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Jlynn

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Hi, I have been here before but mostly just quietly listening. Here's our story in a nut shell. My brother was officially diagnosed in December of 2015 although was told he may have ALS a year and a half earlier.

Once told that he went on with his life until a year and a half later when things had gotten worse so finally was forced to get a diagnosis. This only happend when he could no longer work for more than 20 hours a week without exhaustion. He lived about an hour and a half away at the time and then moved home, not for help but he needed a place to live because he couldn't afford where he was anymore.

He now lives by himself in a family home. At present his condition is such....severe weakness in both legs, left hand is unusable and the right hand is about 3 months away from being unusable based on his progression so far. He just told me yesterday that his swallowing is affected and choking is a very real possibility daily.

Here's our problem. He has always been a loner to begin with. At this time he appears to be disconnecting from all of us including his much loved 2 young children. He won't answer the phone or the door. He never leaves the house. It seems he is all done living and is waiting for that "cut off" when he knows he will no longer go on. He says he has a plan for ending his own life. He means it. He says he will never use a wheelchair, never get a g-tube. Nothing.

He went to clinic once and says he will not go back. He takes no medication. Nothing. Those of us that love him are forced to sit back and watch. It's killing me. This man is my little brother and I love him. Please tell me what I'm supposed to do. What am I supposed to say? This is the saddest thing I have ever witnessed. Any advice given would be graciously accepted.
 
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Jlynn

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385
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Diagnosis
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It must be said as well that I'm feeling like precious time is being wasted.
 

Atsugi

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My concern, frankly, is for the children.

Perhaps appealing to his love for his children would persuade him to take an anti-depressant.

Only you know how he'll react if you plead or if you push. But in the end, it's his choice.
 

twitchykitty

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Feb 17, 2013
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PALS
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01/2013
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AUS
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qld
It is also possible he is subconsciously or consciously pushing everyone away so they don't get hurt.
I wonder if telling him that in fact that's the opposite and will cause more hurt he might possibly let family in a bit again

I'm sorry you, your brother and family are going through this. I truly wish I had a solid answer for you
 

patoyeah

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PALS
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11/2012
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I might try to do what u can so that your conscience is clear, and u can be at peace with your actions... u probably thought about that.

I might try to ask him what he wants, and is there anything I / we can do to help.

Take care,

pat
 

BetsyB

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Apr 6, 2016
Messages
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PALS
Diagnosis
04/2016
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IL
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AA
Today I feel pretty much like your brother must feel. what is the point of working so hard to stave off all these horrors. I feel like the horror of choking and air hunger and total helplessness is like an oncoming train andi am on the tracks and cannot get off.
 

Diane H

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Sep 28, 2013
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PALS
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11/1985
Country
US
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Indiana
We talk often here about honoring the decisions our PALS make about their own death. But when those decisions are put into action-- refusing a wheelchair, a feeding tube, BiPAP, etc., we are understandably horrified. They don't have to die so soon. They could have more good quality life.

As someone who has chosen the ultimate, a vent, and am very glad I did, it seems especially hard to understand. And yet I do understand that some people are just not "wired" that way. They recognize that no matter what they do, the ALS will win in the end. Fatalistic? Foolish? Or just plain Realistic? It is all in the mind of the PALS and not in the eye of the beholder.

Should your brother give antidepressants a fair trial? Yes, absolutely. Can he be forced to? Perhaps his stated suicidal intentions could be used a way for legal and/or medical intervention. A 72 hour hold and evaluation and medication might help, but he may not cooperate and may not take the antidepressant after he is released. And maybe medical personnel will be more inclined to accept his right to forego any treatment.

You say he has always been a loner and you can't change his basic personality. If it is his choice to refuse any life prolonging assistance, maybe that has to be honored just as refusal of ventilator would be. He is living in a deteriorating body and knows how it feels to him. Call it giving up, stubborness, depression, whatever, it has to remain his decision even though his family wants him to live on their terms. As for the children, the only thing worse than losing their dad would be being told or overhearing that Daddy didn't try. All they need to know is that doctors couldn't save him.

ALS is horrible and it always so hard for the family. All I can say is it sounds as though letting your brother make his own choices may be the only way left to love him.
 
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BetsyB

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04/2016
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IL
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AA
I think it is absolutely your brother's right to make his own choices.
 

affected

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I would get hospice to him if possible.

If you can talk to him you can tell him that hospice will help him pass peacefully. They won't end his life, but they won't try to save him and will honour his wishes.

Don't talk about giving up - this monster always wins, you can't fight it.

If he does not want to live with the progression he has every right to access quality palliative care.

They can also help his children as they have grief counselling.

