All roads lead to the same place

A long-time friend of ours, S, came over to visit with H a few days ago. H knew S in college and is one of the true blue friends that have stuck with us. I wasn't around when H & S visited, so I called up S to get his perspective on their visit. He talked about H spacing out when they talked...almost going to sleep...and H's denial about how sick he really is.

I asked S to validate or refute my reality: that I see H slipping away and that H knows that he is slipping, that he is quite ill...more ill that he'll admit (at least to me), needs more care than I can provide, and that H is hiding his health issues from me. Oh, and that I'm at my limit of caregiving and have been for some time.

He validated my reality. And so has H's family and H's doctor and...and.... How many more have to before I will push the button.

I've tried to pick up the phone and to get H on a waiting list at a local nursing facility with some specialty in his type of health issues. I just can't pick it up and dial...yet. Bit by bit I get up the courage to do this and I'm almost there.

Several have said that it might be a relief to H as well as to me if he goes to a care facility. H must realize that he is dependent on me and that he is becoming more so each passing week. The tough bit is that we all have to deal with our denial & bargaining for this to happen.

And guilt.

Do the dichotomy, redux

So, I get all geared up and then the self-doubt sets in. The guilt. The, "oh, it's not so bad and I do love him still." Yet, just a few days ago, I'm getting up the courage to call to get him on a waiting list. And I told myself, "I can't take this anymore." Back and forth. Back and forth. Aaagh!

What do healthy partners do?

H has been sick for so long, I've forgotten what it's like to have a healthy partner. What do healthy couples do on the weekends? H gets up at noon, is up for awhile, goes back to bed, maybe eats dinner, is on the computer for a few hours and goes back to bed. His mind is slow and forgetful these days. Part of this is the medications, part of this is his illnesses.

Sometimes I can get him to go somewhere, but that is becoming less and less likely. He gets overwhelmed out in public, usually can't eat a meal at a restaurant, and doesn't have the attention span to sit through a movie or a play.

He sweats all night in bed and it smells like chemicals (although less than awhile ago)...no cuddling in bed for moi. Forget sex. His dick is 1/2 the size it used to be (really) and he often can't get it up, even with a prescription. Besides, his body has changed a lot and it weirds me out. He just doesn't look healthy anymore.

I still love him, tho'.

So, I've learned to entertain myself. And in some ways, I suppose that I like the quiet. In many ways, it's comforting and less stressful that being around him...it's "me time," which there is simply not enough of. Sometimes I wish that he would just stay asleep, but really I just want things to be different.

A friend came by to visit and offered to take H somewhere: shopping, see the Christmas lights, a walk...just get him out of the house. But he didn't want to go. H has often described to me how he feels safe at home and I think that this is becoming more pronounced.

Oh, and for years, I've just filled in the gaps for him; it's sorta like completing your partner's sentences, but you do it in your mind when they can't do something they used to. So, for example, if you say something and you'd expect him to respond a particular way and he doesn't respond that way or doesn't respond at all, you just fill in the blanks because your so used to how he responds. It's hard to explain, but very, very real and the mind is a trickster. As a result, it's easy to lose objectivity and you want them to be better so badly...and so you don't notice how sick they really are.

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 anymore...it 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.