What is your FVC number?

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ccox

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Hi all,
I'm trying to gauge how bad off my mother really is. She and my step father are living their lives as though she'll live another "2-5 years". Not requesting special visits from my siblings who live far away. Not talking with us about her final wishes.
They keep the ALS clinic appointments every 3 months and just recently shared some numbers and told us a little more about her visit with them. The thing that was striking was that her FVC is 20. I am under the distinct impression that it is a very bad number---that she should be gathering family around and getting her affairs in order. They (the clinic) just gave her an Rx for a BiPap.
She has many other symptoms, but this one caught me off guard. Please share your FVC number with me if you'd like. I'm grasping at straws.
Carla
 

Al

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Hi Carla. 20 is not good. Mine is around 60 and I've used a Bipap for almost 3 years now. It was about 85 when I got the Bipap. There is another thread somewhere here that has a lot of peoples FVC's but I don't remember where. Anyone help?
AL.
 

Icanmanz

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Carla, 20 is pretty low. God forbid if and when it goes lower than that, and Hospice is not in the picture yet, or is it? If it's not, you'll should call the clinic, doc, or whomever, and get on with hospice. She needs it asap. Before my son passed, hospice paid us a visit here at home, and told me, no more visits to the doc. The doc will start seeing him at home, he is too weak. This was on a Saturday evening, my son was awake, using his speaking device asking the nurse questions, and such. His FVC was about 20 as far as I can remember, and they told him it was dangerously low. and low it was, because the next day (Sunday) he passed at 5:50 PM. It is time to star getting ready. Sometimes I look back, and very much regret not doing a lot of things that I should have done. I have no one to blame but myself, because I had the means to look things up, in order to know what to expect. Don't get me wrong I did do a lot of research on ALS, but when it got to the dying part, I would stop. I was still in denial, my son was at his deathbed, and I still refused to believe , or accept that he was leaving us. This is such an experience. I still think I coud have, and should have done more to assist my son in dying, but I was not ready to let him go. This feeling of "never letting go" is so overwhelming!

Now I am reading article after article about death, dying and such, and I go, "Wow! What an experience. Take for instance like Andres and Citllali, I followed them pretty close, and I could say they were in on it together, in the sense that she eased his departure is what I am trying to say. Oh God, why am I rambling? I think I better quit before I get in trouble. May God bless each one of you!

Irma
 

Al

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Thanks CJ.
AL.
 

ccox

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Thank you for your replies.

Irma, no, hospice is not involved. My mother and her husband have been very adamant about "not talking about it" from the beginning. We, her children, have just asked for simple updates so that we may gauge when and how often they might come visit (I live near her). We have been met with brick walls. Many ugly things have been said because we are "circling like vultures". We just want to know when it's time to gather near. My brother, in particular, would be devastated if mom died without getting to see her again. We really all thought we were close to mom before this diagnosis, but she and her husband treat us as though we are meddling. She's the wall builder and he is the gatekeeper.

If that number of 20 FVC is correct, wouldn't the ALS clinic suggest hospice? I hate to call my siblings and say, "Get down here, mom is dying soon", when I haven't been told that. I can't ask my mom where things really stand, because she cries and her husband yells at me to leave her alone. I guess everyone has to die in their own way, but it is crushing that my mom is choosing not to allow us to be near and help in any way we can. We've said all along, "you don't need to protect us from the truth."

Thanks again,
Carla
 

Al

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Hi Carla. I just realised that you are saying her husband and not your dad. Sounds like a classic case of new or relatively new spouse trying to exert his authority. You are in a difficult position because of his attitude. Do you have any aunts or uncles that you could send over to get information? Barring that could you see her Doctor and explain the situation and ask him for general details. If the husband is convincing her not to take care the Doc should intervene with the help of the authorities if necessary. Drastic measures I know but sometimes you are forced to do things that are unpleasant. Are they old enough that dementia could be an issue with both of them?
AL.
 

