Grumpy'sWife
Distinguished member
- Joined
- Aug 18, 2014
- Messages
- 153
- Reason
- Lost a loved one
- Diagnosis
- 07/2014
- Country
- US
- State
- Ohio
- City
- Southern
I am not even sure where to begin but just needed to talk to someone who might actually understand! Grumpy has been declining pretty steadily for the last few weeks. We started on a bowel care program through the VA because he needs an enema and bowel stimulation in order to go. It went well for the first month, then about 3 weeks ago I noticed his BM's were starting not just to be soft but more like soup. We cut back on the daily Miralax hoping that would be the answer. Around the same time he started to have acid reflux that was beyond terrible. The problem with that is that it comes up into his throat and he can't swallow to get it back down. It can go on for hours and so far none of the medication we have tried seems to be working. Finally on Tuesday his primary care doc came to the house and said she felt it was because his digestive system was slowing down and that we should probably cut his Jevity 1.5 to 3 cans a day and that she really wants us to consider hospice. He had been on 5 cans of Jevity since December and gained back 21 pounds. But for that last 6 weeks or so it was only 3 to 4 cans a day because he would say he felt full even if no residual was present. He has already lost 4 pounds. She is afraid that he will aspirate on the acid reflux so that was her reason for going to 3 cans. We make sure he is sitting up and I never, never tube feed him in bed.
Now we are dealing with diarrhea almost daily even with bowel care, acid reflux that scares both of us and a body that is completely failing him. He can move his head from left to right, one finger up and down a 1/4 of an inch and press down with his right hand a little.
I have always thought that I could handle whatever this damn thing threw at me but for the past week I don't think I have slept more than a few hours, I find myself taking an hour shower each morning and night so I can cry and see my husband fading away right before my very eyes! He is so emotional and so quickly losing his wonderful sense of humor.
Last night after I got in him all ready for bed I was rubbing his arm and he told me of all the things he missed it was laying beside me at night. That is too painful for him now and has been for months, we both cried a little and it hit me that I may never lie beside him again.
How can 3 letters put together in an order change your life so much? I would give anything to turn back the clock to July 29, 2014 at 4:39 pm and never here those 3 letters because frankly in the words of Grumpy, ALS SUCKS!
Thank you for being here, just being able to pour this out of my heart makes the burden just a little lighter, love to you all ~Kaye
Now we are dealing with diarrhea almost daily even with bowel care, acid reflux that scares both of us and a body that is completely failing him. He can move his head from left to right, one finger up and down a 1/4 of an inch and press down with his right hand a little.
I have always thought that I could handle whatever this damn thing threw at me but for the past week I don't think I have slept more than a few hours, I find myself taking an hour shower each morning and night so I can cry and see my husband fading away right before my very eyes! He is so emotional and so quickly losing his wonderful sense of humor.
Last night after I got in him all ready for bed I was rubbing his arm and he told me of all the things he missed it was laying beside me at night. That is too painful for him now and has been for months, we both cried a little and it hit me that I may never lie beside him again.
How can 3 letters put together in an order change your life so much? I would give anything to turn back the clock to July 29, 2014 at 4:39 pm and never here those 3 letters because frankly in the words of Grumpy, ALS SUCKS!
Thank you for being here, just being able to pour this out of my heart makes the burden just a little lighter, love to you all ~Kaye