Hubby very sick

[Icanmanz]

Hi Christy! I feel so bad for what you and Dave are going through. I know exactly what you are experiencing. The end is always painful.......what I mean is that it is so painful for you to watch your loved one perish. It is the most helpless feeling. May God bless you folks. It was so hard for me to tell my son that it was alright for him to go to Jesus. I really do not wish to keep on commenting. I just hate this disease, and hate to see our loved ones go through this. It is heartbreaking! What I can't understand is why when one of your loved ones show you their courage it rubs off on you. I am not afraid of departing anymore like I used to be. Why is that? Can anyone come up with an answer? God bless you all.

Irma

 

[whimsy_1971]

Dave asked for another increase in his morphine today. Still waiting on the hospice nurse. He is having more problems with his breathing, but Im concerned that the dose increase will cause him more problems. he isnt use to the last dose yet.

 

[gimpydad'slady]

Christy know that you and Dave are in my prayers.

 

[whimsy_1971]

little update

just a little update, were still hanging in there. Good days and then bad days the scopolamine injections has really helped Dave with his cough and saliva issue so he is resting more peaceful.

I've gone off the deap end a couple of times this month. I have to drag myself back out. I feel like im trying to sabatage myself and ruin what is left of my life. Im pushing friends away, making stupid choices while drinking (twice). I dont know what the hell Im thinking or doing. It's like I dont feel as if I deserve to have anything and dont care what people think of me anymore.

Im so scared to be alone and I know the time is coming. I have to get myself past this before I do loose everything.

 

[judylyne]

I know what you are going through. I was suctioning my husband when he died. I never felt such pain in my life. When my husband was going to the hospice house he said "please don't let them poison me". So I think they know they are near death and they get confused. I'm so sorry you have to go through this. Judy

 

[brooksea]

Christy,

You hang in there gal! Don't you let ALS get you too! Going through this with your husband is a very noble and compassionate thing. There are a lot who would run the other way! Think about how you have been helping your husband and how you will continue to help him. It is so very sad, indeed tragic... But you have done more than is expected of any one person.

You have a right to be upset! But you must know that Dave has so much love for you and wants you to carry on, so that you may touch others with your love and courage.

You and Dave are in my thoughts. I wish that he could find the peace he deserves. And I wish you could find that brave moment to spur you on past your sorrow.

 

[givenin]

Christy please hang in there, you have been fighting the fight don't give up now or after. It is not easy but it does get easier. You have been doing such an awsome job of caring and loveing your husband don't fall into the pit. Moraphine does the same to me I hate it and refuse to have it but it does take the pain off.
My friends were a incredible support for me they watched and waited and when I was about to loose all they were there and I am sure yours are to but you have to let them help you, a good 5 min cry on a shoulder takes some of the load off.

Thinking of you, take care
Cheryl

 

[CindyM]

Christy-you deserve support and a good life. Please tell youself this 10 - 20 times a day, until your mind believes it. I hate to think of you pushing those who care for you away. Don't think about what will happen when Dave loses his fight. Just think about how much he loves you today. Hugs, Cindy

 

[BethU]

Christy, DON'T beat yourself up. We all do what we have to do to cope. When you come out the other end of this, you will be yourself again, and will pull your life back together.

I'm praying for you both. Sometimes, that's all we can do ... take it one step at a time and pray.

God bless you and Dave.

 

[whimsy_1971]

Thank you guys, every single last one of ya.

 

[whimsy_1971]

swelling

We are having an issue with Dave being so swollen that his medication is not dispursing through his system right with the small ports they stick into his fatty tissue. He has been so uncomfortable now for over 2 hrs. I called hospice and they said they didnt know what to do and they would talk with the Dr first thing this morning. What the heck.

His fever is back more than ever and so is his cough, but Im miffed about this medication issue. They talked about putting a port in but said they didnt know if he could take it or not. Well they need to find a way. This is bull. I've about had it w/ hospice. So far they have showed me nothing as far as making my husband comfortable.

Thanks for letting me vent.

 

[nurburch]

pain control

Hi Christy,
I am so sorry Dave and yourself are having such a rough time. I know how
difficult it is to get the pain under control when there are changes, we have to adjust
as we go. I hope hospice gets the fentanyl patch for you. It comes in different dosages and works pretty well. I am not sure why they haven't suggested it to you before, but
sometimes it takes a different view. Couple other medications that are sublingual or
topical that may help him with comfort. I hope these few suggestions help.
I will be praying for you. Take care.

Sheryl wife scottie diagnosed 06

 

[brooksea]

Christy,

It really sounds as if you are not getting the treatment necessary to keep your husband comfortable. This goes completely against Hospice's purpose to begin with.

Are there any other Hospice companies in your area? It seems time after time, cALS have to demand something from Hospice that should be automatic.

I wish you luck in this situation and hope they can fix the medication problem!

 

[Flowerpot]

Christy

We are not at this stage yet but I send transatlantic hugs to you both. We have had major irritations with Mum's home so get where you are coming from.

very kind regards

Flowerpot

 

[whimsy_1971]

I wanted to thank who called me today. Thank you thank you thank you....... you couldnt have called at a better time.

They didnt try the patch yet, but we may have too. By the time hospice came over today they decided that Dave condition was not well enough to take him in to the hosptial to have a picc line put in. So we have moved the port again and are using his tube for the lorazapam. She also said that his left lung is full, and the right one is not as bad.

Hospice said to call in family again that they didnt think that he would make it very long. I told her that we had been here before and that I wasnt sure what to think. She said she thought this was it. Dave is peaceful right now, so that's all that matters.

He has pulled through this before he can do it again.

thank you to all of you that has been here with me through this. You do mean the world to me and everyone here.