June 2020 Symptoms

It's been awhile since I have written. Being the full time caregiver to a spouse with FTD, and also responsible for yourself, your home, and everything they used to do is beyond overwhelming and time consuming. I've been trying to keep some portion of myself, but more and more I find that that is a losing battle. The list below is from approximately a year ago, with the bold type being new and/or changed symptoms that are currently exhibiting. Things like anger, agitation, and irritability have been controlled to some degree on medications, but they are still present.

Apathy Ongoing
Anxiety (extremely high) Ongoing
Anger Ongoing
Agitation Ongoing
Irritability Ongoing
No Insight and a Lack of Understanding (sometimes no memory) of his Behavior. Increasingly having no memory of things he has said and/or done in moments of irritation and anger.
Self Centered, downright Narcissistic sometimes, Selfish Has decreased overall, but still present
Mean, Emotionally and Verbally Abusive Ongoing
Overuse of Alcohol (hides, lies about it) I believe we have gotten this under control as he has little to no way of getting alcohol.
No Tolerance Ongoing
Frightened Ongoing
Distrustful Ongoing
Confused Very hard for him to make decisions, needs prompting.
Forgets Words/Mixes words up/Makes up Words Ongoing
Hyper focused on trivial things Ongoing
Trouble with temperature changes (too hot/too cold) Ongoing
Inattention Ongoing
Paranoia Little issues get blown out of proportion very often
Cognitive/Executive Functioning Troubles Has become worse, reaction times are greatly delayed
Critical of Others Ongoing
Very Outspoken and Loud Ongoing
Extreme Political Opinions and Rigid about those Opinions Has gotten worse, if such a thing can happen!
Mood Changes (rapid mood swings) Mirrors emotions of those around him
Trouble with time/date (i.e. says something happened last week when it was yesterday) Sees the time on the digital clock incorrectly, such as, thinks it is 4 am when the clock says 12 am.
Disinterested in Other's Problems or Opinions Ongoing
Talks Less Speaks markedly less, has very short answers on Social Media (i.e. "lol" or "yes" with no expansion)
Chokes sometimes/Coughs/Gags Happens more often.
Impatient Ongoing
Loss of Logic Definitely seems to be worse.
Hoarding (only certain things) Trash hoarding has increased.
Weakness, Loss of Strength Has gotten quite a bit worse.
Occasional Shuffling Gait Always shuffles when walking.
Unsteady Reports that he feels like he has noodle legs that are going to give out. Has not fallen that I am aware of.
Shakes sometimes Ongoing
Craves Carbs (before this, he only wanted meat and veggies) Ongoing
Extreme Personality Changes Ongoing
Delusions Ongoing
Repetitive Movements Ongoing
Short Term Memory Difficulty Forgets a lot mid-sentence. Does not remember holidays and events that happened in the past few years.
Blackouts No evidence that this is still happening since alcohol is gone.
No Motivation Moves about even less, wants to do even less.
Loses Things/Careless Ongoing
Does not Express Affection (from a man who was previously very affectionate!) Ongoing
Pouts/Tantrums Pouting has increased.
Hostility Ongoing
Some Long Term Memory Lapses He reports to me that this is worse.
Grunts (has done this a few times) Have not noticed this lately.
Answers questions with a sentence that makes no sense Is speaking less, so less communication.
Overwhelmed in Public Avoids going out more and more.
Overreacts or Under Reacts Ongoing
Tactless Ongoing
Rude Ongoing
Weight Gain Ongoing
Flat/Blank Facial Expression Ongoing
Poor Hygiene (fights the prompt to shower) Wears the same clothes for a week (crazy hair!) Notices stains and food on his clothing and doesn't care, continues to wear the clothing.
Lies/Hides things/Rummages around house Ongoing, although cannot cover up anything any longer as lies are blatantly obvious.
Vivid Nightmares ?? Sleeping less and less at night, so not sure.
Sleep Talking/Acting Out Ongoing
Staring Frequently stares up at nothing.
Difficulty Performing smaller tasks/chores It has become nearly impossible for him to do much at all.
Restless Wandering has been contained lately from the back patio to the living room or bedroom and not nearly as frequently.
Little to No Sympathy/Empathy/Compassion Ongoing
Can be Aggressive but nothing Physical (hope it never happens!) He has grabbed my arm a few times and shoved me out of the way a few times, but not lately.
Crying/Sadness Ongoing
No Enjoyment of things that used to bring pleasure or entertainment Wants to "mentally" plan and do things but can't, gets frustrated, and doesn't seem to enjoy anything
Some Incontinence (double) Ongoing
He failed to recognize me once (said, "who are you? I don't know you!") Has not happened lately.
Rarely Smiles Ongoing
Confusion Ongoing
Trouble choosing clothing to wear Ongoing
Sometimes needs assistance with showering, hygiene products, and dressing.
Cannot shave 100% successfully with the electric razor, although it will pass.
Increased difficulty hearing.
Increasing negativity.
Consistently spills drinking cup, needs a no-spill cup.

