Tips for Coping With the Holidays

I usually only post once a week, but I thought that since the holiday season begins this week, some tips on dealing with it would be appropriate.

First of all, keep it as simple as possible. For instance, this year I chose to decline invitations to join others for Thanksgiving. Even though they were willing to either come here and help or have us go there, I was feeling overwhelmed by either choice. So, for once, I listened to my gut. We are staying home. It will be just my husband and me and a very pared down menu. I will roast the turkey and make stuffing. There will be no fancy casseroles or multiple choices. I will serve heat and eat vegetables, open a can of cranberry sauce and (horrors of all horrors) instant mashed potatoes. Even worse, I will serve up a store bought pumpkin pie. I figure with enough whipped cream, it will taste close enough to homemade. I have promised myself that, after dinner, I will go to my quiet room while my husband cleans up. This was a difficult decision to get comfortable with. Cooking and baking has always been "my thing." Admitting that I can't do it was tough, but I realized my husband would probably not even notice the difference! The back up plan is, if I wake up that day and it is not a good day, I will send him to Bob Evans to get two turkey dinners to go. Flexibility is what works best for me.

Whether you have the holiday at your house or go elsewhere, crowds can quickly overwhelm someone with FTD. It doesn't matter if it is family, really close friends or strangers. Too many people means too much confusion. Add in having on the TV for football games, the frenetic energy of kids and pets, six conversations going on at once and it becomes unbearable very quickly. Even having too many choices of food can become an overwhelming task. So, what can we do?

If you are going to someone else's home and the one with FTD is able to stay home alone, ask them if they want to join you. If they don't, accept that and offer to bring some dinner home for them. I'm sure the host/hostess won't mind. The same scenario applies if you are planning to go to a restaurant. If they don't want to go, don't force it as that will only make it worse.

If they agree to go, or are unable to stay home alone, there are steps you can take to ease the stress. First of all, ask the host/hostess if there is a quiet place in their home where the person with FTD can retreat if they feel overwhelmed or over-stressed. Then show the person where it is and assure them it is fine to go there if they need to.

When in someone else's home or anywhere else, try to find an out of the way place for the person to sit. I like to sit where no one can come up behind me. Many with FTD are like me and have limited peripheral vision and it can be frightening when people come up from the side or the back. I like to find a seat up against a wall. I find chairs are better than sofas when there is a crowd so that I don't feel trapped next to someone. It also helps to be near an exit as well. I avoid seating in the path of children or pets. I try to not be too near the TV if it is on. Yes, those are a lot of requirements, but you don't have to meet them all. I try to find the seat that meets as many of them as possible. 

The same applies for a dinner table, in a home or in a restaurant. Sitting in between two people can cause me to panic or become over stressed. I feel trapped and not in control of my own space. The actual ends of the table or the spot by the end works best. Perhaps having a back up plan in place would be a good idea. Watch for signs of stress, if it looks like it is going to be too much, perhaps the person could take his plate to another room to eat. Another option could be to suggest going to the quiet spot and keep a plate warm for them to eat after everyone else is done. While not ideal, it is better than risking making everyone uncomfortable.

Keeping the outing short is the best idea, if possible. More than a couple hours can often be too much. Many with FTD need frequent naps. These are needed to rest the brain and "recharge." It's not always easy to nap in places other than home. Not enough rest is never a good thing.

At Christmas time, opening gifts can be very over-stimulating. In some homes, everyone is tearing into their gifts at the same time. I have been in homes where the paper and boxes literally go flying. So now, you have colored lights (please do not have them blinking if you can control that), people talking over each other and sometimes just general mayhem. This is a definite time bomb for someone with FTD. In our family, we have always taken turns opening gifts and letting everyone see what the gift is. My dad would always laugh when our daughter was young. She would still be opening gifts at 2:00 in the afternoon. He would insist she must have too many gifts. That wasn't the case, she just liked to open one, show it off and enjoy it for a while. Obviously, this was a lot easier when it was just our daughter, my dad, my husband and I. This is not very practical in most cases, but it gets the point across that you should attempt as much quiet and calm as possible.

