Saturday, January 20, 2018

Mood Swings, Anger and Frustration

I struggle for ways to explain the mood swings that come along with FTD. They are not always as severe as they are at other times. They also are not triggered by the same things. Often, the trigger is unknown as there seems to be no rhyme nor reason.

One of the triggers is the same old "one thing at a time" issue that I harp about constantly. For instance, I continue to read the newspaper every morning even though it can be a struggle. Anyone with FTD will understand how it takes my entire brain even attempt to read. I can no longer just speed read through things like I used to. I think it should be obvious that I am intensely concentrating. Yet, inevitably, someone will pop up and ask a question, turn on the tv or start rattling things around. As I have explained before, that puts my entire brain into a black hole. It becomes impossible to focus on anything.

When I am in that black hole, while struggling to get back to making sense of something, anything, my reaction is to lash out. I know I have written about this many times. Picture me, sitting on the sofa, holding the paper in front of me. When interrupted, I will often start shaking the paper that I am holding, which produces a loud ruckus. I will also scream out something like "One thing, one thing!" Or something harsher like "Why the he!! can you not get it?" Eventually, I will answer the question. If it is an important question or time sensitive to a needed decision, I can pull myself out of it because I understand why the interruption was indeed necessary.

Most often, though, I cannot. Invariably, it is an inane question or one that could wait for hours, or at least until I finish a section of the paper. It doesn't even have to be a question, it can be any interruption at all. My husband likes to show me things. When he fixes a plate of lunch, he shows it to me. (Part of that is my fault, after forcing him to watch too many cooking shows on television, he is all about the presentation on the plate.) I don't care what he is having for lunch or how pretty it looks. I know he takes pride in it, but I don't care. I have FTD and I don't care about much of anything. Plus, the tiny bit of my brain that does still care about anything is busy!

When it is a completely unnecessary interruption, I cannot pull myself out of the bad frame of mind. I am angry that no one can understand that focusing on something is extremely difficult, sometimes impossible. That anger often remains and puts me into a really angry and foul mood for hours or even the rest of the day. If someone were to ask me why I was in a bad mood, it would be very difficult for me to trace it back to that one stupid interruption. I know I am mad, but don't remember why.

Wow, I am guessing you realize that this is a big issue for me by the number of times I write about it. It is indeed a common cause of frustration in my life, but there are many others.

Being trapped inside because of bad weather is another. I don't spend much time out of doors any time of year because of the risk of falling, but enough to prevent cabin fever. In winter, I cannot even go out and sit on the deck. Add to that, the shorter hours of daylight and I fall into a really bad mood, even depression. My husband actually understands this trigger. I spend much of my time in our family room that has a slider opening up to our deck. When it snows (Bear in mind we are in a northern state of the US where it snows frequently in winter.) he tries to shovel a wide path across the deck so that when I am looking out, I don't see the snow that so quickly adds to my feeling trapped. He also clears the way to fill the bird feeders and to feed the squirrels so that I enjoy watching the wildlife.

To combat the shorter days with less sunshine that a body needs, at least my body, I have a full spectrum light in our overhead light in the family room. The bulb rotates between all the colors of the spectrum. I keep it on a setting to fade from one color to another, otherwise the flashing of the color change can be nerve jangling to me. My husband has actually come to like the changing colors and I no longer feel guilty that it bothers him. Neither of these things is a cure, but they do help a bit.

The other biggie to affect my mood is lack of sleep. Sleep issues seem to plague most of us with FTD. Not being able to sleep or not feeling rested after sleeping seems to be the most common. This even becomes a safety risk because, often, when you cannot sleep, you get out of bed and wander around. Walking around the house when you are tired, perhaps disoriented or in the dark, is a much higher risk for falls. If sleep is an issue, it is time to discuss it with the doctor. There are many medications that can help. These range from the simplest, supplementing melatonin, to the more extreme and sedating medications. For me, we have found that Trazodone works best. It is an old medication, actually an anti-depressant, that is not used for that purpose anymore because it makes one so sleepy. Bingo! The other benefit from it is that I no longer wake up with night terrors in the middle of the night. Of course, like any medication, it does not work the same for everyone and it must be discussed with your doctor. It is a prescription drug, so that makes it kind of essential to talk to the doctor anyway.

There are, obviously, many more things that affect my mood. Some affect it for just a few hours, others can affect it for days. My old, tried and true, methods of dealing with a bad mood no longer works. I would always try to create something. I was somewhat of an artist in a few different media and a creative baker. This disease has stolen most of my abilities and those that remain are no longer relaxing, they actually increase my stress. The one thing that helps, somewhat, is to practice Reiki on myself. Even better is to go to the studio and get a certified practitioner give me a session, but that is not usually possible.

When others, not knowledgeable with FTD, pick up on the bad moods or depression, they are quick to offer advice. Some of the most common are that I need to pray more. I need to meditate. I need to take this supplement. I need more Vitamin B. I do believe in the power of prayer. I use Reiki as a way to meditate. I take a full regimen of vitamins. These truly ignorant people make me want to scream. If I attempt to explain that it is caused by my FTD, they look at me like I am the stupidest person on Earth. Then their response is usually something like, "I still say you need to ______ more!" Then they wonder why I avoid spending time with them anymore. Arrrggghhh!

