FTD is No Fairy Tale

In the past three or four days, I have had some pretty interesting conversations with some others with FTD. One was frustrated because her husband was assuming that since she has FTD, she can no longer do anything and certainly could not do anything right. She was feeling worthless. Another conversation was with a caregiver who blamed her loved one for everything that went wrong and she truly believed that every negative behavior was being done intentionally by him. Fortunately, I am also familiar with some care partners and their loved ones with FTD who do actually work together to make this journey through FTD as pleasant as it possibly can.

While thinking about these different FTD experiences, I must have regressed to my childhood. I started to come up with an odd interpretation of the children's story of the Three Little Bears.  In my interpretation, the bears are loved ones, caregivers and care partners to someone with FTD. If you do not like the idea of my story, just skip the next three paragraphs and go with the reality that follows.

Once there was a bear who assumed that now that his loved one has been diagnosed with FTD, that they could no longer do anything. The bear took over everything in their lives. He cooked, he cleaned, he shopped, he did laundry, he insisted on going everywhere with his loved one and he made all the decisions. When the person with FTD tried to help, he criticized how it was done and told her not to do things anymore. He made all the decisions in their lives such as where to go and when. The bear's loved one was made to feel like she was totally worthless and there was nothing she could do correctly. She always felt that he was belittling her. It wasn't easy for the bear either. It did not take long until the bear was depressed, angry and totally worn out from doing everything himself. His own health declined as it became more difficult to do everything himself. He began lashing out at his loved one by yelling and criticizing her. This just made everything worse because the FTD'er also became depressed, angry and worthless. Life was not pleasant in this home.

In another part of town, there was a bear whose loved one was also diagnosed with FTD. This bear accepted the diagnosis but did not acknowledge the symptoms of FTD in their loved one nor accept how FTD had changed him. The bear became angry and resentful every time her FTD'er did not do things that he used to do on his own or didn't do something she had told him to do. This bear yelled often and was constantly criticized him. She believed that he was hiding things, like the remote control, on purpose just to get to her. She also got angry when the FTD'er got confused and did not understand what she was telling him to do. One day the bear discovered that the FTD'er was not paying the bills and was convinced he was forgetting just to irritate her. Both the bear and her loved one became so very frustrated and angry that they barely talked anymore. They were always fighting, it seemed. It did not take long until the loved one did not feel loved and lost interest in everything around him. Obviously, life was not pleasant in this bear's home either.

In yet another part of town, there was a bear who, when her loved one was diagnosed with FTD, she learned as much as she could about the disease. She researched on the internet and talked to others who either had the disease or was caring for someone who did. She even read a couple books about it and joined a support group. Learning what FTD was going to do her loved one was upsetting to her and she got angry at the disease quite often. The bear kept reminding herself to get mad at the disease and not the one with FTD. She did learn that the only way they were going to be able to cope was to talk about it with each other. This bear paid attention to when her loved one was more irritable and figured out that it was when he had done too much the day before. She realized that after stressful days, his FTD symptoms would appear worse. So she started scheduling less things on the same day. She encouraged him to do activities that he used to do or to learn something new. She figured out that if he could accomplish things, he would feel better about himself. She didn't yell at him very often because she learned it did no good. She would let the subject drop and then talk about it later when they were both calm. If he folded laundry, but it was done wrong, she thanked him for doing it without criticizing. Then later, when he was asleep or watching TV, the bear refolded it the way she wanted it. The bear and her loved one still did things together, they laughed when something went wrong because of his FTD. The bear understood that the FTD disease was causing him to act differently. This bear's home was still very pleasant to live in. 

Okay, I have FTD and sometimes I come up with some weird ideas. I won't even start about the weird dreams. 

There is no perfect way to deal with FTD in any relationship. There are no instruction manuals or experts who can tell you exactly how to deal with your FTD relationship. Some people can give you a lot of suggestions and ideas for what MIGHT work or what has worked for them. That is what I try to do. If I ever come across as though I know everything about FTD and dealing with it, that someone will set me straight.

No two cases of FTD are alike. The disease does not follow a pattern as to what order the brain cells are destroyed. That is why we often hear or see comments on the support groups about how their loved one is nothing like the person who has FTD is being described.

No two relationships are the same. If the relationship between the one with FTD and the caregiver was strained before FTD, it is bound to get even more strained with it as a factor. The same is true with financial situations. Finances are often a huge issue with FTD. Careers are ended much earlier than was planned. The difference between dollars from salaries and wages while working and the number of dollars from Social Security Disability or disability insurance can be a very wide gap. If the one with FTD was the major wage earner in the relationship, the strain can be overwhelming. Combine the reduced income with the increased expenses brought on by FTD, and it can be an overwhelming strain on any relationship.

People can have totally different personalities. My mom always said I had a "take charge personality" which I believe was her kind way of saying I was a pushy person who insisted on jumping in and taking over. This kind of person can be detrimental in a relationship with FTD involved because they will jump in and take over everything and try to do it all themselves. There are also people who don't want any changes to routine nor any added responsibilities. They are happy with how everything has always been and wish it to stay that way. Neither of these approaches is going to work well in a relationship that involves FTD. 

Fortunately, there are others who work things out. Those who are fortunate enough to have others who are willing to pitch in and help obviously have an easier time. A lot of flexibility along with give and take is needed to maintain a decent relationship. I doubt there is any totally peaceful household that includes someone with FTD. It is a fickle disease and those of us with the disease can be different from day to day. I can be different from minute to minute. 

I wish my story had another bear. This bear would be someone like my daughter. She takes things in stride fairly well. She will ask me if I need help with something and then back off if I say no. She realizes how stubborn I have always been and that it is often worse since FTD. She comes up with suggestions for things that I might enjoy doing that would be possible with FTD. She rarely criticizes me. She will tell me when I am wrong or over-reacting though. She is a perfect balance. Then again, it might help that she lives in a different state. We talk for about a half hour every day, but that is certainly not like living in the same household. 

The fourth bear could also be my sister. She has learned enough about FTD and knows enough about the quirks in my personality, that she is really good for me. She takes me grocery shopping, but doesn't get angry or frustrated with me when I do things like tell her to keep up with me and don't try to evaluate if I might like a different product after I have made my selection. She has learned that when I snap out, it is the disease causing me to do it. She knows when to step in and when to back off. She and her husband do a lot for me. Not everyone with FTD is lucky enough to have someone like them.

Dealing with FTD requires the patience of a saint and the ability to let things slide as well as knowing when to argue and when to give in. It is a difficult disease to deal with, no doubt about that. It is certainly no fairy tale.

I wish I could say that my husband and I are like the bears in the third story where everything seems wonderful. My husband is not the best caregiver, but he also has Alzheimer's Disease now, so he is not capable of being the best. His disease also makes me a caregiver and, with FTD, I am not even close to being the best caregiver. The one thing we always do though, is end each day with a huge hug and a couple kisses thrown in. It really helps to erase the conflicts that occur each day.

Exhaustion

Have you ever heard anyone say "I am so tired of being tired!"? When I have heard that said, it is usually from someone who is fighting an illness or chronic disease. I'm sure you already know where I am headed. Yes, FTD is one of those diseases that indeed makes you tired.

I said tired, I really should say exhausted. Someone said "Why are you so tired, you don't do anything?"  Some days, getting out of bed is the only thing I can do. I have actually experienced days when I was literally too tired to eat, much less to fix a meal. There are days I must force myself to even get out of bed. Fortunately, at this point, those days are still in the minority for me. For others with FTD, it can be every day.

