Owned by ALS

[DCL1964]

Do any of your PALS act like the disease owns them? As you know, my brother has been diagnosed with ALS. All he talks about is how bad he feels, every ache and pain, the tightness in his chest and how this is killing him quickly. The last time he went to his neurologist, I made a point of asking if my brother was dying. The doctor said NO. My brother is a hypochondriac and drama queen of grand proportions. Our father used to say he would have a closet full of Oscars if he went into acting professionally. I'm not disputing there is something wrong with him it's just I don't need to be bombarded by it EVERY time I walk into a room or come home from work. He says I just ignore anything he has to say, but it's like living with a broken record. Whenever he says he needs to go to the hospital, I tell him to call an ambulance. He gets mad at me for making the suggestion and then a little later says he feels better. I've said to him and his friends that one day he's really going to need to go and I'm going to respond like I have to the hundreds of "emergencies" in the past and I'll come home to find he passed away. It's getting to the point I'm thinking of putting the house up for sale and leaving this area and him for good. Let his daughter or his son put up with him. I'm nearing the end of my rope.

 

[joelc]

I am sorry to hear of the challenges you are having. He needs to settle down and start living.


I have ALS, ALS does not have me. He needs to adopt that saying.

 

[LizT]

Your right, Joel. And my PALS is the same way. He has ALS. He is NOT ALS.
This beast makes it hard on everyone involved, DCL. Your brother may not be dealing with things the way you'd like him to, but try to understand where he is coming from. It is a very scarey disease. So much is unknown. And there really isnt a set timeline for folks diagnosed with it. Yes, maybe he does overreact at times, but maybe he is just scared. He has reason to be. Try to really, honestly, put yourself in his shoes and see how you would react.
Im not trying to say that you are wrong for what you are feeling. Youre not. Not at all. It sounds like you are super stressed and need a break. Can that happen?
If not, something that always helps me when im too stressed is to think of my PALS, and think of what he is going thru every single day. Sort of puts things in perspective.
keep posting. it helps.

 

[brooksea]

He needs to be shown what he should be thankful for! If you have been speaking with his friends, then I assume, they visit or call. That is great! You take care of him. That is great! He's still here. That is great!

I don't know if you've told him how disturbed it makes you feel when he obsesses. There is absolutely nothing that can be done, except make him comfortable, but that shouldn't come at your emotional or mental expense. He needs to realize this. Taking advantage of you will only burn you out! Perhaps he does not understand that he is doing this. You need to be honest with him.

Good luck!

 

[Miss]

DCL1964, I know what you are saying. My husband doesn't "cry wolf", but he does get very obsessed with things. It is exhausting.

 

[g garcia]

No help here, Mom is still newly diagnosed and is actually kinda enjoying the theatritics too. Yes it is exhausting, infuriating and somewhat pathetic, it is hard to muster sympathy for someone that you have no respect for, but no doubt you know that already.

All I can tell you is to try your best to stick with it, even if the person may not seem deserving or appreciative of your help they still need it, the hardest thing in the world has got to be playing nursemaid to a person who is never satisfied with you or your level of attention to them. I sincerely hope you manage to find the patience to deal with your brothers insecurities and somehow carry on.

Good luck and my sincerest best wishes...

 

[Danijela]

Hi,

in our case I tend to talk more about ALS than my partner as it is my way of rationalizing it and dealing with it. He rarely complains about anything. Perhaps you can allocate some time in each day when it is fine for your brother to talk about how/what he is feeling, and then close the conversation. If following that further adjustments to his care are needed, those can be inititated, if not then he can perhaps 'save' the issues for the next 'session'. Dani

 

[DCL1964]

The problem is that's all I hear about from the time I get home til I go to bed. We were talking on the phone yesterday and I said if he had been healthy enough we could have gone to Maryland for the Beatles festival they're having this weekend. When I got home the first thing he said to me was "I know where we are going to spend the weekend." "The hospital." He was having some trouble with his hands and arms and he went into overdrive. I told him I wasn't spending the weekend in a hospital. It seems like the last 3 or 4 weekends we have major arguments over going to the hospital. If he really needed to go and I wouldn't or couldn't take him you'd figure he call an ambulance and go. Sometimes I think he either needs attention or he wants to see how much he can stress me out for the weekend.

 

[pmbenb83]

Why does he feel that he needs to go to the hospital? Maybe he should go to the ER feeling the way that he does right now, and then they can tell him that he is okay. Maybe he needs reassurance from another doctor that his death is not eminent.

I can see how his behavior would be wearisome and worrisome, but as it has been said numerous times on the forum, everyone deals with it differently. He may be totally freaking out... which I probably would if it were happening to me and he just needs some way more constructive to relieve these anxieties.

Good luck to you and your brother.

 

[DCL1964]

PMBENB83, he's always been a hypochondriac. Years before ALS, he would constantly go on about going to the hospital. This is nothing new for him. He's always trying to be the center of attention no matter what the situation. I don't need the constant fighting and arguing and stress just because he wants or needs attention.

 

[pmbenb83]

I understand your point and totally agree it sounds exhausting. I was just hoping there would be some kind of helpful approach for you to help remedy the situation.

If he does have ALS, then he is technically not a hypochondriac regarding this... he has a dreadful terminal illness. However, this does not give him a license to be over dramatic though. There has to be a happy medium for you both. Maybe a medication to help with his mood/depression.

Take care.

 

[rkyoung]

Dear DCL1964,

I think this speaks to the care you and your family is receiving from your clinicians. There is obviously a problem and your clinic should provide service for it. Why do we have to struggle with every little new aspect as if there was no answer for it? There are answers and your clinicians need to tell you what they are. How do we know what to ask for if no one freaking tells us what we need to know? I'm sick of finding out things for myself and my sister all the time. The clinic your brother goes to must have mental health services. Go over there and demand to know who can provide that help. I, for one, am finding out that if I get pissed off enough, suddenly someone knows something!