My PALS has become mean

Chickenoots

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My husband has had PLS for about 2-3 years. He is probably progressing into ALS. Doctors think he needs to be tested for Frontal Temporal Degeneration based upon his behaviors at home. At the very least, he is depressed. He thinks he is fine mentally and the problems are with myself and our 2 daughters 23 & 14). Our daughters and I have been in therapy and under psychiatric care for the last 2 years because his behavior is so awful to us and only us. He is making behavioral and cognitive slip ups with others, but no one catches on; it’s only us who live with him that he directs this behavior towards. I love my husband, but his behavior is killing us. One daughter has developed some self-harm coping mechanisms and ocd behaviors among other things because of the stress of my husband. Another is legally disabled, and her disability is affected by stress (among other things) so she remains constantly sick due to the stress of my husband’s behavior. His PLS diagnosis, while traumatic and I don’t mean to minimize at all, but the ftd/depression is what is killing us. We are in therapy to learn how to cope with him because we know he isn’t going to (or can’t) change, so we have to.

He is not physically abusive, but he is emotionally, mentally, and financially abusive.

We understand some of his behavior must be linked to receiving this awful diagnosis and him trying to cope with
it. We spend an inordinate amount of time trying (and sometimes failing) to use words that put a positive spin on things.

I don’t want to leave my husband. I want to care for him as the PLS/ALS progresses. His social worker and doctors are aware of what is going on at home. My husband believes he is fine and needs no testing or antidepressants and he doesn’t care what anyone tells him. I do not have POA; we have no family to go to. I can’t support the girls and myself so moving out is not an option. We do have a family friend who has seen his behavior towards us. They would let my husband stay with them until he addresses his mental health. But my husband is so stubborn plus seems to have narcissistic tendencies that I foresee him digging in his heels and not budging. Any advice or thoughts would be much appreciated.
 

lgelb

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I am very sorry to hear about your husband. I am sure those with firsthand FTD experience will chime in.

It sounds like neuropsychiatric testing would be academic, unless you were seeking legal guardianship. Some here have administered drugs such as antidepressants surreptitiously in food. That is your choice to make, perhaps in consultation with his medical team. The social worker associated with your clinic, might be your first port of call to meet 1x1.

I'm not sure what you mean by "financially abusive," but you may want to consult with an elder care attorney to discuss whatever paperwork, such as a will, advance directive, etc. does or does not exist, and take whatever steps are possible to safeguard your family. If things are getting worse, and the situation is intolerable at some point, you may need to consider whether the finances would allow for an alternative care setting for him. It is rare that things come to that, but it does happen.

Is there somewhere else your kids could stay, as another option? That might be a wakeup call.

I'm not sure to what extent you two have discussed the effects on your kids, etc. It is usually better to talk about "I" and "we" rather than "you," and stick to the facts.

Best,
Laurie
 
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Elkhorn3

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I'm so sorry. Was he mean before?

Personality change is one of the worst cruelties of the disease. Just like ALS robs the body of muscle control, FTD robs the brain of certain functions, primarily self awareness, empathy, and peripheral attention - ability to see the effect of a behavior on someone else. They can become very ritualistic almost, sticking to habits and routines and needing things to be one particular way. He directs his worst behaviors toward you and the girls possibly because those are the connections that scare him the most to lose, so it throws his brain into chaos and panic, which comes out in harsh and cruel ways. It's not necessarily how he feels, but quite possibly it's how his brain centers are breaking down.

My husband was just diagnosed with ALS last month, but his personality started changing a year ago. It's so incredibly hard - hardest on my daughter but she's 17 so a bit more able than yours to understand it's the disease it's not him.

I don't know if antidepressants help with FTD. The problem is an atrophying of certain centers in the brain, I think. There's a good article on the ALSA website about cognitive impairment and FTD. I'd encourage you to talk to his care team about it, privately, though in my experience not everyone knows how to address the mental aspects at all. Respite for you and your girls is imperative.

The more you can see it as a symptom of brain damage, not an aspect of his personality, the more you can let go and protect yourselves from the pain. His personality is one more loss to grieve.

I'm so sorry you're going through all this.
 

affected

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I'm sorry this is happening. My husband had FTD as well as bulbar onset ALS.
The FTD was the hardest part for sure - he lived in hell, being paranoid, and often in a rage. All the while being oblivious to the fact that his personality had changed at all.
Fortunately all the children were adults and not living here so they got to be his heroes and I was the villain. I only say fortunately because I would have hated him to have taken it out on them too.

You will need to get some strong advice, and support, as will your children if you are going to all make it through this.
 