It doesn't matter what source of information you are using to learn about FTD, you will read the words "fatigue," "loss of energy," "extreme tiredness," and others that mean the same thing. Obviously, those with FTD will experience tiredness and exhaustion just like those who do not have FTD. If you do too much work or take on too many tasks in a single day, we are going to feel tired or exhausted just as anyone does.

However, there are even more things that you would not think of as being exhausting. Trying to cope with your surroundings is something that is greatly exhausting. If there are too many noises, too many distractions or just being in surroundings different than your usual, it leads to tiredness and then to exhaustion. This is why many of us hate to shop. There are too many people, too much background noise, too many colors or too much commotion going on. To those of us with FTD, there is no such thing as making a simple quick trip to get something. Even visiting friends or family can have the same effect.

FTD'ers do not adjust well to an increased activity level. I used to do hours of housework or yard work in a single day without even thinking about it. Now, if I work even a small portion of that time, I am pretty worthless the rest of the day. The peril of this exhaustion is that exhaustion often brings irritability. I will admit to not being the most pleasant person to be around when I am exhausted... not even close.

It is not only physical fatigue that we face. Of course, if we are having trouble sleeping, we are also going to be more exhausted, tired and irritable. This is true for the FTD'er, the caregivers and anyone else with sleep issues. If sleep issues are affecting the one with FTD, it should definitely be discussed with their doctor. There are medications and other strategies that can help.

Just getting through a day for someone with FTD can be exhausting. Think about how it might feel if you have to struggle to think of words that you want to say or struggle to getting the word out correctly when you do. The stress of trying to remember things and of trying to remember how to do things that used to be second nature is exhausting. Every activity, every thought, every conversation can all be exhausting. The brain needs energy. If the brain is struggling, it becomes exhausted just as your body does when you do too much. I have read that the brain of someone with FTD, or any other dementia, needs more rest than the body does. A damaged brain must work harder than a brain still totally functioning, therefore, more energy is required. This means more sleep is needed. If someone with FTD is sleeping or staying in bed for 12 hours, it is because their brain needs those hours of rest.

I have written many times about symptoms of FTD, including abnormal interest in sex, no filter between brain and mouth and inappropriate actions (disrobing outdoors, peeing outdoors, hugging strangers...). If we think about it,quite often, those of us with FTD realize that we act inappropriately, such as laughing at funerals, being brutally honest with someone, revealing private information. I cannot begin to tell you the number of times I will say something insulting to someone because that is the thought that pops up into my head. Don't tell me a secret and expect me not to tell someone about it. I realize I do these things so I am constantly reminding myself to not do them. For me it is akin to someone placing a kitten on my lap and telling me to not dare to touch it. The entire time, I would be fighting my instincts to pick it up, pet it, talk to it and cuddle it. I adore kittens and it would be a tough battle to obey those instructions. The new instincts FTD has brought me has often led me to say something, totally out of the blue, then wonder why in the world I said it. 

When I am with others, I must constantly remind myself to keep my thoughts to myself, not to touch people or do anything else inappropriate. It is exhausting to fight your instincts, even when those instincts are not the same as they were pre-FTD. If I go into a waiting room, a restaurant or someone's home, I must be thinking of where I would feel most comfortable. I search for a quiet corner where no one can walk up to me from behind. Then I sit and keep telling myself "It's okay, you can do this."  "Uh-oh, where is the bathroom?"  These thing that those without FTD never need to think about can be exhausting.

If you are a caregiver and you notice that your loved one is more irritable, uncooperative or doesn't want to do anything, it may be time to stop and think. Did they do something out of the ordinary pace and circumstances of their normal day? You may want to keep a calendar or make notes of activity levels and behavior levels. You might find a pattern and be able to adjust their schedule accordingly.

I can be exhausted for an entire day after needing to do something out of the comfort of home or if anything out of the ordinary occurs. If it is something way out of line with my ordinary routine, the fatigue can last for days, a week or more. I will give you an example. 

My sister got married last weekend. I really enjoyed the preparations for it. I was able to recapture some of my creative juices and help design things and shop online for necessary items. (I think I may have mentioned this if a blog or two.) I even made the wedding cake. I simplified it and it was not even close to being as intricate as any of the cakes I made before, but I did it. I laid out a schedule of what to do when and in what order. I had someone here to help when I needed it. My sister and brother in law arranged things to make the wedding day easier for me. He picked me up an hour or so before anyone would arrive so that I could settle in and he arranged for someone to drive me home before the loud music started. My sister had arranged the head table in such a way that I was protected. I have said before how aware and understanding she is of my FTD. With their advance planning, I had a blast. I think it was the most fun I have ever had at a wedding.

I did not get tired that day. Sometimes, I believe it is pure adrenaline that allows me to have a busy or active day when it is a fun event. I pay for it afterward though. It has been a week since the wedding. I am still exhausted, sleeping longer than normal, having no interest in doing things and no energy to do them anyway. I expect to be the same for another week or so. Believe me, it was worth it. I am also fortunate that I can recognize this in myself. Many people with FTD are not able to recognize what is affecting them or why.

I must not ignore the caregivers when talking about exhaustion. Not only are they trying to keep the home and family running, they are caring for the one with FTD. That in itself is an exhausting challenge. That is why I am often reminding caregivers of the need for respite care for themselves, even if only for an occasional afternoon or evening. It is so easy to say that. The reality is much more difficult. It can be very difficult to find family or friends who are willing to pitch in and help. It's not like when a family member has surgery or a brief illness. Family and friends often come through at times like that by bringing a meal, offering to pick things up at the store or stop by with a thoughtful gift. With FTD or any other long illness, they either forget or decide that it is your new normal and you can deal with it on your own. This baffles me because, to me, it is common sense that when someone has a lengthy illness or chronic disease, the need is even stronger than for a brief recovery period. 

My advice for caregivers is to beg if necessary to get friends or family to give you a break. If they won't come and fill in for you, it is still appropriate to ask them to bring a meal once in a while or offer to run errands. If no one comes through or even if they do, call your local Department of Aging, Senior Center, adult day care programs (If you are lucky enough to have any in your area.) or even nursing homes who offer a short respite care (If you are fortunate enough to be able to afford it.)  I get very frustrated when those who are considered experts make it all sound so easy. Not everyone has family nearby or close enough friends who are willing to help out. Not everyone can afford paid respite care or day care. Don't let that stop you though, it doesn't cost anything to ask for help. You may have to get past the feeling that you should be able to do it all yourself or that you feel like you are begging. If you have those feeling, it is worth a little discomfort to make those calls for help. We all need help sometimes. I will remind you that the Association for Frontotemporal Degeneration does offer limited funds for respite care.

Something that I find interesting... It is often the people who have always been the first in line to help others who have difficulty requesting help for themselves. Please remember that you must take care of yourself and that it is perfectly okay to ask for help to accomplish this. One more thing, please do not ignore your own health. Make sure you get yourself to the doctor for regular check ups, not just your loved one. Being a caregiver is not only exhausting, it is an added risk to your health. 

So, yes, I am tired of being tired. I am, though, very lucky that no one expects me to be able to do even close to what I used to do. Well, maybe with the exception that I should still be able to cook dinner every night... or pay the bills... or be the full-time caregiver for my husband. Yikes, no wonder I am exhausted sometimes!

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Everyone Needs Encouragement

I don't know if it is the paranoia FTD has given me or if people really are becoming so much more "me" oriented in their lives these days. If this is the new normal, then I am glad that I am no longer considered normal. I can only be what is normal for me and have no desire to conform to the standards of others any more. Too many people don't seem to realize that everyone needs to be congratulationed and encouraged.