I apologize for going on yet again about "one thing at a time" which is my mantra that I stole from AA's motto of "one day at a time." I should be glad that this seems to be my worst problem with FTD. Well that, along with difficulty swallowing, difficulty finding words or getting them to come out of my mouth, falling, loss of balance, difficulty completing most any task that involves for than one step, and on and on and on...

Hmmm... no wonder I am often in a bad mood.

Sunday, January 14, 2018

First, A Tribute.... and then, Some Helpful Stuff

I am planning today to do something different here. I have some products that I absolutely must tell about. Please be patient and read on... I will get to it.

                                        ***                                   ***
First of all today, though, I must scrap half of what I intended to write about and pay tribute to a beautiful woman whom I was proud to call my friend. She was a friend to all who had any connection to FTD. Susan Suchan was just 60 years old. She, like many of us with the disease, was first misdiagnosed. She became a strong (I wish I could think of a better word, it was so much more than strong) advocate for the disease and for those dealing with FTD. She had aphasia as part of her disease which hindered her speech. It did not, however, hinder her from putting herself out there and talking about it to all who would listen. 

There was no disliking Susan. When I first met her, nearly two years ago, I knew that she would make a positive difference in my life. She taught me that it is okay to laugh at the disease and at myself. She got up in front of the AFTD conference to talk about FTD and welcome everyone to the conference. Her aphasia certainly didn't keep her quiet. My daughter and I had a great time with Susan and her daughter at the party following the conference. At one point, I felt embarrassed after spilling coffee all over the buffet table. Feeling humiliated, I went back to our table and told everyone what I had done. What did Susan do? She laughed. Then she laughed some more. She said something like "Honey, who the [F-word] cares?"

She inspired me to think that maybe I could speak out about FTD as well. That is why I write this blog, wrote the booklet "Coping With FTD" and became a volunteer for the AFTD. I put myself out there at local events to talk to people and give out information. Sometimes, my words don't come out right but, thanks to Susan, I don't care. I just keep going until I get out what I wanted to say.

I only had the privilege of knowing Susan for two years, but she gave me a lifetime of inspiration. As sad as I am feeling today, I am also happy for her. I know that she is no longer in pain and is up in a very special place in heaven. I have no doubt that she has already earned her angel wings and is looking down on us and telling us to laugh, not cry. I love you, Susan, and am so happy that I got to know you. I hope you know how much of a difference you made in my life! 

                                           ***                           ***

Okay, back to the products. More than a year ago, I discovered a product called "Nok-Out." It is the best odor eliminator I have ever used. I have had success with it removing all kinds of odors from fabrics and other surfaces. It is not an "air freshener" as such. It doesn't work by spraying it into the air. It works by coming in contact with what stinks. My husband leaves a really funky odor on the sofa where he sits and on his bed clothes. I spray in well with Nok-Out and the odor is gone. Just this past Christmas, shortly before people were arriving, I realized I had forgotten to launder the throw pillows and they really stunk. I grabbed the Nok-Out and sprayed them liberally. No more funky smell. I use it on his bedding as well.  

I have also used Nok-Out on my clothing in an emergency as a quick fix after an accident. It took the smell of urine right out.  It felt a little weird until the Nok-Out dried, but that was better than everyone smelling me! Also, when some cats were visiting, one of them had an accident on the carpet. Yep, wet it down with the Nok-Out spray and no odor remained. It has worked on human accidents on carpeting and furniture as well.

You can buy Nok-Out directly from the company, on Amazon (of course) and major retailers like Wal-mart and Target. I bought a spray bottle of it and then a gallon directly from the company. You can mix it with up to 50% water and it still works well. I use the gallon water (I used about 25% water most often) to refill the spray bottle. Great stuff!

Now I have found another product, "Fresh Wave" laundry booster. You add a couple capfuls to your laundry and it takes out all kinds of smells. It is not cheap, so I would not use it in regular laundry. Instead, I keep the smelly clothes and sheets and wash them in their own load. To me, it is well worth the expense because I don't have to throw as many things out because of the odor.

Fresh Wave makes a lot of other products as well. So far, I have used the laundry booster, their odor removing air freshener (unlike Nok-Out, you can spray it in the air) and their "fresh pods". The pods are air freshening pods that you can stick up in diaper pails, laundry baskets, bathrooms, etc. I actually have my fresh pod in a ziploc sandwich bag and sealed. It  lasts longer that way (more than the month it is supposed to) and is adequate for our needs. All the Fresh Wave products are organic. It is available in all the same places that Nok-Out is. From Fresh Wave directly, Amazon and major retailers.

I think this is the first time I have written about products in my blog. I have read and heard comments, mostly from caregivers, so many times about the odor issues, that I thought I should share. Please bear in mind, I am just a consumer and don't make any promises that it will work as well on every odor issue. I cannot not promise color fastness, though I have not had that problem with anything. I can only say that both products have solved many problems for me. I love them enough that I wanted to let you know they exist, but you have to rely on their warranty because I don't have one.



