Placement, finally

Gentle readers, again another year has passed. Much has happened.

Last August, H was driving to an appointment at a nearby Dr's office that he had been to many times. He got confused, took the wrong route, left the road, and hit a utility pole at between 40 and 50 mph (we think). Thankfully, no one else was hurt, but H was critically injured. He was in a Miata and the pole hit the car just in front of the driver's door…he was lucky to live (maybe).

All of his limbs were broken, his lower back was broken, multiple facial and skull fractures, and a traumatic head injury to his forehead. He was unconscious in the ICU for almost two weeks, in the hospital for another 3 weeks, then off to a skilled nursing facility, where he has been since September.

Last December, I told him that he wasn't going to be coming home. I simply can't take care of him anymore…it is too much for me, too stressful. And the social workers won't discharge him home unless I have someone in the house when I am at work all day because he's not safe. And it costs too much to have someone at the house all the time.

So, he's in a facility with a bunch of seniors who are near or at end of life. It isn't the right place for H to be, but for now it works in that he is not at the house. We're working on another place for him, but it isn't easy to find assisted living for a 55 year old man.

As expected, H's family are up in arms, minimize his care needs/disability, and have pulled out the stops with guilt, shaming, anger, and pleading.

My emotions are all over the map, even months later, but I am gradually settling in to my new reality. I see him weekly and talk with him almost daily. But, no matter what, he cannot move back into the house.

And now, when I second guess my decision to place him, I read back through this blog and wonder how I managed to survive all those years.

Guilt song trilogy

Low burn

H is coming home in a few days, after spending over two weeks at his sister's house out of state.

I've been sorta beginning to feel fondness for H the past few days…like "Yea, it would be nice to see him." Or even a fleeting, "I wish H were here to share this moment with me," or two.

The weight of my anger and resentment is much lower right now. And so I notice what love that I have for him more.

Before he left, I was so angry that I rarely felt love for him, just obligation and resentment. I am worried that the anger will come raging back when H returns. Without any change, it will.

I am not trying to steal from you

I was just talking with H a few minutes ago. He's asking me if he should find a place near his sister's out of state, "cuz I'm not ready for a hospice or for assisted living."

"Dr. says you are," I say.

"That's not what he told me. ..that was true a long awhile ago. But now you just want to get me out of the house, so that you can get it," he says.

I try to beg off of the topic until he gets home. I tell him that I still think that (place) is the right solution, or something like it because there are big issues here at home. That this isn't sustainable for me anymore. And that everyone seems to have their opinions.

"Then it is over," he says. "You said that this was for better or for worse. If I move down here, then it is divorce…. The amount of care you seem to think I need…well, that's ridiculous. You just want the house."

I object to the word ridiculous.

I beg off, tell him I love him, and say goodbye.

When he gets back, I will try to see what H and I can work out. Something has to change here…if he is doing so well, can he step up?

The bitter aftertaste of denial

I'm getting a sense that the family is minimizing H's disability and gathering the wagons…looking for a place for him to live away from our home and me. I can just hear them cackle about how good he is doing. In some ways, I can't blame them…he's not dying in front of them, after all.

And I know that H will do the best show that he can while he's on his visit. And I will be the bad guy in all of this, even though I've been a "saint" for so many, many years (his family's word). Now, they may think that I'm cheating him…he does. Sigh.

I've been planning on arranging having his family talk with his Dr. and also talk with my shrink. And to get a dementia baseline test done (essential). I guess that I feel a need to build the case…or, at least, smooth the waters?

Truth is, us continuing to live together is hard for me, but easier for everyone else. Living apart is easier for me, but harder for everyone else.

Why is everyone so certain that he doesn't need to go to a facility, that he can live on his own? I have seen little evidence that he can live on his own in the last 3+ years. Was he just being lazy? Why isn't he exhibiting those skills now?

Now that I have your attention...

After a stormy late last week and weekend, it's calming down again.

So, now the family is rallied and taking H off my hands for awhile. I got scolded for acting without checking with them first, but, hey, they don't participate much anyway. The local sister is so guilt-ridden that she tells me that she's embarrassed to talk with me.

Yesterday, H went to his sister's in town for Sunday afternoon so I could "have a break." I slept the whole afternoon. I am so tired I can hardly focus at work today.

