Depression and FTD

Depression can sometimes feel like an ugly monster who lies under your bed. You are afraid to deal with anything that requires you to get out because, if you do, the monster will get you. Depression can also make you feel like you don't want to do anything or deal with anything. It can also make it so that you cannot feel at all.

Most of the people I know, who either have FTD or are the caregiver for one who does, are on some type of antidepressant. I think all these people should be congratulated that they had the strength to admit to their doctor that they need help and also to recognize that there should be no stigma associated with taking them.

Years ago, I am talking decades, there was a stigma attached to antidepressants. If I remember correctly, most of the problem was that people did not understand how they work. They were nicknamed "happy pills."  This esd not a good description at all. These drugs do not artificially make you happy, they merely allow you to be happy. If you think about it, there is a huge difference between the two. 

I have been on and off anti-depressants for about 25 years. I first needed to have them prescribed after a tragedy within our family.  I was having panic attacks and mistook them for heart attacks. The ER got very tired of seeing me. My doctor got tired of me waking her in the middle of the night. (See how long ago this was, you could actually talk to your doctor during a health crisis in the middle of the night.) There were a few other times during the  years when I needed to rely on them as well. I had started on them again a few years prior to recognizing the symptoms of FTD. Now, I see that it was probably due to the FTD symptoms, I just had not yet seen them for what they were.

When I first started having symptoms of FTD, I got the misdiagnosis of depression from several doctors. As soon as they saw my history of depression, they jumped all over it. Fortunately, as I have written before, my family doctor knew me well enough to know this was something different. When I was struggling to get a proper diagnosis and one of the neurologists we had consulted was telling me that my issue was simply depression, I was furious. I looked him in the eye and told him it came down to the old cliche of "Which came first, the chicken or the egg?" I went on to ask him if he did not think that he would be depressed if he was facing the symptoms and issues of FTD.  Then he prescribed two of the alzheimer's meds and told me there was no need to make a follow up appointment. So, there we had two gross mistakes, not recognizing FTD and prescribing medications that are contra-indicated for the disease.

Since I initially took antidepressants 25 years ago, great strides have been made in the field. There are so many types now, some that I have not even heard of, that address other symptoms associated with depression, such as anxiety. After trying a couple others, my doctor went back to an older one, Wellbutrin, and a very old one, Trazodone. This one isn't even used much for depression anymore because its biggest side effect is excess drowsiness. That, in turn, makes it an excellent medication to aid with sleep disturbances. It was a blessing for me as it stopped me from experiencing the night terrors I had been struggling with. The Wellbutrin had the least side effects of all the ones we tried.

Now, I also mentioned that many caregivers also need to agree to using the antidepressants. With a bit of twisting, it comes back to the question I asked that neurologist, "How can a caregiver not suffer from depression?" It is a 24/7 job with very little reward. It takes its toll on the body and mind, both of which need rest that is not available when you are a full-time caregiver.

It is difficult for most of us to admit we need help for depression. We want to think we are strong enough to tough it out. Many whom I have discussed this with, especially the caregivers, are still reluctant to admit that they need help and are afraid of what people will think of them because they need to use the meds. You know what, I don't care what anyone thinks of me. I know I made the right decision to take them, even way back, 25 years ago. If someone who knows me would pass judgement on me by what medications I need to take, that is not someone I need in my life.

I got tired of bouncing around between lying in bed doing nothing, to having panic attacks, and screaming all the time out of frustration with the disease symptoms. There were probably other signs of depression, but that was seven years ago and I truly don't remember. I just knew that I could not live with myself much less expect anyone else to.

Now, for me personally, I also get great benefit from seeing a psychologist who specializes in dementia cases. She helps keep me on an even keel. For the past couple years, I have been down to seeing her just once a month. Knowing, though, that I can call on her if I need help, or that I can talk to her about it at our next appointment, keeps me from "freaking out."

I was going to write on an entirely different topic this week, but after a couple conversations I had with people struggling whether to take the antidepressant their doctors had prescribed, I thought this might be the time to talk about depression instead.

If you are feeling depressed, don't want to do anything, cannot relate well with others, or even can't find a reason to keep living, please get some help. A good place to start is simply with your family doctor. Why struggle when there is help available. If you are afraid of what someone might think, don't tell them, simple as that. Depression is a disease and is a symptom of FTD, not something to be ashamed of.

 

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.

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.

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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! 

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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.

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.