Status
Not open for further replies.

witzz

Member
Joined
Dec 6, 2007
Messages
19
Reason
Loved one DX
Diagnosis
06/2007
Country
US
State
NY
City
New York City
Hi all,

This the first time I've posted here though I've read your postings for quite a while. Thanks for being there.

My mom was diagnosed with ALS in June 2007 and has deteriorated rapidly. She has remained steadfast in saying that she doesn't want a feeding tube and that when her time comes, it comes. She is an amazing woman - never complained about this, never sank into depression - but she's also realistic about what her life is like now.

And it's very hard, as everyone here knows. She cannot speak, walk, or use her hands at all (the disease started in the hands first, and so it took a while to diagnose). She uses a computer with head mouse to communicate but her life is very very hard. She has been asking the hospice people questions about stopping eating. That is, if she decided to stop eating before she could no longer swallow, what would happen...how long would she linger before dying...and of course, they don't know exactly. Her body is amazingly strong given how disease-ravaged she is and I'm worried that it will be days and days before she can go to her eternal rest.

What do people here know about stopping eating? Do you know of anyone who has done it, and if so, how long did they live afterward? Was hospice really able to keep them comfortable so that they did not suffer?

I hope no one feels that this is a controversial post in anyway. I'm not advocating that anyone else do this (and I don't even encourage my mom to do it, but I'm supportive of whatever decision she makes and feel that it is hers to decide).

Thanks in advance,

Witzz
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
witzz,

I think it would depend on whether she is being given fluids or not. If so, then maybe a month or so. If not, perhaps several days. It also would depend on her weight. (I'm no doc, so don't quote me on that!:|)

I believe hospice would make her comfortable, after all, that is what they are there for.

I don't think there is anything you could ask that someone hasn't been through regarding ALS. Most people on this forum are compassionate and understanding, so don't feel that you have posed a controversial question.
 

ccox

Active member
Joined
May 30, 2007
Messages
71
Country
US
State
TX
City
austin
Hi Witzz,
My mother was also diagnosed in June. Can your mom eat a decent amount of calories each day? How much weight has she lost since June? I would think that giving up eating if she's not having any trouble eating would be difficult. My mother just recently changed her mind about getting a feeding tube, but we really expected that she wouldn't get one (which we respected either way).
To answer your question---length of time is dependent on many things from my research.
How much she weighs currently---it would take a 200 lb. person much longer to pass away than someone who is only 115 lbs.
The other thing that will lengthen the time a great deal is whether she gives up liquids. There's an old saying that says you can live forever without food, but 3 days without water. I don't think it's that extreme, but it give you an idea.
I've sent you a personal message as well as this response.
Hugs to you and your family. It's a tough place to be in.
Carla
 

ccox

Active member
Joined
May 30, 2007
Messages
71
Country
US
State
TX
City
austin
Oops, can't send you a private message because you're contact information doesn't list it. Understandable. I wanted to give you a link that might be helpful to your specific question.
 

witzz

Member
Joined
Dec 6, 2007
Messages
19
Reason
Loved one DX
Diagnosis
06/2007
Country
US
State
NY
City
New York City
Thanks for the replies! Still getting my feet wet, which is why I don't have my email address on file... But anyway, my mom is having difficulty eating already and could get to a point where she cannot swallow, but I think she is weighing the option of choosing her time rather than having it chosen for her. She hardly eats at this point but apparently it's enough to keep her going. It would be merciful if death came within a few days of stopping food and water...I would hope for that outcome, if she chooses that route.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Witz- You and your family are certainly facing difficult times! As you can see from the responses to your post, folks around here are really supportive. I don't have much to add to the discussion but wanted to welcome you. Please keep us informed on how things are going with your mother. Cindy
 

Mary Helen Barr

Active member
Joined
Mar 6, 2006
Messages
61
My father gradually stopped eating. The last couple of weeks, he just had yogurt, coffee, etc. I think their bodies tell them what they can handle. I believe his body eventually just slowed down and stopped. It was not nearly as unpleasant sounding as it may seem. He could have whatever he wanted, but eating and swallowing was such an effort for him. Every now and then he would have a day when he wanted more, and I gave him what he wanted.--ice cream, sherbet, mashed potatoes. He only ever managed a few bites of whatever he wanted, either because he wasn't really that hungry, or he was too tired from the effort.

