PASL on the war path

[Miss]

Does any one else have a PALS that blames you (the caregiver) for EVERYTHING. When I say everything, I mean literally almost everything. I've tried almost every approach - nice, ignore, tough, you name it - to turn this situation around. I know it is coming from the fear of the disease, the rapid decline, the financial uncertainty, the battles with the VA and BCBS, relinquishing control, etc. I get all of that. I don't know what I would do in his situation, but I also don't know what to do in mine. If it were just the two of us at home, that would be one thing, but I have two children at home. This cannot be good for tbhem. It makes them very angry when he "attacks" me. Generally, I blow it off if they are around, but it is getting harder and harder. Any suggestions?

 

[sadiemae]

Missy, I found that my PALS has developed almost OCD like symptoms. And when he gets something on his mind(like VA issues) he will not let it go. He would wake up stressing about it and would not let it go for the entire day. And he would blame me too. The verbal attacks are so very hard, ours have eased up, but still show up now and then. PM me with meds he is taking, or give me a call today. HUGS Lori

 

[ZenArcher]

It's hard on both of us pALS and cALS. There are times when I'm an a$$hole and I know it. I try not to be and I try to apologize when I know I've been one but it happens. There are times as well when my wife slides over the edge. We're human and dealing with a lot. I can say however without a doubt that having ALS gives no one the right to lash out at another. In my opinion I would let him know just that.

Another thing to consider and I'm sorry to say it is FTD.

 

[sadiemae]

Missy , consider FTD, but do not mention it to him when he is angry. HUGS Lori

 

[ZenArcher]

Good point

 

[Miss]

Just read some info on FTD. It doesn't really seem to fit. I think he is just an a**h*** - alot. He does seem to have the problem. I did read an article from UCSF that states:

Researchers have found that in addition to those patients who have a diagnosis of FTLD,upwards of 50% of ALS patients have mild changes in their ability to concentrate, focus on multiple ideas or actions at one time, or make complex judgments, called ‘executive functioning’.

He does seem to have this problem.

I point out regularly that I am not putting up with the behavior, but he is smart enough to know that there is really nothing I can do about it. It's not like I'm going to leave him for more than an hour. I wouldn't risk a fall.

 

[Twinsmom]

Dear Miss,
I've seen over the years working in hospitals, that someone's basic character becomes magnified when physical crises occur. Was your husband an "a**h***" before his diagnosis? If so, then it would also make sense that it's worse now. Sounds like you're doing what you can- set boundaries that will allow you to protect your heart...
Prayers to you for peace and courage

 

[laurel]

I will second what Melody has to say after having nursed and worked in psychiatry for 30 years. The pre-morbid (before getting sick) personality traits do get exacerbated with illness. My hubby has CIDP -MADSAM (a motor variety) and he tends to be a rigid fellow who ruminates at the best of times. When he is over tired or needs his IVIG, his rigidity takes over and he is very difficult and negative. I used to be reactive with the situation, but now I just walk away and don't engage when he is doing his bear like behaviour. 90% of the time he is a nice guy, but the 10% of not so nice is very hard to deal with. And Missy like Zen says, it is important to let him know when he has crossed the line and make him accountable. Just make sure you don't do it in the midst of the blow up--wait until he is in a good frame of mind and tell him how much you love him but the things he is doing is making it hard for you and the kids. Take care Missy.
Laurel

 

[hopeful warrior]

Miss~ I hear ya! My hubby was horrible to me for months after his diagnosis. After a while, he began lightening up. We have both come a very long way since then. He is still bossy and judgmental. I had decided it is because he desperately wants to be able to control something. Usually I'm ok with it. He did tell me I was bi***y the other night. He's probably right.

I know it is horrible to be so frightened and exhausted and be torn apart by someone you are trying to help. I'm thinking of you and sending prayers your way. God bless us all.

 

[Miss]

He was a bit "tough" before the diagnosis. You all exactly right. It is amplified now. I just hate that others are seeing the behavior. Never did he show that side of himself to anyone but the children and me. Now, he lets everyone see it, and they are shocked. He was always a gentle giant to them. I do know that it is hard for him to give up control or everything, but it is just as hard for me to have to be in control of everything. We're only 6 weeks into the diagnosis. I guess we're still adjusting. I'm just not going to accept this foolishness!

 

[luvnmm]

Missy -

My mom has always been my soundboard for all my problems. And she never seemed to mind. She would give me helpful advice and then move on. However, with the last visit I had with my parents, my dad pulled me aside and asked that I not talk to her about my problems anymore. She can't seem to "move on" anymore. She frets over them and can become angry. Maybe that is part of it? He frets over and over the problems that are going on as well as the new diagnosis. I can't fathom what I would be like if it were me.

Talk with the doctor about it. Maybe a quick phone call? I wish I knew how more to help you. Keep us posted on what's going on.

Take care of you and the kids. Have a blessed day.

 

[CCMominVA]

Ohhhhhh yes! My dad stews over everything! I remember one night, he came riding into the kitchen. My mom was getting him a drink. As she opened the refrigerator (mind you, they've been married 37 years and she has always organized the fridge the SAME way) - he went on a venting about how things were arranged. The whys, hows, not this, not that, etc. My husband was shocked. Ha ha ha. For my dad, it's a feeling of helplessness and wanting to have some sort of control.

I'm so sorry you are going through this, and for the kids to see it. I'm sure it is all so new and delicate - praying that time will allow for some understanding on his part that it's really tough for you as it is for him!

 

[brooksea]

There is a possibility of Emotional Lability! EL doesn't mean there is dementia, it just means emotions are upside down. My husband suffers from EL and is on Lexapro, which has helped a lot. If he doesn't take it like he should, his anger intensifies with his level of frustration and he will laugh or cry when inappropriate.

 

[BarryG]

I think the whole "inappropriate laughing and crying" part of EL is only a part of the issue. Instead of Emotional Lability it should be called Emotional Intensity, I have never laughed or cried at inappropriate times but I sure laugh and cry more than I ever did before. And Canadians will know that if I say if I have EI it also means that I am collecting Employment Insurance (which I am not, but I can wish anyway).

The loss of control, employment and just general self worth is also an issue too, it sure is for me. I get very frustrated when I realize all that I can't do anymore.

 

[handinhand]

I know barry that we are pretty close, with what is going on with this monster...I think when something else is taken from us,an arm, a leg, the ability to talk,eat,running walking and is replaced with drooling, twitching, masks on our face, tubes coming out of our stomach...something dies inside with each New loss? You have been so much stronger than me.. We will help each other keep going and keep reminding each other of all the things we have and have had through this journey? Many hugs for you today... Linda