What is considered Final Stages?

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waterdreamer

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Jun 16, 2009
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Loved one DX
Country
CA
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ON
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Hamilton
My mother was diagnosed in 2006 with ALS and was told she would live for 2 years. She is still with us :) however I am just wondering, what the next stage is for her because this horrible disease is just getting worse and worse (as expected but I am lost at this point in the game). I asked my Dad but he was very vague and I can't seem to find any information on this. She lost her speech/ability to eat and move long ago it seems, now she can't hold her head up. I am just trying to prepare myself.
 
Sorry to hear about your mother! In answer to your question, there is no way to tell what will happen next or the time frame. It is different for everyone. She must have a PEG from what you said. She will continue to keep loosing strength and eventually her diaphragm will get weak and hinder her breathing. Have you considered a BiPap and after that a trache and vent?

Have you been in touch with the ALS Association in ON? They can provide you with lots of information.

Feel free to ask questions. Welcome to the forum!
 
My mom does have a Peg, she is very resistant to devices generally, though....doesn't use them until she really has to.
 
My mom does have a Peg, she is very resistant to devices generally, though....doesn't use them until she really has to.

Ditto! My mother is the same way. She has fought us tooth and nail on everything. She refused a bipap earlier and now she is starting to leave us. She can barely move her head and she is quickly loosing the use of her right hand. Those are the only remaining parts that work. For her, the last stages appear to be sleeping more, crying more when she is awake, asking for more and more pain relief, urnine darkening, breathing more labored, and a general appearance of demise. They have told us her feet are swelling so now we have to cut back on her feedings and water through the peg. She doesn't even really want the Ensure now. Her main complaint is pain. This disease has been bad all along but, now it is a horrible existence for her. I pray the Lord takes her soon.
 
This is a tough stage of the illness and as Joel indicated there is no real time line or way to predict what will happen next. It could continue in a slow progression or you could run into a complication (flu, pnuemonia, fall) that could excellerate things to a few days. I know my wife reached the same stage as your Mom several weeks ago and it has just taken the fight right out of her. It's hard to stay motivated when this desease takes everything away from you. That makes it even more important for those around our PAL's to keep a positive attitude, but it sure isn't easy sometimes, watching what they're going through. I guess we just have to take one day at a time, frequent breaks to catch our own breath and look for the small things that we can still enjoy together. Good luck and you're not alone.
 
Oh wow, I didn't know all of this. Thank you everyone. I have been feeling very alone lately. My Mom is sleeping almost all the time now in her chair, crying quite a bit (which isn't at all like her and she really hasn't been very emotional until recently). I noticed the other day, her feet were more swollen than usual. She is asking for pain medication quite a bit too. She did laugh the other day though, which made me smile, because her caregiver didn't know what she wanted and sometimes I have a psychic connection with my mother and I figured out she was hot and needed the fan on. I just can't imagine living every day like she does, so I try to make her laugh or smile by doing really silly things.Thank you again.
 
your Mom

That is great that you can read your Mom so well! You are special and obviously the laughter you two share makes you both feel better.

It is soooo difficult seeing her so helpless but seems like you have a great relationship and enjoy your visits. I love to read joke books and maybe you can find one and read some to her. :) Patty
 
Hello,

Reading these posts is just amazing. We have shared some very unique circumstances, all of us. My mother was in the exact same place that you are describing in February before she passed.
I guess, the only answer I can give you, is you just don't know when it will happen, and when it does, you will still be shocked, and un-prepared. I knew the breathing thing was getting bad, but I thought we had at least a couple of weeks if not months, not days.
I am crying as I read your posts because it is awful and devastating to watch your loved ones go through this.
I did feel immediate joy after my mom passed, not for me, but for her! Halelujah this battle is over, and has been won.
I will be here with any support or advice you may need. Just keep lovin' on and kissing those momma's, or you will wish you did more of that once they aren't here.
Man, this disease just stinks so bad, it is sad we pray for death.
May God give you the strength, grace and courage only he can give you.

