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asya

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Hi everyone,

First of all, I would like to thank you all for this wonderful forum and for all the advice you provide. My father was diagnosed with ALS (Bulbar) about 6 months ago. He was never an optimistic person to begin with, but now it's really bad. My parents should've divorced many years ago, but didn't for financial reasons. So now my mom is taking care of my father. They haven't had a good relationship for the past 20 years or so, so you can imagine the way things are now. My mom is still working (part time and 2 days a week from home). It helps her financially and just to be in a different environment. My father is killing her emotionally. He is putting her down, says terrible things to go and just treats her like she is nothing. She cooks, cleans and does things around the house. I live very close to my parents and see/talk to my mom daily. I work full time and have 2 little kids, but really try to do what i can. I have no idea how to help my mom... I have no idea what to do. I have an older brother, but he is a lot closer to our father and has a better relationship. It's hard for him to understand what my mom goes through as he has a totally different life style... I never had a good relationship with my father, but really trying right now. We just went to a family vacation... to try to spend some time together as a family. I am afraid that while my father is dying, he will take my mom with him.... I don't know what to do. Any suggestions? My father is on anti-depressants and it's helping, but his screaming and putting down never stops. Has any of you gone through this? How can i help my mom? I know how to help my dad, but i am terrified that i will lose my mom as well. Thank you for reading and I'm sorry for a long post.
 

Ms. Pie

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No and I wouldn't put up with it but that's just me. I'm afraid there is nothing you can do but be there for your Mom. Her relationship with your father is up to her. Just love her.
 

asya

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I try to talk to him. I've begged him to treat mom better. But he doesn't see me either. I am his secretary when it comes to medicare/doctor visits/medications/trials and i do NOT mind. But recently when i asked him not to drive when he was tired, he started screaming and told me that my dream of him passing away will come true soon. I just lost it... I'm afraid to speak with him now because i just do not know what to expect.

I will try to get my mom out of the house as much as possible.... Thank you for commenting.
 

Ms. Pie

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I'll say a prayer for you Sweets!
 

here4her

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From a guy's point of view, I would ask your brother to have a 'heart to heart' with your dad. It sounds like your dad has been doing this for so long, it probably seems 'normal' to him. Maybe you could first explain to your brother the harm your dad is doing, and then get your brother to be the spokesperson to your dad. Someone needs to straighten him out.....although I know that will be a tall order.

If you dad is made conscience of his 'ill chosen comments' and just how hurtful and destructive they are to your mom, maybe, just maybe, he will decide to change his attitude. This is no time to be a butt head. You (or your brother) could ask him point blank if he is intent on taking your mom out, along with himself, is that is objective!......make him think about the harmful effects he is having on her, and that it is also hurting you to see him doing this to your mom.

I know it's a long shot, but what have you got to lose, at this point. He should be focusing on making every moment all it can be. Instead, he's making it worse. Of course, if they haven't gotten along for all those years....it's doubtful that he will care anything about trying. If so, that's too bad. Maybe a Psychologist?
 

sunewun

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Maybe you should suggest to him that if he is so unhappy with the help he is getting, perhaps he would be happier in a nursing home.....
 

ottawa girl

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It's been going on so long, this dysfunctional relationship, that I am not hopeful your Dad will suddenly have an epiphany. Nor will he be coerced, cajoled, or shamed into changing. He's one angry narcissistic bird! I have to wonder, in all the years of abuse, if all of you have walked on egg shells just to keep the peace. If so, you've enabled a bully. It's not the ALS. The illness is the grease in an already hot skillet.

ALS does not a bully make. ( excluding related dementia). He's not gonna change, I fear.
But you can.

What to do? I'm thinking tough love. "Take it or leave it, Dad!" rules of conduct.
Three strikes you're out. All of you. Out of his life. Left, to his own devices.

I know this sounds heartless, but it's no worse than he's been dishing out. Your Mom is not an indentured servant. She's an x-spouse for all intents and purposes. Your children deserve a grandpa they can look up to.

You, dear peacemaker, deserves a loving Dad.
 

Ms. Pie

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An excellent idea Elaine!
 

asya

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Thank you all for your comments. I believe earlier today my brother tried talking to him. I will call him later to find out what happened. I spoke to my mom and she feels really sorry for him and says her consciousness would never allow her to be any different... All i can do is try to distract her and to listen. Thank you again...
 

ottawa girl

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Thank you all for your comments. I believe earlier today my brother tried talking to him. I will call him later to find out what happened. I spoke to my mom and she feels really sorry for him and says her consciousness would never allow her to be any different... All i can do is try to distract her and to listen. Thank you again...

And so it goes. Good luck my dear. I feel for you. Peacemaker - flying solo. At some point distracting and listening will become frustrating.

We're here if/when you need us to distract you and listen to you.
You sound like a wonderful person!
 

patgayle

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I am experiencing the same treatment as your mother - from my husband. You/she are not alone, I can only say from my own experience that it seems like ALS intensifies the worst traits the person has before they are diagnosed. You might want to follow the thread about frontal temporal dementia or google it. I am the kind of person who can usually walk away and keep my cool, but there are times when I loose it. My family members and a friend or two have tried t talk to him about it but he just doesn't 'get' what he is doing wrong, or believes that he is totally justified... Good luck, just be there for your mom, when she gets frustrated or he angry try to step in when ever possible.
 

rosec

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Your description of how your father treats your mother sounds so familiar. I agree with patgayle about how ALS seems to bring out/intensify the worst in someone. I feel like I have grown a thick shell like a tortoise to keep me from going nuts. Sometimes I feel that his acting the way he does now will help me not miss him when he is gone.
 

HelenL

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Such great comments here already... I also don't think your Dad is going to change his attitude unfortunately. Does his insurance or state pay for Home Health Aids? He may be nicer to someone who won't take his abuse, or at least it may show him how nasty he's become (and lessen the load on your poor Mom). Meanwhile, our brother needs to step in more and tell him like it is.

Good luck and hugs!
 

Katie C

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Asya and Patgayle: it sounds to me like both your PALS need FTD workups done. Don't expect them to agree or ask for it. My suggestion is usually to e-mail the neurologist and tell them what you're seeing re: mean behavior, "Just doesn't get what he's doing wrong", emotional outbursts (different from emotional lability, where the PALS fully understands their behavior is weird, but can't help it), inappropriate speech or behavior, etc. The neurologist can then do the workup without violating confidentiality if you don't yet have a healthcare POA. If FTD IS the issue, or part of the issue, there are combinations of medications that may not FIX the problem but can certainly ease it.
 

skikaz

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asya, is your father on any medications? While ALS is slightly causing me to be moody, when I was taking lyrica and gabapentin I was being mean to people. Since I quit taking them I've had pain but I'm enjoying life a lot more.
 
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