FTD - The Horror Story

It is nearly impossible for those without FTD to fully understand that our questionable actions are almost always caused, or at least triggered, by our FTD. With no impulse control and no empathy or sympathy or even just thinking about others first, we have done things that we would have never done before the disease took over.  I keep saying "we" because I know that it is definitely true for me and have talked to or read about enough others who have said the same thing.

Sometimes, after the fact, I will realize what I have done and be appalled at my actions. When that happens, I am able to apologize, but most of these things are so repulsive that no apology is going to make much difference. Unfortunately, this part of FTD is difficult to explain and for the people around us to fully understand.

I can remember a few movies that involved someone's body being taken over by something or someone extremely evil. Most of the movies have been horror stories. These movies give me the best way that I can explain FTD and the ways I behave. When I am aware of the things I have done or said, I understand that I would have never, ever, done these actions before I had FTD.

It truly is like someone else has taken over my body. I never spoke so vulgarly or meanly before. I never disregarded other peoples' feelings, I rarely put myself first. I always thought about how my words or actions would affect others. This even included strangers, not just my friends and family.  I know I have used this example before, but one day in the crowded grocery store, I yelled out "What the f**k are all these people doing here?" After we got home and when the stress of shopping was over, I realized what I had done. To this day, when I interact with the employees of that store, I wonder if they heard me. I wonder how little they must think of me. I absolutely had no control over what I yelled, but there is no way to explain it to anyone who doesn't understand FTD.

It isn't just speaking the horrible things, it is also actions. I compulsively purchase things that I do not need. I am obsessed with Thirty-One bags.  I have a a 30" x 24" x 12" box overflowing with them. All the bags are still in the folded state they are shipped in and still in their original packaging. If our entire neighborhood decided to go on a picnic, I  have enough thermal bags to pack everyone's food and enough tote bags to pack everything else.  These bags are high quality and very attractive, but, come on, how many do I think I need? "Think" is the operative word in that statement. I don't think, I just buy. Some good comes from it because I end up donating them to charities and the VFW for raffle prizes and such things.

Now, I will finally get to my point. Today, I read someone's post on Facebook about how dastardly her spouse with FTD has become. All the things she describes are totally FTD. She seems to truly believe that all this is deliberate and he should be able to control himself. In fact, she stated that she avoids the support groups because the other members kept telling her that he "doesn't know what he is doing" or that "It isn't him."

I somewhat agree with her assessment of those two phrases. The one I really don't like is, "It isn't him, it's the FTD." While in essence this is true, I am still responsible for what I do, even though caused by a disease. Of course it is me doing unforgivable things and since part of my brain enables me to do what I am doing, I know it is me doing them. The other side of the coin is that I do not understand that it is wrong to say or do those things. Fortunately, I do not threaten the safety of those around me. I merely make their lives a living hell. I should know, I dragged them there right along side of me. I didn't have to go to any effort and certainly had no thought about the inherent risks or offense. The FTD demon that has taken over my brain, and killed some of the most important parts in the process, pushed me all the way there. The dead and missing parts of my brain are no longer there to filter good from evil.

I try to reduce the risks. I made the conscious decision, on my own, to stop driving. I knew I was endangering others even though I had not had an accident or hurt anyone... yet. I know I should no longer handle power tools and so far have been able to resist doing at least that. I still endanger myself. I forget to take a cane when walking through the yard and fall more often than I would if I remembered. I still burn my hands by forgetting I need to use potholders. I still stick my finger into boiling water or cooking food to see if it's hot yet.

If my brain is not capable of preventing myself from doing such stupid things, how can we blame it  and its dead brain cells, for doing all the emotionally hurtful things? It is a difficult concept for those who have not experienced FTD to grasp. Those who do understand care enough to "get it" are my heroes.

Since it is Halloween week, I will go back to the horror movie, Living With FTD, is the body responsible for this person's actions, or is it the brain that has possessed the body to blame? Is it the part of the brain that is still intact, or is it the part of the brain that is nothing but dead brain cells? FTD truly is a horror story.