Saturday, January 6, 2018

Fibbing

I cannot in certainty blame FTD, but I have become a champion procrastinator. While not a good trait to have, it helps me avoid things that FTD will make extremely difficult. It is my ostrich. If I bury my head in the sand, it won't be there when I pull it out. Ah, if it only was so!

This tendency came into play, big time, this past week. I needed to take down and put away all the Christmas decorations. I would look at them in the morning and think "I should do this today." Then the next morning, "I should do this today." It was easier to ignore them if I just closed my mind to them. Finally, I spent the past two days taking them down and storing them away. 

Storing things away should not be such a difficult chore, except that I always pack things away so that they are ready to be moved... just in case my husband ever agreed. This is about the fifth year I have done that. Some dreams never die and, to me, that is a good thing. I have often said, "Yes, I know I live in a fantasy world. Just leave me be, I am happy there."

If I want to keep the dream alive that he will agree with me and move to be close to our daughter, I will keep on dreaming it.

I am often asked for advice from caregivers about how to tell their loved one difficult things or how to keep them from asking the same things over and over again. My first question is usually, "Do you really have to tell them?" Often times, it helps to think about what will calm them best. Little fibs are often the way to go. Do they need to know that you had to sell their house and they can never move back there? 

My cousin gave me an awesome example of this. They were needing to put my uncle, who had dementia, into a nursing home. He knew they had been talking for months about getting new windows for their house. When it was time to make the move, she told my uncle that they were finally going to do it and because it would take so long, they all needed to stay someplace else for a while. It worked. After explaining the same thing at every visit, he eventually accepted it and by then had become accustomed to living in the nursing home.

We are raised to believe that we should always tell the truth. Of course that is still the ideal, but FTD and other dementias make it difficult for someone to understand the truth. Going into long explanations or trying to convince them of something they don't understand is often not going to work. Telling a little fib to turn it into something they will be comfortable with, to me, seems like the kinder thing to do.

The cousin I mentioned was a well known and successful psychologist. If she recognized that fibbing to her dad was the best option, that validated it to me. The caregiver may still have to answer the same question multiple times, but at least it is a short answer that is believable and brings comfort to them instead of repeatedly upsetting them with the whole truth. 

I am probably stretching things to equate fooling myself to a caregiver fooling someone. I am fully aware of the truth and just pretending. But if sitting on the sofa with a warm cup of coffee and staring out the window, visualizing it as the white sands I remember from New Mexico brings me a half hour of comfort, what harm could there possibly be? If it makes it easier for me to pack away Christmas by thinking I am packing it up in case we move soon, why not? 

Losing my cat was one of the most difficult things that has happened to me since the onset of FTD. I have not discussed this with more than a couple people because I am embarrassed and angry at myself. My cat was the most affectionate pet ever. When I was going through treatment for lymphoma, he never left my side. If I was in the bathroom hugging the toilet, he was right there with me. If I was lying in bed, so was he. It hurts enormously that I caused him to die a few years into my FTD. I did not notice that he was losing weight. I did not notice that he was not eating. I would just throw out the old food and put in new. During a visit, my daughter mentioned that he was so skinny. She has huge cats, so I thought she was simply comparing him to hers and laughed. By time I did realize that something was wrong, it was too late for the vet to help him. My cat saw me through cancer, but FTD made it so that I did not recognize the signs that he had it.

I tell this sad tale to show that it does not hurt anything for my to put a pillow up against my back so that the weight of it makes it feel like he is there sleeping with me? I will never have another pet. I will not take the risk of not being able to care properly for another one. So, if I sleep a little easier with that weight against my back, then that is what I should do.

To the caregivers, please, if a fib will make your loved one more comfortable than the truth will, don't hesitate to do it. It is probably the wisest and kindest thing you can do. Don't let anyone make you feel guilty for not always telling the truth. You are not giving them false hope, you are probably just soothing their soul in the same way my warm cup of coffee and my imagination do for me now. 

Saturday, December 30, 2017

Observing to Keep Things Calm

Here it is, five days after Christmas. This is not the best day to be writing a blog entry, but I am here anyway.

My daughter left today to return home. I keep telling myself that I was blessed to have her here for an entire week. There is no doubt about that, but now that she is gone, there is this huge silent hole in the house. We will go back to talking on the phone nearly every day, but it just isn't the same.

Usually, my advice to anyone dealing with FTD, those with the disease and those caring for them, is to keep the home as quiet as possible to avoid over stimulation.  Right now, thought, I want some of that stimulation back. I want those two crazy grand kitties of mine to be running around, chasing each other, climbing all over us... and the purring. I love the sound of the purring. They do it because they are comfortable and feeling loved and it transfers right back to me.

