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affected

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Joined
Apr 26, 2013
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16,096
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
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lala land
My PALS is not well at all.

He is now accepting rivotril drops to help keep him calm, and is asking for oxynorm and only taking in about 800 calories a day.

So sad, but I almost feel more and more calm. I'm so sorry to any PALS here or new CALS in early stages but I have to vent enough to say this is fricking cruel and hideous. This amazing man has been eaten away nearly to nothing in all ways in front of my very eyes. I'm so glad he is finally taking meds to help him.
 
Tillie I am so very sorry. I am glad he is taking the meds but so sorry for the suffering of you both. I am praying for ypu both
 
I am so sorry to hear this Tillie. I am at work right now at our local hospital on the switchboard. I get off at 6 am and then am coming back at noon to work for a co-worker who's elderly father is ill. It is quiet so I will say a few silent prayers for you and your Cals. Wish I could be there to give you a great big hug. Kim
 
>So sad, but I almost feel more and more calm

Morning, Tillie --

I am so sorry you are both going thru this ... but glad he is accepting your help. I recently reread Mike's posts as he went thru this time. There is no easy way.

Our thoughts and our hearts are with you.

Max
 
I'm going to read Mike's posts again before I try to sleep tonight.

I just pray the calming drops (clonazepam) will help him to let go of his fears, let me help him, and give him some peace. He hasn't had peace in so very long, I want this to end with him finding some peace here with me first.

I am happy if the peace is induced by medications, so long as he can find some.
 
Tillie my heart is breaking for you! ALS is so "CRUEL"
Amazing how we are all living in the moment now, used to live in the remember when?
I am wishing you all of the positive I can muster, know I am thinking of you.
Peace my friends.
Hugs
Linda
 
thank you Linda, and I mean really!

I sent my kids a text tonite telling them he isn't doing well, and no one replied, you would think it's like Easter or something and people are off having fun, sheesh!

I haven't actually told his kids yet, a couple may come tomorrow. I'm waiting to see if they do actually show up, then they can see him and I will talk to them. If they don't show, then I will text them tomorrow night or something I guess. Or I will ask him if he wants them to be told anything.

To be honest, I would just as happily be alone with him now. We can both sleep when we can, I can do what I feel around how he is feeling. If people aren't there to help truly along the way, the last thing I need is them hovering over either of us at the end bits.

Amazing how many weird things keep going through my head ...
 
Tillie all of those weird things are going through my head also!
I really do not know what we are supposed to do! I do not want the hovering either! I just want peace at the end for my Barney and those that sincerely love him to be here!
Sending much love Tillie
Hugs
Linda
 
Linda, I think what we are supposed to do now is to follow our own hearts.

We have cared for our husbands through all of this disease, and shared all of the very worst moments, and also as many good times as we could make together.

The end of life is to me, truly for the both of us. Til death do us part ... well death is raking it's claws at the door now, I just want some peace, both for him and for me, but mostly for him. If he can pass peacefully the way I've known from some amazing CALS (eg Mike aka atsugi, or Steve aka Here3Her) then I know I can move onto whatever is next for me knowing that I gave him at least that.
 
Tillie and Linda,
Your words have brought tears of compassion to my eyes, my prayers are with you.
Know that your words of wisdom and knowledge have helped other pals as well
 
Tillie, definitely soul sisters.
Our family doctor asked how he could help me and I answered with, "Strangely I am not worried about me, I am overwhelmed with how sadly our children and grandchildren are being ripped off!"
The need for peace for our PALS is number one and then we will be able to do whatever it is we are supposed to do! Personally I do not care about me at this point!
Hugs
Linda
 
Tillie - thinking of u and your husband and wishing u strength.

Trina
 
Oh Tillie and Linda I so understand what y'all are saying. Peace and acceptance to both of you wonderful and caring ladies. My heart aches for both of you. Try to remember this saying "don't cry because I'm gone - smile because I was here". Much love to both of you as you approach the end of this journey.

Debbie
 
thank you all for the words of comfort and support.

For the first time he asked for meds including panadol for headache through the night. All this battle of refusing meds, I'm just so relieved to give him something to help.

I know that I will bounce back, I've lived alone, and happily so, for a fair part of my adult life, so I know I can do that. I don't think much really past this disease, my focus is on my PALS all the rest will fall into place or fall over later, so I'll deal with that then.

Dalvin, your words particularly meant a lot to me as I do become concerned sometimes at how anything I write would read to the PALS here. I have the utmost respect for every one of you and the battle you are engaged in. thank you

sisters in pain, keep holding my hand please, I appreciate that support

love you all
 
Tillie, Much love and compassion for both you and Linda. Your strength and generosity overwhelm me. Yes, as a newbie some posts are difficult to read because I know we're headed there, but because of you and others here I will never feel alone and never feel as lost as I know I'd have otherwise found myself. Vent, and know that there are probably many more here like me who still feel constrained when we post, but who also wish we could wrap you in comfort and love.
 
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