Friday, December 02, 2005

When "How do you know when?" is now

So, I talked with H's Dr today about H forgetting so much. He didn't realize that this was happening, which is why I called him...he doesn't have the context that I do.

He said that H's body can get better (his viral load is down) while his mental state deteriorates. Sigh. He asked about having someone at home during the day to keep an eye on H...we don't have that. I told him if that is necessary, then H has to go somewhere because I can no longer deal.

I asked him if there were some markers: how do you know when to say, "It's time." "It's entirely up to you," he said, "unless there's a safety issue for H or you" (there isn't). If anything, H is getting more docile as he fades away.

Net: the line is where I draw it, plain & simple. And, at this point, we've crossed over that line. I can't deal is costing me too much. Besides, I do think that H really does need more care than I can provide for him even tho' he tries his best to hide his increasing dependence.

Also, I am so whacked out by all of this that I can't be the supportive, loving partner that I know that I can be. I'm just too stressed, distressed, and angry. My hope is that after H is settled in a new place that I will be able to be there for him as I would like to in his last months or however long. I want to be there for him, but the current situation makes that very, very difficult.

Dr. is fine with writing the order so that H can be admitted. I told him that I would keep him posted, but that I didn't want to do anything before the holidays.

So, now I am gearing myself up for the call to the nursing home/hospice to get H on a waiting list. It's so hard to be thinking about doing this, but I knew that it was coming and, realistically, due to either my kindness or fear (both, really), I haven't wanted to do it. I think also that I have been in denial about the necessity for some time now and I've bargained, "Maybe he'll get better." If the Dr is willing to write the order to admit H to a nursing facility/hospice for the second time in 3 months, H is not going to get any better.

I feel guilty and ashamed that I'm where I am in all of this...that I've had enough after 9 years of his illnesses. H's family tells me that I'm "a saint" and that they will support "whatever I decide" and that I am considered the "spouse." I don't feel like a saint right now. I feel like I'm betraying him, sending him to the "end of the line." And I am sending him to the end of the line...well, actually he is likely there already and it's just a question of where he spends his last days. My shrink tells me that all of this is normal...but it doesn't make it hurt any less. This is the most gut-wrenching thing I have ever had to do in my life.

Someone whose husband had HIV dementia and was in decline told me, "Run away while you still can." I didn't understand at the time. Why would I do that? But to suffer through the "long goodbye" for many years now, where a parts of H fade away bit by bit, where not just his body is affected, but his mind is wasting too - his personality, memories, reasoning...all of it is going - and then to finally get so stressed out that I can't have him at home anymore. Ouch.

I must do it 'tho. It is time, my dear.

No comments: