Frontotemporal Dementia (FTD) is it's own beast. No two people have the same journey in the same time stages. For my husband, we noticed he was acting out of character probably 6+ years ago. It started with some bizarre things, like being way too intimate and familiar with waitresses and cashiers. He became loud, obnoxious, outgoing, which was odd from a man whom I had always known to be shy, quiet, and one to avoid the spotlight. He lost his motivation, drive, and passions. As the years have passed, his symptoms have become much more evident and greater. As I did a lot of research, I looked for what the different stages looked like and found some information, but not a great deal. With that in mind, these are the symptoms my husband is now experiencing:
Apathy
Anxiety (extremely high)
Anger
Agitation
Irritability
No Insight and a Lack of Understanding (sometimes no memory) of his Behavior
Self Centered, downright Narcissistic sometimes, Selfish
Mean, Emotionally and Verbally Abusive
Overuse of Alcohol (hides, lies about it)
No Tolerance
Frightened
Distrustful
Confused
Forgets Words/Mixes words up/Makes up Words
Hyper focused on trivial things
Trouble with temperature changes (too hot/too cold)
Inattention
Paranoia
Cognitive/Executive Functioning Troubles
Critical of Others
Very Outspoken and Loud
Extreme Political Opinions and Rigid about those Opinions
Mood Changes (rapid mood swings)
Trouble with time/date (i.e. says something happened last week when it was yesterday)
Disinterested in Other's Problems or Opinions
Talks Less
Chokes sometimes/Coughs/Gags
Impatient
Loss of Logic
Hoarding (only certain things)
Weakness, Loss of Strength
Occasional Shuffling Gait
Unsteady
Shakes sometimes
Craves Carbs (before this, he only wanted meat and veggies)
Extreme Personality Changes
Delusions
Repetitive Movements
Short Term Memory Difficulty
Blackouts
No Motivation
Loses Things/Careless
Does not Express Affection (from a man who was previously very affectionate!)
Pouts/Tantrums
Hostility
Some Long Term Memory Lapses
Grunts (has done this a few times)
Answers questions with a sentence that makes no sense
Overwhelmed in Public
Overreacts or Under Reacts
Tactless
Rude
Weight Gain
Flat/Blank Facial Expression
Poor Hygiene (fights the prompt to shower) Wears the same clothes for a week (crazy hair!)
Lies/Hides things/Rummages around house
Vivid Nightmares
Sleep Talking/Acting Out
Staring
Difficulty Performing smaller tasks/chores
Restless
Little to No Sympathy/Empathy/Compassion
Can be Aggressive but nothing Physical (hope it never happens!)
Crying/Sadness
No Enjoyment of things that used to bring pleasure or entertainment
Some Incontinence (double)
He failed to recognize me once (said, "who are you? I don't know you!")
Rarely Smiles
Confusion
Trouble choosing clothing to wear
As for where in the progression of FTD this falls, it's anyone's guess. It is so cruel to have to watch your sweetheart go through this disease knowing you can do nothing. PLUS, you have to be at the receiving end of abuse that really is no one's fault. It makes you question your own purpose and sanity. You seriously want to run away! Please pray for a cure!
Bonus moment of the evening: My husband decided he wanted a meatball sandwich from Subway for dinner. He said he was going to put those "hair things" on it at home. I said hair things? He said yes, those round hair things in a jar..... (pepperoncinis).
Monday, July 29, 2019
Saturday, July 27, 2019
Booze and Words
This past week has been, well, challenging. As you know, Frontotemporal Dementia (FTD) can cause a lot of out of character, odd behavior. My husband has turned into a binge alcoholic. When we started dating over 20 years ago, the man did not drink at all. He said it turned his stomach. Well, I guess in a way it still does because he will drink until he vomits. Last weekend was a nightmare. He was drinking whiskey, his drink of choice now, 24/7 for 4 days. He yelled at me, was rude to me, wanted a divorce, accused me of "ulterior motives", stared at me for long periods of time and said he wanted me uncomfortable, called me a bitch over some perceived slight, was loud and obnoxious and in my face, kept saying that I "better get things straight" and "not going to discuss it with you, end of story" over what I have no idea because he "wouldn't discuss it", and was generally just angry and irritated.