I was recently invited to participate on a task force for the state of Pennsylvania. I felt, and still feel, honored to be able to do so. It involves the state's role in responding to the issues involved with dementia. I had previously volunteered to be considered for the role, so it is not like they scoured the state and came up with me. I say that because I don't feel like this opportunity makes me any better than anyone else dealing with dementia. There are many more of us in the state who would also jump at the opportunity. I know it will be a struggle for my brain to do this but I am doing it for the same reason I advocate for those with FTD and the Association for Frontotemporal Degeneration. The more we are out there spreading the word and the more people hear about FTD, the more likely it will get attention from the people who can help.

I am honored to be able to speak on behalf of those affected by FTD, but it is not something for which I would look for kudos. I did not start telling everyone in town about this opportunity. I told the support groups that I visit, the AFTD, and just two family members in addition to my husband and daughter. Almost all of these people seemed just as happy about it as I did and provided a lot of encouragement. My happiness comes from the fact that the state is taking into consideration, FTD and other dementias in addition to Alzheimer's.

After a week or so, I mentioned it to four other people who I thought of as friends. One was even a friend from church, one was a family member and they all know I have FTD. The first one said, "I hope you are able do it." The next, "Good luck with THAT!" The next said nothing at all, just started talking about how she had served on a local board for 10 years. The final one said, "Interesting" with no enthusiasm at all, then changed the subject. Yeah, I am done telling people about it. I will just do it and hope and pray that some good comes from it.

This brings me right back to the subject of toxic friends and family that I wrote about a couple weeks ago. All four of them are now on my list of those to avoid. I talk about toxicity again because it just confounds me. I do not understand how other people care so little or do not realize how much their reaction affects the other person. They cannot realize how much people need those words of encouragement. Can they possibly not care about what goes on in someone else's life?

I have always been just the opposite. I always got excited for people who accomplish or achieve something. This is for everyone, even someone I talk to in line at a store. I appreciate people, recognize their worth and like to take the time and opportunity to encourage them. I know there are others who do not. There are always a few who are jealous of anyone's achievement or really just don't care about anything or anyone. I always thought this was a tiny minority but now I wonder just how rampant it is. Even with FTD, I still recognize that need in others. Even while battling the loss of sympathy and empathy and fighting off the total apathy, I care. Since FTD, I may not be enthused about what someone is telling me, but I still recognize their pride and remember to smile and encourage them, even if it is bit more forced now. Yes, I do realize that in the future I may no longer be able to still do this.

Isn't what I am talking about just common decency? Even if you do not care at all about what someone is telling you about, is it no longer the right thing to do to encourage people? Isn't it the same principle as when someone is wearing the most ugly shirt you have ever seen and they ask you if you like it? We are supposed to learn early in life that you don't say that it is ugly, you find something good about it, like "I love the colors." 

It is well know that those of us with FTD have no filter between brain and mouth. If we think it, we are likely to just go ahead and say it. Even with that loss of filter, I still find myself being nicer than many people without any brain disease are. I do still say embarrassing things from time to time, but I don't believe I say things that are downright nasty or inconsiderate.

My loss of filter is more likely to be something like, "You've been here long enough, I want to take a nap." or the favorite one I did in a store, "What the f**k are all these people doing here?" If I do say something inappropriate that insults someone and I am told about it or recognize it myself, I apologize. Even if I did think it and meant it, I still apologize because I realize they may have been hurt by what I said.

My psychologist, who totally understands FTD, insists that I don't have total apathy, at least not yet. She says this because I can realize that I have said something inappropriate and apologize afterward. My senses of empathy and sympathy are definitely significantly blunted and sometimes non existent. It seems to be the same with the apathy. It is blunted rather than nonexistent 

If I can battle through with the lack of these emotions, as well as the downright meanness that often comes with FTD, I really cannot understand why there are so many people who were right there to pop my balloon when I talked about this opportunity that was so exciting to me. 

That is when I must come back to the toxic people I wrote about before. I must learn to stop involving myself with this kind of people. Family members are no exception. Of the four I mentioned, one was a family member, one is someone from my church whom I considered a friend and the other two were professionals whom I have been dealing with for fifteen years and have become quite friendly with. We have even socialized outside of the professional relationship. There is nothing that says that after being insulted or hurt that you have to stand there and beg them to do it again.

The first time I saw a psychologist was 25 years ago, following a tragic event. She was a former nun who was married to a former priest. She was the most prim and proper lady I think I have ever known, at least in the past 40 years. She also gave me the best advice ever. She sat there, back straight, hands in her lap looking lovely, and said "Cindy, do you ever get tired of being a tit to the whole world."  In other words, knock off worrying about everyone else before you worry about yourself. There is no way I will ever forget her advice because the words were shocking, coming this lovely lady. Sometimes, I have to remind myself of her words and remember to put myself first. I must learn to not provide this kind of people the opportunity to do it over and over. 

A caregiver needs encouragement to keep going. Even if it is someone who is not offering to assist or give you a break, the fact that they recognize all that you are doing can possibly boost your spirits just enough to go on for another day. Of course the opposite is true as well. If someone is criticizing what you are doing, that is someone you don't need around you or listen to. 

Someone with FTD needs encouragement as well. If we manage to accomplish something, a word of acknowledgement or celebration is appreciated. It encourages us to keep trying. If someone notices that we are really trying even if we don't succeed,  acknowledging how hard we are trying can allow us to continue. If we get upset or depressed over things that we can no longer do, reminding us of what we can do just might improve our mindset for a while.

Like most things, it is just common sense (and common decency). This is why the term "care partners" came about. We are a team and if we don't acknowledge and encourage what the other is doing, we are no longer a team.

Experiencing Grief

I experienced the loss of two of my dearest family members within the last three months. After my uncle's death, my aunt could no longer live alone so she moved into a nursing home until she died in April. I believe I mourned for her the entire time she was in the home, even though I was able to talk to her on the phone. 

Those of us with FTD are supposed to not care because of the apathy that befalls us, as well as the loss of empathy and sympathy for others. Those may be true facts, but it hasn't been protecting me from the feelings of grief. I must admit that I do not care if anyone else is feeling grief and sadness, but I do feel it in myself.

I decided to do some research on the subject to find out if the reason I can not let go of the grief is possibly related to my FTD. There just is not much information about grief in those with FTD. There is a huge amount of information about grief in caregivers, but not for FTD'ers themselves.

The few articles I found on the subject tended to agree with each other. Someone with FTD suffers a lot of losses along the course of the disease. I will start with that. Two of the writers mention "Little Deaths" that FTD'ers suffer. We may lose a job that we enjoyed and had been doing for years. This may also lead to financial issues which worsen that loss. This is truly a loss for someone with FTD and something that is mourned. The other big one is losing the right to drive. This can make an FTD'er to mourn the loss of the independence they had when they could go where they wanted, when they wanted. There are many others including no longer being able to do the activities and hobbies they did before, losing the ability to read and write or even think of the words they are searching for and, a big one here, the loss of memories.

Grieving, whether from the death of a loved one, any of the events I mentioned or anything else that they view as a loss can trigger grief. They may not even realize exactly what is making them feel that way. They may become restless, irritable, display an overwhelming feeling of sadness or just seem lost.

Caregivers also feel these losses their loved one is experiencing as well as their own grief over the overwhelming task of being a caregiver, financial issues, having to do everything with no help or the loss of freedom and time for themselves. The difference is that caregivers and anyone else without dementia can understand the reality of the loss. If the grief is caused by a death, the caregiver is capable of changing the feelings of grief into memories and have the ability to understand what those feelings are connected to.

