the pain for me goes on

Here's where we are at....

David recovered from C-diff, thank God. He also fought off a shingles outbreak. I got him on an antiviral immediately and I think we headed off a big outbreak. David's pain is also being managed pretty effectively for the most part. I am very, very grateful for that. We also changed the way we feed him with the stomach tube...we went to gravity flow bags instead of bolus feeding with a syringe. That made a huge difference. I am fighting against being very irritated with hospice that they didn't tell me about how bolus feeding can cause diarrhea and that they didn't suggest gravity bags sooner. It would have saved me so much grief. The way I found out was via an emotional phone call from me, saying if David is over the c-diff, why is everything shooting out of him right after I feed him???? That's when they finally suggested the bags. Also, I had a nurse out to check David because I was sure he was dehydrated, and she pinched his skin and looked at his eyes and said he's not dehydrated. But he was barely peeing and it was so dark that I thought something terrible was wrong. Finally the bath aide said he is definitely dehydrated and she talked to another nurse. So they had me increase his water from 60 cc four times a day to 250 cc every two hours. Can you believe the increase???? He must have been terribly dehydrated!!! Why did they ever have him on only 60 cc 4x a day? I should have questioned that a long time ago. So mad at myself.....anyway, the increase of water has also made a big difference. He is much more connected...by that, I mean he tracks us with his eyes, looks at us when we talk, and seems totally aware of what is going on. Before the increase of water, his eyes were blank and he just stared up at the ceiling. He seemed oblivious to what was going on. Being dehydrated affects everything. He had really weird breath...sweet and cloying. Turns out he probably has some acidosis going on. But the hydration also made that better too.

So David's vitals are great...really strong. He's over the c-diff and shingles. He's hydrated. But he can't move at all, except his right hand, and he can barely do that. His butt looks like raw hamburger. He can't eat. He can't talk. He can't even nod or shake his head any more. He can't sit in a wheelchair. He breathes weird...tiny shallow breaths, then six long, deep breaths. That may be from the acidosis...Idk and neither does hospice. So what kind of a life does David have? Would he want to go on like this? How long will he go on like this? He seems totally aware of what is going on. He noticed when his dad had tears in his eyes and he stared intently at Larry--I wondered what he was thinking?

For me, it's like I am grieving his death every day, over and over again. I can't heal, I can't recover, I can't go on in life. I'm always crying, always so sad and so miserable. He looks at that picture of our whole family that's on his hospital table next to his bed every day, and it makes me cry every day. I think he 's thinking about the life that he had and how it's over for him. Maybe I torture myself, thinking about what I think he's thinking. I'm just so incredibly sad and grief stricken that he is 29 and he's not going to get the rest of his life. He was diagnosed at 25 and I was shocked back then, thinking how horrible it was to be 25 and to think that you were not going to get to live. I remember talking to another cancer warrior who is David's age, and he said that we all think that we are entitled to a long life, but it doesn't always work out that way. I guess I did feel that David was entitled to a longer life. He had so many plans, dreams, ideas for his life....just like everyone else. I guess I should be grateful that he had 29 years. After he was diagnosed, he courageously fought to make the best of every day of his life. I am so proud of him.

I'm writing this in his room while he takes his morning nap. Later today, some friends from a few years ago (all pretty girls) are coming to spend some time with him. They live an hour away, but they have been faithful to come up every week. I think David really enjoys their visits. They laugh and chatter and show him pictures and tell him all the latest girl gossip. We tell him to fake like he's sleeping if he gets tired of their chatter lol. But I think he likes having them chat too.

How do you caretakers continue on without having emotional breakdowns all the time? I have to admit that it has gotten a little...easier? Not really the right word...I guess I've gotten used to some terrible things and that's helped. But how do you deal with the intense grief on a long term (several months) basis?

Love and blessings and peace,
Cindy in Salem, OR