I can only think that he believed the aide would get naked and go in the shower with him!

The nurses all suggested that I get him to do some easy things around the house and try to get him outdoors for at least a few minutes a day. It sounded like a good idea, so I tried.  I asked him to sweep the leaves off the part of the deck by the sliding door. He agreed, but insisted I come out with him. The next day, I suggested he go out for the mail and newspaper. You guessed it, I had to walk with him because he was afraid to cross the street to the mailbox. Now, that was funny because I am the one with the history of walking out in front of vehicles. I know I want to get to the mailbox, so I just go, forgetting that there are sometimes vehicles, even trucks full of gravel, that speed down our little road. One of the joys of FTD, no impulse control.

The next day, I asked him to unload the dishwasher. He was very willing and quickly put away the coffee mugs and plates. Then he closed the door and said "That's enough, you can do the rest."

I am sure you can imagine that being a caregiver for someone with Alzheimer's is not easy for someone with FTD. In fact, it gets downright difficult. Besides caring for him, I have had to absorb all the household tasks he used to do, even the financial things.  Pretty difficult when I struggle to write out a check, often beginning with the date. What month? What year? The check printers are going to love me. I go through a book of checks in almost no time because I have to void so many.

When I was diagnosed with FTD, we had no suspicions that he was developing dementia himself. He doted on me constantly, until I had to ask him to back off, that I was still capable of doing things. He took over filling my pill boxes, doing the grocery shopping once in a while, just everything he could. I did not realize how much he was doing until I had to start doing it all again. 

I am sure you are wondering where I am going with random acts of kindness and needing to become a caregiver. I will get there...

When he unloaded the few things from the dishwasher and then saved the rest for me, my immediate reaction was anger. Understandable, I think, because of the strain of being someone with dementia needing to care for someone with worse dementia. It takes every bit of energy I have. So I am very thankful that I bit my tongue and did not say a word. Thank you, impulse control, for showing up for once! 

I sat and fumed for a few minutes, then something occurred to me. If this was a stranger or a friend, I would have offered to take over and do it for them, then asked what else I could do for them. I also remembered how much I appreciate it when my sister gives me an arm to lean on when I am walking in a parking lot or crowd. Or, when I keep thanking her for coming over and driving me wherever I need to go. She always says, "That's what sisters do!"

I went even further and remembered a time when I was fussing about having to make a speech. I just didn't want to do it and I was coming up with all kinds of excuses. My husband looked at me and said, "Cindy, if you take all the energy you are using to complain, you could have the speech written and practiced enough that it will be easy for you."

Here I was, using more energy being angry that he could not even empty the dishwasher or do the other simple tasks I was asking him to do. I was angry that every time he went to ride the stair lift that I had someone install before he got home from rehab, he insisted on me following it downstairs and back up to make sure "he did it right." I kept wondering why he was making such a fuss about sitting down and pushing a button to go up or down. 

I was reacting to my husband of 45 years so harshly, yet if he was a stranger, I would be just the opposite. It really turned me around. I emptied the rest of the dishwasher and thanked him for doing the part he did. I sat down to fill his pill boxes for the week and was thankful that I am still capable of doing it instead of growling that I had to do it.

Being a caregiver is an extremely difficult job for anyone. I don't want to make it sound like it is only difficult for me because I have FTD. Of course it does complicate the situation. I do believe that many caregivers fall into the same trap I did. They complain about all the things they have to do. They completely take over because it is easier and much quicker to do it themselves than to have their loved one attempt to do it first. I now find that I am able to ask him to do something because I realize that redoing it after he does it won't take any longer than doing it first and it just might make him feel like he is contributing something. 

My attitude has changed. I am still exhausted, but I am not tied up in knots of resentment at the same time. This morning, it was was only 60 degrees in our house. The outside temp had really dropped overnight. When I realized in the middle of the night how cold it was in the house, I pulled up the comforter. When he felt the cold, it did not even occur to him to pull up his comforter. I broke down and turned on the furnace, then returned to his room, crawled into his bed, snuggled up with him and said I would give him some of my warmth. He quickly stopped shivering and actually drifted off to sleep again. 

I learned from this. I realized that he does need my warmth to keep him comfortable. It is not always nearly as easy as turning on the heat and snuggling. This is only a vivid example to me that he needs my support to make him more comfortable dealing with his new difficulties in doing anything and everything. 

I also realized that it had been a long time since I had the opportunity to snuggle up to him. I warmed him up, but it warmed my heart just as well. I need to remember that feeling and keep in mind that everything I am doing for him is a (not so) random act of kindness.

We All Fight Together

A huge "thank you" to all who have come back after my month-long absence from blogging.  As I said in my last Blog, caring my husband who has Alzheimer's Disease had taken a turn for the worse. Yes, it is a full-time challenge for me as it is for all caregivers. I simply had no energy left to think, much less blog.

