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Hey kids...Update on my Mom and her ALS progression

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bicentennial_baby Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:17 PM
Original message
Hey kids...Update on my Mom and her ALS progression
I spent some time with her today. She's not doing well. Sigh. It appears that it's getting near the time for a feeding tube. She's highly resistant, but it's that or...

She's going to her ALS specialist on Friday. We shall see where we go from here. I have a feeling that between her and my Dad (going on month 9 in the hospital, not sure if he'll be able to come home, as there's nobody to care for him when my Brother's at work...that's a whole other matter), the next year will be very, very rough. Keep them and me and my little brother in your thoughts, if you can.

x(


Thanks. :pals:
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MonkeyFunk Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:18 PM
Response to Original message
1. Ugh
i'm very sorry.
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Genevieve Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:18 PM
Response to Original message
2. I'm sorry.
:hug:
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Zuiderelle Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:20 PM
Response to Original message
3. I'm so sorry.
Keeping you and your family in my thoughts. :hug:
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Texasgal Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:23 PM
Response to Original message
4. You are in my thoughts...
I also need to say that you are an incredible person... helping your Mother and Father all while trying to educate yourself and live your own life must put incredible strain on you...

Your love and commitment to your folks shows your compassion.

As an RN I have seen many families fall apart during times of declining health and needs... You are amazing.
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SeattleGirl Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:24 PM
Response to Original message
5. Hard stuff to go through, babykins.
I'll be keeping all of you in my thoughts. :hug:

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PassingFair Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:41 PM
Response to Original message
6. Is her esophagus not working?
How horrible.

What my father most wanted from me was laughter.
He made it so easy to kid, right until the end.

At my brother's wedding, he was in a wheelchair, almost totally
paralyzed, and I saw him trying to tilt his body around, so I asked him if he
needed anything and he said "no".

"Then WHAT are you doing?" I asked him.

"Mingling" he said.

Once I called him and without thinking asked: "So, what have you been up to?"

UNCOMFORTABLE SILENCE; then

"I was FINE until YOU called!"
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bicentennial_baby Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:44 PM
Response to Reply #6
7. She has bulbar onset, not the other kind...
She has the fast kind. Diagnosed July 2007. Starts with losing the voice and just gets worse and worse. She can walk and even drive some days. Today she started sobbing in my arms b/c she can't eat without choking/aspirating her pureed food. I'm kinda wrecked.

:hug:

I wish she could talk, I can't remember her voice, except in my dreams.

:(
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PassingFair Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:49 PM
Response to Reply #7
10. Horrible.
My dad had the opposite.

Started in his arms and legs.

He was still able to talk when he died, and
he was grateful for it.

I know you have a LOT on your plate, but
try to spend as much time as you can with
her. My kids were toddlers when my dad died
and I regret that I didn't spend more one-on
one time with him.

:hug:
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bicentennial_baby Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:54 PM
Response to Reply #10
12. I'm trying...
It's hard, I'm 100 miles away and school starts in 5 weeks. My brother and my Ex are there, taking care of her. I'm trying to get there once a week, but I'll admit that I'm a coward, and seeing her like this just devastates me. I understand that it's very possible that she will be dead in 6-12 months. Bulbar onset has a prognosis of 18 months from diagnosis. My brother has it so much worse, and he's so young (26), he lives it every fucking day.

It's hell, frankly. I'm trying to not crack up. Trying.

:hug:
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PassingFair Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 09:20 PM
Response to Reply #12
19. Primal Scream.
At least once a week...

I would think of what was happening to him,
and it would just burst out.

Nothing will make it "OK".

Just know she loves you and do what you can.
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crim son Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:48 PM
Response to Original message
8. I will keep your family in my thoughts.
Meanwhile, take care of yourself. :hug:
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Pierre.Suave Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:49 PM
Response to Original message
9. Oh my
Hugs for you and your entire family...