After his whiskey supply dwindled, he slowly came back around out of this alcohol induced rage. This is when it was decided that he can no longer have any alcohol as it is making a very hard situation even worse. Not sure how we are going to accomplish this, but it needs to work. My theory is this - that the brain is shrinking which causes inhibition, apathy, paranoia, confusion, memory loss, etc., and add the alcohol which also causes inhibition, confusion, etc. and it's like there is no brain functioning in there. So think of an angry drunk x10 and the poor FTD patient has no control over this. Not to mention, he rarely eats while drinking this much. I cannot imagine the effects on the body, let alone the brain, are very good. Plus, his meds are not as effective when combined with such alcohol excess.
I've also noticed that my husband is having a harder time with words. He's also speaking less and wanting to leave the house less. In fact, we went to run an errand today (his errand) and I wanted to stop at Walmart after. We stopped and after about 10 minutes of shopping he was ready to go. When he was well, he wanted to go go go, always to the mall, to look at new homes, to go to a fair or festival, camping, anything. Oh, and he has been shuffling his feet a lot. This is something new I have noticed. Anyway, back to the words. I asked him today what that spot between the lanes on the highway was and he thought for a minute and said "the meridian". This is one I have been noticing he uses incorrectly lately. I said oh, it's the median. He looked at me very confused and said "that's a word? I'm pretty sure it's meridian". I found this particularly odd as my husband has always been very much into astronomy and the term meridian is used to describe when the sun passes a point on the Earth at noon. He was familiar with the use of the word and would know the median is not the meridian.
Another word problem I noticed today was on our stop at Walmart. He was looking at the bags of Chex Mix and reading the flavors. The blue bag says "traditional" and "savory". He looked at me, with a very confused look, and asked "what does savory mean"? I answered that it meant that bag of mix wasn't sweet, and instead was more of a salty flavor. He replied "oh I see, it has no flavor". I then went further to explain that it had flavor other than just salt and it was much like a cookie (sweet) vs. popcorn (savory). He honestly could not recall the word savory. This has got to be frustrating for him.
Wednesday, July 17, 2019
Traveling with FTD
We recently went on a road trip so I could visit our new gorgeous grand baby, and my husband could visit his ailing father. I was highly worried about this trip, but my daughter really wanted to see the new baby. She is very excited to be an aunt for the first time!
For the most part, the trip was fine, mostly due I think to the new medication my husband's neurologist put him on. It is an antipsychotic. Boy, that sounds scary. However, the anger/irritation/agitation/anxiety seems to be dramatically reduced on this drug. The difference is truly remarkable so far. I say "so far" because it's hard to trust that things will be better for very long. In any case, there was a bit of a hiccup. While my husband stayed the week with his family, and I visited the new baby and my family, my husband forgot to take this new drug. I'm thinking maybe we need a large pill organizer so he can be sure to take all of his prescribed drugs.
The effects of not taking the new antipsychotic were not fully shown until last night, 2 days after getting back. Last night my husband was lying on our bed and he grabbed my body pillow which I use to prop up my iPad and watch Netflix. My iPad went flying and he clutched the pillow firmly, while appearing to be sleeping. I carefully tried to remove the pillow and he started yelling at me, being weird and abusive. I try very hard to be calm with him but he accused me of blowing things out of proportion, yelling at him, and being rude. These things are very concerning to me because it's like he is being delusional about what is actually happening. After this, he grabbed his blanket and spent the night on the couch. It's very bewildering. It seemed like he may be experiencing another blackout period.
