My father was just diagnosed with ALS, but in late stage

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Jessica231369

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I am 38 years old, and my father is going to be 65 in 10 days. Two weeks ago he was diagnosed with ALS and given a year. I have watched my father decline for the last 4 or 5 years, and the last 2 years have been rough to watch. No doctor could find the reason for his weight loss, and we all believed it was cancer, since he already had 2 different types of cancer before. The doctors just kept telling him it was stress, and my father became so weak; he went from being 175 lbs. to 119 lbs. in the last 4 years. Like I said though the drastic change in weight, energy, and breathing has been progressing at a rapid pace for the last year or 2.

This disease is scary, and ugly. I almost feel like cancer would of been better...at least for my father it would of been. All of my father's life he was a hard working blue collar man. He worked his fulltime job and then he would do contracting jobs on the side. Even on vacations my father was not happy because he felt like he should be working and that this was a waste of time being on vacation.

This disease is all of my father's worst fears coming true. He is afraid of suffocating, and he being so active his whole life is now going to be basically paralyzed. I keep thinking about this, like how is this fair to him? Everyone has to die, I am not upset that he is dying, because in some ways I have already prepared myself for that the last few years, but the way he will be dying is what makes me angry, and makes me cry. I see my father afraid and frail for the first time in my life and I try to comfort him the way he once did with me when I was young.

I feel guilty for feeling this, but shouldn't people in these situations be offered a better way out, and a chance to choose when they have had enough? I really am struggling with this disease taking my father the way it is going to take him. I just hurt so much over this. All these years we wanted a diagnosis and with it we believed we could find a way to address it. This is like being stuck under the ice, everyone is trying to help get you out, you are trying to stay close to the surface so they can see where you are, but instead you keep getting sucked under by the current and pulled further away.

I just do not know how to handle this, I am a problem solver and a person that is good with finding resources and making plans. Now, even when I try to help, in the only way I know how, my mother gets offended because she thinks that I am overstepping and trying to take over her territory (for lack of a better word). So, I am left not able to do anything. I am shut out, and left with an energy and feeling helpless. I know this is a lot, but I really need someone that understands, and maybe just will listen.
 
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lgelb

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I'm very sorry for your news, Jessica. Every person with ALS ("PALS") has the same human rights as everyone else to choose the date and manner of death instead of relying on "nature" -- it is only because of our legal system and often misperceptions about self-directed dying, that we don't discuss this everywhere we discuss cancer and ALS, to name two diseases where that often comes up.

At 119 lbs., if your dad does not get a feeding tube or gain more calories from a modified diet soon, he will likely deterioriate fairly rapidly, if only due to lack of nutrition. The same is true of breathing and BiPAP. Are conscious choices being made, one way or the other?

You might want to arrange a meeting or other mode of interaction with your parents, yourself, and a counselor (who can work with you on line if needed) -- his clinic may have a social worker or psychologist available -- to illuminate your divergent expectations, ensure that he is able to define his own priorities while he's still able, and find a path that you can travel together, in whatever time remains.

Best,
Laurie
 

KimT

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Jessica,
I'm so sorry for what you, your father, and your mother are going through. As Laurie said measures can be taken to keep someone with ALS comfortable and have a peaceful death. Some things that help are feeding tubes and a BiPap machine. Also, benzos for anxiety and morphine for breathing difficulties. These meds can speed up death, so it's important to honor your father's wishes.

Many people I've known decide hospice is the best way to go. When a patient is prescribed morphine, doses can be titrated up to a point where there is no longer any fear or discomfort, only a peaceful death.
I agree that family counseling is in order. Is your father being seen by a neuromuscular doctor at an ALS clinic? What equipment is he now using?

Please feel free to ask any question or voice your concerns. If you need to vent, this is a good place.
 

Jessica231369

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Thank you for your words. Unfortunately my father believes he doesn't need a feeding tube right now and isn't sure that he will ever want one. He has a breathing machine that is better than a BIPAP. It's like a respirator, I just can't remember the name of it. He's got a respitory therapist that comes to check on him and his he's doing with the machine. He also has a machine that forces him to cough, and helps get the fluid from his lungs. He is getting a hospital bed and a shower chair. My parents discussed getting a wheelchair, and even though he's come close to falling and he's losing energy and his breath when he's walking, he's not ready to ask for it.
They will have a social worker soon, nutritionist, and speech therapist. He doesn't go to a clinic, but there isn't really any around my area. He has 2 specialists, and he's been given information about a support group.
I think the biggest hurtle is that they diagnosed him in late stages and they haven't had time to process this. Which is causing them to delay some things.
I'm trying to learn how to be around him without bringing up the disease. It's hard not to, and I know he just wants life to not be all about his disease. I've tried to talk with both my mom smf dad about the idea of a feeding tube and a wheelchair, but my father doesn't want to do either rift nor bc it makes him feel like the disease is winning, or that he's losing his independence. My mother of course respects his decisions, but really hasn't faced this completely yet. She told me she's just not ready to accept that he's dying. She knows it but just isn't wanting to face it. Honestly I'm just not sure what to do. On one hand, I want them to listen to me and understand that delaying things won't help but make it progress. On the other hand I want to be able to have normal conversations and not just talk about his disease. It's so hard.
 

lgelb

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He probably has a Trilogy (called a "noninvasive ventilator" the way he is using it, basically a BiPAP with an internal battery), and a CoughAssist.