Those of us with FTD, or any other dementia, often can no longer be able to understand why they have the weight of this enormous sadness, anger or a general feeling of something being wrong. Unfortunately, even while dealing with their own grief, the caregiver needs to find even more patience within themselves to comfort their loved one.

In dealing with the loss of a person, the person with dementia should be told right away. Otherwise, they will sense that something is wrong just from being around those who already know. When telling them that someone has died, use that word. They may not understand "gone to Heaven/a better place," "left us," or even "passed away."  It may help to be more attentive to the FTD'er, including more hugs or kisses. When you are discussing the person who has died, be sure to use the past tense and reminisce with them if they want to do that. Try to tell them when they are relaxed and at a time of day when they are more aware of things.

One of the issues common among the articles I found was that not telling the person with dementia is not going to be effective. They are going to sense something is wrong and become confused. If they are told a story about why the person is not around, they will recognize that what you told them does not match their reality. The other issue they agreed on was, if they are at all able, to allow the person with dementia to attend the funeral. It is believed that by being included, the reality of the situation is easier for them to understand. If they are able to attend, make sure someone is always with them to answer questions, reassure them and remove them if they become upset.

As I said, those with dementia may be grieving over things other than a person's death. These are the "Little Deaths" I mentioned before. Included are things such as loss of a job, any ability they previously had, loss of driving privileges and the independence that comes with it and the loss of memories. These little deaths can affect someone with FTD very similarly to the death of a loved one.

The FTD'er may not even realize that it is one of these things that is causing them to feel more angry, restless, aggressive or withdrawn. It could also lead to a worsening of symptoms. If these types of symptoms continues, you may have to call or schedule an appointment with their doctor. There are medications available that can help relieve some of these negative symptoms. 

Even more important than medication, though, is understanding, patience and openly recognizing what is happening. The caregiver can say something like, "You seem restless/angry/sad today," "Is there something making you feel that way? Is there anything we can do to help you feel better" or "Would you like to talk about it?"

Caregivers can experience many of the same senses of loss that can lead to reacting in many of the same ways, such as anger, sadness or resentment. It is important to realize why you are feeling this way and determine if there is any way to improve those things.

I will say, again as I have in previous blogs, how important respite care can be for the caregiver. I do realize that it is so easy to talk about but not always so easy to arrange. Don't be afraid to call a family member and say "I need you to come over for the day on Saturday to stay with mom because I am not able to be here." Don't say "Could you come over some time so I can have a break. Be specific. Contact any agencies in your area to see if they offer respite services. Plus, remember that the AFTD offers respite grants to enable the caregivers to have a time of respite. 

Researching this subject was good for me. Yes, I am still grieving and now realize that I will be for sometime. I also believe the sad feelings will abate eventually. Just yesterday, something exciting happened for me and my first thought was that I needed to call and tell them. Oops, can't do that anymore. Later, out of the blue, my sister said to me "You know who else would be very proud of you? Uncle xxxx and Aunt xxxx." I knew she was right and it made me feel close to them for just a few minutes. Of course, I am still grieving over not being able to follow recipes and, most definitely, not being able to drive and all those other little deaths that don't seem so little. I also know that, for now, I can cope with it all.

Could You Be the Next Andy Warhol?

One of the worst things about FTD, to me, has been the loss of my artistic abilities. It is a big part of the reason for why I tend to feel useless and bored.

I mentioned a couple weeks ago that my sister is getting married soon (3 weeks from today) and I have been helping as much as I can. Before FTD, I was an artist. I did a lot of painting, mostly folk art, and was an award-winning ceramist. I don't say this to brag, just to explain that I used to have artistic abilities. After FTD, all that seemed to disappear. I find it quite interesting because many with FTD have actually developed more artistic abilities after being diagnosed with FTD.

The night before leaving for the AFTD Conference, I could not sleep because I knew I needed to get up at 4 a.m. Around one or two in the morning, I had an idea of a cake to make. I did not mention, but I also used to design and make cakes. I guess that is a form of art as well. The theme of the wedding grew from that cake design.

I also mentioned that she was allowing me to help with a lot of things. Doing some artistic work, like designing the invitations, making favors to fit the theme and helping with the decorations, has been such a good thing for me. My sister keeps telling me that I come up with ideas that are flashes of brilliance. I argue that, no, merely occasional flashes of a flickering candle. Either way, finding that some of my artistic instincts are still in my brain has been beyond satisfying. No, it's not the kind of art I used to do, but it has released some of the energy I always found in creating artwork.

Being allowed to help with this wedding has helped me feel great the past few weeks. Now, it happens that I also had another anti-depressant added to my medications so that probably helped as well. I don't care which it is, though I suspect a combination of the two, I am loving it. 

I am pretty much done with the things I have been able to do. The only thing left is to make the cake that I designed that night. This is pretty darned scary for me. Even when I was making cakes semi-professionally, I avoided wedding cakes because they are so important to the bride that it made me too nervous. I have only done four in my entire life. In this case, I know my sister and brother-in-law will love it no matter what, because I am making  it. At least I know it will taste good even though it might not meet my pre-FTD standards!

I am not the only person with FTD who have found something to keep themselves busy and to make them feel that they can still contribute. One of my FTD friends found a way to continue gardening. Another has started doing woodwork. A handful of them have found artistic talents that they did not have before and have been producing beautiful paintings. Yet another one knits the most wonderful potholders and her niece sells them online and donates the proceeds to the AFTD. 

I encourage everyone with FTD to try to find something creative to do. Even adult coloring books can provide the satisfaction of creating something. If you had musical abilities before FTD, try them again, perhaps with simpler tunes. You can also just sing along to the music you love most. If you used to dabble in any form of art, try to do it again. Like with music, it doesn't have to be something complicated. If you can still follow a recipe, bake some cookies. 

If you have grandchildren, tell them stories about their family or stories you can remember. If you don't get to spend much time with them, record these things for them. These recordings will probably be their most cherished possessions as they get older. I bought a recordable book, Curious George, which was my favorite as a child. I do not have any grandchildren yet, but when I realized that I may not live long enough to meet future grandchildren, I became extremely sad. By recording this book that they could hear Grandma reading to them, it made me feel much better. My daughter has still not taken in home because she did not want to consider me not being here. It is in her old bedroom here for when she is ready.

It is not just FTD'ers who can benefit from seeking the satisfaction of creating something. It could help caregivers as well, something to occupy their minds for a few hours. Perhaps it could remind them that there is more inside them than just the ability to care for someone with FTD. They might have to arrange for someone else to sit with their FTD'er for a few hours so they can get out, even if you have to beg everyone you know in order to find someone willing. Take a class or go to one of the Wine and Paint parties. I sure wish I could go to one of those, they look like a lot of fun. 

Obviously, not everyone has artistic talents, but like my friend who gardens, it seems most everyone has a talent, hidden or otherwise. It can be something like building with Lego's, learning to spin a Fidget Spinner, coloring in an adult coloring book or even playing with Play Dough. You don't have to perfect or even stay inside the lines. No one will care. No one will judge you if you are doing something that children can do. Try to find joy in the colors, in the music. Stop and remember Andy Warhol. For goodness sakes, he painted a soup can and became a famous artist. Maybe we should start a business selling art by FTD'ers. We could created modern art with just splashes and slashes of color. 

After the wedding, I think I just might take my own advice. I have thought about doing some abstract painting. Perhaps now I will find the courage to do it!

Like my sister keeps telling me, it doesn't have to be perfect. Actually, she says "Barbie perfect" because that was what I told her when she started planning her wedding. She tends to be a perfectionist so I kept telling her it just has to be ordinary person perfect.