Love,
Holly

A couple of things that I was expecting that did not happen before my mom's death.
I expected her to stop wanting PEG feeds, this did not happen, she had feeds right up till 6 hrs before she passed. That was something I was using as my indicator when the end was near.
I expected her to be sleeping most of the day, this also did not happen.
I tried to always be one step ahead, and have learned somethings you will just never be ready or prepared for.
 
thank you once again everyone.. as heartbreaking as it is to know others have gone through the same experiences...I appreciate knowing all that I can about this.
 
HARRY77: I was just scrolling through different blogs and saw that you are from Clinton, CT. I am extremely new not only this site, but to ALS. My boyfriend has it. I tried to send you an instant message, but I guess I don't have access to do that and don't know how to get it. An article recently appeared in the Wallingford town paper about Jeff. He is 43 years old, was a marathon runner, and is the most wonderful man in the world. I would love to hear from you. My e-mail address is [email protected]. Darcy Smith
 
We are experiencing some of the same things. My mom has refused the PEG, BIPAP, and pretty much anything to extend her misery. She has very limited use of her limbs and no functional use. She has stopped eating this week, although she really didn't more than a few bites last week. She has difficulty swallowing and easily gets choked up. Last week she started having difficulty swallowing through straws and we continue to try and find creative ways for her to ingest any liquid. Her feet are horribly swollen and she is starting to show severe signs of dehydration. She stays in her wheelchair because she cannot recline without feeling like she cannot breathe. She does not sleep much as she is in constant pain or discomfort but does not like taking the liquid oxycodone as it makes her feel out of it. I try to make jokes when I can to get a smile out of her, but I think she knows we are nearing the end. On one hand, I am relieved that she will no longer have to endure this horrible disease, and yet I feel horrible for feeling this way. I feel that I lost my mom a long time ago when we started this journey because of the damage this wicked disease has inflicted on her body and mind. I can think of no other disease that could be worse and feel so bad that I can not help her more in some ways. I am sorry for venting! I just saw your posts and could totally relate.
 
Watch out for the lower extremeties getting blue. My brother's started about a week before. It seems like the heart is getting tired of pumping blood all that way.
 
Everyone has to die of something, sometime.

Just goes to show each of us is so unique in our own way. My feet have been blue, almost black for over a year, yet I am hanging on. The nurses from Hospice keep giving me fits for getting on my computer , because I sit with my legs down and the blood and fluids pool in my feet, which cause extreme swelling. Since I cannot find a way to get to the forum any other way, my feet will just have to suffer for now.
Some things are more important to me.:roll:

I have no idea when the end will come, but I look so much for it to be be over and to go and be with my Lord and Saviour Jesus Christ, family, and friends who have gone on before. God is the only one who can punch my time card. Until then I fight for reaching out to others to bring them some little bit of comfort if I can somehow. When I am finally gone, please rejoice and be happy for me, that the suffering is finally over. It is more like a graduation exercise for me.

Just a weird thought, which I am known for from time to time,

EVERYONE HAS TO DIE OF SOMETHING, SOMETIME.

At least we have time to prepare, to get our affairs in order, visit friends and family, and make any unfinished business right before the end. Please, do not pass on with unforgivingness, resentment, or bitterness in your heart toward others. Now is the time for peace and forgiveness. Eternity, is a long time to leave things unresolved.

This reminds me of a song we use to sing in church which I cannot remember the words to but goes something like this,
My peace I leave with you, my peace I give to you. Not as the world giveth , give I unto you. Don't let your heart be trouble, don't let it be afraid, My peace I leave with you.

Just found the scripture but really like the song,

John 14: 27
Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

dovebible.gif
I feel so small in the presence of God.
 
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May I just say, Capt. Al that one of the reasons this forum is so special is because of people like you. Out there in the world, I would probably never have crossed paths with someone like you. You live in Mississippi, somewhere I have never been and I live in Canada. You are religious and I am not... but through ALS we have something in common and as a result I am exposed to your faith. Although we are so different, your kindness and your optimism give me comfort. You and I are proof that, in this world, we are ALL a lot more alike than we are different. May you have as good a day as possible too! :)
 
Nicely said ,Thelma; and I second her thoughts & comments!
 
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