I Hate This Disease

In his career, my husband was a building contractor. He had his general contractor's license and ran his own finish carpentry business, doing beautiful work in custom homes. He even won awards for his craftsmanship of custom railings, trim work, and stairs. Once, a home owner wanted a custom bed with a trundle for their daughter. He built a beautiful bed for them.

Tonight I convinced him to go out and walk the dogs with me. While walking, we passed a home in our neighborhood that has been for sale for longer of a time than most homes around here. I pulled the flyer out of the little plastic box on the for sale post and said 'oh, it has a tandem garage'. My husband looked puzzled and said 'what's that mean?'. He didn't recall what a tandem garage was so I explained it to him and still puzzled, said 'I don't understand' and kept walking. He used to love tandem garages and want one.

Such is FTD. I hate this disease.

Yesterday he pulled a Triscuit cracker out of its box and asked me what it tasted like. I told him they are salty, not sweet like the Fiddle Faddle he eats non stop. He seemed confused and kept saying 'salty, I had no idea'. He's had confusion before about "salty" and what "savory" means.

I hate this disease.

My Sweet Husband is Gone

My first husband was abusive. Not physically, other than hitting things around me, and throwing things by my head, but emotionally and verbally. He told me I would be pretty if I lost weight, that I was lazy, that I was a mooch, that I had no value because I didn't have a job (full time mother and homemaker didn't count to him). He left me after 3 kids and 10 years of marriage, for another woman halfway across the country. I loved him very much and was devastated when he said he wanted a divorce. It took a long time to get over that, and to recognize the abuse as abuse. After that, I vowed never again would I subject myself to a partner who constantly put me down and eroded my self esteem and justify it with love.

When I met my current husband, it was worlds apart in the way he treated me. He made me feel like the most beautiful woman in the world. He was patient and listened to me without making every conversation about himself. He made me feel special just the way I was. And then FTD (Frontotemporal Dementia) happened. We have been together since 1998, married since 2003, and the FTD started rearing its ugly head around 2010. In the past 2-3 years, the behavior has been so hard to cope with and the sadness I have from my first marriage has again been brought to the surface. Even though I have dealt with the past abuse, and put it in the correct perspective, you always carry those emotions because you lived them. They don't just "go away". So when the ugly head of FTD rears up and your husband is telling you how stupid you are, slamming doors, shutting you in a room, telling you that you've ruined his life, that you are conspiring to make him look crazy, that you have no idea how badly he can hurt you...... it's plain awful. Even though you know the disease, the shrinking brain, the brain damage, is doing the talking, it hurts. So now my sweet husband is gone. I am married to a stranger that I don't recognize. How could this have happened!? 2 abusive husbands, one a narcissist and one with a degenerating brain. A bitter pill to swallow for sure.

Adult Diapers and FREE samples

Today we bought the first package of adult pull-ups for incontinence. These kind of milestones are not pleasant and happy. They are sad and just crappy! For the past few months, urine (and some fecal) incontinence has been present. My husband has peed in the corner of the bedroom, in the bathtub, near the toilet, even tried to go in the laundry room but I stopped him. Last night he had a full on accident while sleeping next to me. I have read that this is part of Frontotemporal Dementia (FTD) as the brain is sometimes no longer able to know when to go, and also there is sometimes confusion about where to go, and what is appropriate. I feel bad for him, as it is hard for him to know that he is failing like this. However, in the same breath, he doesn't seem to care that much and allows me to clean up these messes without offering to help or extending any apology. Such is FTD though, it's that apathy and indifference that makes them not care about much of anything unless it's something they are currently obsessed with.