The other options, of course, would be for the person with FTD to stay in another room until it is over. If they don't want to be excluded, or you don't wish for them to, perhaps they can sit as far from the tree as possible, or in an adjacent room where they can still see.

Noise canceling headphones can be of benefit in many situations. If the person needs some solitude, but there is no where else to go, putting these on can be a big help. Closing their eyes for a while can help as well. 

Travelling long distances when it involves someone with FTD can be an extremely difficult challenge. If traveling by vehicle, frequent rest stops and bathroom breaks are a good idea. It can help to pack some of their favorite snacks and drinks. This is a really good time to try the noise canceling headphones. You might want to check with their doctor to see if a sedative can be used during the trip. I can remember one time when travelling that the traffic was heavy and erratic. I actually tried to open the door and get out of the car... at 65 mph! Fortunately, the locks were set to the child lock system so that the door could not be opened. I now always take a sedative before a car trip longer than half an hour.

Traveling by air has its own recipe for disaster.  The first thing you should do is visit www.tsa.gov/travel/passenger-support or call 855-787-2227. They will take down all the relevant information and work out what support you need. Then they contact the TSA agents at all the airports you are using to arrange assistance. There is a "card" (really a sheet of paper) that you print out that identifies you as needing assistance. Most of the time, for me, they have a wheelchair and attendant or tsa agent at the door closest to the airline I need. They take me to the tsa screening area and assist me through the procedure. Most often, I do not have to remove my shoes and just have to walk through the scanner rather than standing there with my legs and arms spread. They help me recover my bags and then take me to the gate. Some have even offered to stay with me until my flight boards. At some airports, I need to give the agent or wheelchair attendant the "card" I printed off from the tsa. The best part is that you don't have to wait in line, they take you right to the head of the line. Also, they are not as restrictive as to the amount of medications and such for your carry on bag. One time, the attendant took me, along with my daughter, to a restaurant so we could have a bite, then came back and took us on to our gate.  I always tip the attendants well, especially when they go the extra mile like this. Do not try to tip the tsa agent though.

Of course, once you arrive to your gate, check in with the gate agent and let them know you will need early boarding.

When you make your seat choice, keep the one with FTD in mind. Some prefer an aisle seat so they don't feel trapped. I prefer a window seat so that no one can come up to me or bump into me. I don't travel without someone with me, so that person gets stuck being in a middle seat. We love planes that only have two seats on at least one side of the plane. Bring things to keep the person with FTD occupied, depending on what will keep their attention such as books to look at and music to listen to. Those noise cancelling headphones may save the day. Maybe even a stuffed animal or small pillow to clutch onto. Be sure to pick up a drink and a couple snacks in the terminal area in case they get hungry and keeping them hydrated is always a good idea.

If you are staying overnight at someone's home, be sure to explain FTD to the host or hostess. Explain what will be needed such as the quiet space to go to, what foods are preferred or restricted. Although difficult, if the person has continence issues, do inform them of this and suggest a waterproof mattress pad and ask where you can deposit soiled diapers and garments. It might also be beneficial to ask if you can use their laundry to wash those dirty garments. If their home is going to be crowded and constantly active, it might be best to stay in a hotel.

This sounds like a lot, but summing everything up, the goal is to keep things as calm and as close to the normal routine as possible. The cIoser to normal, the better. Try to limit things that can lead to over-stimulation such as lights, noise and commotion. It might be a good idea to ask their doctor for a temporary medication or sedative to have on hand if needed. 

And... please, tell people to refrain from asking things like "Do you remember me?" "Do you remember this?" "Oh, surely, you remember when?" and refrain from saying things like "Oh, you look perfectly fine!" or "I forget things too."

One final thing. Keep in mind that it is normal for someone with FTD to be "up" in front of others, then to crash when they are back with you. I swear it is adrenaline that allows me to act almost normally when around others but have no scientific evidence to back it up. Unfortunately, once we are back with the people we are most comfortable with, that is when we break down, get irritable and nasty. When this happens, a good thing to  keep in mind is trying to get them to rest and recharge. I shouldn't admit it, but it's times like this that a small glass of wine or beer helps me calm down. This is not advisable, though, if drinking is an issue for them and remember I said a "small" glass.