I realize that you might think not getting a feeding tube is unfortunate, but that's his choice. So I'm not sure I'd call it a "delay" that will hasten progression. It might simply be his final choice. His weight loss may already be irreversible. If he knows the stakes, he plays the cards.

And with that choice, tbh, most of the other choices you're worried about, and your parents' acceptance of what's to come, are less important. It's not a long-term scenario, Jessica.

If he wants to go out having "won," without all the bells and whistles but with his independence as he sees it, that is how it will be. As for your mom, she is acknowledging her feelings now, so I believe that she will be OK in the end, with you at her side.

Your instinct is right. Don't spend your last weeks or months with him trying to get him or them to "listen to you." Spend that time listening to him and them. Gather ye rosebuds.
 
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ReginaS

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My partner chose not to have a feeding tube and I would say it was rough at the end. The ability to swallow, chew, move the tongue was gone. But the hunger and then the thirst did not stop. His breathing was his strongest area. Make sure you have hospice or palliative care involved and follow their recommendations. Many PALS fall asleep peacefully.

The most important thing for me as his caregiver and friend was to listen and accept his wishes. He had the right to finish his days the way he wanted to. I was there for support, not to change his mind so that I would have less stress - even though many times I wished things were different. It was not easy - but an experience that will stay with me for ever.

I talked to friends where I could talk care of my feelings and troubles so that there was a lot of space in me for whatever my PALS needed. The initial diagnosis was a shock for all of us and it took a while before it settled. It must be hard to hear that the end is near.
 

Tlo57

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I totally understand how you feel, especially about being a problem solver and feeling helpless. I always took care of twin brother. Whenever he had problems, he came to stay with me, well at least until he got married and then I was still kinda bailing him out of scrapes. I hate that I couldn’t fix this. I couldn’t make any decisions for him because his wife had all the authority. I also understand how it’s tough with your mom. I don’t have any answers or advice, nor can I offer any wisdom. All I can say is that I understand your pain. It sucks and it’s not fair! It’s good to be able to vent and share your extreme pain with others who feel that same pain. I’m thinking about you❤️
 

Jessica231369

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Thank you all for responding. My father's decisions will be respected, but there is differences in informed decisions and making decisions based on assumptions. When I talk with my dad, I ask him questions about his feelings and reasons. Much of those decisions are based solely on his idea of what it would mean. He believes a feeding tube means he can't eat by mouth anymore. A wheelchair means that he's not able to walk anymore. For him it's about him losing his independence instead of him maintaining his independence. It's the stigma behind those things. Which is why I'm trying to discuss it with him. So that he let's that stigma go. It doesn't help when his brother makes remarks about the simplest things like his trilogy machine. Talking my father that soon he'll have a tube down his throat, and enforcing the idea that if he doesn't use it he'll lose it.

I think that with my father's late stage diagnosis, it's given no time for acceptance, processing and education. Most people in the family do not understand this disease, and have their own ideas on what it means. Some still have hope for this to be something that will get better, or that he will have years left to adjust to this. I'm not that kind of person, I don't believe in denial, delaying, or avoiding. This is where I am different than many of my family. I'm in front of them in a sense saying, it's not time to take it slowly. I'm not saying my thinking is correct, this is just my personality. I understand where others are, but sometimes it's frustrating. As for my father, he's scared, and he's hoping this isn't really happening. When it comes to him, I listen, and we discuss things. My father and I are very close, and I'm very respectful of him. I've begun to slowly just leave things alone. My biggest thing with him is that he is shown dignity throughout all of this.
I'm not sure how to stop crying, but I'm getting better. At least it feels that way sometimes, but other times it truly hurts. Sometimes the painful realization that I'm losing my father comes to the surface. I find myself wondering what life will be like without him, the most important and influential man in my life? How will I handle his funeral? How will I be strong enough to help my children and my mother, if I'm broken? I am afraid that I'm going to fall apart.
Does anyone else feel like this?
 

lgelb

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Not sure how we got to a tube in his throat since the feeding tube is in the stomach? Or are you saying that's your uncle's error? If so, you can correct it.

I agree that it is best to make informed decisions, but you're right, there is a lot of denial involved, so that's why I frequently say, "Provide bite-sized nuggets of information, just in time" rather than a laundry list of to-do's.

If he is late in the disease, that still goes in the sense that there's no moral imperative to understand everything to come once key choices have been made. I realize that's not you, but it may be him.

As to your own grief, that will wax and wane, too. But don't worry about how you will handle things afterwards. You will continue to help those around you.
 

Jessica231369

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What I was saying was that my uncle made a remark regarding my dad's trilogy machine. Saying that by using it soon enough he'll be having tubes down his throat.
 

lgelb

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That's certainly pointless -- there's no such forthcoming tube. I'm sure you can make that clear.
 
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