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CodyLady

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Dec 18, 2006
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3
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CALS
Country
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Colorado
City
Denver
My 1st post. My father, almost 76 yrs old, was Dx in October 2006, had been having difficulty in speech since April '06. He has difficulty swallowing and also has preexisting Chronic Obstructive Pulmonary Disease (COPD). He is getting good help for his breathing difficulties. However, he is awfully thin and having trouble getting enough down at mealtime. He's also beginning to have problems walking. We are afraid he's progressing rapidly, and I fear that he may lose his swallowing ability sooner rather than later. He has done a lot of research and much time thinking and praying about it, and he has decided he does not want either a feeding tube or mechanical ventilation. We all respect his decision and will honor it.

My question is for those who had a loved one choose not to get a feeding tube. Did you try to persuade them otherwise? Did a weak and failing loved one regain some strength or mobility? What was it like when it got close to the end, for you and your loved one? What is the process of malnutrition/starvation like under hospice/palliative care? I would really appreciate hearing about your experiences.
 

Angelgirl

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Nov 20, 2006
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Loved one DX
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MI
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Watervliet
My mom was diagnosed in June 2006. Her speech and swallowing abilities are gone....she's 78 yrs old. I think the best decision she made was to get a feeding tube. She was losing weight rapidly and when she was still able to swallow somewhat, there was always the danger of choking. She now has herself on a schedule of eating every 3 hrs. during waking hours thru the tube. She's doing fantastic. For her it's been the best solution. She's maintaining her weight. I think the biggest obstacle is getting over the fear of having one.
 

Al

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7,960
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PALS
Diagnosis
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Country
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On
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CodyLady

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Colorado
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Thank you AL, the website is lovely and very helpful. -CodyLady
 

MamaSara6

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Joined
Apr 3, 2007
Messages
24
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Loved one DX
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US
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GA
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Alpharetta
My mom just started showing noticeable symptoms July 1, 2006--slurring her words and right side weakness. She was diagnosed 11/06 and it has progressed very rapidly. From the beginning she told the Dr. "no feeding tube." He said that's what everyone says to begin with. I don't know what made her change her mind---maybe it was the dr. saying that of his 400 PALS, only 4 refused it and lived to regret that decision. The idea of starving to death while fully aware of it has got to be awful! My opinion is that it would be easier to go peacefully in her sleep than by choking or starving.

She got her tube just a few weeks ago, at the beginning of March. It has not been easy---the stay in the hospital coincided with or caused the last of her walking. She had been able to use a walker for bathroom and bed and going to the car. That little bit evaporated overnight. She also got a bad infection from the incision. So we were not happy with the way this went at all! BUT, now that Mom and sis (her caregiver) are accustomed to the transfers and the incision is finally healed, it's a good thing she has it. She has continued to eat as much as possible, but it's too difficult to continue and she'll be stopping very soon.

My sister was very concerned about the difficulty of using the PEG, but it turned out to be very easy. A much better way to give her meds that she doesn't like the taste of ! We both got comfortable using it quickly. So, all in all, a very good thing to have, it was just a little difficult getting mom's "installed." Good luck with your dad and his decision. My mom may very well refuse a bipap (which is very close!) and definitely a vent, but I'm okay with that. The feeding tube we couldn't live without. :lol:
 

Al

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Joined
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Messages
7,960
Reason
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Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi MamaSara6. Welcome to the forum. Glad to hear that things settled down and your mom and she is doing better. She may just change her mind about the Bipap. It is not as big of an ordeal as a PEG tube.
AL.
 

lunarruna

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Messages
145
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CALS
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xx
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xxxx
I recommend the book "Dying Well" subtitled 'peace and possibilities at the end of life. ' By Ira Byock, MD.
Although it is about hospice relating to many illnesses, there is a chapter about a man with ALS who decides to stop eating when it gets very difficult. My husband and I found this chapter very comforting when we were facing this.
I will say that my husband later changed his mind and got a feeding tube, and has been very happy with the decision...but he knows that if he ever gets to the point where he doesnt want to go on, he can request 'no more feedings' and pass fairly peacefully it seems.
Peace, Beth (CALS to husband Shannon, diagnoseded 8/04 at age 40)
 