The calmer you can keep things and as close to their normal routine as possible will, hopefully, allow you to enjoy the holidays. If they blow up or lash out at you, remember they are most likely not trying to hurt you, their brain just has them out of control. Try to walk away and not argue back. Trying to reason isn't going to work. Please try to not take it personally, they really cannot help it. Don't give a lot of choices, just tell them it's time to do whatever it is you want them to do. Remember to choose your battles if they smell a little funky because they are too stressed to cooperate and bathe, it won't reflect on you.  If they sneak too many cookies or pie, it's not going to hurt anything. The calmer you are, the calmer they will be and vice versa.

Happy Holidays!  They can be, honestly!

  

We Don't Do It On Purpose, Truly

Let me start off by saying that I admire caregivers. It is not even close to being an easy task. It is frustrating, exhausting and depressing. Well, guess what? It is just as, if not more, frustrating, exhausting and depressing to the person with FTD.

I have been having a horrible week. To top it off, I keep seeing comments online, by a larger number of caregivers than usual, complaining about things they should already understand about FTD. As I said, the task is onerous, but there are general things all caregivers should be aware of.

First of all: We do NOT do these things deliberately! 

We do not ignore you for the fun of it. Most likely, you are being ignored because you are not being heard or understood. An important thing to remember is something that I write about quite often. Please, one thing at a time! If I am trying to read the paper, watch television, tinkering with something or even just staring out in space, that is one thing. I include staring into space because usually when someone is doing that, they are thinking about something.  When you start talking, it becomes two things and my brain can no longer focus on either one. If I actually hear the words you are saying, the odds are that they are that, just words jumbled together and not making any sense at all. I don't know about others with FTD, but when you add in another thing or try to talk to me, my brain becomes a black hole. It feels like it is a spinning wheel that cannot stop anywhere. It is necessary to ensure I am engaged with you before you start talking.

Someone with FTD may be tired or overwhelmed by things around us such as too much noise, too many or not enough lights or too much commotion. In that case, the brain is going to have difficulty engaging on anything. I may hear the words, but I may misunderstand some or twist some around. This can make a simple statement be one of total nonsense to my brain.

We may not be able to understand because there is too much content in what you are saying. If you tell me that you need me to go get the waste basket from my room empty it and take the trash out to the can, my brain is going to say a very loud "Huh? What did he just say?"  Or I may remember to go get the waste basket from my room and have no recollection of any of the other task involved in your request. I might find something else in my room that needs tended to and forget about the waste basket. I remembered you told me to do something, it's just that my brain did not follow beyond the first step.

It comes down to that "one thing at a time." What you just asked me to do in this scenario was six or eight tasks. Go to my room. Find the waste basket. Bring it to the kitchen. Add it to the trash bag. Tie up the trash bag. Remember where the trash can is located. Go there. Open the can and put the trash in. I won't even count finding my way back to what I was doing beforehand. Before you say that I am being ridiculous, I am not. This is all about the "executive functioning" that we hear and read about with FTD. It is organizing our thoughts and actions in order to accomplish tasks, even simple ones.

Our brains no longer function the way they used to, they don't hear like they used to and they can't figure things out like they once did. Often times, words make no sense whether spoken or written. I still insist on reading the newspaper every morning. More and more often, I realize that I have read something backwards or with the words out of order. The English language is fascinating when you realize that, just by moving a couple words, you can change the entire meaning of what is being said or read. Just as this can occur when I am reading, it can also occur when someone is speaking to me.

When the caregiver gets frustrated when their loved one seems to ignore or misunderstand what they have told them, it doesn't help to say it louder and louder, eventually yelling it out. It's not that our ears are not hearing because of the volume. It is that our brains are having difficulty understanding what those words we heard are all about. This seems to get more difficult the louder it gets. What might help is to, calmly, repeat what you said in a slightly different way. Listen to what you are saying. Is it possibly there are too many small things involved when what you are saying is broken down?

Another useless tactic is to keep beating a dead horse. After a couple attempts, it may be time to realize it isn't going to work right now. Stop and decide how important it is. Must it be done right now or can it wait until later and try again after the loved one has rested their brain for a while. Stop and pay attention to the surroundings. How many people are around? Is the TV on or is their music playing? Are the pets running around? Are there distracting odors? The list of things that can overwhelm me to the point that I cannot understand is extremely lengthy. It is also not always something that I can figure out. Sometimes, I just have a generalized feeling of being overwhelmed.