This morning after asking how his mood was, he was still hostile but did apologize after talking for a few minutes. He said I was being incredibly rude, loud, and condescending to him about the pillow. He did remember everything that had happened so it was not a blackout. We talked about how I was very careful to be calm and non confrontational and came to the conclusion that his brain was lying to him. This is very concerning but also interesting in learning about how Frontotemporal Dementia can affect the brain. It must be difficult for my husband to believe that people who should love him are being mean, rude, and condescending. This behavior makes it very hard to talk and relate with him sometimes.
For the most part, the trip was fine, mostly due I think to the new medication my husband's neurologist put him on. It is an antipsychotic. Boy, that sounds scary. However, the anger/irritation/agitation/anxiety seems to be dramatically reduced on this drug. The difference is truly remarkable so far. I say "so far" because it's hard to trust that things will be better for very long. In any case, there was a bit of a hiccup. While my husband stayed the week with his family, and I visited the new baby and my family, my husband forgot to take this new drug. I'm thinking maybe we need a large pill organizer so he can be sure to take all of his prescribed drugs.
The effects of not taking the new antipsychotic were not fully shown until last night, 2 days after getting back. Last night my husband was lying on our bed and he grabbed my body pillow which I use to prop up my iPad and watch Netflix. My iPad went flying and he clutched the pillow firmly, while appearing to be sleeping. I carefully tried to remove the pillow and he started yelling at me, being weird and abusive. I try very hard to be calm with him but he accused me of blowing things out of proportion, yelling at him, and being rude. These things are very concerning to me because it's like he is being delusional about what is actually happening. After this, he grabbed his blanket and spent the night on the couch. It's very bewildering. It seemed like he may be experiencing another blackout period.
This morning after asking how his mood was, he was still hostile but did apologize after talking for a few minutes. He said I was being incredibly rude, loud, and condescending to him about the pillow. He did remember everything that had happened so it was not a blackout. We talked about how I was very careful to be calm and non confrontational and came to the conclusion that his brain was lying to him. This is very concerning but also interesting in learning about how Frontotemporal Dementia can affect the brain. It must be difficult for my husband to believe that people who should love him are being mean, rude, and condescending. This behavior makes it very hard to talk and relate with him sometimes.
Saturday, July 6, 2019
Oh, The Bizarre Stuff
Frontotemporal Dementia is not kind. It's not kind to the one suffering and it's not kind to their family. Last night was not good. This morning was worse.
I wish I knew what caused some days to be worse than others. Some days my husband doesn't seem to be there at all. Last night was a blur of trying to sleep through him turning on the bedroom light, leaving the master bathroom light and fan on, and him trying to figure out how to put a blanket on himself. He seemed to do everything but cover himself with his own blanket. He tried to steal my blanket repeatedly and then bark at me when I needed it back. He pulled up the comforter that was folded under our feet and pulled out all the sheets. He managed somehow to get the top sheet pulled up the wrong way and slept (if he slept) like that. At one point when I needed my blanket back he raised his voice and said "who are you?" "I don't know you!". It's difficult to tell if he was serious or being a turd. Is he failing to recognize me?
This morning he had arranged for some landscapers to come to our home and straighten up our yard. They arrived at 7 am and didn't leave until after 11 am. This seemed to be very taxing and overwhelming to him. It's like my husband is struggling to try and be the productive man he used to be, and failing miserably.
Halfway through the landscapers being here, my husband had an episode of incontinence. Now, I am being brutally honest here, but this is our life. This is where things really started to go downhill. He yelled and cursed at me like it was my fault he soiled himself, the floor, the rugs, the smears down the bathroom sink. After I cleaned, sanitized, and washed everything I saw that he was walking around without any bottoms on. No underwear, no pants. He then went out to our pool and got in naked. Keep in mind the landscapers were still working on our yard. So I (walking on eggshells of course) asked if the landscapers were still around and he said no, they left. Of course, they had not left, nor had they been paid for the day.
