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ccox

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Let me preface this by saying I very much appreciate the discussion on the General Discussion part of the forum. I need some more graphic answers.
My mother and her husband just got a definitive diagnosis from the ALS clinic in San Antonio, but we've (neurologist and our family) suspected it for at least 3 months. While I understand they are still undergoing the "why us" stages, I want them to be completely educated concerning some decisions that are ahead. One that is in need of some serious consideration is a feeding tube. Mom has both Bulbar and lower forms of ALS. She has slurred speech and has trouble swallowing already. They express that they "don't want any holes in mom that God didn't put there." I understand the initial thought process there, but in my research starving to death is awful compared to what has been described as a "gentle process" in letting ALS take it's natural course (slowly decreased breathing).
Have any of you had a relative that initially said "No" to a feeding tube? What made them change their mind? Maybe they didn't change their mind---what happens and how long does it really take to pass away from no feeding tube?
Morbid questions, I know. I would just like to give her some honest feedback about what I believe is a premature decision. My niece is an RN and she's tried to explain, but mom isn't listening.
Many thanks.
 

home again

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I'm so sorry you are going through this. My mom got her feeding tube in March. She did not want one and waited a long time. When she was admitted to the hospital for weakness and a 40-pound weight loss, she decided to go ahead and get it. She is very glad now that she has it, as it is not difficult to use. Putting the weight back on is very difficult, as all her feedings are by the tube. But she is very happy still being here, and the tube has not affected her daily living at all. She is enjoying not having to cook dinner anymore!

Good luck to you and yours.
 

CindyM

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Hi Ccox. I am sorry for what is happening to you family, too. There was a big discussion on all sides of this topic on an earlier thread. Did you see it? If not, you can find it by using the search feature at the top of this screen. It might be good, though, to resurrect this topic. We have some new members who might be able to offer some tips. Regards, Cindy
 

Icanmanz

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ccox said:
Let me preface this by saying I very much appreciate the discussion on the General Discussion part of the forum. I need some more graphic answers.
My mother and her husband just got a definitive diagnosis from the ALS clinic in San Antonio, but we've (neurologist and our family) suspected it for at least 3 months. While I understand they are still undergoing the "why us" stages, I want them to be completely educated concerning some decisions that are ahead. One that is in need of some serious consideration is a feeding tube. Mom has both Bulbar and lower forms of ALS. She has slurred speech and has trouble swallowing already. They express that they "don't want any holes in mom that God didn't put there." I understand the initial thought process there, but in my research starving to death is awful compared to what has been described as a "gentle process" in letting ALS take it's natural course (slowly decreased breathing).
Have any of you had a relative that initially said "No" to a feeding tube? What made them change their mind? Maybe they didn't change their mind---what happens and how long does it really take to pass away from no feeding tube?
Morbid questions, I know. I would just like to give her some honest feedback about what I believe is a premature decision. My niece is an RN and she's tried to explain, but mom isn't listening.
Many thanks.


CCox, you wrote----They express that they "don't want any holes in Mom that God didn't put there." My question is: Who is they? Why are they against the feeding tube? Are they Jehovah's Witnesses, or what? Sorry about these questions. I learned quite a bit about ALS. A feeding tube is very, very helpful. An als without a feeding tube sounds pretty scary to me. Once these people start having swallowing problems, that's when they turn to the tube. My son had his feeding tube inserted long before he started using it. They will also let you now that it is best to get it right away, before you start having other problems. The tube is a big must. Can you imagine not being able to swallow? She will get to the point to where she will not be able to swallow. Once your neck mucles are gone, that's it. ALS is a horrible disease. I hope your mom changes her mind. Try to talk to her. I even hate the thought of a Pals without a peg. I just cannot picture it. It'd be awful, believe me! Good luck and God bless!

xoxoxo,
Irma

PS---Are there Pals out there without a feeding tube? It sounds pretty bad to me not to get one!
 