Another common suggestion I make is to keep things calm, avoid a lot of outside activity and that if you have a lot of things to do, to try to not do them all on the same day. The only thing my daughter and I decided against was taking me to see the new Star Wars movie. She had already seen it and explained how loud and dramatic it was, just like all the other episodes, and how crowded it would be. So, even though she wanted to take me, we opted out of that one. We did go out to eat several times, went to a couple stores for things she can't get where she lives, visited family, had family in to visit, made a nice Christmas Eve dinner and Christmas Brunch for ourselves and family.

We did all this, yet I remained calm through the entire week. If you are wondering why I could do all these things that would normally overwhelm me and spin me into a dangerous whirlpool pulling me down, so was I. I realized that it is really simple. My daughter GETS IT! She can see the signs when I am getting stressed. She knows that when I start turning in circles that it means I can't find the thing that I need to focus on. She recognizes that when we are out, if I start fidgeting, I need to go home or find a quiet spot to regroup. We spent nearly an entire day out and about. We went to the chiropractor, met a friend for lunch, visited my sister and her fiance at their home and met their new kitty, went to a coffee shop for a treat and then went and had manicures. Well, she also had a pedicure, but I can not let anyone touch my feet. That is a definite trigger point anytime, anywhere.

If I tried to do this many activities in one day any other time, or with anyone else, it would probably be a recipe for disaster.

I am going into more detail about our visit than any of you care to know about, I am sure. The point is not to brag about all that we did or what a wonderful mother-daughter relationship we have. We do, there is no doubt about that. My point of it, though, is to reassure you that it is possible to live with FTD.

It is so important to understand one another. For me, or anyone with FTD, to understand what the demands are on the care partner and understand if they get stressed. It is just as important for the care partner to understand what drives the one with FTD. Many of us have the same triggers and reactions to things, but we are all individuals and FTD does not have a set pattern as to what order the brain is attacked.

We must learn to adapt and learn to read each other's emotions. My daughter watches for my trigger signals. She will take me aside and ask me if I am holding up okay or if I want to go home. She stays flexible in her plans. We weren't planning on going to the coffee shop, but she recognized that I needed to sit in a quiet place and recharge for a bit. It was after this break that we went to have our manicures. When we were in the car, she always tried to play music she knew I liked and asked me if it was okay or if I wanted her to turn it off.

Can you imagine what that simple question did to me? It made me realize that I still had some control over my own life. She did not once during that day, say okay, time to go here, time to there. She did not once criticize me. She did though, a couple times, lightly touch my arm and ask me if I was okay or if we needed to go home. Like I said, she gets it. She also displays a whole lot more patience than I do these days!

I write this blog every week and often give advice to the care partners. I explain that over stimulation is a bad thing and that you should not expect your loved one to keep up with a frenetic schedule or interact with a lot of people. Those can be vague concepts to understand. The important thing is to learn to "get" your loved one. Learn the signs of impending doom. At least it feels like that when I get overwhelmed and blow up. Listen to verbal clues and physical clues.

Every one of us with FTD is different just like no other two people are alike, we are not either. We may share some of the symptoms and have the same trigger points. If your loved one did not like crowds or excessive noise before FTD, it is going to be worse now. It is important to recognize the signs, like my tendency to turn in circles when I am overwhelmed. It is a sign that I don't know where to go next. Makes sense when I explain it. If you didn't know this sign, you might think I was just acting out and being difficult. Nope. I do not do it on purpose and I have no control over it. It just happens and keeps up until I crash, blow up, cry, scream or start screaming. Hopefully not all at once.

As I said, you need to try to "get" what the signs and trigger points are for your particular loved one. You need to try different ways of reacting to them to find what works best to keep things from getting out of hand. When your loved one stops cooperating, it may not just them being obstinate. It may be a sign that they have had to much and need to shut down for a while.

If I had been out "on the town" with anyone but my daughter, several of the days we spent together could have been disasters. She took over organizing Christmas morning, without making me aware (until afterward) that she was. She never once let me feel inadequate. She made it clear that she was there if I needed her, there to help, not take over.

All this said, those of us with FTD need to try to do some of the same things. We need to try to learn the signs that our care partner is ready to go over the deep end and try to back off. Just like when we are being overwhelmed and need to go to a quiet place and regroup, it is good if we can recognize when they are being overwhelmed and realize that it is time for us to go to a quiet place so they can regroup.

I must remember to remind my husband that I will be not up to par this week, that I will be out of sorts. I will need to adjust to my daughter being gone and knowing that, most likely, I will not see her until April when we go to the AFTD conference together. When I am getting upset and stressed, I am not going to be able to think "Oh, you are just upset because your daughter left." Instead, I will just be very difficult to get along with and liable to turn the emptiness into anger and lash out at him. More than usual, that is.

New Year's Day is in two days. I am thinking that a good New Year's resolution might be to listen and pay attention to each other... the words, the attitude and the actions. Neither the one with FTD nor the caregiver are quite the same as we were before FTD forced its way into our lives. I'm hoping that this just might make our lives a bit better.

Happy New Year to all of you and may 2018 be one of peace, kindness and love.

Sunday, December 24, 2017

Where Can We Find the Joy?