So, along with this new symptom/stage, comes the added expense of adult (diapers), and trying to figure out what will work the best. Here is a list of some free samples and coupons.

Links for FREE sample incontinence products:

***Tranquility - fill out the survey to get a coupon for a free sample pack emailed to you. $0 and $0 shipping.
https://tranquilityproducts.com/take-our-survey-for-a-free-sample/

***Tena - just enter your info for a totally free trial kit of your choice.
https://www.tena.us/on/demandware.store/Sites-Tena_US-Site/en_US/TrialRequest-Start

***Prevail - fill out the form and choose a totally free sample.
https://professionalmedicalcorp.com/pages/request-a-free-sample-of-prevail-incontinence-products

***Depend - select a sample and fill out the form, you will need to make an account.
https://www.depend.com/en-us/samples

***HDIS - fill out the form and choose a sample for free. Also includes coupons.
https://www.hdis.com/sample

***Poise - for women with light leaks, free kit with several pads. Fill out the form and create an account.
https://www.poise.com/en-us/samples-and-offers/free-samples

***Unique Wellness - has free samples but shipping is $1.99 or free if you can pickup in New York.
https://wellnessbriefs.com/samples

***Attends - fill out the form and pick your sample.
https://www.attends.com/us/en/products/attends-premier.html#samples

***NorthShore - fill out the form.
https://www.northshorecare.com/request-for-sample


Links for incontinence product COUPONS:

***Depend - you will need to create an account.
https://www.depend.com/en-us/coupons

***Tena - $1 off any pack of guards or underwear.
https://www.tena.us/tena-coupons/coupon-offers,en_US,pg.html

***Always Discreet - for women, coupons vary and are sometimes unavailable.
https://www.pgeveryday.com/

Observations

This disease makes no sense. One minute to the next is often never the same behaviorally, emotionally, and physically. I once heard Frontotemporal Dementia (FTD) described as a home where all the lights, appliances, and devices are on at once. As the disease progresses, the lights and things slowly go out, but never in the same order for those that have it, until there are no more lights or motion.

Lately my husband's decline seems to have gathered steam but there are days where his thinking seems more clear, his behavior more calm. It got me thinking. In a healthy brain that has damage, the cells try to process a path to go around the damage until there is a permanent way to function well, or as well as possible. In dementia, the brain is not healthy. It is shrinking, degenerating, atrophying. The cells are disappearing. As the brain tries to fire, it may encounter that damage and is probably trying to find a path to function. My theory is that on those better or good days, that the brain has managed to find a path. On the bad days, the path is probably met with a dead end or lots of road blocks. (Think of a labyrinth or corn maze where you run into a dead end over and over and give up.) Some days my husband has a sense of humor, some days he is a ball of irritable agitation. This makes sense to me if I think of it in terms of the brain trying to find a path in a dying cell battlefield that is constantly changing.

We met with a new doctor, a NeuroPsychiatrist and the director of the department. She increased the meds that my husband has been taking for behavioral problems, motivation, anger, and they seem to be helping. She seems to be quite knowledgeable about FTD and the type my husband has, bvFTD. While my husband is suspicious of his team of doctors, and still experiences a lot of denial of his condition, I feel that they are very thorough and compassionate. It's so heartbreaking that he has to go through this cruel disease!

From the Patient

It's interesting to me that finding information about Frontotemporal Dementia (FTD) directly from the patients who have it is hard to find. Part of this might be because a lot with this diagnosis suffer with word problems making communication more difficult, or they are in denial that something is seriously wrong. Who would want to admit that their brain was failing them? I'm sure very few of us would raise our hands! There is also a condition called anosognosia in which the patient lacks an awareness or insight that there is a problem at all.

My husband is in denial quite often about his condition. He tries to "cover" things a lot, speaking in circles or using generalizations to answer a question or confront a problem. He will very, very rarely admit that he has forgotten, got confused, or can't work something out in his head. Today we had a discussion about his anxiety and agitation issues. He told me that he feels that he lives in his own world where his brain tells him things that do not fit with my world. He said it is getting more and more difficult to bring the two together. The things his shrinking brain tell him are false a lot of the time, and he of course feels that they are true. This has to be tremendously hard to deal with mentally. I think this is a big part of the reason he feels the anxiety and stress... stuck somewhere between "normal" brain and "dementia" brain and never being fully in one of them.