Fast forward a little after I had convinced him that the landscapers were still here, and he walks into the house naked. This moment was terribly puzzling to me. He sat on the bed and kept picking up various articles of clothing and acting like he had no idea what they were. He attempted to put a shirt on as underwear. He put on an actual pair of underwear then put on a second pair before taking them off. He managed to get a tank top, socks, and flip flops on.... still no bottoms. While this was happening the landscapers were ringing the doorbell (because they were done and looking for the day's payment) and my husband was cursing and yelling at me to not get the door. Very stressful!! Still struggling to put on clothing, he managed to get a pair of pants on.... yay!...then put on a second shirt, a polo shirt, backwards over his tank top. It was about this time I realized that the money for the landscapers was in his poopy pants from earlier, sitting in the washer. The landscapers I am sure thought it was very bizarre that he came to the door with 2 shirts on, one backwards, to pay them.
What happened next was a series of condescending profanity and threats toward me. He told me to get back in my room and stay there, through a series of terse profanity and putting his shoulders toward me in a threatening way. Always trying to be calm, I told him firmly he cannot speak to me like that. It never works, but I try. I think the hardest thing is dealing with the awful mean hurtful way he treats me sometimes and the horrible things he says to me, and trying to remember that his brain is shrinking and causing the behavior. How does one continue to be a caretaker, day after day, with the constant belittling, rude comments, and delusional thinking taking center stage?
UPDATE: Days later and he does not remember any of this behavior. I am sure it is somehow related to the extreme anxiety he experiences. Perhaps the landscapers were overwhelming. These blackouts are happening more frequently.
I wish I knew what caused some days to be worse than others. Some days my husband doesn't seem to be there at all. Last night was a blur of trying to sleep through him turning on the bedroom light, leaving the master bathroom light and fan on, and him trying to figure out how to put a blanket on himself. He seemed to do everything but cover himself with his own blanket. He tried to steal my blanket repeatedly and then bark at me when I needed it back. He pulled up the comforter that was folded under our feet and pulled out all the sheets. He managed somehow to get the top sheet pulled up the wrong way and slept (if he slept) like that. At one point when I needed my blanket back he raised his voice and said "who are you?" "I don't know you!". It's difficult to tell if he was serious or being a turd. Is he failing to recognize me?
This morning he had arranged for some landscapers to come to our home and straighten up our yard. They arrived at 7 am and didn't leave until after 11 am. This seemed to be very taxing and overwhelming to him. It's like my husband is struggling to try and be the productive man he used to be, and failing miserably.
Halfway through the landscapers being here, my husband had an episode of incontinence. Now, I am being brutally honest here, but this is our life. This is where things really started to go downhill. He yelled and cursed at me like it was my fault he soiled himself, the floor, the rugs, the smears down the bathroom sink. After I cleaned, sanitized, and washed everything I saw that he was walking around without any bottoms on. No underwear, no pants. He then went out to our pool and got in naked. Keep in mind the landscapers were still working on our yard. So I (walking on eggshells of course) asked if the landscapers were still around and he said no, they left. Of course, they had not left, nor had they been paid for the day.
Fast forward a little after I had convinced him that the landscapers were still here, and he walks into the house naked. This moment was terribly puzzling to me. He sat on the bed and kept picking up various articles of clothing and acting like he had no idea what they were. He attempted to put a shirt on as underwear. He put on an actual pair of underwear then put on a second pair before taking them off. He managed to get a tank top, socks, and flip flops on.... still no bottoms. While this was happening the landscapers were ringing the doorbell (because they were done and looking for the day's payment) and my husband was cursing and yelling at me to not get the door. Very stressful!! Still struggling to put on clothing, he managed to get a pair of pants on.... yay!...then put on a second shirt, a polo shirt, backwards over his tank top. It was about this time I realized that the money for the landscapers was in his poopy pants from earlier, sitting in the washer. The landscapers I am sure thought it was very bizarre that he came to the door with 2 shirts on, one backwards, to pay them.