When feeling overwhelmed, that is when I go to my quiet room. It is my haven of dim lights, quiet and comfort. This room is also where I keep my computer. Sometimes, focusing on something like an easy computer game can help me refocus. I also hear caregivers complain that the only thing their loved one wants to do is sit in their room doing nothing. Most likely, they are not doing "nothing." They are quieting their brain so it can recharge.

Unless it is interfering with the household schedule to the point of disruption, it does not make sense to complain or worry about how much they are sleeping. First of all, I need to be in bed for at least 10 hours before I am rested enough for my brain to start functioning again. If it has been a stressful time lately, it can take more like 12 hours. I am not saying to never worry about them sleeping too much. If they are sleeping more than 12 hours with a couple naps throughout the day, you may want to mention it to their doctor.

I cannot speak for everyone with FTD, but when I get nasty, lash out and become non-cooperative, it is usually totally due to frustration. It is frustrating, beyond comprehension, to not come close to being able to do things that used to be done automatically, without thinking. It is frustrating to struggle to add a couple numbers after working as an accountant. It is frustrating when I cannot effectively explain or communicate what I am needing. If I cannot think of the right words, or if my stress level is high enough that I can barely speak anything at all, it becomes beyond frustrating. I just want it to all go away. This is when, if FTD would just allow me to cry, I would be doing just that.

What can you do when your loved one reaches that point? Distract, distract, distract. Try directing them to a different activity or suggest they go to their "quiet place" and relax for a while. If I cannot do a task you are asking me to do, dealing with me when I am at that frustration level is going to be more exhausting and stressful for you than it would be to go ahead and do it yourself or to let it wait. If I am talking too much which is adding to your stress, stop me and suggest that we talk about it later when you can give me your full attention. It's okay to stretch the truth a little if it distracts your loved one from negative behaviors. If you try to explain things logically, it is more likely to cause a blow up than to calm the behavior. Nothing wrong with a little bribe either.  "If you sit quietly and let me finish this, we can take a break for a cookie." That would work for me most anytime! Those with FTD love our carbs and sugar.

I know I have taken the risk of insulting some caregivers. That is not my intention. Like I have said many times before, I have been on your side of the fence before. I was a caregiver before I developed the same disease myself. I do understand. I also know now how often, with what I know now, that I would have handled things differently. With the start of the holiday season hitting us this week, the stress levels are going to be increasing. Hopefully, reading this just might help bring a tiny bit of calm into the picture.

Embarrassment

Obviously, FTD is a horrible illness and extremely difficult with which to deal, whether you have the disease or are the care partner for someone who has it. It truly can become a living hell.

Accepting the disease is very difficult for some, which can make it much harder for the caregiver. Honestly, though, sometimes I envy those who don't recognize that they have FTD or what they are doing because of it. I am sure that those in this circumstance, especially the caregiver, have a multitude of problems that the rest of us with the disease do not. I still wish I was like them sometimes.

Quite often, I think and hear others with FTD say that those with Alzheimer's have it better than we do because they do not know what is happening. This stage of not knowing does not usually affect those with FTD until the very end stages. There are, of course, exceptions. No two cases of FTD are the same. With the number of diseases included under the FTD umbrella and the number of possible symptoms for each disease, there are a multitude of combinations. Doesn't it seem pathetic to be jealous of someone with Alzheimer's?

Most days, I am extremely thankful that I am aware that I have the disease so that I can compensate for it as well as I can and live a good life in spite of FTD. There are so many ways that I do this. I know I cannot handle crowds, so I avoid crowded places. I know that family gatherings or other events can quickly lead to sensory overload, so I make sure I stay close to an exit in case I need to step out. Or, I ask the host if there is a quiet place I can retreat to if it becomes too much.

There are only so many circumstances that I can prepare for like this. I can never predict, for certain, how and when I will react to my surroundings. Once sensory overload hits me, I often am unable to cope at all. To me, sensory overload is when there are too many stimuli surrounding me. It can be too many people, too many sounds or loud sounds, too many colors, too much activity, too many things to choose from, too many people touching me or anything that affects any of the human senses.