:hug:s
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Sugar Smack Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:52 PM
Response to Original message
11. Hey.
Y'all are in my thoughts. I wish I could give you a hug. It's an awful situation.:pals:
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bicentennial_baby Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:55 PM
Response to Reply #11
13. Hell on Earth, and So unfair.
I've had a sick Father my whole life. It was NEVER supposed to be like this. Never. x(
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Sugar Smack Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 09:04 PM
Response to Reply #13
16. I know. It completely destroys
your idea of how things should be. I also know because I'm in limbo about how to take care of my own father: I don't even really know who to ask for help.

I'm so sorry, bijou. It's not fair. :hug:
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Redstone Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 08:59 PM
Response to Original message
14. Fuck, BB, just God damn it. There is not a Godalmighty thing in this world that I'm afraid of,
except for ALS. My heart goes out to you and your brother and your parents.

Be strong, and when you can't (nobody can do that forever), come down and take a break at our place. With Mr S, of course, and your brother too if you want.

We're always at home for our friends.

Redstone
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bicentennial_baby Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 09:01 PM
Response to Reply #14
15. Thanks friend...
I may take you up on that offer. I'm trying to keep my head above water. It gets harder every day, lately.

Thanks again. Best to you and the Mrs. :hug:
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Redstone Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 09:13 PM
Response to Reply #15
17. You know why I identify with your father. And I had a LITTLE BIT of a taste of what
Edited on Mon Aug-04-08 09:13 PM by Redstone
you're going through a few days ago )http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=105&topic_id=7983185&mesg_id=7983185), and it got me a bit rattled.

That was NOTHING compared to what you're dealing with. And at your relatively young age. My heart does indeed go out to you.

It's hard to remember people's advice, when you're in that kind of situation, and they say "make sure to take some time to take care of yourself." But it's good advice nonetheless.

I'm going to go out in the back yard right now to offer tobacco and salt to the Four Winds for you parents, for you, and for your brother.

Redstone
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bicentennial_baby Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 09:15 PM
Response to Reply #17
18. Thank you so much
:hug:

I'm trying to take care...I may need some psychiatric intervention soon. Gotta do what I gotta do. Again, thank you so much. :hug:
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Redstone Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 09:20 PM
Response to Reply #18
20. I've made my offerings, which I don't do for just any old thing. Hope it helps.
Redstone
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bicentennial_baby Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 10:50 PM
Response to Original message
21. Thanks to all who responded...
It's weird, AlS seems to scare people off. If I'd said she had cancer, I'd get a ton of responses. I guess ALS is one of those things that nobody knows how to talk about. That's ok.

:grouphug:
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otherlander Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 11:00 PM
Response to Original message
22. I'm so sorry.
:(

:hug:
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darkstar Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Aug-04-08 11:04 PM
Response to Original message
23. Hey...so sorry...hang tough...
Strengthening hugs all around: your mom, you, your man

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

:hi:
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Lil Missy Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-05-08 12:08 AM
Response to Original message
24. I'm so sorry your mom has to go through this.
And good vibes to you too, as I am sure it i very difficult and stressful for you to go through too.

:hug:
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1gobluedem Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-05-08 08:11 AM
Response to Original message
25. So, so sorry
There are no words to adequately describe my sympathy for the pain and helplessness you and your family are experiencing. Just know how much people care and are thinking of you daily.

:hug:
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AwakeAtLast Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-05-08 09:43 AM
Response to Original message
26. That's a lot to deal with
So sorry you have to go through this. :hug:
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zanne Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-05-08 10:25 AM
Response to Original message
27. You're all going through so much.
I hope you're able to plan some free time for yourself so you don't feel overwhelmed. You're in my thoughts.
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ThatsMyBarack Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-05-08 10:49 AM
Response to Original message
28. ...
:cry: :hug: :pals:
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Debi Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-05-08 11:01 AM
Response to Original message
29. Thinking of you and your family
:pals:

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applegrove Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Aug-05-08 11:52 AM
Response to Original message
30. Vibes to your family.
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