Recognizing When You Need Help

There are no  medications that help FTD nor any that prevent it. What we can do, however, is to use medications that can treat the symptoms. One of the common symptoms of FTD is depression. I often say, and probably have in previous posts, "How can you have FTD and not be depressed?" Just knowing you have a life-ending disease is enough on its own. All of the many frustrations and irritants of the disease can lead to depression as well.

Personally, I have been on an anti-depressant for quite a few years now, even before my diagnosis. Was the need for the medication related to the undiagnosed FTD? Truly, there is no way of knowing. At the time of diagnosis, I was taking Wellbutrin and it seemed to be working quite well for me with no real side effects. Up until recently, it was enough and kept my depression in control.

Six weeks ago, I went to see my doctor for a routine check up. When she walked in the room, I looked at her and said "I need help!" She is a great doctor and a wonderful person. She is the one who insisted we keep seeking a proper diagnosis even after several doctors had said it was depression or that the symptoms of FTD were all in my head. Before that she saw me through a year of dealing with Hodgkin's Lymphoma. In other words, she knows me very well. 

Hearing my plea for help, she immediately sat down and, so very kindly, asked what kind of help she could give me. I knew I needed another or a stronger anti-depressant. I had recognized the symptoms of not wanting to do anything, yelling all the time and being just plain nasty to just about everyone. I would fly off the handle and then spend the rest of the day feeling horrible about it. So, I had asked others with FTD what depression medications they were taking and I read several articles that recommended the type of anti-depressants was most effective and the least dangerous for those of us with FTD.

We decided to add Zoloft and started out with a very low dose for a week and then doubled it the following week. Within two weeks, I was feeling so much better, like my old self. Well, my old self with FTD. I have not been yelling much at all and things are much more peaceful in our household. I have also found just enough more energy to actually accomplish some things. Certainly not to the point of pre-FTD, but I can do one or two things a day. I can also have a conversation with my husband without flying off the handle at him.

Today, was my six-week check-up to see how the meds were working for me. The doctor walked into the room, looked at me and said "My Cindy is back!!!" I couldn't say it any better myself. She told me that as soon as she walked in the room, I smiled my great smile and she knew the meds had worked. She went over all the things I should watch for to know if we needed to increase the dosage and any possible side effects. She did not have another patient waiting so she took some time to chat and discuss how everything is going.

The past few weeks have been extremely stressful. There were two deaths in my family which was bad enough in itself. It was an aunt and uncle whom I was extremely close to and I miss them terribly. That part, I could deal with. It is what came next that was really hard to accept. It led into an apparent family feud. It seemed like I was being left out of the loop and not receiving any information as to the status of everything. I worked around that though by calling the nursing home, the estate attorney and others. It was like pulling teeth sometimes to get information and I was very stressed and, I must admit, angry. But, I was able to talk to my aunt almost every day on the phone and, even on days she no longer had the strength to talk, I was able to tell her I loved her. I guess I should explain that they lived over 100 miles from me. Since I can no longer drive, it was horrible to not be able to get in the car and drive up there.

Now that they have both passed (my uncle died in February, then my Aunt died in mid-April) and both memorial services have been held, it is obvious that there are fractures within the remaining family that might never heal. It is such a shame that these things happen in families, especially at the time of deaths when we all need to lean on each other. I suspect part of the issue is that I was named in my aunt's will and none of the other nieces and nephews were. I did not ask her to put me in her will. In fact, she used to joke that I was not in her will so I could quit being nice to her.

Okay, I have gone into way more personal information that I probably should have. The reason I am telling you all this personal stuff, is to point out that if I had not gone to my doctor and admitted that I needed some help, I would have had an extremely difficult time surviving the past few weeks. I had no idea that it was all going to happen the way it did, but if I had not gone into my doctor and admitted to her, and to myself, that I needed help, it could have taken a huge toll on me. In fact, after talking about all this stress with my doctor, she said she was certain that, in the shape I was six weeks ago, I would not have made it through.

The point I am trying to make is that you, both those with FTD and the caregivers, need to recognize and admit when you need help. There is absolutely nothing wrong with admitting that you are suffering from depression, especially knowing that there are medications that can help.

In addition to the medication side of depression, I do still see my psychologist who specializes in dementia. Between the medications and having someone to listen to me and suggest ways of coping, I am doing pretty darned well. Recognizing that you need help and support is a good thing. Doing something about it is even better.

Again, the feelings of depression, frustration and irritability affect both those with FTD and the caregivers. We both need to "be the best we can be" if we are to face this disease together. I strongly recommend that if you aren't feeling like yourself or realize that you are irritable or depressed, please see your doctor and ask for help. If you don't and you wait until it is a crisis situation, it can be much harder, or even impossible, to fix.

Common Sense Ideas

I fell outside today. I slipped in some mud and my legs were not strong enough to recover. Unfortunately, I laid in the mud for about 15 minutes while I yelled for my husband and banged on the window. He never heard me. I finally got turned face down and crawled about 15 feet through more mud and muck. Once I was on the deck, I was able to get upright and walk into the house. 

It is not unusual for me to fall and, other than some complaining muscles and joints, I am fine. The reason I am mentioning this is that now that Spring is finally here, I have a bit of common sense to pass on to the caregivers.

When your loved one is outside and trying to do something other than just sit and enjoy the sunshine and warmth, try to make sure someone is close by. Obviously, you don't need to be right next to them, but within hearing distance. If you cannot manage this, try hanging a whistle around their neck so that they can make a loud enough racket to get someone's attention. 

Many years ago, when my husband was racing cars and we were working as safety workers at the professional races, we had to wear whistles.  I was concerned about the lanyard strangling me if it caught on something.  I took knitting markers that are used to mark your spot when you are knitting. They were open circle, the perfect size and would pull apart without much effort. I relay this story so that you can do something similar if you choose to use a whistle on a lanyard. They could also keep it in their pocket. 

The other bit of common sense, check on them occasionally. Make sure they have not fallen or become injured, started to develop a sunburn or wandered off. If you are inside the house, perhaps leave a window open to hear a distress call. I can only vouch for myself, but when I am out sitting on the deck, I often see things that need to be done. Maybe it is something as simple as a piece of paper flying around in the yard or a weed that needs to be pulled. I guarantee that this little thing will bug me long enough that I will get up and do it, even when I have promised to just sit in my chair.

Oh, and don't forget the sunscreen. Many of you have probably read this and said "Duh" but I must admit it is something I never thought of before. Not in my caregiving role nor now with me having FTD. 

On a happy note... My sister is getting married in a month! She has been allowing me to do some of the necessary things for her so that I can actually feel a part of the planning and preparation. She has had me searching for some things on the internet and even allowed me to help design and print the invitations. It is wonderful to feel useful and needed for a change! It is actually difficult to explain just how much I have loved doing these things. Could she have done them herself? Probably, but she knew I wanted to be a part of what was going on.

Not being able to do the things that I (and others with FTD) used to do is a constant frustration, especially when no one else is picking up the slack and doing them. This often results in huge arguments because some of the things I can no longer do seem like simple tasks. It is easy for the caregiver to become frustrated because it isn't getting done. The frustration is understandable because they already have so much more responsibility dumped on them and they literally do not have the time nor energy to do it all. It is important for both the person with FTD and the caregiver to not let things like this fester until it leads to a blow up by one or the other.

It is extremely important to discuss things like this, not when either of you is upset, to see if you can find things that the one with FTD can actually still do.

