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YogiBill

New member
Joined
Feb 3, 2010
Messages
1
Reason
CALS
Diagnosis
11/2008
Country
US
State
OR
City
Portland
My partner was diagnosed in Nov 2008, and he has declined so rapidly. I read on this forum that we are not alone in our experience, and this disease continues to shock me. As absolutely exhausting as this is for a CALS, I think the hardest and saddest part is watching someone you love deteriorate like this. How do other CALS cope? I have to really stay strong just so I can carve out time in the week to take care of myself. Then I feel guilty for asking, though I'm not sure why because no one seems to be accusing me of being lazy but me! The real challenge for me is that when I am completely exhausted after several days of taking care of my partner, I usually vent...and he's the one I vent to because he is right there and he's been my closest friend. Not really good, but it's so difficult because I am losing the best life partner one could have. I have to turn elsewhere for this venting, but it's so difficult to let go of him. Plus, even my spirituality has been tested. This seems like such a cruel disease - pretty hard not wondering "why?"
 

Pidge

Active member
Joined
Sep 12, 2009
Messages
99
Reason
Loved one DX
Diagnosis
08/2009
Country
US
State
OH
City
Alliance
Yogi you have come to the right place to vent. So sorry for what you are going thru. My first thoughts when my son was diagnosed why him why us and immediatly my next thought it is not just us other people are going thru the same thing or worse this is a cruel disease & it takes alot of physical strength & emotional strength. I don't know what your faith is but I have a very strong faith in GOD & my strength comes from standing on the ROCK somtimes I am on my tippy toes w/ only my nose sticking out but I have a big nose. Like to add more but my time is short this morn. Hang in there. God Bless Pidge
 

cris

Distinguished member
Joined
Apr 7, 2008
Messages
214
Diagnosis
12/2006
Country
US
State
illinois
City
Tiskilwa
Yogi..Venting is good, and you have found us! We're the best listeners and venters around!(hehehe) And we really do 'get it'. You're right, this is rough and wearing...but we seem to find the strength when we least expect it or look for it. Welcome, and good luck......
 

bythesea

Active member
Joined
Aug 6, 2009
Messages
80
Reason
PALS
Diagnosis
02/2010
Country
US
State
NJ
City
Bergen County
Yogibill,
I am rarely a consoler on the forum. However there are many "naturals" here way better at that

I'm way too depressed over my own decline which seems apparent even from day to day.

I do believe it's much harder to watch and do not look farther than today to anticipate what my wife will have to sacrifice. She reminded me today "through sickness and health" but I told her this isn't what you signed on for.
 

JOSIEM02

Distinguished member
Joined
Aug 7, 2009
Messages
133
Reason
CALS
Country
US
State
PA
City
waynesboro
Yogibill, hello and welcome. My husband, sister in law and I are caregivers to my mother in law. I understand how hard it is to watch the ones we love decline. This is the second time I've been through this first time I helped my mother when my father had cancer and lost his battle with it in 2000. The only thing I can tell you is turn to your faith. I find time in the shower to cry, scream, rant, pray, plead, beg and then I feel better, for awhile. I cry alot but really try not to cry infront of my mother in law. Although when I do she smiles and pats me on the back. Can you believe that, she has ALS and she comforts me at times. Strong woman. Just talk to anyone who will listen. I find it's not that I always want answers, I am just looking to vent. So next time I am having one of my moments I will pray for you and your friend also.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Welcome Yogi. Yes it is hard to watch your loved one lose what we take for granted. But, feel free to come to the forum and vent anytime. We understand.
 

mare

Senior member
Joined
Jun 5, 2008
Messages
761
Reason
Lost a loved one
Country
US
State
PA
City
Lafayette Hill
Yogi-
I'm sorry for your partner's diagnosed. & rapid decline. And, I'm sorry for what both are you are going thru right now.

As the wife (and CALS) of a PALS, I know that feeling of watching your partner deteriorate and not being able to stop it. And it can make you feel powerless & helpless.

How to cope? I think you are already doing some of that. By carving out your time (and DO NOT feel guilty about that! it is a necessity) you get the break you need to come back & be a better caregiver. You know you need to vent- but you feel maybe not to your PALS. Good start in coming here; you can say anything- people really do get it.

But, how about support groups? Are there any in your area thru the ALS association or the MDA association? If your partner goes to an ALS clinic, is there a nurse counselor you can talk with? Do you get any help from others? Family, friends?

Finally, I think God is OK with you questioning Him, asking why; even being really mad at Him. Just keep going back to Him!

Josie-
I think it is OK to sometimes cry in front of our loved ones. It shows our feelings of love & saddness. It can be a non-verbal way of communicating; just as her pat on the back perhaps was her communicating to you "I know & I love you too!"

Bythesea-
Hi, was wondering how you've been. I'm sorry to read about your decline.
Again, as a wife, let me say: don't anticipate what your wife will have to sacrifice. That is only sacrificing what she (and YOU) can have today!

And, please believe her when she says "in sickness & in health". It is all inclusive!

I didn't say "well, OK if you have a heart attack, or a stroke. But, if you get cancer- I'm outta' here. Or, "I'll stay if you have depression, but I don't know if you get Alzheimer's, like your Dad." There is no picking & choosing. Yes, there maybe difficult times ahead.
But, you didn't promise her a rose-garden. (or, maybe you did!lol)

I know when I said those words, there were no conditions. (no health pre-nup, so to speak) I said them with blind faith, and I meant them.

I think your wife meant them too!
Don't waste your days & hers!
 

hopingforcure

Very helpful member
Joined
Feb 14, 2008
Messages
1,420
Diagnosis
09/2007
Country
US
State
USA
City
Any
Mare,
This post is part of the reason we like you so much. You said a lot of super meaningful things. You are the best. Thanks
 

bythesea

Active member
Joined
Aug 6, 2009
Messages
80
Reason
PALS
Diagnosis
02/2010
Country
US
State
NJ
City
Bergen County
Mare,

Thanks for the many kind words. That old song comes to mind "As the days dwindle down, September..."

I'm more than blessed to have her.
 

K-Town

Active member
Joined
Jun 8, 2008
Messages
32
Reason
CALS
Diagnosis
06/2008
Country
CA
State
ontario
City
K-Town
Mare said it right.

Yogi, im in your boat as well. Remember that you need to vent! he doesn't NEED to hear it. I pay someone to hear me vent. Shes a therapist and a life coach. Find someone for the vent and fears and frustration. it will keep you on track..totally. Oh you WILL have bad days, but it will be easier to deal, and you will cope better. dont wait. I'm glad I didn't.
 
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