When I get to the point of sensory overload, it is nearly impossible to cope. I can no longer focus on anything. It does not occur to me that I am okay, and that I just need to leave or step away. My world becomes a blur or a big black hole. I can literally not focus my vision, ignore sounds, people or anything else. I also cannot hear anyone trying to help me. I am unable to do anything except panic. I need someone to step in and act for me, even if I cannot respond.

After instances like this, I become hugely embarrassed. Logically, I know that I should not be because it is the disease that causes me to do it. Also logically, though, is the knowledge that most of the people who witness this have no clue, either to the fact that I have FTD or how the disease affects me. I can not help but be reluctant to see these people again. I become withdrawn when I am around them for fear of what they are thinking of me. It doesn't help that FTD often adds in a bit of paranoia. In many cases, though, it works out just fine, because they avoid me as much as they can.

It is not only people I know that can cause me to be embarrassed. One of the times that is always in my mind is when  my sister and I had gone to the little theater we are lucky to have in our town. We had to park a couple blocks away. After the performance, we headed toward the car. The first block is uphill plus the sidewalk is in need of repair. I had not yet begun to use a cane and I was having difficulty walking. I was stumbling and meandering from side to side. Behind me, I heard "Come on, let's get around this drunk!" I was tremendously embarrassed even though I did not know these people. If they thought that about me, how many others were as well? I have not been back to the theater since then. The only good part was that I finally admitted I had to start using a cane. If for no other reason, so other people would recognize that perhaps there was a good reason for my difficulty walking.

I have written many times about people not believing there is anything wrong with me. This is true for just about every person I know who has FTD. Because we still have out memory, they don't believe we have dementia. To them, dementia equals loss of memory which equals Alzheimer's. When this happens, it can be infuriating. It can also be embarrassing. After all, if they don't believe I have a disease, what do they think is causing all my symptoms? Do they think I am drunk? Do they think I am faking? Do they think I am inventing this disease to get out of doing things? Why in the world would anyone think that someone would fake having dementia?  I know I should dismiss them and their ignorance, but that is really difficult to do. Instead, I am left with a huge amount of embarrassment.

I have been embarrassed enough times, that I am often reluctant to go out anywhere. I have always striven to be proud of myself. In fact, my maiden name is the German word for pride. I was raised to believe that I was no better than anyone I ever encountered, but that I was no worse either. How many instances of seeing people turning their heads, looking at me questioningly or with looks of disgust on their faces, can I deal with before it causes reluctance to venture out into the world? How many looks, of disbelief or disgust, can I handle until I refuse to talk about having FTD, knowing they won't believe me anyway.

I cannot tell you how many times, after explaining to someone that I have FTD, I have just stood there wanting to cry from frustration and/or embarrassment after they have not believed?  If FTD allowed me to cry, I would be definitely standing there crying. I may have used this example before, but it is always in the back of my mind. One day, in our church parking lot, during a festival, a member asked me why I was using my cane. I explained that I had FTD, a form of dementia, and that it caused me to have difficulty walking. He huffed and said, "Oh, I thought maybe your cancer was back." then, as he was turning his back to me, he said "You know if you think you have dementia, you don't!" and it was not said kindly. This was one of the pillars of our church and we were surrounded by many others. We left immediately after this. Some have suggested to me that I can still come to church, that I can sit off to the side where there are seats right by a door. I could try that, but if I did something inappropriate, which is quite probable, or had to leave because the walls were closing in, I know I could not handle the embarrassment again.

There is an answer to all this. FTD needs to have as much research and publicity as Alzheimer's does. It should also receive its fair share of available research dollars. People need to know about FTD and its symptoms. Doctors need to know. The press needs to know and to publish information about it.

I do my best to help. I spread the word at local health-related events. I speak about it to anyone who will listen. Out of all these events, only one person has caused me to feel embarrassed by the way she dismissed me and my information. Her comment inferred that it wasn't really an illness and that she already knew everything she needed to. I'm not sure why she was standing in front of my booth. Perhaps she just wanted a free piece of candy I was offering people?