For instance, a few times, while unloading the dishwasher, I cut my finger on a knife. I became afraid to do it after that, so I stopped. It was one more thing that my husband had to start doing. Now, I unload the bulk of the dishwasher, but leave the silverware bins for him to empty. Once he has unloaded the sharp things, I can finish it. Problem solved... without screaming and resentment.

For many of us with FTD, we need to feel like we can still contribute and accomplish things. It may be a simple thing and would not take much time for the caregiver to do, but it can make a world of difference for the one with FTD. I love being able to unload the dishwasher again as well as a few more little tasks around the house. I need things like that to make me feel good about myself and those opportunities do not happen much anymore.

I know that all the things I have mentioned this week are things that most of you have thought of on your own or picked up along your journey with FTD. Sometimes, though, it is the simple bits of common sense that we don't see. I never thought that I could not get my husband's attention if I fell. I also don't stop and think, before getting up and doing some little thing in the yard, that I don't have my cane with me right then. That definitely contributed to my fall today. It is just common sense and my husband has bugged me about it many times. Sometimes a little reminding, even if it becomes pestering, can be a good thing, even if I get angry when he does it.

It is extremely difficult for the person with FTD to realize that the pestering is for our own good. It is also necessary for both to recognize when it is time to back off. Sometimes it would make more sense to just carry the cane outside and say "You forgot this."

Something interesting happened between writing the last paragraph and this one. My sister and her fiance stopped by for a short visit. She took one look at me and said, "You fell again, didn't you?" There is just no hiding some things from a sister.

Time to Take Care of Myself

How often do we say "Where did the time go?" Well, time slapped me in the face today for a couple reasons. 

First of all was when I realized that here it was Sunday and I had not had a chance to write a blog entry yet this week. No wonder I am feeling totally exhausted to the point I am literally dozing off at my desk, if I have indeed been that busy! To add to that, my husband reminded me to print a calendar page for the month of May for him and I hadn't even realized May was only two days away. 

The other reason is that time is the enemy of FTD. The faster the time goes by, the sooner the symptoms worsen or new ones appear. I have written and talked so often about how valuable my writing is to me and how thankful I am that I can still do it.  All my life I have said that my fingers were directly wired to my brain and that is why I typed so fast, enter data just as fast and was an artist. I didn't have to consciously think about it, the fingers just flew. 

This past week it finally hit me that I have been struggling more and more with my typing. Even though I can usually still think the words, they are not what shows up on the screen. I now must proofread things multiple times. It used to be that I needed to proof everything two or three times. Now it is more like six or seven. I am stubborn though, so I will keep at it until it gets bad enough that when I proofread, I can no longer understand what words I meant to type versus what is there in front of me. I also have been accidentally posting things on the wrong page. I have posted things intended for our private support group on another support group's page and even on my public page. I could have become very embarrassing and uncomfortable.

Along with that, I am finding that when I am reading I will totally misread a word that changes the entire meaning of the sentence or paragraph. After a few seconds, I am saying "Huh? That doesn't make sense..." Then when I reread it a couple times, I realize that I had mistaken a word for another not even close to what it really is. 

I don't think I like time speeding by. I know I don't like time bringing me new and worse symptoms of my FTD. I will never give up though, I will keep plugging through it as long as I am able. If it gets to the point that what I write makes no sense, I hope one of you will let me know!

Back to the first example of time moving too fast. This was a busy week and one filled with way too much trauma and drama. The first thing I want to talk about is toxic friends. I had been avoiding spending time with one of my friends who seemed to just exhaust me any time I was dealing with her... on the phone or in person. Finally, this week I allowed her to make me feel guilty enough that I agreed to go to lunch. This friend insists she totally understands FTD and how it affects me. She also firmly believes she knows what it best for me and what I must do. 

When struggling through a disease, certainly including FTD, that is not what you need. It is nearly impossible for people to understand what it is to live with FTD. Some caregivers can not even understand, though they surely do try. It is total nonsense that even a friend can insist on life changes that I need to make. When we went to lunch this week, I mentioned an article I had sent her on something that could possibly be causing the dizziness symptoms she has been dealing with. I asked her if she saw it and she said, "Yeah, I saw it then promptly forgot about it." I took that to mean that she had seen it but forgot to go back and read it when she had time. Logical interpretation. Unfortunately, it was also wrong. What she meant was that she saw it and was not about to read it because she already knew it was total nonsense. When she told me she had forgotten it, I started giving her a couple bullet points from it when she literally screamed "I DON'T WANT TO TALK ABOUT IT!" The other two ladies with us showed utter horror on their faces. Even a waitress who was passing by later asked me what that was all about.

First of all, it's not like I had been hounding her about this article. It was the first time I mentioned it. Secondly, I was just suggesting she read it and perhaps ask her doctor about it. When you match this up to the major life changes she keeps telling me I need to make, it surely seems like she overreacted.  Many people, family and other friends, have been telling me for a couple years that she is toxic to me. I now believe them. Right before this blow up, she had been insisting that I need to leave my husband (who has Alzheimer's and I am his caregiver) and move three states away to be with my daughter. Worst of all, I could not leave the restaurant since she was the one who had driven me and I had to rely on her to take me home.

At least I understand now what everyone meant about her being a toxic friend. That is the last thing that someone with FTD needs. We need to be surrounded by support, love and positive energy. I am sure I am not the only one to not recognize toxic friends (and family) and the importance for us to avoid spending time or even listening to them.

Yes, it is also family. I think I have posted before how my favorite uncle. whom I was extremely close to, passed away suddenly on February 11. Then, my aunt, his wife and my best friend passed away just a short two months later, on April 9. She had cancer and my uncle was her full-time caregiver and it was too much for him. It is a good illustration of how difficult the life of a caregiver can be.

Yesterday was Harriet's memorial service. We had waited a couple weeks so that everyone who wanted to be there could be. Part of it was even in consideration of me so that I could still attend the AFTD Conference in Chicago. I have to say it was a beautiful service and I got to meet many of her friends whom she had always talked about and they were just as happy to meet me. It warmed my heart as they told me that they feel like they already knew me because she talked about me so often.

That contrasted with a sad part of the day when I witnessed how family members can become vultures and latch onto anything with financial value, everyone else be damned. Three family members, myself included, were invited to go to their house to see if there were items we would like to keep. As I gathered little things of extreme sentimental value, they rushed from room to room collecting the things of monetary value. It truly got ugly when we both wanted one particular item. I offered to compromise but she said she was not interested in compromising. Fortunately, the attorney knew that Harriet had already told them that she wanted me to have it, so I feel certain the attorney/executor will give it to me. It continued to be awkward and I finally decided I needed to get out of the negative atmosphere.  A side lesson was to be sure who was listening to a conversation before you lie about it!

So, I learned that family members can be just as toxic as anyone else, possibly more so because you don't expect it from family. It is possible to survive when dealing with those toxic people. In the case of my friend, I finally learned that I just can't allow her in my life at all anymore. The enjoyment of going out to lunch occasionally is certainly not worth going home with toxic baggage in tow. I also learned that it is necessary to avoid all toxic people, even if they are family.

I was very proud of myself. Funerals are difficult for everyone, but even more so for those of us with FTD. I survived it and I managed to keep the good outweighing the bad by concentrating on my aunt's wonderful friends at the service and by concentrating on sentimental memories at the house, along with getting to know my aunt's sister a bit better. She seems to be a wonderful woman and I will cherish her friendship. It will be a way for the two of us to keep my aunt alive in our hearts.