I also asked my husband if he felt that he got enough love and affection. He seemed puzzled and said that he doesn't really know what that means anymore. He was having a hard time explaining, but from what I understood it seems that the human need for intimacy and affection is gone, meaning he doesn't need an expression of love any more. With this, of course, it means that he does not show affection to those that he loves. This has been going on for at least a few years. I told him a few months ago that when this life is all said and done, that I needed more love in Heaven because I didn't get enough in this life.

The other thing we discussed today was why he follows me around. He does this often and from what I understand, so do many FTD patients with their spouse or caregivers. Having never fully understood why, I asked him today since he seemed to be willing to talk more candidly. He told me that it's because he never feels safe. I guess, sort of like a child will follow a parent around, he follows me around to feel more secure and safe. This makes sense even if it is hard to deal with sometimes!

New Normals

A little dejected today. The last few nights have been rough. Last night wasn't good. Husband is getting very confused on waking and urinating everywhere but the toilet, and doing bizarre things. Last night he fell asleep early and woke needing to use the bathroom, headed straight for the laundry room in the hallway across from our bedroom. Luckily I was awake and managed to redirect him to our master bathroom, but he stopped at the tub and turned on the faucets. He said he needed a shower (we have separate tub and shower), then just stood there uncomfortable before exclaiming "wow I have to pee!". Steered him into the toilet room finally. Then after, he got back into bed and started choking violently and gagging. It was very worrisome and he vomited a little into a container I grabbed. In the confusion, he tipped the container over onto the carpet and spilled it. Got that cleaned up while he watched and didn't say much. 

The apathy erasure in my husband is complete, he doesn't apologize or feel bad that I have to clean up his messes, but I understand and it's ok. I feel this is the beginning of another "new normal" with this stupid FTD. How long will it take to adapt to this one? It took forever to adjust to the mean, angry stage. Funny how we adapt. 

So my plan at this point is to place down towels and/or pads from the bed to the toilet and leave lights on in the toilet room. Hopefully this will help to "guide" him to where he needs to go and he won't get as confused. I've also read that having those little plastic urinals like they use bedside in the hospital can be helpful. Maybe it's time to get some of those as well. 

Stages

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).

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.

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.

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.

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.

Sharing Our Life

This is a journey that no one would choose or welcome. This journey started several years ago, although we didn't know that we were being involuntarily placed on this slow moving scary train. Cognitive issues, lack of motivation and energy, memory problems, agitation and irritation, we chalked it up to getting older, financial problems, job insecurity... not a disease... certainly not brain degeneration or dementia. We had no idea that there were other types of dementia that are not Alzheimer's Disease. We had no idea that there were early onset dementias that strike those in their 40's and 50's. We had no idea that these other types of dementia rob a person of the very things that make them THEM; their personality and behavior slowly are taken away and replaced with a fearful, frightened, unsure person that can strike out in frustration and anger, and oftentimes they don't even realize there is anything wrong or amiss.

Nearly a decade ago, I noticed things that my husband did that seemed different, sometimes bizarre, often different than the man I fell in love with and married. He was a sweet man, hard working, thoughtful, and loving, who sometimes did things like grab waitresses, disparage family members, drink more than he should, began having a hard time keeping a job. As time went on, these things got more frequent and out of character. I worried and my husband wondered sometimes what was wrong with him. Fast forward years and with a lot of fighting for medical care (misdiagnosis, non belief by the medical community, fighting for referrals, etc.) and finally some NeuroPsych Cognitive Testing coupled with many neurologists, we have the diagnosis of Behavioral Variant Frontotemporal Dementia (bvFTD). These are scary waters we're faced with.

So, this is my journey, my husband's journey, our journey, as we try to navigate this new reality with bvFTD. By sharing personal experiences and our life, I hope that others who are facing a new reality will find comfort in knowing that there are others out there who are dealing with this difficult and challenging disease, both those with the diagnosis and their caregivers, partners, and families.