I can't say how long it will be, of course, but the process was obviously starting when his eating slowed down. I didn't worry about it, because I knew that was the natural order of things, according to the booklet that hospice gave us. He did not die of starvation, though. His breathing was extremely shallow, and he just stopped breathing.
 

beeno

New member
Joined
Aug 21, 2007
Messages
5
Reason
Loved one DX
Country
US
State
South Carolina
City
Pelzer
Stop eating

My husband was diagnosed with ALS in July 2007 and passed November 1, 2007 after being at hospice for 2 nights. He told me 2 weeks (to the day) that he will pass on the 1st of November.
He was eating VERY LITTLE during that time, drank less and less and was made comfortable by hospice with morphine (I think it was morphine, I administrate by mouth when he got restless) for the pain. Once he requested to go to hospice, they increased the morphine to make im comfortable, he ate better the first day he arrived at hospice and than stopped all together including water. He passed VERY QUIETLY in my arms while I was whispering to him.
2 of 4 children where present (by choice) since hospice advised us in the morning that he would be passing that day.

GOD BLESS YOU and your family.
 

givenin

Distinguished member
Joined
Jan 25, 2007
Messages
109
Reason
PALS
Country
CA
State
b.c.
City
salmon arm
givenin

Hi all,

This the first time I've posted here though I've read your postings for quite a while. Thanks for being there.

My mom was diagnosed with ALS in June 2007 and has deteriorated rapidly. She has remained steadfast in saying that she doesn't want a feeding tube and that when her time comes, it comes. She is an amazing woman - never complained about this, never sank into depression - but she's also realistic about what her life is like now.

And it's very hard, as everyone here knows. She cannot speak, walk, or use her hands at all (the disease started in the hands first, and so it took a while to diagnose). She uses a computer with head mouse to communicate but her life is very very hard. She has been asking the hospice people questions about stopping eating. That is, if she decided to stop eating before she could no longer swallow, what would happen...how long would she linger before dying...and of course, they don't know exactly. Her body is amazingly strong given how disease-ravaged she is and I'm worried that it will be days and days before she can go to her eternal rest.

What do people here know about stopping eating? Do you know of anyone who has done it, and if so, how long did they live afterward? Was hospice really able to keep them comfortable so that they did not suffer?

I hope no one feels that this is a controversial post in anyway. I'm not advocating that anyone else do this (and I don't even encourage my mom to do it, but I'm supportive of whatever decision she makes and feel that it is hers to decide).

Thanks in advance,

Witzz

Hello Witzz We recently faced the same thing. My husband had said he wasn't going to use a feeding tube so I aasked the Doctor to come and explain all the optiosn open to him. If he refused to use the feeding tube and could no longer eat or drink then he would dehydrate and doing so his organs would shut down and then his heart would stop or the other would be and more likely to happen is he would inhale something into his lungs and develop pnemonia and go that way but what ever option he took he would be made comfortable with sedation or whatever it took to ease things for him, since then he has changed his mind and we are looking at a feeding tube.

Hope this helps.
 

MamaSara6

Member
Joined
Apr 3, 2007
Messages
24
Reason
Loved one DX
Country
US
State
GA
City
Alpharetta
My mother sounded like your mom, but she did eventually opt for the feeding tube. I was very much opposed to her starving herself to death, and, granted, every situation and progression is different, but I can't say now that it did much good to get the tube. The only real benefit was the ability to give her her meds through it since she had a harder and harder time swallowing pills.

The surgery itself pushed her right over the edge of the plateau she was on. She had been able to use a walker to go to the bathroom until surgery. From then on she was unable to stand or walk.

She rarely had tube feedings in the 7 months she lived after the tube. She continued to eat by mouth, though everything was blended to mush. She loved her cappucino every morning! I would even say she lived for it. :lol: Because when she no longer asked for it, we knew the end was near! But her breathing was more and more compromised, too.

She had not planned the feeding tube, but changed her mind. She had also planned to stop eating and let go when she had had enough. Even though it was awful, there was joy, and she didn't want to leave her children, so she kept eating as her appetite dictated and we didn't have to face that difficult decision. Whenever she refused to eat or refused a tube feeding, my sister asked her if she was "finished" eating, or just not hungry. The answer was always that she just wasn't hungry. She continued to get fluids through the tube with meds.

God bless your family as you struggle with this horrid disease!
 

witzz

Member
Joined
Dec 6, 2007
Messages
19
Reason
Loved one DX
Diagnosis
06/2007
Country
US
State
NY
City
New York City
Thanks for all of the replies!

Thank you so much to everyone for your replies.

My mom definitely eats less and less. The darndest thing is that her breathing is very good, as we discovered at her most recent doctor's appointment. Everything else is very bad, but her lungs seem determined to do their best. She has definitely plateaued, and not in the place or time that we would have chosen.

She still indicates that she might choose her own time, and I'm just trying to be supportive of her no matter what choice she makes. The thought of losing her makes me realize that I'll never be ready to say goodbye, but I do want to help her to suffer as little as possible, even if it means saying goodbye sooner rather than later.

We're never really ready to say farewell to loved ones, are we?

-Witzz
 
Status
Not open for further replies.
Top