nsmith555

Active member
Joined
Feb 27, 2007
Messages
67
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Loved one DX
Diagnosis
03/2007
Country
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State
OK
City
Guthrie
I'm facing this same situation with my mom. She just had her first visit w/the ALS clinic in our area today and the doctor (who was excellent!) really stressed that she needed and could greatly benefit from a feeding tube. Her choking is pretty bad and her FVC was around 50%. He also encouraged the use of a breathing assist, which I'm sure is a bi-pap.
I'm really encouraging my mom to get the tube because choking to death has to be one of the worse ways to die! A friend at work has an 11 year old son who has been in a vegetative state since 3 months old from accidently having a bottle nipple lodged in his throat and the resultant lack of oxygen to his brain left him completely helpless. My friend's reminding me of this made me realize I've got to tell my mom that not only is choking itself an issue, but if she chokes and doesn't die from it, she could be left with severe brain damage.
I know it's all got to be their choice and it's hard for us who don't agree, but I'm going to keep trying to persuade her to.
Nicki
 

jean

Active member
Joined
Jul 8, 2006
Messages
52
Reason
PALS
Diagnosis
07/2004
Country
UK
State
West of England
City
Goodplace
Hi
Just a word of re-assurance. One of the biggest fears of people with ALS is said to be that of choking to death. The good news is that it practically never happens.On the other hand ,starving because of the difficulties with eating must be awful and the feeding tube certainly helps.
best wishes
Jean
 

home again

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Joined
Mar 18, 2007
Messages
19
Reason
CALS
Country
US
State
MI
City
Madison Heights
Hey Cody Lady-
My Mom Was The Same Way. Refused A Feeding Tube. Then She Did Not Eat For 3-5 Days And Was Rushed To The Emergency Room With Malnutitrion. I Live In Mi And Her In Fl, Her Neighbors Were Angry I Hadn't Stepped In, But It Happened So Quickly. I Had Just Been There 4 Months Earlier. She Was Diagnosed In 08/2006, I Was There In 11/2006 And She Lost Complete Swallowing And Speech In 03/2007. She Is Now Moving In With Me In Michigan, And Complaining About The Space She Now Has. All I Can Say Is Every Circumstance Is Different And Every Person Handles It Differently. Give The Best You Can, Be There, And Love Them... That's All I Can Offer. I'd Love To Give Advice, But I Don't Think I'm Even At The Point Yet Where I Could, If I Ever Can. All I Know Is This Disorder, Disease, Whatever, Is Awful! All You Can Do Is Pray, Keep Your Chin Up And Love The Very, Very Best You Can.

Home Again
 

home again

Member
Joined
Mar 18, 2007
Messages
19
Reason
CALS
Country
US
State
MI
City
Madison Heights
HI MAMASARA-
WE ARE ALMOST IN THE SAME BOAT. MY MOM DIAGNOSED IN 08/2006 WITH SLURRED SPEECH AND LOST ALL FUNCTION OF SWALLING IN 03/2007. SHE WAS ALSO TOLD SHE WOULD NEED A PEG TUBE AND REFUSED. BUT WHEN SHE WAS RUSHED TO THE HOSPITAL FOR MALNUTRITION, SHE CHANGED HER MIND. SHE IS FIGHTING. SHE IS MOVING IN WITH ME AND I COULD NOT BE MORE HAPPY AND I AGREE, THE FEEDING TUBE IS A BREEZE! MY MOM HAD COPD BEFORE SHE WAS DIAGNOSED, WHICH WORRIES ME VERY MUCH, BUT I HAVE FAITH AND MORE LOVE FOR HER THAN I COULD EVER EXPRESS. SHE IS SO STRONG. KEEP FAITH, PRAYERS AND HOPE, AND STUDY THIS DISORDER AS MUCH AS POSSIBLE. PEOPLE HAVE BEEN LIVING WITH IT FOR YEARS, AND LIVING QUITE WELL.

GOOD LUCK!

HOME AGAIN

MamaSara6 said:
My mom just started showing noticeable symptoms July 1, 2006--
slurring her words and right side weakness. She was diagnosed 11/06 and it has progressed very rapidly. From the beginning she told the Dr. "no feeding tube." He said that's what everyone says to begin with. I don't know what made her change her mind---maybe it was the dr. saying that of his 400 PALS, only 4 refused it and lived to regret that decision. The idea of starving to death while fully aware of it has got to be awful! My opinion is that it would be easier to go peacefully in her sleep than by choking or starving.

