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Eponine

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18
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CALS
Country
US
State
MA
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Springfield
Hello,

My dad was diagnosed with ALS back in July 2006. Since then, he as degressed fast. Last December we were all at Disney enjoying a family vacation. In late Jan/early Feb, he started losing mobility in his left arm. Then by late spring, he was walking with a limp.

Two prior to diagnosed in July, he was diagnosed with prostate cancer. That was the first blow, then the ALS 2 weeks later. From that day on, it's been downhill quickly.

As of today, he can't walk, move his arms, nothing. Can't feed himself or even shift himself in bed or in chair. We have hired a live in. I have a sister and brother and extended family. My sister and I are the primary caregivers. My brother can't deal with it. Extended family have been supportive.

My concern now is that in the past 3 weeks, I have noticed my father's speech is now slurred at times. It is hard to understand him and I try not have him repeat himselft but sometimes I just don't understand him. I have also noticed is breathing is very labored.

He refuses to get a feeding tube or Bi-pap machine. I was watching him last night and noticed the rythm of his chest and how he was breathing which didn't look normal to me.

I am trying to be faithful to his wishes but it kills me to see this happening. Am I making the wrong decision by not making him get a feeding tube or bi-pap? I'm just feeling guilty.

I honestly don't know how much longer he will last like this.

Thanks for any advice you can give me.

Susan
 

susantarlton

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Aug 28, 2006
Messages
14
Reason
PALS
Country
US
State
NC
City
Hickory
breathing problems

Dear Susan, I am also a Susan diagnosed 10/04. your father and I seem to have similar symptoms, except I can still walk.. I am 69 and have also opted against life supports, including the tube. I am also progressing more slowly than your dad. I know you are suffering with his decisions, but this is really our of your hands. Please don't feel guilty about doing what you must. Good luck to your family as you all live thru a mightmare.
 

Eponine

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Joined
Jul 20, 2006
Messages
18
Reason
CALS
Country
US
State
MA
City
Springfield
Thanks for the response. He is 74. I was surprised how quickly everything has happened. The one thing he does have is an appetite. He eating/chewing has slowed considerably but he still enjoys food, so I give him whatever he wants.

I wish you all the best. I can't even imagine having to live with this disease.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Susan. Do not feel guilty. If your dad still has his mind in good shape he can still make decisions about his care. I know it is hard to watch him deteriorate but if that is what he wants, then you pretty well have to let him go his way. If he feels strongly about his wishes the only way you could Make him get a feeding tube or Bipap is to have him committed. Now that would make you feel guilty. Try to enjoy what time you have with him and let nature or God , whichever you believe in take it's course. AL.
 

Mike27

Distinguished member
Joined
Apr 19, 2005
Messages
280
Diagnosis
10/1993
Country
CA
State
Alberta
City
Edmonton
Hi Susan,
That's a helluva thing, prostate cancer and ALS!
I haveto agree with Al, if your Dad is still able to make his own decisions, then it's out of your hands. I know that doesn't ease the pain.
It's alot to deal with all at once, for both of you.

From a legal view, do you have Power-of-Attorney for your dad if he can't make sound decisions? Might be something to have on hand if the need arose.
 

Eponine

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Joined
Jul 20, 2006
Messages
18
Reason
CALS
Country
US
State
MA
City
Springfield
Thanks for all the advice.

My dad is totally with it. Actually, it surprises me that he remembers exactly where everything is located in the house (he lives with me) eventhough he can't get upstairs anymore. I'll say it's not there and he says look again and there it is!

My sister has power of attorney. We basically have everything up to date at this point in regards to things like that. My sister also works for the VNA service so when needed, we will get hospice.

Thanks again for everything.

Susan
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Susan -

A friend of mine chose, over her father's verbally expressed wishes, to have him resuscitated after a heart attack. He lived for three more years much impaired in a nursing home and was so furious with his family for having him revived that he woud barely speak with them when they visited. To this day, she regrets her decision to impose her wishes on her father.

Liz
 

helper

Member
Joined
Mar 3, 2006
Messages
25
My mil who passed away this past november had a DNR and refused to use the bipap machine...she did have a feeding tube (which in her original living will said she didn't want..) in November05 and this helped her gain back the the weight that she had lost. With the bipap she tried it but could only handle it for a minute or so (felt claustrophobic) so we didn't push it. When she lived with my husband and I last summer I was really worried about her breathing. In her last few hours she did have oxygen but thats it...as much as we all wanted her with us longer she just knew her time had come and we respected her wishes.
Jodie
 

Eponine

Member
Joined
Jul 20, 2006
Messages
18
Reason
CALS
Country
US
State
MA
City
Springfield
Thanks Jodie and everyone.

He's holding his own right now but I do notice daily little things. Each day it seems he is slurring his words more and more and it's harder for me to understand him. I just hope he doesn't suffer (anymore than he is now).

All I can say is that this disease stinks! My heart goes out to all who have this.
 

sara06

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Joined
Aug 9, 2006
Messages
29
Country
Ottawa
State
Michigan
City
Jenison
My mom passed away in October of 2006, 10 months after her diagnosis. She too did not want a feeding tube or ventilator. She did use a c-pap machine with the nose pillows for about 6 months. That really helped her to feel more rested.

She was hospitalized a week before she passed. Her breathing became very labored after my brother's wedding, when she chose to go almost two days without the c-pap. She was in ICU for 4 days. She had verbally stated before that she wanted no invasive life support. My mother found the bi-pap machine very uncomfortable and didn't want that either. When I told her what going without it meant she reluctantly agreed to use it. By the time she was able to go home the DR's had let us bring her nose pillow attachment from home and the machine was much more comfortable for her, less affective, but more bearable.

My mother only lasted 3 more days after she came home. Narcosis had set in and she was very tired, but she went on her terms. Her's and God's.
As their children, knowing how many times they have been there for us, it is agonizing to watch them suffer. It makes us feel helpless. Supporting their decisions is the best way we can honor them.

Stay Strong
 

Eponine

Member
Joined
Jul 20, 2006
Messages
18
Reason
CALS
Country
US
State
MA
City
Springfield
Sara06,

I'm sorry about the passing of your mother. Thank you for the inspiration to stay strong. I will!

Susan
 
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