Sep 17, 2012 - 3:52 am
I cry so much. My heart is so broken all the time. All these years (3 1/2 of them) I fought so hard and I amazed everyone I knew with my strength, with my fight fight fight, believe we could win attitude. Now I'm just so weak that I can't talk to anyone without crying. I go in David's room every two hours and change his position and when I come out, I break down and cry. Every time. He's so helpless, so weak. But he still has clarity in his eyes. He recognizes us and his eyes follow us around the room. He never talks, never nods, never acknowledges what we say. But he did have a look of interest in his eyes when we told him that his sister got her first iPhone. How he loved his iPhone.....
I thought that things might get better, or at least stabilize, when David tested negative for c-diff. But the diarrhea didn't stop. The wounds from the diarrhea continued to get worse. I called hospice in desperation...why was David's food shooting back out of him? They thought maybe he has "dumping syndrome." I was so upset that they hadn't told me that tube fed people sometimes cannot tolerate tube feeding unless it is done really, really slowly, not with bolus feedings. So we switched to gravity bags. That allowed the food to trickle in super slowly. But the diarrhea still didn't stop. In the middle of the night, when I couldn't sleep, I remembered that when we were in the hospital, the palliative care doctor had told me that a feeding tube might not solve the issue we have with David not swallowing. She said a feeding tube is not a magical fix. She said that some people just do not tolerate tube feeding. So the next morning I called her and we had a long talk. She told me that when the end draws near, people stop eating. Their metabolism changes and they start burning muscle instead of what they are eating. That's why hospice always measures "wasting" to see if that metabolic shift has begun. The palliative care dr said that there's no way to stop that change, and it won't matter how many calories I pump into David. In fact, I am making it way harder on him. If he could talk or communicate or if he had any control, he would just stop eating. But since he's totally immobile, totally helpless, and he can't talk or even shake or nod his head, I have been pumping food in his stomach, making him bloated and uncomfortable and causing that diarrhea. And she explained that when you go without food, after a few days, the body has a natural response---a sense of euphoria. It's the body's way of making dying easier. But I am circumventing this for David by feeding him.
This has caused such an incredible conflict in my heart. I have always been absolutely adamant that I would not stand by and watch David starve to death. But if forcing food on him makes his death harder, am I doing the right thing? Is it right to force food on him and try to make him live a few weeks longer in such a miserable, terrible state? I don't know.....for now, we are holding food and only giving him water and his medicines. Trying to let his gut recover and settle down. After about five days, we are going to try to give him tiny increments of food and see if he can tolerate formula given gradually with the gravity feeding bags.
David's status is worsening daily. His cousin who is a caregiver said that he has drastically gone downhill in just the last week. She is usually so optimistic that when she says that, I sit up and take notice. I think that it has contributed to my constant tears. It's hard for me to keep time frames straight. A day seems so long, and it seems like months ago that we were in the hospital but it's only been a few weeks.
I want to thank all of you who posted on my last thread. Thank you so much for making me feel like I am not alone. I am so grateful for your understanding and your support. Your notes mean so much to me.
Love and blessings, always,