She got her tube just a few weeks ago, at the beginning of March. It has not been easy---the stay in the hospital coincided with or caused the last of her walking. She had been able to use a walker for bathroom and bed and going to the car. That little bit evaporated overnight. She also got a bad infection from the incision. So we were not happy with the way this went at all! BUT, now that Mom and sis (her caregiver) are accustomed to the transfers and the incision is finally healed, it's a good thing she has it. She has continued to eat as much as possible, but it's too difficult to continue and she'll be stopping very soon.

My sister was very concerned about the difficulty of using the PEG, but it turned out to be very easy. A much better way to give her meds that she doesn't like the taste of ! We both got comfortable using it quickly. So, all in all, a very good thing to have, it was just a little difficult getting mom's "installed." Good luck with your dad and his decision. My mom may very well refuse a bipap (which is very close!) and definitely a vent, but I'm okay with that. The feeding tube we couldn't live without. :lol:
 

MamaSara6

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Joined
Apr 3, 2007
Messages
24
Reason
Loved one DX
Country
US
State
GA
City
Alpharetta
HomeAgain---what is COPD? I've seen that acronym around here, but have no idea what it is! That's great that your Mom is moving in with you; it will be hard for you, but a great joy, I'm sure, to care for her. My sister beat me to the punch, so to speak, and nabbed my mom first. But that's okay, because Mom is very happy with her and her child is grown. I still have 6 at home to take care of too!

Mom's biggest problem is that she seems just resigned to death. It breaks my heart that she can hardly talk and won't use her dynavox. At this point she doesn't even want the bipap, which I'm sure is going to be addressed in the next week or so at her dr. visit. She just wants out instead of trying to make the most of the time she has left. :(

Is your Mom bulbar onset? The Dr. didn't think my mom was, or maybe he just said that to give her hope. Noticeable right side weakness started the same time as the speech problem, but she had had a few falls in the last couple of years---which is what he latched onto. But she's gone very quickly to almost total immobility. There's still a tiny bit of speaking and eating, and she can still use the toggle on her wheelchair, but barely.

Have a blessed Easter!
Sara
 

HeatherS

New member
Joined
Apr 8, 2007
Messages
3
Reason
PALS
Country
CA
State
Manitoba
City
Winnipeg
Hi.

My Dad's ALS progressed from his toes up, therefore the breathing / eating was the last to go. He did not want a feeding tube and we didn't force anything. I wouldn't have wanted to prolong such a terrible illness. Had the breathing / swallowing been the first he had trouble with, I don't know that we would have made the same decision.

My Dad lived approx. 4 years after diagnosis and was able to stay at home. He died in a hospital bed in his own home in a nice room with my StepMom and I by his side. The good news is that he did not struggle / panick / choke, he simply let go and had a peaceful passing.

His body was however weak and paralyzed and the steady decline of the breathing / swallowing problems did not last much longer than a month. He basically starved / dehydrated himself but the end was already near. It would be a tough decison if the swallowing / breathing went first. Either way, I would have supported any decision he made as it is his life / death. I would however have reminded him that he can change his my at anytime and I would support him.

I hope I've helped,
Heather
 

midwestgirl

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Joined
Feb 13, 2007
Messages
101
Reason
Loved one DX
Country
US
State
IN
City
Indianapolis
Hi Nicki! From my previous posts, I'm sure you know my mom did not want a feeding tube. Well, she did come to a decision herself to have get a feeding tube. She realized she just couldn't swallow foods very well anymore and was getting very frustrated. The feeding tube was placed April 2 and she has not had any problems. Her skin looks much more hydrated, and no more choking! Her nutritionist recommends that she doesn't eat food by mouth anymore because of the aspiration, or choking, risk so that is difficult for her. I'm curious - how many who have feeding tubes do not eat any foods at all? I would love to give mom a few bites of pudding, or supplements - which she loved, but at this point I haven't. She does say she doesn't feel hungry, just misses eating. Thanks!
 

anne

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Joined
Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
Hi Midwestgirl. My mom has had a peg tube since Jan 07 and she does not eat anything by mouth. She originally would eat a little yogurt but she has now stopped. Sometimes she will try to drink a small amount of boost just to wet her mouth. Anne
 
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