ccox

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Thanks for the reply. I guess as I sit and type this, I am wondering if my initial thoughts are correct.
Weight loss from malnutrition more quickly eats up any remaining muscle movement you have.
Dehydration is painful and prolonged. Dehydration leads to constipation (at least:| ). Constipation leads to bowel obstructions. Malnutrition saps all available liveliness a person might feel. It just seems like a horrible death to choose.
What's bizarre above all else is that she has consented to taking Rilutek (sp?). Why take such an expensive drug to slow the illness if you just plan on starving to death anyway?
I understand I sound harsh. Heck, she's the one dying. I just want some reality added to this mix. Starving to death will not be a "she died peacefully surrounded by friends and family" sort of ending.
Forgive my harsh tone. Thanks again.
 

ccox

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Icanmanz,
They are not any special religion that restricts medical intervention. They (my mom and stepdad) just feel that if it were in God's plans to have tubes hanging from, he would have put them there. They don't want anything artificial I guess. Aren't prescriptions artificial?
Maybe once they get her barium swallowing test, they'll change their minds. I just want her ALS doc to be blunt with her about how starving to death won't be pretty.
I did read the previous thoughts on the General Discussion thread and some other feeding tube threads from the past.
Another thing I thought of---dying from aspiration/pneumonia can't be good either.
Thanks for listening.
 

CindyM

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You don't sound harsh to me. Maybe you feel it but you are under a lot of stress over this. It is good that you are asking the questions and doing your research, though, because some PALS on this fourm have changed their minds as time goes by. Best to have the info on hand...Cindy
 

midwestgirl

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ALS is such a monster disease that leaves patients and families faced with many difficult decisions. My mother was first diagnosed with foot drop in Dec 2005 and started having mild slurring of speech in April 2006. Her speech kept getting harder to understand and she started having trouble swallowing - each month a progression. She resisted each step - didn't want thickened liquids, didn't want soft food but realized it was getting too difficult to eat normal. She would choose foods she could eat fairly easy - scrambled eggs, mashed potatoes, etc - she would drink chocolate milk, which is thicker naturally than white milk, tomatoe juice - which again is naturally thicker. It is definitely better to get a feeding tube before too much weight is lost and before it is an emergency situation, however mom did not want a feeding tube. I would talk to her, and encourage her to consider a feeding tube, but it remained her decision. Eventually, she got to where she would have trouble swallowing at most meals, lots of coughing, and not getting much nutrition. We supplemented her diet with nutritional supplements like boost.

She did decide to have a feeding tube placed April 2nd of this year, and it has been a great decision. Mom had really waited longer than she should have, but thankfully the procedure could not have went any better. Within days, I could see that she was much more hydrated and had more energy. She still misses not eating (the nutritionist said there was too great a risk of aspiration and recommended nothing by mouth), it is such a social activity.

There are PALS that have opted to not have a feeding tube, and I believe we need to honor their wishes. I have heard that it really is not painful. The body slows down and the patient does not feel hungry.

I'm sure your mom, as well as you, are feeling overwhelmed by everything. I believe most PALS resist a lot at first, and then change their minds after symptoms progress. Good luck!
 

ccox

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Good news update

It's funny how doctors can put things so they don't seem so awfu--at least in my mom's case. I was the original poster here about my mom not wanting a feeding tube. She went to see the ALS pulmonologist (sp?) yesterday and in addition to doing baseline breathing testing he told her he didn't want her to lose any more weight.

That said, it opened the door for me to have another discussion with her about her eating habits, what she's eating, when AND whether she was still against the feeding tube. I believe that she is now open to it. She's just not at all interested in eating. Says it's too much work to chew. Swallowing has become an issue as well. Nothing tastes good. Foods that she needs to gain/maintain weight seldom offer any fiber, and constipation becomes an issue. Vicious cycle.

And so, good news---she's considering the PEG. She sees the ALS team again on the 15th and I'm hoping they'll discuss it in depth. I assured her that she could continue to eat socially, but that she could add major calories through the PEG and not have to worry about weight loss, constipation, dehydration, depression, and extreme tiredness. She's just not putting enough fuel in her tank.
Thanks for listening.
 

CindyM

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Glad things are beginning to work out, ccox. THanks for the update. Cindy
 
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