This being Christmas Eve, I have a sense of peace, optimism and love. How can I feel this wonderful while dealing with FTD? That answer is simple. My daughter is home for a week-long visit, from her home three states away. My house actually feels like a home again instead of just a place to live. I'm sure all of you understand that. Nothing can take away that feeling and comfort of home like FTD can.

Last week, I had two days that I scheduled to have nothing to do so that I could rest up to enjoy Christmas Day. If there was anything I had forgotten to do, I was determined to forget about it and leave it undone. Unfortunately, it also gave me time to think. It came to me that I felt, not like I had accomplished something, but that I had simply been going through the motions of what was expected. I had decorated the house, baked the cookies, bought the gifts and wrapped them. Well, I don't wrap anymore, I would end up with wrapping paper around myself instead of the package. So, I had stuffed them all into gift bags.

Looking around, I realized I had not enjoyed a bit of it. It had all been too much to do with the limited energy that FTD allows me. This really hit home when I delivered all the cookie trays to those who look forward to them every year. Read "look forward to" as "expect to receive." It is probably not fair for me to expect the recipients to realize what a task it was to accomplish the baking this year. When that one person said to me "The only one I haven't liked so far is your nut rolls. I don't know what you did wrong, but they just aren't good." Of course I didn't think to say something like, "I'm sorry you did not like them, but I did the best I could." Instead, I apologized and said I had no idea what I did wrong. The result was me wondering why I wore myself out for three weeks in order to make the cookies.

There was no joy in any of the preparation work leading up to the holiday. It was just that, work. It all turned out nicely. Well, except for those nut rolls, I guess. The house looked festive. My husband even told me so and in 45 years of marriage, I think that was a first. I believe I bought gifts everyone will like and the planned menus were looking good.

In spite of all the efforts, I wasn't feeling the joy in it. I realized I did it all because I felt obligated to and many people were expecting it. I sat there, feeling exhausted and wondering why I pushed myself so hard to try to make everything perfect for everyone. Staring at the lighted tree, I didn't feel the excitement that I have always felt for the holiday. All I felt was relief that it was done and that pretty soon it would be over so that I could rest and get back to my normal level of craziness.

I was cussing at FTD because it has stolen so much from me and from everyone I love. I was feeling afraid because right now, one of the worst symptoms I am dealing with is paranoia. I was afraid that if someone would dare to criticize anything, that I would 'lose it'. With not a bit of energy left after all the preparations, I fear I will not be able to not take it personally and won't be strong enough to take it for what it is worth, which would be nothing. FTD steals way too much from us, our abilities to do things, to be employed, to have any independence and to just be how we used to be. One of my often repeated mantras is "fake it till you make it" but that wasn't going to happen here.

All in all, I was feeling numb, no emotions and no energy. There was no joy in the meaning of Christmas and no joy in the coming family celebration. BUT, a miracle happened. My daughter arrived. She brought all the joy back to me. I am anxious for her to open her gifts to see her eyes light up, just like they did when she was a child. I see her enjoying her favorite cookies and I feel happy that I could make them for her. I am watching her two cats entertain us, enjoying the snuggles they are giving me and feeling happy that she brought them with her.

Why am I going into all this? Simply to remind everyone to look for the important things. Who cares if the nut rolls don't taste good. Who cares if the gifts aren't beautifully wrapped. Who cares if the meals don't turn out perfectly. That isn't what the holiday is about. Hopefully, next year, I will remember that all those preparations don't matter. The wonderful feelings I have today are what Christmas is all about. The joy I will feel at the church service tonight is even more what it is all about. The hugs and love of family that I am receiving now and will be feeling more of tomorrow when there is more family here... that is what it is about. There is no 'just going through the motions' with that.

My husband and I celebrated our 45th anniversary yesterday. Obviously, he is here and will be here with me tomorrow on Christmas Day. My daughter is here for an entire week. Tomorrow, my sister and her wonderful new love will be here. We will be a family. I may yell, cuss or cry if things don't go right, but it will be okay. We are family and they will understand.

I hope everyone reading this will have a great holiday as well. The rooms may not be as crowded as they used to be as many of our family and friends have deserted us since our diagnoses. That may be a good thing, we don't like crowds anyway. Celebrate those who are there and overlook all the crap FTD brings with it to the party. Hug more, laugh more and enjoy every moment you can. Remember to find a quiet place if things get to be too much. Find that place to sit where no one can come up behind you to startle you. If something is bothering you, like too much music or pets running around, speak up and mention it because there may be a simple solution. If you don't speak up, odds are that no one will understand why all of a sudden you are uncomfortable and grumpy.

To the caregivers and loved ones, please remember how exhausting even fun events can be to someone with FTD. If you see their energy waning, see if there is a way to help. Perhaps a nap or some quite time will help or perhaps it is time for them to leave the festivities. They aren't being a party-pooper on purpose, I promise you!

I must add one more thought. The Christmas season can be difficult for those who do not celebrate the holiday. All the festivities going on around them and they just might feel ignored and left out. If the person you love who has FTD is in this group, please remember that the coming days may be more difficult than usual. If you understand what may be making them feel sad or out of synch, it should be a bit easier to accept and help them through.

