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.

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!

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).