What happened next was a series of condescending profanity and threats toward me. He told me to get back in my room and stay there, through a series of terse profanity and putting his shoulders toward me in a threatening way. Always trying to be calm, I told him firmly he cannot speak to me like that. It never works, but I try. I think the hardest thing is dealing with the awful mean hurtful way he treats me sometimes and the horrible things he says to me, and trying to remember that his brain is shrinking and causing the behavior. How does one continue to be a caretaker, day after day, with the constant belittling, rude comments, and delusional thinking taking center stage?
UPDATE: Days later and he does not remember any of this behavior. I am sure it is somehow related to the extreme anxiety he experiences. Perhaps the landscapers were overwhelming. These blackouts are happening more frequently.
Wednesday, July 3, 2019
There Are a Lot of Bad Days
Frontotemporal Dementia is a roller coaster you are forced onto without your permission. A wild ride that jerks you around and makes you feel out of control, nauseated and dizzy. Since I am only the partner of the one with the disease, I can only speak for myself, but I know my husband feels the same. It's written all over his face, and in every word he speaks.
My husband struggles with behavioral and social symptoms. He is emotionally abusive, yet he doesn't understand that his behavior is a problem. Walking on eggshells has become my norm. The neurologist recently prescribed an anti-psychotic drug to help with the agitation and irritation that my husband experiences and it has seemed to help. So much so that my husband has been able to smile and enjoy funny moments with me without the normal tense sarcasm, condescension, snippy rude comments, and in my face put-downs that I am usually met with. It has also helped him to sleep better.
I try to have hope, but today is a bad day. He didn't sleep well last night and it seems to be taking its toll. Today is the grumpy, tense, pouty, aggressive side of bvFTD. Today is the bvFTD speaking. Today the bvFTD says to my husband that nothing is wrong with him, everyone is against him and we all have a problem, not him. Today the bvFTD tells him to be passively aggressive against me. When bvFTD brain is in charge, I can do nothing right. The front of our brains control personality, behavior and language. When these lobes are compromised or shrink, lots of symptoms can be confused as psychiatric problems, but the patient cannot change or control these symptoms, and often cannot even understand that there is a problem.
As I write, I am hoping that it will be as therapeutic for others experiencing dementia, as it is for me. I've looked long and hard for personal stories of this disease and while there are some, there doesn't seem to be a full intimate look at people, families, living with bvFTD. I want others to know what this disease fully looks like for us in all its struggles, good and bad.
My husband struggles with behavioral and social symptoms. He is emotionally abusive, yet he doesn't understand that his behavior is a problem. Walking on eggshells has become my norm. The neurologist recently prescribed an anti-psychotic drug to help with the agitation and irritation that my husband experiences and it has seemed to help. So much so that my husband has been able to smile and enjoy funny moments with me without the normal tense sarcasm, condescension, snippy rude comments, and in my face put-downs that I am usually met with. It has also helped him to sleep better.
I try to have hope, but today is a bad day. He didn't sleep well last night and it seems to be taking its toll. Today is the grumpy, tense, pouty, aggressive side of bvFTD. Today is the bvFTD speaking. Today the bvFTD says to my husband that nothing is wrong with him, everyone is against him and we all have a problem, not him. Today the bvFTD tells him to be passively aggressive against me. When bvFTD brain is in charge, I can do nothing right. The front of our brains control personality, behavior and language. When these lobes are compromised or shrink, lots of symptoms can be confused as psychiatric problems, but the patient cannot change or control these symptoms, and often cannot even understand that there is a problem.
As I write, I am hoping that it will be as therapeutic for others experiencing dementia, as it is for me. I've looked long and hard for personal stories of this disease and while there are some, there doesn't seem to be a full intimate look at people, families, living with bvFTD. I want others to know what this disease fully looks like for us in all its struggles, good and bad.
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