It is not selfish to put your happiness and well being ahead of others, especially if they are people who are not supportive and loving to you. There are a lot of people out there who are willing to take advantage of someone with a disease, like FTD or any other dementia. People like that actually seem to find enjoyment out of doing so. I was strong this week which proved to me that I can do it. I am not alone, all of us can, and must, look out for ourselves. 

Learning CAN Be Fun

Here it is, already a week has passed since this year's annual AFTD Educational Conference. It was indeed educational and I learned several things I did not already know. I was also reminded of some things that I knew, but had forgotten. The most exciting part was meeting some people I had not previously met, at least not in person.

I was thrilled to meet quite a few "newbies" to the AFTD conferences and took a couple under my wing to ensure they got the most benefit from all that was offered. I wish I could have met more. After getting home, a few people commented online that they were there but did not get to meet very many of us FTD'ers. This year, we did have badges to indicate that we were FTD'ers, which I appreciated greatly. There was nothing, though, to indicate who were first timers. I think this would help enormously at future conferences.

While the pre-conference (Thursday evening) dinner was in the planning stage, the venue insisted on having assigned seating. I was totally opposed, but quickly loved the idea. It mixed up those of us who had been to previous conferences with those who had not and provided an opportunity to get to know some new people.

The opening speaker was Dr. Marsel Mesulam, a leading expert in FDA research. I learned some new things from him. I learned that someone's FTD can be genetic without testing positive for the known genes. There are most likely more genes that cause FTD that are as yet unknown. I was also amazed by a slide of a brain from someone with FTD. In a normal brain, there are no spaces in the cerebral cortex. In an FTD brain, spaces are quite noticeable. I was fascinated with his entire presentation. I only wish he would have spoken slower so that I could absorb more of the information he presented.

All of the speakers whose sessions I attended were excellent and interesting. This year's breakout session for different areas of interest were better than past year's. There were several sessions only for those of us with FTD. There was even a session of improv that turned out to be one of my favorites!

Something I was reminded of, is the role of a Neuro-Ophthalmologist. I have written many times about the vision issues that often come from FTD. I had been to this type of doctor many years ago when we were trying to determine a cause for the extreme headaches I suffered, but never stopped to think about seeking one now. This is now on my list of things to do. There are no neuro-ophthalmologists near my home but it seems like a good idea to consult with one, even if I must travel.

For me, the best part of the conferences is the opportunity to socialize with others with FTD. My daughter, who accompanied me to the conference, commented "Mom, you are a social butterfly!" The reason she said this is that she has not seen me like that in many years. When surrounded by those with FTD and those who are knowledgeable of FTD, it is easy to let my hair down, relax and be myself. No one cared how often I tripped, lost my balance or couldn't find my words. Because I knew that no one would judge me, I was able to relax and be myself for a change.

I was awed by the amount of work and effort that the AFTD must put into making these conferences a success. There must be thousands of tiny details that need to be addressed. I saw nothing that was not well planned in advance. It also amazes me that each conference I attend is better than the last.

Finally, one thing that I am extremely proud of is that, for part of my travel, I did it alone! I took a shuttle flight in a small plane to a larger airport and survived a 5-hour layover. I managed to fend for myself, even found food for myself, without getting lost once. I met up with my daughter at that airport and finished the trip to Chicago with her. For the return trip, I could not coordinate our flights to travel any of it with her, unless I paid several hundred dollars additional. I assured her that I was comfortable doing it alone. She did make sure I got to the proper gate at Chicago's O'Hare airport and that I had a snack and beverage so that I would not wander off. I then flew alone for the rest of the trip.

One thing I have learned about life with FTD: Don't be afraid to ask questions or ask for help. I have no qualms about asking for directions, whether in a busy airport like O'Hare, or in a local department store. I had arranged for wheelchair transport all through my travels. In two instances, the requested assistance was not there, once getting off a flight and once getting onto one. On the arriving flight to O'Hare, there was no one to meet me in the jetway. I managed to navigate the jetway without falling this time. My daughter walked nearly backwards the entire length, warning me of every bump, change of elevation and any obstacle. When I made it to the end, I went to the counter and insisted they call for a wheelchair. They were not happy to be interrupted, but eventually a wheelchair attendant did arrive. On the return flights, at the gate for the shuttle flight, to board, one must navigate a steep and narrow ramp with little side protection and cross the tarmac to the plane. There was supposed to be a wheelchair attendant there as well to take me down in an elevator and across the tarmac. I just kept telling every employee there that I must have a wheelchair. They eventually pulled one of the ground crew inside to wheel me down. As is often said, it is the squeaky wheel that gets oiled. I think I am entitled to feel proud of myself. I would actually not be reluctant to make a trip by myself now.

Another thing that I know I have mentioned before is "TSA Cares". You can find them at www.TSAcares.gov. They take all your travel information and arrange for assistance getting through the TSA checkpoints without standing in line or going through unnecessary screenings. I didn't even need to remove my shoes!

As a side note, when going through security at our tiny little airport (only one gate) our hands were wanded to detect any traces of anything that could possibly indicate exposure to explosives. I tested positive! I then was treated to the only pat down I have every experienced. They were extremely nice about it and it was not uncomfortable. I even thanked them for doing it because it increased my comfort in the screenings. The only thing I could figure that caused the positive test was the purple hair color that I had added to my hair to raise dementia awareness along the way and at the conference. I won't be doing that again!

Again, I congratulate and thank the Association for Frontotemporal Degeneration (www.theaftd.org) for the education conference. Well done, my friends.

Every Day Complications

Before I do anything, I have a huge suggestion to make.  If you have not yet visited the beautifully redone website for the AFTD, please take the time to do so. It is very easy to navigate and to find a lot of great information.  I congratulate them on the beautiful new design.  www.theaftd.org

Speaking of the AFTD, their 2018 Educational Conference is coming up this week. The other day, a friend who also has FTD was amazed that I had made my travel plans by myself. I would never agree that it was amazing. I did manage to coordinate my flights with my daughter's though. We will meet up at the Pittsburgh airport and fly together to Chicago, so it did take some research and planning. What my friend did not realize was that I had spent three days working on the task. Then, I spent three days with a horrid FTD headache. I call it "brain sprain from my brain drain." Not funny, I know, but it amuses me.

That is how it is with everything. Any task takes much more time than it ever did pre-FTD and it takes longer and longer as the disease takes over.  Yesterday is a perfect example. My day went like this: woke up, drank coffee, read paper and opened mail until it was around noon; then I spent about 30 minutes searching the laundry room for something I could not find (still didn't); stripped the sheets from my bed and, after my husband laundered them for me, I remade the bed; I then spent over 2 hours assembling a gift basket for a raffle for a charity I support.  

That is a long sentence to describe all that I did, but let's face it, pre-FTD, after the relaxing part with the coffee, we are talking about about, at the most, an hour of activity. Truly, the 2 hours putting together the gift basket was ridiculous. I already had everything I needed in one place. It was just a matter of putting all the items into a large basket (actually was a tote bag this time) and putting it into a cellophane bag and sticking a bow on it. Except... the loaded tote bag would not fit into the bag the way it usually does, so I had to do it sideways. Every time I tried, all the items would fall over and look a mess. Finally, after multiple attempts, it dawned on me to tape the items in place. Duh! It ended up looking very nice, but come on! Two hours to throw things in the tote bag and stick it in a cellophane bag is ridiculous.

For one thing, the heck with not letting me run with scissors. I should not be allowed to use the packing tape dispenser. I got that tape stuck to me, including around my hand, to my clothes and to the table. What was worse is when I would forget to secure the end of the tape properly and the tape was stuck to itself. That was a true frustration, trying to find the end again and peeling it off so the full width came off together. 

