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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
 
Kaye,

I am so very sorry you are going through this. I really don't know what to say other than we are all in this same boat together and all eventually have to face the same outcome so just know that you are not alone and that all of us will be thinking about you and offering prayers and support. I can only tell you what I hope my wife and I will be able to do when we get to the point that you are now and that is to try and share all the beautiful memories we had together in our 30 years of marriage. Springtime is wonderful so open a window and let him hear the birds singing and if you can get him outside and let him feel the sun and warm breeze against his skin, maybe the smell of fresh cut grass. All of these sensations can take him back to certain times in his life and maybe even his childhood before those "3 letters" came into his life.

For me it's no longer about the future but about the present and wonderful memories of my past.

Vince
 
Kaye, I am crying for you this morning, and how difficult life has become. Know there comes a point that you want your beloved not to be suffering so- even though you are never really ready to let him go. ALS does suck!
 
You're in my thoughts Kaye...it's all so difficult!
 
Kaye my heart goes out to you both. Each day is a gift, in a strange kind of way, we are in the fortunate position to know that.
I have to say of all the things your beloved misses, it's a testament to your love for each other that it is something we all see as simply...what we do.
I'm so sorry for what you are going through, I hope you find comfort and support from your friends here.
God bless, Janelle x
 
You're in our thoughts Kaye. looks like i'm sliding down the same path. :-(
 
My heart is heavy with sadness reading your post. Know we all care about you and are here for you. Hugs to you and grumpy. Steph
 
I am so sorry that things are tough. Please consider trying hospice it is not just for the final days and maybe they can help both of you. Hugs and love to you and to Grumpy. You are an amazing couple
 
Kaye, I'm in tears for you. I don't know what to write, as fear of this future freezes me, but I want to hold you and offer as much love and support as possible. Please call Hospice. It's my understanding that they will help you make him comfortable.

The shower...who knew that it would become our own personal wailing wall?
 
Kaye.......This is all very hard to hear. You are one of the nicest people on this forum, and we all hurt for you and Grumpy. I can't even imagine how difficult this must be.
The harsh reality of this disease is truly unbearable from start to finish.
 
Kaye, I was particularly touched by your husband saying what he missed most was your lying next to him in bed. I'm sorry. So, so sorry for you both. You wrote that you rubbed his arm. Your physical touch must be so reassuring and soothing for him. As he declines, cherish the precious days and hopefully months you have, to love him, to hear his voice, to assure him of your love, to be close, to touch. Cry when you need to. The memories of your love for him at this time, and his love for you, expressed in different ways over the course of this final chapter, will be a treasure for you. You will be comforted by knowing you gave him your best. We all ache for you. I carry your pain in my heart and prayers. I hope you and he will find relief from the bowel problems. Please keep us all posted on how things develop. We're here for you as friends.
- Charlene
- Charlene
 
I couldn't get through reading all of your responses without crying. Although none of us wants to be here, we are truly blessed to have each other to lean on when we need that extra support.
@Nikki and Nuts We did meet with hospice this afternoon and will start services on Monday. They were extremely informative and very reassuring. Thank you for that suggestion because I probably wouldn't have called otherwise. They were here an hour after I called.
@Max I hate to hear that and hope Sandy knows how much we care about you both.
You are all so special and from the bottom of my heart, thank you. I sometimes feel like most of our family still thinks he will get better and they just don't listen. Here I feel like everyone understands.
Love and hugs to you all
~Kaye
 
Hi Kaye,

I just saw your post and I am hurting for you and with you my friend. this is such a hard and terrible road to be on, and you are handling it with grace and dignity. glad you called hospice, that is the best thing for you both I think.

hugs to you andto grumpy
 
Kaye,
Many blessings and extra doses of comfort to you, hopefully hospice will give you some much needed additional support to get you through what lies ahead, <<hugs>>
Grace
 
Hi Kaye, so sorry to hear how quickly things are progressing with Grumpy, I had a tearful afternoon yesterday just thinking about losing my BJ little by little, there is so little we can do apart from being here for them and loving them to bits while we can. Thinking of you both and sending hugs.
Love Gem
 
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