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Plumeria84

Active member
Joined
Jul 22, 2011
Messages
42
Reason
CALS
Diagnosis
08/2009
Country
US
State
FL
City
Palm Coast
Ever find yourself wishing that you could for even just a moment make someone understand what it TRULY means to be a caregiver for someone with ALS ?
On the rare occasion that I end up telling someone I'm not super close to about our situation, you get the tilted face, sad lip "I'm sorry" but you know there was ZERO thought behind that response and they haven't A CLUE of what it really means. Well, I guess even those close to me can't possibly understand. They can try to imagine - but I'm sure they won't even come close.

Just wish I could touch their hand and let them for a moment feel all the anger, frustration, exhaustion(sp), love and heartbreak that goes into being a caregiver.

Just having a rough evening and wish that someone, anyone I knew in person could understand this for even a moment.
 
Yes, it is impossible to truly explain to someone what it really means to be a caregiver. It was not our chosen profession, but it is one we do because we must and would never quit.

I don't even try to explain to those not close--if I run in to them by accident and they ask, my standard answer is I'm fine, he's fine. that is all they want to hear anyway.

I am thankful that I know all the cals here understand and mostly do not judge. This forum is a blessing. love you!
 
Nobody can ever understand. This is the most horrible disease ever.
 
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I am not the primary caregiver for my sister, and I can only imagine what it is like for my brother-in-law and her kids that are close by. My beautiful sister has progressed so rapidly that we are all still trying to reconcile how much she can no longer do and how much everyone else must do for her - especially her husband. He is very upbeat but 24/7 is still 24/7 and watching this devastating disease take its toll on someone you love moves in a realm beyond words. Please know that you are supported and understood with endless compassion from other caregivers and ALS family members even if others don't really get it. Sorry for being so wordy but I am new to the forum and the disease, and I guess I need a place to talk about some of the things I am feeling and observing. All of you that post here share similar experience and sad as these stories are I need to understand where our family is headed. I visit my sister every other week(4.5 hours away) to be with her, support her, love her and not miss an opportunity to hold her, kiss her and do for her anything I can while I remember and grieve over the joyful times that seem to be lost to us. I hate this thing called ALS.
 
Do you mean for them to understand that your heart is breaking if not already broken, that from the moment you wake up your thoughts are not about yourself but for your loved one.

That during the night you pray for a quiet one but most times have to haul yourself out of bed to attend. That you paint on a smile even though you want to scream.

That you are overcome with guilt if you feel sorry for yourself or that when they say "look after yourself" you know you cant and you wont.

To know that tomorrow may not be a "better day" and that somedays are too long and all you wish for is bed. To know that whatever you do and whatever effort you make, you will not be given a big prize at the end and your only reward is a smile or thankyou, for which you are so happy and grateful and feel blessed.

That you havent lay in a hot bath making yourself feel glorious, you have just bathed to be clean - job done. To cry into your pillow and know that you may well cry again tomorrow.

Tilted heads - aarrrggghhhhhh - do not patronise me with your tilt.

Thinking of all caregivers tonight - no one knows unless they have been there.

Stay strong because you are and you, being you, dont have a choice. xxxx
 
If I have to hear one more person tell me how important it is for me to 'take care of myself,' I'm going to scream. What? Oh, okay, I'll put that on my list! Why didn't I think of that?

And, honestly, I appreciate and need all the prayers you've got, but the phrase "I'm praying for you" makes me want to slap the stew out of you.

And then I feel like a horrible person.

Paste happy smile, here. "We're fine, just fine! And your family?" Grin!
 
(See? Now I'm feeling like a total Sh!t.)
 
Like, like, like!

Jen
 
Even when you get a few minutes to yourself.....they are not yours...because your to worried about where he is...
is he alright...are they taking care of him...is he sad...
 
I totally understand. kinda had a meltdown on one of bruce's daughters today. About how tired I was, and i was sick of not doing anything but working and taking care of him, without help. i told her I needed for her to take her dad to HER house for a day or two on the weekend every once in awhile to give me a break. we will see. tired of hearing what fun his kids always have on wekends without any thought to me or him. My rant for the day, sorry
 
Y'all, you have to give yourselves a break! You are not superhuman. Call on those that do not want to be called on. My husband went to my SIL's a couple of times and each was an "experience," due to her negligence. But, he was OK. There is no one that will take as good of care of your love as you.

Those that don't caregive day to day for a pALS have no clue, nor do they want to.

Olga, when you find that magic touch that can transfer your feelings, you will be superhuman...
 
I am a secondary caregiver for my dad since I work I am only here part of the time. I have had to basically force my mom from the house to get her a break from dad. I am able to take care fo his needs for an afternoon. The only issue is the bathroom, dad is too proud to allow me to help him in the bathroom. Which I can understand it's a dignity thing...
Mom's family was in from a city about 5 hous away and my mom wasn't going to go to dinner with them. I basically had to lay out clothing and warm up the car in order to get her out of the house. She feels like she can't leave him, that others will be overwhelmed by his needs but she needs to know that if she burns out dad won't have her as an outlet. I keep trying to get her to take care of herself, somtimes its hard but I am a stuborn SOB LOL.
 
my wife knows
 
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Even when you get a few minutes to yourself.....they are not yours...because your to worried about where he is...
is he alright...are they taking care of him...is he sad...

Amen! The "is he sad" part is the worst, for me. Can't deal with it.
 
Comfort is taken from seeing my own thoughts and feelings portrayed here by so many people...
I am still new to this world of this disease, and what will happen to my hubby, and am so grateful for discovering this forum...
The people here have given me new hope and strength to move forwards into the fray...
God bless you all...xxx
 
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