I was totally exhausted by 4:00. I could do nothing more the rest of the day. I could not even fix anything for dinner (we ordered pizza) and was in bed by 7:00. 

For me, this is one of the more frustrating things about FTD. Not only do I have so much trouble doing things but everything takes soooo long to do it. To make it worse, I still have not learned to accept help from others. I have always needed to do everything myself, no matter how many people offered to help. If I had allowed someone else to put my gift basket together, or allowed someone to provide an extra hand, it probably would not have taken as long. I take that back. It would have taken twice as long because I would have been screaming at them for not doing it the exact way I wanted. 

To top it all off, today I am dealing with another FTD headache. Fortunately it is not as bad as they usually are or I would not be able to even look at the lit up computer screen and certainly not be able to put words together coherently. I have accomplished nothing today and have no incentive to do anything at all except to sit in front of the computer. 

Speaking of which, on the same note as the time it took me to make the travel plans, it is the same for writing this blog. Several people have asked me how in the world I can still do it even though I have FTD. For one thing, I am fortunate that FTD hasn't stolen this ability from me yet. Secondly, the actuality is that I spend at least half a day writing an entry and editing it over and over and over. The next step is to run spell check and grammar check, again, over and over.

BUT, in addition to it being only five days until I leave for the conference, my therapist gets back this week. She took three months off to go somewhere warmer. Her husband retired so I guess this is her compromise to not retire totally herself. I am only seeing her once a month now and she did arrange a substitute should I get into a state where I had to see someone so I figured I would be okay. I did go through a couple traumatic events since she has been gone but I just couldn't bring myself to go to a stranger and go through my whole history again. I should be proud of myself that I made it through without seeing her, but I will be so very happy to be able to talk things over with her. It will make me even more relaxed to head to Chicago. This is why I often recommend that someone who has FTD, or their caregivers, might benefit from seeing a therapist. Mine is a psychologist who specializes in dementia. Perfect!

I did say only five days until I leave, didn't I? I'm not up for it today, but tomorrow I must start packing or at least pulling together everything that I need to take. This is from the person who was always up for a last minute trip anywhere, anytime, at the drop of a hat. So, yes, FTD definitely complicates everything.

Executive Functioning, One More Time

As has happened before, I had a blog nearly finished and I guess I did something wrong because it disappeared. I take that as a sign that it wasn't what I was supposed to write about anyway. It was about depression and I will admit the whole thing was very depressing. Depressing enough that it was a waste of energy, time and ink.

In the initial entry, I was writing about one of the earliest FTD symptoms: the lack of apathy. There is no doubt that it is one of the saddest symptom, but to me the most important of the early symptoms is the "loss of executive function." When I tell people that, they usually look at me with a blank stare or ask me what the heck that is.

Executive functions are mental skills that allow you to plan, organize, prioritize, focus, solve problems. Another definition I have seen is that it is an umbrella term for the neurologically based skills involving mental control and self-regulation. My very much simplified explanation is that they are what you need in order to think or do more than one small task at a time.

An example, and one I had to do recently, was to schedule an airplane flight. You have to find out which airport is closest to where you need to be and which airline flies there. You have to check all the schedules to find one that gets you there when you need to be there. (Of course you first have to figure out the time.) You have to check to see who has the best fares. Are there baggage fees? Other fees? Then you have to cross reference all the answers in order to select the proper flight. Whew, that's done. Oh, wait! I have to figure out how to purchase the danged tickets. Then, it's time to select the seat you want. One more, you have to make sure you get a confirmation that the purchase actually went through. That one is truly learned from personal experience. Okay, now I'm done. Except I must make a note to print out my boarding pass before the actual flight.

I am exhausted just from remembering all that to relay the experience and recalling how exhausted I was after doing the task. Now, think about if, in the middle of doing this, someone pops their head into my room and asks me a question about something else? Not only can I not focus enough to understand what they are asking and certainly can't answer the question, but it sets me back several steps or I have to start all over again. I shouldn't even mention that I probably bit their head off for interupting.

Hopefully, now, you have a good understanding of just one of the symptoms that FTD brings with it. Now, think about how you can realize that someone has lost their executive functioning just by looking at them. Odds are pretty good that you cannot tell at all, unless you happen to interrupt them during the process and had your head bitten off.

This is one of the reason that people look at us and say "But you don't look like you have anything wrong with you." Many times, I am able to answer someone's question or even remember something that happened quite a while ago. Again, they look at me and say "See, I told you that you were fine."

On a personal note, my husband who has Alzheimer's Disease, is not very capable of being my caregiver any more. I am now trying my darnedest to be his. The other day, after an exasperating incident, I told him he was looking at me as though he did not believe there was anything wrong with me. He looked at me for a while then said "It doesn't seem like there is anything wrong with you." Fortunately I had nothing in my hands because I'm sure I would have thrown whatever it was. He was one of the first who had noticed, prior to diagnosis, that there was something wrong and had never questioned the diagnosis. He was also right there to help me do whatever I struggled with.

Later, thinking about the incident, I realized that, to him, it probably doesn't seem like there is anything wrong with me anymore. I can do things that he can no longer do. For instance, I have retaken control over our finances. I am paying the bills and all that good stuff. What he doesn't see is that I am scared to death that I am going to mess something up. He doesn't see how I sit at the desk and stare at the checkbook and try to remember how to do it. He can't know how I struggle every time over what year it is. I struggle greatly to make my writing legible. But, again, he does not see this, he only sees that I did it.

That is what happens with all the people who cannot believe there is anything wrong with me or others with FTD. They see what is on the surface. They see that I can do something but they cannot see how difficult and confusing it is. They cannot see how quickly I become exhausted from forcing my brain to do what it struggles to do. 

I am proud of myself that I realized that this is what is happening with my husband. The worse his dementia gets, the less shocking mine is to him. I am also proud of myself that I was able to relate that to what others are seeing or not seeing in me that causes them to deny that I have FTD. It's not just that they never heard of it. After all, I can hand them a brochure that explains FTD. I have no brochure that explains how they have to look a little deeper to see that my brain is dying on the inside even though it may not show.

I will still get upset and angry when people question that I have dementia. I will still have to struggle to not scream at them and tell them how stupid they are. I will still have to struggle to remember to turn and walk away because they do not know any better. I will though, after I have walked away, be able to realize why. Perhaps they saw me do something that they do not know how to do or remember something they have forgotten that makes them doubt. After all, I just did something they can't. FTD is different. I don't totally understand it after all I have learned about it so I do understand that they don't either.

Hopefully, this blog entry will explain the loss of executive functioning a little better to the caregivers, family members and even some who have FTD. Please remember that when you look at someone with FTD who looks exhausted, after doing some "simple" task, truly is exhausted. Please remember, even the next day or two when they have no desire to do anything except nap, that it is quite possible it is because they strained their brain the day before.  I actually use the terms "brain strain" or "brain drain" to explain what I am feeling. It kind of says it all if you listen properly.

Now, if you will read on just a bit more, I would like to just summarize what I was going to write about before the executive functioning jumped into my brain. (Yes, it is the loss of executive functioning that can cause my brain to jump all around and not focus on just one.) With the loss of apathy that we also develop early into the disease, some doubt that we can truly suffer from depression. I can give you a long list of those who do, right off the top of my head. To the doubters, I have two comments... First, can you tell me how someone can possibly have FTD and deal with life with FTD and not have at least some level of depression. The overwhelming frustration alone can trigger it.  Second of all, to those who doubt... Hogwash!  

See, sometimes things happen for a reason. An entire blog about whether we can suffer from depression would have probably angered more people than I ever care to.