downhill

[zoohouse]

Tillie, hang in there. You are amazing and you have been there for him every step of the way. I hate to see any of the CALS and PALS going through this, it hits too close to home. But we are here for the long hall as well, to support each other. Consider your hand held, and your hair stroked, a friendly understanding arm around your shoulder, and prayer being said for you.

Love Paulette

 

[pearshoot]

affected its a difficult journey, more so for the caregiver...must ask why only 800 calories a day...I do 2000 a day to maintain weight...can he eat, on tube, or his choice.....for calories consider jevity 1.5, lots of calories, little sugar and good things, wishing you peace

 

[SMP51]

Linda and Tillie you are not alone, we are here emtionally and living this with you physically painfully close...your world is ours as well and you echo in our hearts.
YES, be selfish with his time left and your space with him... I know I will be!

Linda I am also saddest for our children and grands, they have been robbed of so very much, but the dignitty and strength thier dad has shown them these past years will live on in them thier entire lives.

Tillie I have lead in my stomach if I think of my future without him. I dont fear life alone but dread life without him

 

[affected]

thanks yet again everyone, I appreciate this support so much, my hand is being held but we are just doing this hour at a time our own way now.

@pearshoot - he won't take any more than this, and I'm not trying to push anything, just let him have what he wants as he wants so that he is comfortable now.

I'm hanging in, I feel calm still and that I know what I am doing as he guides me to what comfort he needs.

He has refused me to tell his kids yet what is happening, 2 wanted to come over this afternoon (with the usual text notice message that they are just leaving to come visit ...), but he had me message back, so I said we were just about to have a sleep. They didn't answer and they didn't show up so I guess they got the text ...

 

[minnesota]

Prayers for comfort and peace! Holding hands with you! What a beautiful picture I carry in my mind and heart of your constant courageous care---with class!

 

[affected]

I think of all he has been through, of the fears he has suffered, of the horror of what the ftd has done to him causing the paranoia, anger and poor decisions.

He looks more like the man I knew as he accepts the comfort of the meds and gentle care.

I don't want anyone here either, this is as private as it gets, and yet the support of you all holding my hand allows me to just stay calm and 'be'. I've been 'doing' so much, now I can just 'be' with the man who swept me off my feet only 4 years ago, who showed me friendship, laughter and love in a way I'd never known and never thought possible.

I'm so glad we jumped right in the deep end and took on so many things life offered us just 4 years ago, we felt that we didn't have a minute to waste, and we were right. I'm glad we didn't waste any minutes, I'm glad for him, and I'm so very glad he never had to go through this alone.

I watch him sleep, I walk in circles, I count the breaths when the apnoea starts and I remember our love, finally after the ftd I remember our love again.

 

[MaxEidswick]

>I watch him sleep, I walk in circles, I count the breaths when the apnoea starts and I remember our love, finally after the ftd I remember our love again

That is what counts, Tillie. Remembering the love.

 

[dalvin]

I've often thought that you CALS have the hardest and worst part of this ordeal. You take care of your pals, watch your pal slowly decline while at the same time you want to do something to stop the progression, then when it's over you have to pick up the pieces and try to make sense of things while us pals are free of it all and finally at peace. You guys are the bravest and nobelist, God bless you all

 

[MaxEidswick]

>You guys are the bravest and nobelis

well said Dalvin!

 

[affected]

Re: downhill run, getting ready to fly

Oh Dalvin

My husband lost his first wife to cancer only 8 years ago. His attitude to life inspired me.

With ftd he became another person altogether, that was the worst part.

Just a little while ago, for the first time in so long I don't know how long, he turned to me himself and said 'I love you'. He has said it in reply to me saying it, but not just simply told me because he wanted to tell me.

His breathing is changing, more laboured, involving so many parts of his body. I doubt he has many functioning breathing muscles left.

He is taking meds often enough, and still on low doses, but he is staying calm and comfortable so he is asking for more before he gets to any bad point.

 

[barneyswife]

Tillie I am so glad you received the "I Love You"! What a precious gift!
I am also so proud of you, we all are! Lead with your heart and God knows you have a great one!
Sending you many hugs, much love and all the positive thoughts I can muster.
We are all walking together beside you! Give him a hug from me.
Hugs
Linda

 

[MaxEidswick]

>We are all walking together beside you! Give him a hug from me

ditto that!

 

[affected]

I feel you all and welcome the hands holding me up.

Hugging him a lot, stroking the face and chest is a good relaxant for him.

Smurf drops (lovely blue in the bottle, not so lovely coating teeth) and oxynorm need to be given before distress begins for best effect.

Just napping in between checking, hugging, stroking, medicating, and loving.

 

[MaxEidswick]

>Hugging him a lot, stroking the face and chest is a good relaxant for him

 

[azgirl]

Been sending loving thoughts to you and your husband all day. Feel as if I know you through your posts and you strike me as an amazing strong loving woman. Hugs to you both.