I can't help but end with "Merry Christmas to all, and to all, a good night!" 

Sunday, December 17, 2017

We Try To Be Strong

A couple things came up this weekend and I realized they go hand in hand.

Yesterday, I called to check up on my aunt and uncle. As we talked, my uncle said to me, "You do know there is a special place in heaven for you, don't you?"  I laughed it off and said that I would have more friends with me if I went to hell. His saying this was triggered by me assuring them that their box of Christmas cookies would be arriving this coming week, that I had not forgotten about them. Even though I am unable to deliver them in person this year, I was making sure they got them. They are part of the reason I have been baking for the past three weeks or so.

He went on to explain why he felt that way, that he views me as a very strong person in how I  persevere through life with FTD. He believes that, despite knowing there is no treatment or cure, I keep up with everything I can and still take time to think of others. I do, and it might just be selfishness that inspires that. It makes me feel good to help others since there isn't a whole lot I can do to help myself.

I reminded him about the online support group that I rely on so heavily. I talked about how I see almost everyone in the groups doing the same thing, helping each other and helping others whether they be family, friends or strangers.  

This part of our conversation did not last long even though it is taking me a bit to explain it. When we hung up, it did not stay in the front of my mind. Then today, while going through the postings on one of the online support groups, I saw that a friend was giving us an update on her situation. In reading about everything she is dealing with (and it is a lot), it made me realize just how strong she is and how strong all of us in the group are. Then I remembered yesterday's conversation with my uncle.

These two conversations really got me thinking about our lives with FTD. With this disease, it would be really tempting to just give up and sit around, waiting for it to end our lives. We don't do that though. We fight!  We fight to get diagnosed. We fight by doing our own research. I would put the knowledge we each have up against 95% of doctors out there and be confident that we would know more about FTD than they would. We fight for answers on just how this disease is affecting us. We do that by asking questions of each other. We fight to support each other and to lean on each other. We are forced to fight for financial assistance we are entitled to, yet are denied time after time. We fight to live!

If it was not for us "comparing notes" on these support groups, we probably would not have any clue as to what symptoms we are experiencing are related to FTD and which are not. I cannot tell you how often I will be reading through the posts on one of the support groups and have an "aha" moment. These things I had not realized could be FTD related can be little things I have been noticing about myself or even some big things. The "aha" part comes when I realize that it is probably FTD related and I had not even given that a thought. That was how I learned that the Alzheimer's medication can actually make FTD worse. The doctors, not knowing that all dementias are not alike, don't know that so they think they are helping us by prescribing them. I felt much better after I weaned off them. It can be simpler things like how my taste in foods has changed and I no longer like the same things I used to.

We compare notes about suffering from night terrors and how to deal with family members. We make suggestions to each other as to how to cope with an upcoming event. We pat each other on the back when we recognize what they have attempted to do. We are stronger as a group than we are as each of us alone.

I have mentioned before that I see a psychologist who specializes in dementias. She is a great source of support and I get great benefit from seeing her, even though, at this point, it is only once a month. I could not go that long, and would be paying a lot more copays, if I did not have the daily support of those in our support groups.

Yes, we are strong. We have to be. We have learned how to cope with FTD well enough to be strong. We lean on each other some days and other days we help support someone else. I am not strong on my own. I am strong by leaning on my online friends and my family.

On days when I am not feeling strong, am feeling sorry for myself or feeling very angry that I am being forced to deal with FTD, I retreat. I hide in my room, I don't talk on the phone, I don't talk on the support groups. I am not always as strong as I appear to be. From talking with others with FTD, I think we all have days and weeks of this anger and regret. However, we also recognize that it is self defeating and makes us weaker, so we dig deeper and find more strength and keep going, keep smiling and pretending we are just fine.

It is this digging deeper, putting on a smile and pushing on that makes those people, who know very little about FTD, say "You seem just fine to me." And that is why we rely on each other. This disease is not one that those who have not lived with it, either having the disease themselves or being a care partner for one who does, can not comprehend just how debilitating and defeating it can be. How impossible it can be for us to cope some days.

To my online support group friends, I thank you and thank God for you. Without you, I would not be strong at all.

Sunday, December 10, 2017

For Christmas, "K.I.S.S" (not Hershey's)

With apologies to nursery rhymes everywhere: 

"Christmas is coming, I want to make it grand,
Please put a glass of wine right here in my hand."

There is no doubt about it. Christmas is my favorite day of the year. No, it's not about the gifts, at least not the gifts for me. I cherish every gift I get, but I have always enjoyed giving gifts more than receiving them. As I said, it's not about the gifts, it is all about the traditions in our family that make it Christmas for me.

Our daughter lives three states away, so having her home for an entire week is a joy unto itself. She even brings my grand"kitties" to liven up the household. She will help with the traditions that don't need to be done ahead of time. She will also reprimand me for not waiting to do some of the things until she got here. My husband helps with what he can, but is also dealing with dementia (not FTD). 

With two weeks yet to go, I am already feeling stressed, even though I have made a lot of changes in the way I handle all the preparations. The way I do everything may not work for you, but I will tell you about those that work for me.

