Wrong Answers and Fake Cures

This blog is going to be a bit touchy. I try to be as sensitive as possible in my blogs, but sometimes I just need to tell it like it is.

There is not enough research being done on FTD, no doubt about it. The main reason is that there isn't much money being earmarked for it. It is believed that there are so many more cases of Alzheimer's Disease that it is better to focus on that one. Grrrr...  enough said on that one. There is not enough research being done, but there is research being done.

In fact, the FTD Registry is currently seeking for those registered to complete some new surveys. I completed mine yesterday and was impressed by the thoroughness of them. You can contact the FTD Registry at www.ftdregistry.org. If you are registered with them, you can take the surveys. If you are not registered, please consider doing so and then completing the surveys. The more they are able learn from us, the better research that may be enabled. Obviously, I encourage everyone with FTD (or a caregiver if the one with FTD cannot complete the surveys) to respond.

That is the easy part of this blog. The difficult and more sensitive part is the number of questions I am seeing out on the internet (primarily from caregivers or others who have loved ones with FTD) searching for commonalities that they think may have contributed to causing FTD.  There is nothing wrong with curiosity and it is pretty much human nature to want answers.

However, the biggest danger I see in these questions is that many of them seem to be searching for something that those with FTD have done to cause their disease. Approximately one-third of all FTD cases are suspected to be family related and caused by a faulty gene. For the remaining non-genetic cases, I will quote the Alzheimer's Association, "There are no known risk factors for any frontotemporal degenerations except for a family history or a similar disorder." The Alzheimer's Association is not alone in this belief. Searching on the internet, I found similar statements from almost every medical research center.

So, why do I think these questions are a danger? Since the questions often seem to be suspecting that the person with FTD did something to bring on their FTD, I fear that the person asking the questions may not be the best at caring for someone with FTD. I readily admit that FTD has brought me a healthy dose of paranoia but I cannot help but wonder that if these people are able to believe that the person with FTD brought it on themselves, there would be more resentment and less compassion. In other words, "Well, if she brought this on by using illegal drugs, or consuming alcohol, or smoking cigarettes, I don't feel obligated to take care of her or feel sorry for her!"

Going hand in hand with the compassion concern, is the concern that people with FTD read these questions and end up feeling like they perhaps did do something wrong and brought it on themselves. I would think that they would also feel as though they, and their disease, are not being understood or are being dismissed.

On the other hand, it would extremely wrong to suspect everyone asking questions is trying to place blame. There is a reasonable desire to find a reason for things. In the case of FTD, it could be the fear of them also developing this horrid disease that drives it or  just an intense need to learn as much as possible about it. When I see questions more oriented to head injury, abuse, neglect, depression... things that are out of the control of the person who has developed the disease... that is my first reaction.

Okay, I've already risked offending a pretty large group of people, but there is another area that concerns me. I often see, out there on the internet, suggested home and holistic treatments. There is no research to back up most of these claims and some of them can actually do harm. Many may have a placebo effect and provide the illusion that they are doing something to improve or delay the disease. Now, don't get me wrong, there are many holistic and home treatments that may help alleviate symptoms but they aren't a cure.

The medical field has not determined if there are supplements that can actually help FTD, but there are supplements that are believed to improve memory and/or thinking. There is little risk in taking these. These include CoQ10, Vitamin B and Vitamin E. Personally, I have been taking B and E supplements for over 15 years due to deficiencies in my body. I have pernicious anemia so my body cannot absorb vitamin B in the normal way and I must get injections. However, I would never suggest that perhaps these vitamin deficiencies caused me to develop FTD. That would be grasping at straws and offering false hope. There in lies my concern about claims like that being posted on the internet, as well as wasting money that can become scarce when one has FTD. 

One of the herbal remedies showing promise with some of us is CBD oil, but I will not suggest that everyone can benefit from it. It is also very expensive which makes it out of reach for many anyway. If you are interested, there is a lot of information about it on the internet and I will leave it up to you to read about it and evaluate the risks/rewards for yourself.

There are lifestyle issues that are suggested to possibly delay the progression of FTD. The two main ones that come to my mind are exercise and a healthy diet. When I was diagnosed, the neuro-psychiatrist gave me two suggestions. "Get exercise equivalent to walking two blocks a day for me, and get your affairs in order." I guess it was really three because he later said "Enjoy your life while you still can."  

I am not sure walking two blocks a day is perfect or enough for everyone, but it is good to keep moving if you can. If you can jog, jog. If you can walk, walk. If you can't do either of those, try chair Yoga. The senior centers in my area offer chair exercise sessions also. The more you stay active, surely, must be better for you than remaining sedentary. 

Obviously, a healthy diet is good for absolutely everyone. A Mediterranean diet is highly recommended by experts. It includes less meat, less carbohydrates, more vegetables and healthy grains. 

Yes, it is obviously better to eat a healthy diet but it can also be a huge challenge. When someone with FTD has the common intense cravings for carbs and sweets, it can get downright difficult to manage. Also, the sense of taste and smell are often greatly reduced. I compensate for that by using more spices and even adding a little sweetness to foods. I use agave syrup for sweetness because, while it does have calories, it does not affect the blood glucose level like sugar. The sugar just makes the cravings for sweetness stronger. 

Here, I would be remiss to not mention the question of which is most important, length of life or quality of life. Personally, I succeed pretty well at eating healthy, but I also eat my cookies. I try to have homemade ones on hand and usually add things like peanut butter, dried fruit, whole grains and, I admit it, sometimes chocolate. But when I am craving sweets, stay out of my way! I know FTD is going to kill me eventually, so why should I deprive myself of all tasty treats?

Bottom line on the "cures" and lifestyle changes, I suggest you use your common sense. If it sounds too good to be true, it probably is. Bottom line on the search for reasons someone has FTD, think about whether it really matters. Will suggesting that someone caused their own FTD make a difference or make things worse.

My own personal bottom line, please visit the website www.ftdregistry.org. Answering these surveys to help the experts research the causes of FTD may be a much better option than to wear yourself out to figure it out on your own.

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!

. 

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.