To all the others reading this who have FTD and to their care partners, please try to not be embarrassed when ignorant people act ignorantly. I will be working on it myself.

Not-So-Healing Touches

Two weeks ago, I talked about how sounds can be translated into pain when one has FTD. Today, I would like to talk about the sense of touch, which can have the same effect.

I hear all the time about the "comfort of touch." It is not uncommon for me to hear or read of someone praising the "healing touch." Another one I see often is that if you are dealing with an agitated person, "try a gentle touch" to help calm them.

I am the opposite. I often pull back when someone touches me, even from a gentle touch to calm me, This touch does not calm me, it does the opposite. It magnifies the aggravation or stress rather than easing it.

Just as explained that sounds can sometimes be translated into pain, touching can do the same thing. I did a little research while preparing to write about this. Turns out, there is even a scientific terminology for this, tactile dysesthea" which is defined as an unpleasant and distorted sense of touch". It actually made me feel better to know that there is a name for it which reassures me that I am not the only one who experiences it.

The absolute worst time to try to touch me is when I am stressed or agitated. A normal reaction for someone observing the signs of this stress is to reach out and touch. Often this is just an easy pat to the shoulder or arm or, the most horrible, an attempt to give a hug. My reaction can lead to truly hurting the feelings of a loved one. Here they are, trying to help me settle down or to reassure me that everything is okay, and I react like they have slapped me.

While, the support is appreciated, the touch brings a total sense of pain to my body. Like with sound, it is not a specific place or area that is painful, it seems to be more like nerve pain. Every bit of my body is feeling it. The best thing, in an instance like this is to, rather than touching me, is to calmly ask me if I am okay, if there is anything they can do to help or if I would rather be left alone. If you want to offer a hug, ask first.

This can happen anywhere, anytime. It can cause me to appear as though I am totally socially inept. If a casual acquaintance or someone I just met attempts to give me a hug or even just a touch, I can freeze up or jerk away. It is difficult to explain to someone that I am not rejecting them and that it is just a fear of being touched. As soon as I react like that, they are already shying away from me before I can say a word. So, on top of the sensation of pain, I have the embarrassment of someone walking away from me.

It is difficult for a loved one to understand that, when they try to give me a reassuring hug or pat on the shoulder, that I am not rejecting them. It is the touch that I am rejecting. It is pretty close to impossible for most people to understand that it is pain that I am feeling, not comfort.

I had an experience with this a couple days ago. I needed to buy a new printer and was determined to install it myself. Before FTD, it would have been ten minutes to get the darned thing out of the box and less than that to get it working. This time, it was a disaster. Of course, the more time it took, the more frustrated I got. The more frustrated I got, I took it out on the printer, the computer and my poor husband who attempted to help. It literally took me five hours until I had it up and running. When I finally got it, my thought was "Of course, I knew that's what I needed to do!"

I did have a wonderful feeling of accomplishment, that I did it myself. It's just that when I was done, I had to clean up all the papers and wires I had thrown around the room. I also had to apologize to my husband and explain, again, why I screamed at him and rejected his reassuring touches as well as his offers to help.

I wish I could say this is a rare incident, but it is not. I am an equal opportunity offender. It happens with anyone, anytime, any place. It is just one more way that this disease leaves me with a feeling of embarrassment and worthlessness.

This pain from being touched is not the only touch-related issue with FTD. Another totally different issue that affects many is a need to constantly touch things. It can be something like repeatedly tapping, rubbing or stroking something. It is an obsessive compulsion, another symptom of FTD. While this most likely does no harm, it can be extremely frustrating to the people around them. It can also be frustrating to the one with FTD because they often realize they are doing it but cannot stop.

An even worse touch-related symptom is the intense desire to touch others in a sexual manner. This stems from the symptom of hyper-sexuality that is, unfortunately, pretty common to those with FTD. This symptom can be extremely embarrassing on both sides of the touching. It can also destroy marriages and relationships.

Fortunately, not everyone, with FTD or not, reacts the way I do to touch. To many, that reassuring touch or healing touch is a very effective tool. Touch can do wonders. It can also hurt. The important thing to the one with FTD is to know they aren't the only one. Likewise, the important thing to know for the loved ones is that it isn't deliberate.