Icanmanz

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Carla, I am so sorry this is happening to your family. It is so hard to try to deal with someone that is facing death, and knowing that someone out there is interfering. What are you, or your siblings to do knowing that someone is her husband? You referred to this man as "her husband." If you don't mind me asking is this man the father of her children, your dad? Let's say if this man is only a step father, you and your siblings should try to talk to your mom, and let her know that time is running out, and something needs to be done. Let her know how much you'll love her, just let her know that there is enough pain already, why make it worse. About the wall, I have heard of those walls before, and most of the times these wall are being put up by manipulators. You guys as siblings, should try to knock it down, if all he is is a stepfather. Please let us know what is going on. I hate to see loved ones go through something like this. If you guys allow this to happen, it will haunt you for the rest of your life. I will be praying for you guys, and praying that your mom opens the door for you children! God bless!

Irma
 

brooksea

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Carla,

Do you all live near your Mom? Perhaps it is time for a family meeting! Y'all are her children and have a right by birth (maybe not law) to be informed of her health status!

I agree this could be a case of your stepfather "controlling" the situation, but also he could be thinking that y'all will think him incompetent to care for her. I don't know. So maybe they are down playing the issue so you won't worry. Either way, it is imperative that you advocate for your Mom and find out what is really going on.

Can you contact the ALSA in your area to maybe step in and assess and report back to you? Surely they could use some pretense to make a visit!

20 FVC is NOT good! Sorry!
 

ccox

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I believe that my step father is doing a fine job of caring for her. It's just that they have made it perfectly clear that they don't wish to discuss it. It has gotten ugly many times. Our rights as children (ages 42-50) are obviously secondary to my mother in favor of her husband. I have a feeling that she is really the one controlling all the "We don't want to talk about it".
I would love more than anything to have a family meeting, but they won't have it. She's going to be "doing fine" until she dies, I guess.

I contacted the ALS clinic today, and they cannot discuss anything with me without my mom's permission. I'm certainly not going to get it. My folks are giving us just as much information as they want, and not a bit more.

Irma, regarding the status of "her husband"---it's a weird story, but he and mom were married 50 years ago and had two children (my brother and sister). Then divorced after 5 years. He had no contact with any of them until about 2 years ago. They remarried and have been married for 18 months. While he may be my (half) brother and sister's real father, they don't really have a relationship with him. They have no more pull with him than I do.

I'm not in fear that my mother is not being cared for. I'm saddened that they have no interest in including us in her last months, weeks, days. I'm crushed that where I once could talk to my mother about anything, she now shuts me out because she is in denial or just wanting this to be over with. My sister once said that "folks that are dying don't want to be the center of attention, don't want to have folks boo-hooing around them, don't want folks to even see them."

Thank you everyone for listening!
 

John1

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Hi Carla,

You're in a tough spot without doubt. If your mother won't discuss the ALS with you, perhaps you can just continue to visit with her normally. I suspect ALS will come up up naturally from time to time. If not, at least you can see how she is doing.

John
 

Icanmanz

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coc, thanks for replying. Thanks for untangling everything. Your mom probably feels that your step dad is the one she wants to spend her final days with. You'd be surprised what love can do. Some of these terminally ill folks do not wish to discuss their illness with the ones that they "really love." They are afraid their loved ones are going to go through a lot of pain. In other words they want to spare them of all the heart ache. Als affects people in so many different ways. You really can't be mad at your step dad, because isn't this what she chose?Maybe the whole family should plan a trip together, or is she too far into her final stages? May God bless you all, and I hope she opens up to you guys. Good luck! Have a blessed Thanksgiving!

Irma
 

CindyM

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Hi Carla-I think the it is the hardest feeling to feel cut out of an important life transition of any sort. She would probably feel the same way if you didn't want her involved in your wedding or the birth of a new child or something of that nature when we all believe a family should hang together and support each other. Maybe you should tgell her that, but as gently as possible of course. :)

And maybe Al is on to something: either parent might not be too young for some type of mild dementia.

I just turned the situation around in my head and imagined me telling my adult kids that my breathing function is in the 20's. I have raised them to be take-charge and capable folks. My-o-my I can hear the questions in my head right now. My kids would want to know all sorts of things-as is their right. But sometimes it is hard to give up control. Harder when your body is failing you. Harder still if you want to do something controversial, like be creamated in a family that can't bear the thought or something of that nature.

I think your only option is to go visit as often as you can. Even sibs from out of state should do this - its not like they would be wasting time to go before they are needed. Maybe she will share what is going on, maybe not. But you will rest easy knnowing you tried. JMO. Cindy
 
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