SHOP EARLY:  This is not something new for me since FTD. After a nasty Christmas shopping adventure in the "City of No Brotherly Love" 20 years ago, I have always tried to have my shopping done by Thanksgiving. Doing that now, with FTD, helps to allow me to focus on other Christmas things.

SHOP EASY:  I no longer worry about having the absolutely perfect gift for everyone. I find something I am sure they will love, even if it is not #1 on their list.  Nothing has to be perfectIt is something I tell myself constantly since FTD and it actually sinks in once in a while. I also have broken down and asked for lists. I will buy off the list and then try to have at least a small gift not on the list so it can be a surprise. The stress of trying to come up with the perfect gift is way too much for me since FTD. Also, one or two gifts per person is perfectly adequate.

SHOP ONLINE:  I purchased everything online this year. Most business offer either free shipping or greatly reduced shipping fees during the holidays. I also stick to businesses I know will gladly accept exchanges. When I wrap a gift, I include, underneath the item, the original package and the packing slip so the person can take care of the exchange themselves.

WRAP SIMPLY:  I cringed when gift bags started becoming popular and swore I would never use them. I always carefully wrapped and decorated everyone's packages. It would take at least an entire day with Christmas music playing in the background. I enjoyed it. It was one of those traditions. Since FTD, I broke down and gradually started using them. This year, everything is in bags. I had everything "wrapped" in about an hour. They don't look as lovely under the tree, but some traditions have to be modified in order for me to stay sane.

PACE YOURSELF:  I know I have written before about all the cookies I bake for Christmas. The list of people who want a tray of my cookies is quite long. I finally forced myself to pare down the list. All the people who I never hear from throughout the year or those who never reciprocate with anything for us are off my list. I still bake 12-14 kinds depending on how long I can hold up, but I bake less of them. I am actually down to a single recipe's worth for many of them. (Gasp!) Allowing myself time to rest is essential. For instance, I only bake one kind a day, maybe two if they are easier ones. If I push myself harder than that, I will soon be out of commission for days. This is true for more than just baking. The day I wrapped everything? Even though I was done in an hour, that was enough for that day. I felt wiped out.

DECORATING: I have come up with a simple way to decorate the outside of our house. It only involves four of the net lights, one string of lights and dragging two elves up from the basement to display on the front porch. No ladders involved. The most work is hanging the string of lights around the front door. Combined with the tree that can be seen through the front window, our house looks reserved, but just as festively decorated as all the others. As for indoor decorating, I admit I have gone overboard for 40 years. I have 10 large totes full of indoor decor. The past two years and this year, only half of them have even been opened. Again, the house looks perfectly festive without all the others. I can't bring myself to toss anything though! 

FOOD:  Suggestions for this is to keep it simple. It took me three years into FTD to get that message. I select things that don't require a lot of attention. I used to have a big meal both Christmas Eve and Christmas day. I now do not entertain on Christmas Eve at all. It is just my daughter, my husband and I. The meal is light and easy. We would probably do pizza if any place was open. Instead, our new Christmas Eve tradition is hot buttered rum. It is decadent, loaded with calories, but it is festive as we sit in front of the fireplace. The biggest suggestion I have for food, besides keeping it simple, is accept help! Allowing someone to bring side dishes helps enormously. Allowing (just one or two) people, who want to help, into my kitchen is now welcomed. This was really tough for me the first couple years but it got much easier to accept. It also means that I am not too tired to sit down and eat the meal!

REST:  If Christmas is at your house, like ours is, take breaks. Retreat to your quiet space often, even if just for a few minutes at a time. In addition to no longer entertaining on Christmas Eve, I only offer brunch on Christmas day. I have limited how many people who come on that day as well. This year is will be just five of us. After I have explained to others that I can no longer handle more due to my FTD, if they don't understand, that is on them not me. 

VISITING:  I go to other people's homes, or to parties, as rarely as possible. Being in a less familiar environment has become too stressful to enjoy them at all. The other people I would like to visit with over the holidays are invited here, but on a different day.

NO APOLOGIES:  I no longer fuss and apologize to anyone because of the limitations FTD has thrust upon me. I do believe that if they don't understand, they probably shouldn't be in my life right now anyway. The same thing applies to Christmas cards. I have pared our list down below 40. Yes, that is less, it used to be around 100. That's what happens when you have lived in a lot of places. I do not send to those who have not sent one in the past two years, except for family members who I know don't send cards. I also use printed labels. My card list is now on the computer in label format. I used to hate getting cards that way, it seemed too impersonal. Now I realize that they were the smart ones.

Bottom line is what I already said:  Keep it simple, stupid!  No, I'm not calling you stupid, it was me who took a few years too many to get over having to have everything perfect and to insist on keeping up with all the traditions. Guess what? I think I am the only one who misses any of them! I think, just maybe, they enjoy having me be out of the kitchen for at least part of the day.

Yes, I am serious about that glass of wine in my hand. I find a small glass of wine in the evening allows me to decompress and get somewhere close to relaxing.


