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.