How Can Noise Become Pain?

FTD destroys one's feelings of empathy and sympathy. It also destroys one's impulse control. What does this mean? It means I am a difficult person to deal with and can be downright ugly sometimes. In truth, I don't even like myself much anymore. I know I would not choose to live with  someone like me, if given a choice.

If I am carrying on a conversation with someone and disagree with what they are saying. I will interrupt and tell them they are wrong, stupid or a downright idiot. In today's age of a huge divide in our country over political issues, this can cause a scene and hurt feelings very quickly. It doesn't even have to be something as serious as politics, it can be anything at all, the weather, the time of day anything even if it is trivial and stupid.

For example, people are often telling me how much they like Fall. When someone is saying that, even before they are done, I may be yelling at them about how horrible Fall is and how can they possibly like it. I really do feel that way. I detest Winter and when Fall begins, I know Winter is not far behind. Oh, and I used to love Fall. The problem lies with my lack of impulse control. If I think it, I say it. I don't have the ability to control my words, to speak softly or even to just walk away. People who have known me for a long time often tell me that I have always done that, but it isn't the same thing. 

It used to be that I was very free about expressing my opinions and quick to begin debating issues. I certainly admit to that, but this is different. FTD is interrupting you and screaming at you that what you are saying is stupid and then lashing out again when you act angry or hurt. I truly try to fight this. If I hear someone talking about politics, I try to remember to walk away or ask them to change the subject. I can not explain how difficult this is to do. 

Conversations are one aspect of this, but there is so much more.  Sounds can cause the same kind of reaction. I am not talking about a large amount of noise like we encountered in a restaurant last week where we had to ask for our meals to be packed up to go before I started screaming at everyone to shut up. It can be any noise, especially if there is more than one noise going on at the same time. One of the worst things for me is that my husband has a habit of ripping junk mail into a few pieces before tossing it in the trash. He also rips packaging apart so that it takes up less room in the bag. The noise of this totally overwhelms all of my senses. My brain causes me to literally feel these noises as pain. I must stop whatever I am doing as I am unable to focus on anything. My entire being is trying to cope with the pain that should not be.

It's difficult to explain this. It is as if every nerve that is capable of feeling pain is triggered all at once. I know it is just noise, but my brain interprets it differently since I have FTD. This is accentuated if I have music playing or there is any other source of noise at the same time. The sense of pain is even more acute. When I am causing the noises, my brain seems to understand more clearly that it is just noise from what I am doing.

When my husband is making these noises, I start screaming for him to stop, over and over. The unfortunate thing is that he cannot remember that it bothers me, after all, how can noise trigger pain? I have no clue, I just know it does. I have written many times about how it is necessary to limit myself to "one thing at a time" if I want to survive the day. It is closely related to this noise issue. 

Whether it be screaming at someone because I disagree with them or at simple noises, I should be able to get over it. Something that took less than a minute to occur should be easy to set aside. This doesn't happen with FTD. The stress of a simple event like this stays and builds in my body and brain. It becomes a chain effect as every frustration through the entire day just builds and builds. At least once during that day, I will explode and run off to my room and hide from everyone and everything. I become unable to do anything constructive, comply with any request or even to think clearly.

So often, caregivers will complain about the person with FTD not cooperating, being disagreeable and nasty. The first thing I usually suggest is to get rid of any noise that you can. Turn off the radio or television and anything else that is making noise. If this isn't possible, take them to the spot where they are comfortable. For me, that is the room that is my bedroom, office and place to chill. 

Most people don't stop to think about all the noise pollution around us. We are so used to appliances, that we no longer hear the refrigerator running, the heat or air conditioning, the washer or dryer, or noises filtering in through open windows. To some of us with FTD, these noises can be totally overwhelming and put our entire mind and every nerve on edge. This is enough to make us downright miserable and nearly impossible to try to deal with.

