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!