What I did manage to do was kick off a campaign to sell "I Am Fighting FTD" ballcaps and then shirts. I was doing this as a fundraiser for the AFTD during their "Food for Thought" fundraising campaign. 

I am not trying to sell them here. I merely mention it because on the shirts that I designed, part of the message on the back is  "We All Fight Together." At the time I designed the shirts, that phrase jumped out at me because together, we are a mighty force to fight against FTD. We all stand together to push for research, assistance for those with FTD and/or caring for someone with FTD and to educate the world that FTD even exists. 

This mighty force I refer to has to involve all of us and we must all be committed to the same cause. Not all of us can climb up on a soapbox and speak out to anyone who will listen. Interestingly enough, I could not have done that before FTD, but now I can and I do. However, every one of us is part of the force in someway. Even when it is correcting people every time they assume that what we have is Alzheimer's Disease or make stupid remarks like "You look fine to me."

When I was first diagnosed with FTD, I was lucky to immediately find the AFTD and have relied on them ever since. I try to repay their efforts and assistance by doing what I can to raise money and spread the word about FTD. More so the second. I can comfortably say that I have educated a lot of people about FTD, whether they wanted to be or not!  Because FTD quickly robs most of us of financial resources, it is difficult to monetarily support any organizations. That is why I use my remaining talents to support the AFTD since my finances are limited. 

The AFTD is not the only organization out there supporting the fight against FTD, there are others. I apologize that I cannot remember all of them, but they are are fighting FTD in their own way. Some that come to mind is PSP.org, Dementia Society of America, Dementia Alliance International, FTDarn and even the Alzheimer's Association. To me, it would be ideal if all the organizations worked together, not to cross purposes. Hopefully, they already do and I just am not privy to that knowledge. I hope that they share information, resources and research findings when possible. 

I believe I mentioned, a few months back, that I was serving on Pennsylvania's Task Force for Alzheimer's Disease and Related Dementias. (Yes, that's us, lumped into "related dementias".) I am doing my best to constantly remind the members of the task force that the related disorders are just as important. Trying to be heard is frustrating, believe me. I am also serving on a sub-committee and one of my assignments was to contact many of the different dementia organization to determine what they do and what types of support they offer. I was amazed at how many of the organizations held that information to the vest and were reluctant to share it with me. Of course, it is also possible that my FTD didn't allow me to ask the right questions.

Perhaps I am an idealist in my thinking that all the organizations should assist and rely on each other. My thought is that, ideally, we would have a national registry of all non-profit agencies. Then, when someone receives a diagnosis of any disease, they could make one contact and learn what resources are out there and how to get in touch with them. For instance, I did not know that the Alzheimers Association supports those with FTD and other dementias. Unfortunately, seeing how this national registry would most likely be done by a government agency, I probably am indeed an idealist.

There is more to the "We All Fight Together" expression I put on the shirts. It is for everyone of us. If we are members of or supporters of one organization, that does not mean that all of our support has to be limited to one organization. Each organization has its own principles and purpose. Yes, it is up to us to research and learn about each organization ourselves before we chose whom to be assiciated with, but it doesn't have to be just one.

I would be negligent to not mention that it might be better to focus on a small number. If we spread ourselves and our support too thin, we become less effective due to our limited resources of time and energy. At least that is very true for me.

Fighting together applies to support groups as well, at least in my mind. Some groups are limited to those with the diagnosis, some to family members, some to caregivers and probably many more. It my experience, it is the open groups that sometimes get people taking sides. It's worse for patients... no worse for caregivers.... no worse for... 

We all have to fight this disease together, not push against each other. We can all learn if we listen and don't immediately dismiss opposing opinions. If you read my blog regularly, you probably know that I suffer from the paranoia that FTD often brings us, so take that into consideration when reading my next statement. Quite often, when I am on the joint support groups, I feel my opinion is totally dismissed because I am not a caregiver so I cannot understand. Of course I am a caregiver, but I would like to think I would understand the caregiver's problems even if I were not. 

There is so much benefit by listening to all sides of a situation. These open support groups are not the perfect place to be writing about how horrible those with FTD can be. We already know we can be. We also do not need to hear how much we are resented and, in some cases, hated. It's not the place for those of us with the disease to be criticizing all caregivers. Those comments need to be in a more private forum so that we can, indeed, fight together, not against each other.

After reading back over what I have written so far, I do realize it is coming across as a lecture. That is certainly not my objective. During the past month, I have observed many upsetting situation, not just online, but in the hospital, in the nursing home and even with the Home Nursing Agency who is providing some help for my husband adapt to home life once again. I hope my husband was not aware of these careless and thoughtless comments and actions, but my sister and I certainly did. They brought all these issues to mind.

When I added the "We All Fight Together" to the shirts, I was not aware of why it jumped out at me. As life progressed through the past month, it became obvious that there was indeed a reason.

Thank you for bearing with me... and I promise not to lecture next week.  It's good to be back...