Chickenoots

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Thank you for your replies. You all have good words of wisdom for me think on.
 

lgelb

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A further thought -- you don't need to try to "stay positive" or "put a positive spin on." Those can for some PALS come across as dismissive or uncaring. Acknowledging his anger, fear, uncertainty, what have you and also the fact that you share all of these, though in a different way, can lead to conversations that help ease the situation. It is OK to be scared together, as you have been together up to now in everything else.
 

KimT

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I'm going to chime in with a different perspective. What if part of it is depression? The reason I say this is my brother has dementia and he has been depressed for years. It manifested in isolation, anger, and refusal to do anything other than something he wanted to do. He was evaluated recently by a doctor and the doctor prescribed Remeron. He took it once, then refused it because it gave him nightmares. Prior to that he only slept 4-5 hours a night for as long as he could remember. The doctor said regardless of the dementia, he needed an antidepressant.

His wife said whatever anyone asks him, his default answer is no. Usually after he says no and then agrees, he actually enjoys it. Like a meal. Do you want steak? NO. After the steak had been sitting there five minutes, he eats it, often saying it was good.

Yes, it could be FTD.

COVID is making everything harder because we just can't go out and do things.

I've felt myself get very angry when I notice something that I'm having a hard time doing. I've had enough counseling for 10 people, some of it was worthless, some of it helped.

I've been in an abusive relationship, verbal. I always made more money so he had no control over me financially. I would be honest with him before he progresses even more. Maybe he needs to hear some anger from you about how stressed the situation is making you and the kids.

Regardless if it's FTD or depression, or a combination, he needs to see a doctor and a doctor needs to see him. This might sound blunt or insensitive but you can't allow him to drag you and the kids down with him. If it is FTD, you should have no trouble getting guardianship over him through an elder law attorney. That's why he needs to be seen by a doctor.

I'm so sorry you are going through all this.
 

Dee Dee 0617

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My two cents, isn't worth a tinkers dam, but I felt the need to post. I am so sorry you're going through this. I am a widow, and my husband was all that and a cup of hot chocolate. You said you weren't sure if it is FTD. Let's start there. I want to tell you I am not proud of my behavior for the first couple of years after my diagnosis. My family couldn't take it, I went through caregivers like water. Nothing was good enough, fast enough, no one was smart enough. I thought nothing of telling them how stupid, slow etc. they were. I realized about three years into this, the only thing I could do is accept that I was going to die. That everything I had worked for, or saved for, was nothing. Grandchildren poof, dancing the mother son dance at their weddings poof, Sunday dinners poof, walking poof, talking poof etc. Etc. Etc. I raged at everyone, and I am not kind. I wanted everyone to feel as badly as I did, as cheated, as fooled as I did. Is he seeing a counselor? I did and feeling heard was all I needed. Someone who was impartial, and could really get that this was happening to me. I know family friends, communities, are all affected. I know you are going through your own deal with this disease, but it is not happening to you. It was good to have someone validate me, without me having to worry about any walking, talking, self-feeders feelings. You obviously are very much in love with your husband. Would you just be a doormat, and take his bad behavior if he didn't have PLS? You've never had a marital fight? Maybe he needs his "wife" to say stop being a jerk. He needs something, because you are going to have a nervous breakdown if you continue to be Mary sunshine. Has he smoked pot? it does wonders to mellow someone out for a while.
 

Maggie505

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What you said about not having to be strong really jumped out at me. I am seeing some of this with my brother. My sister-in-law is so strong, and this really clicked with me.
 

Hellybelly

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Hi my husband is the same its very upsetting he was diagnosed last march and has progressed fast he nasty to me but nobody else its really hurtful I been caring for him alone since last march I just got carers in a few wedks ago as I coukd no longer di it alone as his legs arms hands dont work im hurting my back getting hin up its near impossible now he is coughing and chocking all the time . But now thts something else to use against me as he says ill regret when he dead that I didnt look after him myself and farmed him out to carers this is hurtful as I've done it as long as I could his pallitive nurse who said I was exhausted and needed help .its horrible isnt it u do your best I know its frustration but its still upsetting x
 

Nuts

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I remember well those early cognitive changes that no one else recognized. They were gut wrenching, especially when other people thought I was imagining them.

You've already received some wonderful responses; I especially appreciate DeeDee's stark honesty. As they say, hindsight is 20/20. My husband was strong and stayed positive for me, and I took my cues from him. Only a few times did I slip and express my devastation. I wish I'd done it more. I assumed he knew how I felt, and I knew that he hated it when I became emotional, but the luxury of reflection tells me that he actually needed to know about the tears I cried over both is pain and the depth of my loss. Whatever has been your approach, try changing it. Been submissive? Stand up to him. Take the kids and leave for a week. Been strong? Let him see how much you will miss him and how his pain is destroying you also.

