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slicknscoot

Member
Joined
Sep 8, 2012
Messages
10
Reason
CALS
Diagnosis
09/2012
Country
US
State
Pa
City
Northumberland
My mother inlaw just received her Bipap and is refusing to get used to it. She keeps saying that it won't be long till she's going to pass on and feels that she doesn't want to use another equipment.
Her onset problem of drop foot began in May 2010. She was diagnosed Aug 2012. She is walking slowly with her walker. 9lbs of strength in her left hand and 24lbs in her right. Her lung capacity is currently at 42%. She is able to eat small things by mouth.. Toddler size meal but has to be really careful and it takes her about an hour to eat that. She is able to care for her self in means of personal hygiene, it just takes longer. She is almost slurring to the point where I can't understand her and I'm her 24 hr caretaker. She is getting a dynavox to help within the next week. She has a peg tube and states that she refuses to be put on a ventilator.

My question is this.... and I don't want to sound harsh but we are still new to this...
Does ALS leave you bed ridden before you die? Or do some people die before they are bedridden?

I used to think that she was in the end stages until I watched videos on youtube and think that she is in the early stages.

I keep telling her that her neabulizer, cough assist and suction machine and now her bipap is to make her more comfortable rather than to have her suffer through this ordeal.
 
Glen was never bedridden or in a wheelchair. But each case is very different. Because of his FTD (which seems to be more common with bulbar onset) his compliance with many things was very limited. He had a bipap but took it off whenever we left the room. He refused a peg. Ventilator was out of the question. At some point, you'll find you have to choose your battles so that you don't totally burn out as a caregiver. And if she feels like the benefits of various machines aren't worth the discomfort... well... at some point you may need to let her as an adult make choices that maybe you wouldn't make. There is nothing easy about this disease.
 
She may be feeling depressed right now, perhaps the need for a bipap has left her feeling down. In my opinion for what it is worth--it doesn't sound like the end is imminent. not everyone is bedridden at death--it is the breathing that gets you.My husb and has been in a wheelchair for 3 years and he is not at death's door. Some pals use Bipaps for years before passing. encourage her to see something positive in life and find a reason for living--giving up is the worse thing.
 
Hi, I'm new here and can relate a bit to this post. My mom will be 73 in Dec and was just formally diagnosed in Oct with ALS. Her speech has began deteriorating a year ago and is now completely gone. She has not yet tried the Proloquo app I put on her IPAD so communication is extremely difficult. Due to chest congestion over the weekend, I'm about to suggest a Bipap and/or cough assist to her. Fingers crossed that she'll be receptive. Not to be morbid, but my husband and I were also wondering if it's a foregone conclusion that she will be in a wheel chair at some point and then eventually bedridden. She's been very active until recently.
 
I refused to use my BiPAP for a while. I changed my mind when using it was better than not. Soooo she might change her mind. Or she might not.

This disease sucks. If she wants to live out her days gasping between whiskey shots and ice cream, let her. My philosophy is that whatever doesn't scare the horses is ok.

May God bless you for your caring and compassion.
 
Sunny.. the answer to your last question is there is no way to tell. There are members on this forum who have been in a wheelchair for years. My husband never used one. It's just impossible to tell until you are able to see what course the disease takes with your particular PALS.
 
Way before his ALS, my husband refused to use his [then CPAP, now BiPAP] for years. It's a scary looking machine/mask that many people associate with death, suction, choking and artificially prolonging life. Try to start her on the mask sitting up and doing something distracting, like watching a screen. Try it yourself with her watching. Walk through what it does and does not, in terms of sleep as much or more than breathing. "It helps you sleep more deeply so you can do more during the day." She can still take it on and off herself and that might give her confidence. Make sure her mask has quick release clips.
Point out that it's only for use while sleeping for now, so most of the time it's on, she won't even have to know she's using it. When she says, "I won't be able to fall asleep with that thing," make her a good-sized bet that she can. Make her fit the mask properly to make the bet fair. Flip on the fan, put on some music she likes, douse the lights and leave the room.
 
Our rate of progression is so varied.

My foot drop started early in 2010 too. I've been in PWC for a year and just recently given up standing transfers. I use nasal pillows with my BiPap when I nap and at night. It reduced bouts of nocturia for me. I got used to it by wearing it for short periods during the day while reading or watching TV. It also makes me less fatigued at meal time if I use it for a half hour before eating.

My arms are getting weaker now and speech is getting a bit slurred, especially if I'm tired. Still eating regular foods and feeding myself. Other ADL's require assistance.

Good luck
 
She hasn't really tried the bi-pap yet but they have given us some anxiety meds to try when she is ready. The latest battle is constipation... I think she is just too weak to push pudding consistancy poop out. She poops at least 2 times a day but she says its only a little bit and then the pudding comes and then she strains. She is upto 91 lbs and takes miralax everyday. Last week we added suppositories and then a fleet enema only to turn around and have it start all over... and ideas? It sounds like it needs to be water consistncy or she just can't go...
 
i use a homopathic medicine called gi drainage by desbio, 20 drops in wate every other day. tried m.of.m. but its hard on the kidney
 
If you read a lot, you will find that most ALS victims die within 36 months of diagnoses. This was exactly the case in my late wife's death in Aug. of this year. In her case, she was a quad for most of 11 and until she died in Aug.of this year. I can still see her lying there wishing to walk again. I think that was one of the most heartbreaking aspects of this whole damnable disease. ALS affects everyone differently. In my wife's case she did not want to drag her death out and refused bipap and feeding tube. She was almost 70 and ready to go. I do not blame your mother for not using it. She is probably just tired and like you, said, maybe ready to got sooner than later. Let her make the decision. She knows what is best for you and her.
 
your mother may not have enough fiber in her diet. i use citracel twice daily , follow directions,and when the pudding thickens its less strain. constipation to me is when you try to dislodge a tennis ball.
 
was your mothers fvc done at als clinic. if so please ask the breathing theapist if she could do an exersise called stacking air, if so teach her how to do it. i incresed from 86% back to 93%. remember the more liquid in the diet less solid waste. it goes through the kidney, i think, then pee
 
As a caregiver, i always go through these kind of problems with the patients, but what i can suggest you is only that she is in depression now, and when a person is suffering from ALS then it becomes very hard for him or her to live a normal life.
At this stage she is very much irritated and you should not loose hope and continuously try to help her in making her life normal.
 
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