Old 01-05-2007, 10:24 AM #1 (permalink)
Eponine's Avatar
New Member
 
Join Date: 2006
City: Springfield
State: MA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 18
Eponine is on a distinguished road
Eponine Eponine is offline
New Member
Eponine's Avatar
Join Date: 2006
City: Springfield
State: MA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 18
Eponine is on a distinguished road
Default Concerns about breathing....

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
Eponine is offline  
Old 01-05-2007, 12:29 PM #2 (permalink)
New Member
 
Join Date: 2006
City: Hickory
State: NC
Country: US
Interest: I have been diagnosed with ALS.
Posts: 14
susantarlton is on a distinguished road
susantarlton susantarlton is offline
New Member
Join Date: 2006
City: Hickory
State: NC
Country: US
Interest: I have been diagnosed with ALS.
Posts: 14
susantarlton is on a distinguished road
Default 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.
susantarlton is offline  
Old 01-05-2007, 12:59 PM #3 (permalink)
Eponine's Avatar
New Member
 
Join Date: 2006
City: Springfield
State: MA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 18
Eponine is on a distinguished road
Eponine Eponine is offline
New Member
Eponine's Avatar
Join Date: 2006
City: Springfield
State: MA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 18
Eponine is on a distinguished road
Default

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.
Eponine is offline  
Old 01-05-2007, 01:10 PM #4 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

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.
Al is offline  
Old 01-05-2007, 02:42 PM #5 (permalink)
Mike27's Avatar
Member
 
Join Date: 2005
City: Edmonton
State: Alberta
Country: CA
Diagnosed: 10/1993
Interest: It's only a part of my life, not my whole being!
Posts: 283
Mike27 is an unknown quantity at this point
Mike27 Mike27 is offline
Member
Mike27's Avatar
Join Date: 2005
City: Edmonton
State: Alberta
Country: CA
Diagnosed: 10/1993
Interest: It's only a part of my life, not my whole being!
Posts: 283
Mike27 is an unknown quantity at this point
Default

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.
Mike27 is offline  
Old 01-05-2007, 03:08 PM #6 (permalink)
Eponine's Avatar
New Member
 
Join Date: 2006
City: Springfield
State: MA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 18
Eponine is on a distinguished road
Eponine Eponine is offline
New Member
Eponine's Avatar
Join Date: 2006
City: Springfield
State: MA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 18
Eponine is on a distinguished road
Default

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
Eponine is offline  
Old 01-05-2007, 03:14 PM #7 (permalink)
liz's Avatar
Senior Member
 
Join Date: 2006
City: Albany
State: NY
Country: US
Diagnosed: 11/2006
Interest: I have been diagnosed with ALS.
Posts: 643
liz is on a distinguished road
liz liz is offline
Senior Member
liz's Avatar
Join Date: 2006
City: Albany
State: NY
Country: US
Diagnosed: 11/2006
Interest: I have been diagnosed with ALS.
Posts: 643
liz is on a distinguished road
Default

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
liz is offline  
Old 01-11-2007, 10:56 AM #8 (permalink)
New Member
 
Join Date: 2006
Posts: 25
helper is on a distinguished road
helper helper is offline
New Member
Join Date: 2006
Posts: 25
helper is on a distinguished road
Default

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
helper is offline  
Old 01-11-2007, 02:38 PM #9 (permalink)
Eponine's Avatar
New Member
 
Join Date: 2006
City: Springfield
State: MA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 18
Eponine is on a distinguished road
Eponine Eponine is offline
New Member
Eponine's Avatar
Join Date: 2006
City: Springfield
State: MA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 18
Eponine is on a distinguished road
Default

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.
Eponine is offline  
Old 01-11-2007, 09:35 PM #10 (permalink)
sara06's Avatar
New Member
 
Join Date: 2006
City: Jenison
State: Michigan
Country: Ottawa
Interest: I took care of my mom, ALS is familial in my fam.
Posts: 29
sara06 is on a distinguished road
sara06 sara06 is offline
New Member
sara06's Avatar
Join Date: 2006
City: Jenison
State: Michigan
Country: Ottawa
Interest: I took care of my mom, ALS is familial in my fam.
Posts: 29
sara06 is on a distinguished road
Default

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
sara06 is offline  
Old 01-12-2007, 10:31 AM #11 (permalink)
Eponine's Avatar
New Member
 
Join Date: 2006
City: Springfield
State: MA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 18
Eponine is on a distinguished road
Eponine Eponine is offline
New Member
Eponine's Avatar
Join Date: 2006
City: Springfield
State: MA
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 18
Eponine is on a distinguished road
Default

Sara06,

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

Susan
Eponine is offline  
Closed Thread

Tags
advice, als, arm, back, bed, breathing, brother, caregivers, chair, dad, early, family, father, feeding, feeding tube, mobility, night, speech, vacation, wrong


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Als concerns Lydia8800 Do I Have ALS? Is This ALS? 7 01-04-2016 10:04 PM
Concerns about ALS bottura Do I Have ALS? Is This ALS? 14 10-29-2015 06:43 PM
ALS Concerns vc74 Do I Have ALS? Is This ALS? 4 12-21-2014 06:48 PM
EMG concerns elva Do I Have ALS? Is This ALS? 31 04-28-2012 01:11 PM
More ALS concerns wishingwell Do I Have ALS? Is This ALS? 10 04-19-2012 01:33 PM
A few major concerns notme Do I Have ALS? Is This ALS? 20 04-06-2011 06:53 PM
Ear concerns again michelleG Do I Have ALS? Is This ALS? 4 08-09-2009 05:31 PM
ALS Concerns ord1375 Do I Have ALS? Is This ALS? 2 09-21-2007 02:14 PM


All times are GMT -5. The time now is 06:50 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016