I'm sorry it is like this, but the truth is that this is the most brutal disease there is!
 

tripete

Senior member
Joined
Dec 5, 2014
Messages
998
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
Let me begin by saying that I also do not take any medications and have questioned why bother trying. One of the hardest things I have had to do was to sit in a wheelchair while my sons and wife pushed me around. Later when I got my own portable power chair it was difficult to use it with the way everyone looked at me, and how hard it was to maneuver down a busy sidewalk with people constantly cutting you off.

I do not take medications for two reasons. To date there is no medicine that can reverse or truly slow down this disease (I do not believe that Riluzole truly helps). Second, the medicines that help with cramps, fasicullations, depression and pain would compromise my ability to be in control of what is happening to me.

The mind is where the real fight is. Your brother has to learn and accept (I am sure he already knows) that we cannot physically fight this disease but we can mentally. Let me explain. People often talk about fighting diseases, by that they mean that we try anything, that we have a strong desire to beat the odds, that we never give up hope that we will get better. Unfortunately with ALS this is all poppycock. ALS is unique in that there is truly no help or hope of getting better. It is ridiculous when people (especially medical personnel) ask us how we are doing. We are dying, and every day is a reminder of that as we see more and more disappear.

For me though fighting ALS means that it will not determine how I treat those I love. I believe that when you love someone you serve them.. So, for me, I do all I can to love - serve - my wife and kids. I try hard not to emotionally burden them. Physically of course they need to help me, but I try with all my strength to love them and help them by any words or deeds I can manage. Loving words can go a very long way.

Now for the hard part. I cannot allow myself to feel sorry for myself. Feeling sorry for oneself means that you are focused on "poor me". How can you love or serve others if all you are thinking about is how bad you have it? I feel bad for your brother. That said, he can"t. He needs to get off his rear and start loving others. Everything you describe is a person feeling sorry for himself. He has children and a family who loves him. He needs to love them and stop focusing on himself.

If this sounds harsh, please understand that it has to be this way or all we will do is sit around, having our own pity party, and never live- even if it is for just a few more days.
 

Jlynn

Distinguished member
Joined
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Messages
385
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
NH
Thank you all so much for your thoughts. I can't even begin to tell you how appreciative I am. My brother is definitely depressed. I know this for certain as he loves his kids, 10 and almost13 so much. These days he can't even speak of them with our tearing up. Their mother lives with a man now and somehow my brother feels as though he needs to "cut them loose" so they can get on with their lives as a family. He feels as though he can't do anything with them so what's the point? I pointed out that the emotional part of a relationship is what really binds. They love him. No matter what. I hope I'm wrong but it feels like he has given up and is disconnecting ahead of time. Preparing them. He's very sad. I would be too. He has gotten very limited in the last few months as to what he can do so he is at home alone most of the time. The t.v. is his friend. We all have to be very careful as to what we say to him. Especially giving any advice or trying to help out around the house. He pulls even further away. Anyway, thanks especially to the PALS. It means a lot to have you share your perspective on this horrible journey.
 

lgelb

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J,

I would be very frank w/ his kids and explain depression in terminal illness, etc. as part of the disease. They are old enough that they should know the prognosis, and they can see for themselves the effect. They should also have the opportunity to direct comments/questions to your brother if they so choose, even if he sadly ignores them. Above all else, they need to know how much they are loved.

I would never consider involuntary evaluation or treatment.

Best,
Laurie
 

BetsyB

Active member
Joined
Apr 6, 2016
Messages
96
Reason
PALS
Diagnosis
04/2016
Country
IL
State
AA
Laurie, I just want to add that maybe it is wise to distinguish between someone being clinically depressed and alternatively someone is just having a normal emotional reaction to a physical hell and to the prospect of leaving a family behind at one's too-early death.
I had several meetings with an excellent psychologist in the rehab facility, and she said that it is absolutely normal and even beneficial to cry under these circumstances. This is my expression of grief over my family's losses due to ALS.
I think that anyone with ALS should be free to chose life or death for themselves in the way that best suits them. But if one chooses to just die naturally, why not make it as peaceful as possible with palliative care?
For your brother, most caring OP, might i also suggest bringing him some cannabis, (ideally the medical type) and let him self-administer some palliative care on his own.
 

affected

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Joined
Apr 26, 2013
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11,529
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Adding MM with hospice becoming involved really could give him a peaceful journey to the end on his own terms.

Grief and loss counselling for his children, and probably all of you will also really help you all to cope.

This disease is so rugged no matter what strategies are chosen by the PALS, and they do have the right to choose, but it really helps if they feel they have some choices and are supported in them.
 

Green Queen

Very helpful member
Joined
Mar 30, 2015
Messages
1,294
Reason
DX MND
Diagnosis
4/2016
Country
AUS
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Western Australia
I have no advice.

I just wanted to say the care and love you have for your brother is awesome.
 
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