It's not just noise, it can be the temperature or if the air vent is too close and blowing on them. The first thing I do when I get into the car is to close the air vents in front of me. The air blowing on me overwhelms all of my senses. It all boils down to this disease of FTD.

I hate this disease. It is cruel and heartless. It steals so many actions of one's brain, yet doesn't steal the memory. We remain fully aware of what is happening to us, unlike other forms of dementia. An example that pops into my mind is the swallowing issues that are common in FTD. This is usually an issue during late stages of Alzheimer's Disease, but by then it appears that they are not fully aware that it is happening. With FTD, we know it is happening, we know the pain involved, we know how difficult it is to maintain a healthy diet while not being able to swallow correctly or at all. We also know how frightening it is.

I realize this blog entry, and the last few, have been fairly negative. I noticed that it has actually affected the number of those reading the entries. It is so hard to be positive more and more of the time as the disease worsens. I try to hide the crappy stuff from everyone and try my darnedest to find the positive. Some days are harder than others. But, isn't life that the way for all of us. 

Educating the Caregivers

For someone with FTD, everything we attempt to do quickly becomes a challenge. Everything takes much more effort than it did pre-FTD and can leave us totally exhausted. Throw in a few curve balls, and the task quickly becomes not achievable and may leave those of us with FTD in worse shape than we were going into the activity. Yesterday was a great example of that for me.

Two or three months ago, I was granted permission to set up a display table on FTD at a local conference being held by the Geriatric Interest Network. Since I  had just done a display at our local mall and this one would be smaller, I believed it would be much easier.

Of course, things don't usually go that way. The person coordinating the conference was suddenly no longer the one in charge and her replacement had never coordinated one of their conferences before. It was no longer clear whether the permission to display would still be granted. After waiting a couple weeks, it was finally approved and the fee to display was again waived. The coordinator and I touched base a few times and the day before the event, she called and told me that I could definitely have some space on the display table. 

Problem! I have a display board and enough materials to fill an entire table with no room left over. As I usually do, I started to panic and then realized I was defeating myself. I decided that even if I could only display a portion of the AFTD's information, that was more than would have been there previously. This organization sponsors conferences for both professional and non-professional dementia caregivers each year, for a total of four a year. I really needed to be as cooperative as possible so that we could have the opportunity to display at more of their conferences. 

I am not known for my calm and laid-back personality (to put it mildly), but this time I was and there was a reward for this phenomenon. When we arrived (My sister is also a volunteer for the AFTD), the original coordinator was there right beside the new one. They had an entire long table set up for us right next to their registration table and bent over backward to make us comfortable. The last part of their conference was a healthy lunch and they insisted we join them. We felt totally welcome and part of the event.

The conference was held at a local rehab hospital, Health South. They closed their employee cafeteria to accommodate the conference and could not have been more helpful. The best part was, that since the cafeteria was closed, the employees had to go into the kitchen area to pick up their lunch "to go." The way to the kitchen was right past where our display was so we not only had exposure to everyone attending the conference, but also most of the employees.

Many staff members stopped by and checked out the display and many picked up some information or asked questions. The best and worst moment of the event was when one of those staff members stopped by and was closely reading my display board. I started picking up some printed info to give her and she turned to me with a look of joy and sorrow.

This woman started saying, "This is me, this is me! I keep telling the doctors there is something wrong, but they won't believe me." Considering this is the town where all I received were three incorrect diagnosis, I was not surprised. We gave her all the information we could, along with the hotline number for the AFTD. She gave me an awesome hug in return. My sister and I were so happy that we were able to help her. We were also broken hearted that one more person most likely has the disease. 

I am guessing she was in her mid to late 50's. I don't know what her position is at the hospital, but she definitely was someone I would love to have caring for one of my loved ones. I pray that we are wrong and that there is a much better answer for her symptoms than FTD so that this awful disease does not have the opportunity to steal one more valuable life.

The conference itself strayed from their usual format of having healthcare professionals come in and speak about dementia. This time, it was all about "caring for the caregivers." They had massage stations, reiki stations, yoga and more. All things to help the caregivers learn to relax and take better care of themselves so that they are better able to care for their loved one. 