Saturday, December 2, 2017

Does FTD Really Bring Paranoia?

Paranoia is one of those unwanted gifts that FTD brings along with it. Add in the fact that I spent many years being quick to become paranoid and I was always thinking that I am not good enough, doing enough, that nobody likes me or that I am not smart enough.

Before FTD, I was usually able to talk myself out of these thoughts very quickly. If all else failed, I would create something. Using my creative and artistic talents always snapped me out of it by making me feel good about myself and my creation.  Plus, I made great strides in realizing it was distorted thinking that was causing these thoughts.  I read a book once that used the analogy of someone who lived their entire life in a contained environment and the only mirror was distorted, like a fun house mirror. After living like that for a number of years, no one would be able to convince that person that the mirror was wrong. Instead, s/he would think all the perfect mirrors were distorted and never believe that the new image was correct. It is amazing how much that affected me and helped me recognize my worth. This eye-opening experience was longer than 30 years ago and it changed my life allowing me to be happy, appreciate and enjoy my life. I realized the first 18 years of my life did not need to control the rest of it. That's probably a whole lot more about my formative years than you ever cared to know, but I thought it necessary to explain my past experience with paranoid thoughts.

Then came FTD. Not being able to do things I could before the disease or not being able to do them as well can be totally defeating. Just the other day, someone relayed a conversation that two people had shared. They were wanting to do a get together before the holidays. They both started raving about my cooking and entertaining abilities and thought that, if they asked, I would host the get together. It nearly broke my heart to have to refuse. I used to love doing these things but just cannot anymore for all the reasons I have written about in so many blogs before this.

The friend seemed shocked that I would refuse. Of course, I started trying to explain about my limitations, but the conversation was cut short. They did not, or could not, fathom how hosting something like that is now beyond my capabilities but that, also, would cause me to not enjoy the event and would put me into a tailspin for a few days.

Now the paranoia of FTD comes into play. Since then, I have heard nothing about a holiday get together. Were they offended because I couldn't do it? Did they not believe that I was truthful when I said I couldn't? Were they really not my friends and had been including me so that I would do the work? Or, was no one else willing play hostess and the plans fell apart? If I were to discuss this with anyone, they would brush my concern aside and insist I was reading too much into it. Truth is, this could be the case but FTD won't seem to let my heart believe it.

There are many things that I don't even attempt to do anymore because I know I cannot do them as well as I could before FTD. Not only do I believe that others will judge what I have done and find it lacking, but I do that to myself as well. Is this paranoia or is this just recognizing my limitations.

A common thread of a lot of conversations I have with others who are dealing with FTD is how friends and family don't come around anymore. All those who, when I first diagnosed, had said that we can count on them and they will help us get through it. Those people, I do believe, meant well. I have to believe that they don't follow through because they are uncomfortable being with this new person. FTD has definitely changed some of who I am, how I speak, how I look, and what I can or  cannot do anymore. There are many times I realize that I wouldn't want to spend much time with myself either. So I forgive them. It still hurts, but I forgive them.

Some days, the paranoia will seem to kick in to the point that I wonder if I really do not say the things the things that I think I do. Someone will come up to me and start asking me about something that either needs done or that I should know about. I will try to explain that we had just talked about this the day before and go through the explanation again. This might happen several times. By then, I blow up at them and tell them that I have already explained this several times. I clearly remember the conversation, but they do not. They absolutely refuse to believe we had already talked about it.  All the thoughts start running through my head: am I imagining conversations, am I hallucinating, am I going insane in addition to the FTD? Is it a combination of these things?

I don't think any of these thoughts are correct. I think that a lot of people dismiss everything that I have to say because they truly think that, since I have FTD, I don't have anything of value to say. I also believe that I do ramble on about things, usually things that are of no interest to anyone other than myself. I imagine the people who spend a lot of time with me start to block out anything that I am saying.  Nothing like talking to someone for two minutes and then have them look up and say "Huh? Did you say something?"

This all brings me to question whether FTD really does bring paranoia. Is it paranoia that makes me believe that people don't want to bother spending time with me or is the harsh truth that many people don't want anything to do with someone who can no longer do the things they used to do for them? Are they reluctant to spend time with me because they fear the same thing could happen to them? Am I talking and making no sense when I do without realizing it or does the person just not want to listen? Do they realize my mind is not quite as sharp as it used to be so they deem everything I say as gibberish? Do they ask me about the same things several times because, either consciously or subconsciously, they dismiss what I say before I even say it?

This produces a true conundrum. People. on the other side of all these scenarios, probably totally believe that I am being paranoid and that they are positive they are correct. As for me, are they truly dismissing what I have to say even when I am answering their question or am I paranoid for thinking that way?

I always had a deep interest in Psychology and often wish I had pursued it and actually studied it. If I had, maybe I could figure out the answer to this. In the meantime, I keep coming back to the old adage "Just because you think they are out to get you doesn't mean that they are not."

Sunday, November 19, 2017

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!

  

Saturday, November 18, 2017

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.

Saturday, November 11, 2017

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.


Saturday, November 4, 2017

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.