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.

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).