I know I often write about how important the caregivers are and wonder whose role is harder, the one with FTD or the caregiver. It was wonderful to see this organization recognizing that and providing some comfort and reminding the caregivers how important it is to take care of themselves so they are able to take care of their loved one. I was so happy to see the direction they had taken for the event and I loved seeing so many relaxed and smiling caregivers as they were leaving at the end.

I hope the Geriatric Interest Network appreciated what we did as well because I hope to be welcomed back again for their next conference. 

Of course, the event took its toll on me. I was totally exhausted after the six hours. My FTD symptoms worsened afterward even though I was so happy. It continues to amaze and frustrate me how anything can cause a setback. Fortunately, this time, I should bounce back after two or three days of extra sleep and less activity.

If you are a caregiver, please remember to take care of yourself first whenever possible.

Financial Impact of FTD

I received some very interesting information today from The Association for Frontotemporal Degeneration. They co-funded and co-authored a study on the financial and social impact of FTD. The entire study will be published in Neurology magazine's Nov. 14 issue.

The first thing that caught my interest is the revelation that families dealing with FTD face an economic burden of around $120,000, roughly half that of families dealing with Alzheimer's Disease. This brings the obvious question: Why?

Unfortunately, most doctors are still unfamiliar with FTD. It is often misdiagnosed as Bipolar Disease, depression or another mental illness. They also discovered that it takes, on average, nearly four years to get a correct diagnosis. That means fours years of bouncing around to different doctors, trying to find an answer. It can also mean the expense of multiple medical testing that may be unnecessary, incorrect medications and doctor visits.

FTD most often strikes before the age of 60. Because of the younger age, it is very likely that, prior to diagnosis, both the one with FTD and their spouse were still working and contributing to the household income. FTD compromises the employment of many with the disease. Many are discharged from their employment or come to the realization, on their own, that they can not continue to do their job. Unless they are fortunate enough to have the best of short and long term disability insurance and are eligible for early retirement benefits, the household income is reduced drastically. Trying to survive only on Social Security Disability Insurance is nearly impossible.

The usual caregiver for someone with FTD is the spouse, who  is most likely also still employed at the time of diagnosis. In many instances, the spouse must also give up their job in order to provide care for their loved one. If not, there are many expenses incurred for other methods of providing care.

In the study, a year prior to diagnosis, overall household income ranged from $75-95,000. A year after diagnosis, that income had declined nearly half. If the care-giving spouse is still employed, the study found that 37% of caregivers reported not being able to continue working, If they were still working, they reported a median loss of seven full work days over the past four weeks because of issues involving FTD. Two thirds of caregivers also reported declines in their own health. The stress of being a caregiver is enormous.

The financial burden is not just from reduced household income for both the one with FTD and the caregiver, but also from drastically increased medical expenses. Even with the best medical insurance, co-pays and non-covered services can quickly add up to significant amounts.

In many cases, the person with FTD has made poor financial decisions that can also add to the financial burden. If placement into a care facility, such as a nursing home, becomes necessary, financial resources are quickly consumed.

If I may, I will step beyond the study of the financial impact of FTD. Most everyone has dreams of retirement and have many things they are looking forward to once they do. You may call it a "bucket list" or just plans to finally kick back and relax. Perhaps the plans are to travel, perhaps to buy a fishing boat or spend more time on the golf course. FTD steals those plans from the one with FTD, the primary caregiver and perhaps extended family. Plans to spend and enjoy time with the grandchildren become very difficult if not impossible.

With FTD, the memory is usually spared until the end stages and they are fully aware of what is happening. They know what they are missing out on and that their plans for retirement activities may now be impossible. The caregiver, in addition to this being a full time job, 24/7, they usually are forced to give up their own dreams of life in retirement.

All this information explains one way that FTD can force everyone involved into a period of grief, way before the life actually ends. This is another issue that I will write about another time. We don't need another depressing topic on top of the financial burden.