Ultimately, it may be that no change you make (and you will have to continually change) will make a difference. In that case, you must protect your children.

You mentioned that you cannot support yourself and the children without your husband. I hope that, in addition to your focus on him, you are planning for your future. What will you do when he is gone? In the back of your mind (at the very least) you must start figuring this out. As you start taking control of your own future you will find strength you didn't know you had, and that will help everyone. If FTD has destroyed his ability to reason, you must take control for his sake, your sake, and you children's sake.

I'm so very sorry. Of all the pain this monster inflicts, FTD is, in my humble opinion, the worst.

Becky
 

Chickenoots

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Honestly, I see no hope at all.
*my husband had his faults, as we all do, prior to this. He also had some undiagnosed narcissistic tendencies and was and still is controlling. Through my therapist, our daughters therapists, we all agree this to be true.
*all of his faults, manageable prior, are unbearable now.
*i do have a job but it pays for my youngest‘s dance classes. My husband will not pay. Her therapist and I agree that dance is her safe place and she needs to stay there as long as she wants to.
*if I were to get another job, husband says my earnings will go toward the bills, rather than day to day things our daughters need. This is a major point of contention in our family. ie he wants our oldest disabled daughter to pay a portion of our electric bill “because she uses some of the electricity, too” also our youngest needed an eye exam and glasses (she was having headaches and eye strain). it’s a long story, but after 3 months of him saying no I finally just went and got her glasses and charged them. She’s due for an eye exam but she can deal with it for now. But I’ve already let him know that sometime this year she will need an eye exam and probably new glasses.
*only very rarely would he admit he was wrong; now he never does. We have so many horrible issues in our family and he never ever accepts responsibility. Never. It’s either my fault, the girls, or our collective family. Never just him. The girls and I are the ones in therapy for 2 years trying to cope.
*he has excuses for everything, including using God as an excuse of manipulative tool
*i am periodically banned from his doctor appointments
*he has cursed at me and threatened to hit me. This was 2 years ago and was my “aha” moment that something was wrong
*he periodically will not let me get groceries
*i have to ask him before I spend money
*he says our oldest disabled daughter is a burden
*is extremely apathetic toward us but so loving toward others
*he shares personal things going on in our family with other women
*if I say something he is doing is wrong or hurtful he will say something like: “I’m going to do what I think is right” “you are insecure” “you don’t trust me” etc
*i get zero affection or affirmation from him but I’m still expected to be intimate
*he is very much well loved and respected in our community
*is nice to everyone to their faces, but trashes them at home.
*is critical of everything we do
*he is still able to work; I need to figure out something before he can’t work and is home full time

We have no family where we live. I have stopped asking trusted people (I no longer trust them) for help because people don’t know what to think so they do nothing.Friends know I wouldn’t lie, but also can’t comprehend that my husband is awful at home. I have one friend and her husband who believe me. They have stood up to my husband a few times. But they have their own issues that consume their time

I am learning to not be a doormat and to stand up to my husband. It’s only been in the past year that I have come to realize how he has controlled me emotionally, mentally, financially, and even spiritually abused me. We have been together 30years. So all of that realization is still fresh for me and quite unbelievable.
 

KimT

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Record him. Keep it for court.
He is an abuser, plain and simple.
We believe you.
I'm so sorry you and your family are being abused.
My ex was abusive and used religion to try to control me.
Don't let his diagnosis stop you from doing what you think is best.
 

affected

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If this is a change in his behaviour that has come on over time, then you might really consider approaching his neurologist and seeing about diagnosing him with FTD via interview with his CALS. Many PALS with FTD will refuse to be examined for it because they so strongly believe nothing is wrong with their mind, and have a lot of paranoia towards their CALS.
If he is diagnosed with FTD would you have the ability to take control of finances etc?

I think you need to get some very clear guidance and counselling from both someone who can help emotionally but also legally so you do this the right way.

We hear you, and we believe you.

My husband had FTD and the transformation was horrific, and hardly anyone really saw it, let alone understood it.
 

Elkhorn3

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Can you have a frank conversation with his doctor, alone or by phone? If not, how about his doctor's nurse? Or is there a social worker you can call who is assigned to your husband's case? They are all trained to recognize abuse and should help you find resources to help your daughters and get you respite care. Anything you can tell him is doctor's orders protects you from blame, even a little.

Sounds like you've been through so much pain you can't even see your way out. It sounds incredibly painful. But this is not on you. Just because he has this diagnosis doesn't mean he gets to wreck you. We are all here for you. Please keep us posted.
 
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