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Carolynyg

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I've had ALS for a little over two years, am about to move in with parents, who are elderly, because it's getting harder and harder to live on my own. I can still do things for myself, tho wheelchair bound, but am also losing strength in my dominant hand. (Absolutely no bulbar symptoms I've noticed yet). I am terrified of being a burden on my parents and am planning to stop eating and drinking when I'm no longer able to wipe my behind. I'm scared because I'm wondering how hard that will be...I like to eat!! Also the town my parents live in is very conservative and I'm worried the hospice workers won't accept my decision. I absolutely do not want a feeding tube or ventilator, I wish I'd develop bulbar symptoms before I lose my arms, but it doesn't look like that's gonna happen. I'm wondering if there are any family of PALS who went through this with their loved one...I spend a lot of time worrying about the end. I have no drugs I can take to end it all, and I'd prefer not to do anything illegal anyway. (Also I'm not depressed, I do a lot of fun things and am trying to enjoy life as much as possible while I can. However I would love to hear how others who stopped eating and drinking fared.) Thanks! I appreciate the wisdom, compassion and practical advice on this site.
 

GregK

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Those who've successfully stopped eating and hydrating probably can't reply ...

You need to have very clear, witnessed Final Directives.
 

twitchykitty

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I can't comment on the legality etc coming from a different country, but I opted not to have a peg not wanting to prolong the inevitable. Like yourself I have limb onset, (I'm assuming). What the dr's and MND nurse did say they would do if I could no longer eat/drink was medicate me so I'm comfortable and not suffering.

Just know you can always change your mind, you never know how you will feel in the future
 

fallisgreat

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ny
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i also am not having any life support,my thoughts are the same;ie hope bulbar shows up before my limbs are gone,less time laying there waiting for the end.
 

affected

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It's the breathing that will take you out rather than bulbar symptoms. They are awful to experience :(
 

twitchykitty

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PALS
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AUS
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It's the breathing that will take you out rather than bulbar symptoms. They are awful to experience :(
You are completely right! I don't hope for swallowing difficulties I pray my breathing gives in first.

It's awful that any of us have to even entertain these thoughts
 

Ells

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Carolyn,

It's heartbreaking to read of your situation. You're in a difficult position w/ elderly parents and trying to come to terms w/ your progression.

However I would love to hear how others who stopped eating and drinking fared.)
As Greg pointed out, PALS who stopped eating and drinking are no longer with us. You asked a question; I know of a PALS who stopped eating & drinking. She was healthy (a lot of us are) when she stopped and was supported by a Palliative team who gave meds when needed. It was a long process.

Can you talk things through w/ a health care professional to get an idea of what you'll face?

Ells.
 

nebrhahe53

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Joined
Jun 13, 2014
Messages
1,016
Reason
PALS
Diagnosis
06/2014
Country
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State
Tx
City
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Hospice has specific rules that Texas can't overrule. I don't know about Dallas, but in Austin, I'm in hospice and when I'm ready, I will take off my breathing mask and go to sleep...... The eating method is much harder and laborious. You will die from dehydration before starvation, and I hear it's not pleasant,
Not suggesting you do this, but I hear if pals get O2 they go into CO2 narcosis, much quicker, and from what I know they haven't banned oxygen yet, even in Texas, although if there is one state that would, I'm sure it would be Texas.
Of course if you are not breathing impaired, that might not work.
If I were you I'd call the various hospices near you and see what is legal. They all have different rules, so don't call just one. Be honest with them and see what your options are,
Of course, you can choose to move to a more enlightened place, like oregon,, where doctors are actually allowed to help terminal patients end their suffering.
 

patoyeah

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Joined
Mar 30, 2016
Messages
249
Reason
PALS
Diagnosis
11/2012
Country
US
State
NJ
City
Dover
i have known pals that went the starvation route. from emails and such, i was told it was rough. i believe there are easier ways to go. i am not familiar with them, but Neils description above is one of them. i think several gases are available to serve this purpose. if your hands and arms are gone, u may have to involve others.

if u r looking for a reason to continue living; i am fully paralyzed. only have eye movement and some jaw movement, it is not that bad for me. but experiences will vary for each person.

if i can do anything for u, please let me know.

take care,

pat
 

Carolynyg

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Joined
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Messages
16
Reason
PALS
Diagnosis
11/2015
Country
US
State
TX
City
Dallas
Wow, thanks SO much everyone for your replies, I am so touched by all of them. (I'm gonna defend myself here, hey, I KNOW that no one who's actually done VSED can tell me what it was like, ha!) But I figured some people would have heard stories, and I appreciate what everyone shared...I mean, just the fact that you all replied and took me seriously is such a gift!! I've decided that I DO need to talk to the hospices in Abilene as soon as I move there. And for those of you who pointed out that I might change my mind as I progress, yes, I understand. I once said I would NEVER have a PWC and accessible van, and now I'm thrilled to have those things. Never say never!! THANKS EVERYONE, so MUCH!!
 

Carolynyg

Member
Joined
Jan 28, 2016
Messages
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Reason
PALS
Diagnosis
11/2015
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US
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TX
City
Dallas
Thank you Pat, I'm very touched by your reply...take care
 

lgelb

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Carolyn, there is no reason to move, to call hospices at this point, nor to contemplate starvation. It is most likely that you and your parents will see it the same way at the same time; you are family; that is all the help you will need. Talk with them and make your wishes known. Also make sure they are your first and second designees as healthcare powers of attorney and that your advance directive is up to date.

Best,
Laurie
 

Carolynyg

Member
Joined
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Messages
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Reason
PALS
Diagnosis
11/2015
Country
US
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City
Dallas
Yes Tillie, as I've read more about bulbar symptoms, I'm grateful for what I have!!
 

Carolynyg

Member
Joined
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Messages
16
Reason
PALS
Diagnosis
11/2015
Country
US
State
TX
City
Dallas
Thanks Laurie, you're right!! But I do have to move, I simply cannot live alone any longer...
 
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