H is leaving for his other sister's place out of town in a week or so for 2 - 3 weeks.

I am still planning on filing for Family Medical Leave as I am so exhausted, I can hardly get out of bed. I feel that there is some risk to my career in doing this, but hey, I'm already in tepid-to-hot water, and FML is government-protected.

I DO know that if I stay and work, I won't be doing any better work than I have been doing and will likely do worse: my ability to concentrate is getting worse, my motivation about the work is non-existent, and my attitude continues to decline.

Hopefully, then, I'll be able to have some time off from work at the same time H is not at home. Not certain just what I'll be doing with all that time, but I likely will be sleeping a lot.

Clearly, his family is feeling some guilt and trying to hook me. I'm not letting them….

"You can't just send him away to die!" they said.

"He is dying anyway, you just don't see it. I see it every day."

"I just wish that he wasn't so terrified," his sister says.

"Me too. It's hard to see him so afraid."

They have heaped the guilt on "there's got to be an alternative to taking him away from his home and losing his independence," "when you marry someone, this is what it means (so it is divorce, then)," and "I would never do that to my husband."

To all that I said, "Stop talking divorce…not only is it not true, but it's not helpful. Look, I'm not the bad guy just because I can't cope anymore. Everyone is telling me what I should or should not be doing and feeling, but no one has been walking in my moccasins for 10 years."

While I want to be angry with them, I really don't have sufficient energy for that right now…conserve the energy for what matters.

All that I care about right now is 1) get H out of the house, even if just for a few weeks , to clear my head and rest (check) and 2) get a break from work (file tomorrow).

I haven't given up on placement for H, just a bit of a pause in the program.

Uh oh...

So, just got off the phone with H's sister and dad. Apparently, the whole family is in an uproar because I've "decided to send him off to die at a facility that is a 'cemetery'. People die there," they said. "Yes, they do die there. It's a hospice and nursing facility."

They are also upset because I have not taken some steps they wanted me to take some time ago to "reduce my burden." Translated: bring in some care from outside. I keep coming back to how this won't help me, but "if you had done that in the past, you might not be in this situation." "That may be true, but here is where I am," I say.

H is terrified they say. He "is still cogent enough to know that he's being sent off to die, that you're trying to get rid of him." And everyone is crying about this.

Yup, me too.

Sigh. I told them that I'm willing to consider other options, but I'm not certain what they are.

When I talked with them earlier, they weren't happy with my decision, but supported it. Now...guess it's sinking in a bit more and, of course, they don't want H to be terrified (neither do I), but he is very afraid and has talked with them all. I would be too.

And they chew on me for making a unilateral decision and presenting is as a fait accompi.

OK, so I walk through all this with them. How conflicted I am, how desparate I am, how this is bad for my health & his, how I just can't do this anymore, I'm at risk of getting fired, etc. Fine, you all recognize that I need help, so help me...I've been carrying this for 10 years.

"But you promised that he wouldn't go until he wasn't aware of where he is and that is what marriage is about."

"I'm sorry that I can't keep that promise. I shouldn't be making a promise to someone when they're crying, " I say.

Sadly, I agreed to put my arrangement on hold pending: looking at other places besides the "cemetery" (sic), letting H move into the other room (why this helps I don't know), and have a "family conference" about what we're going to do.

Funny, they never asked for a family conference before about him. Guilt raises its ugly head, no?

Coming home to a clean house

Must keep entries shorter….

Got home from work yesterday and found a very, very clean house. As in, I didn't know we still had a cleaning service. Not a service, of course, but H showing me how he can contribute.

I appreciate the help, as always, and tell him so. I also tell him that he doesn't have to do this for me to love him. I also tell him that this has happened before: I talk with him about going to (place) and for the next few days, he's all a whirlwind of activity. I predict that this his activity will wind down shortly, as it has in the past.

Very strange, day before yesterday, H didn't know what to do in the kitchen. Now the house is spotless (no telling how long it took for him to clean it up).

So, to briefly review the past week (whew!):

- Talked with his doctor and he agreed that H needs to go to (place) and will sign a leave authorization for me when the time comes.
- I talked with (place) and have the application in process (will mail today, hopefully)
- I talked with H about what is happening
- I talked with his mom and sisters about what is happening (no one is happy about this, of course, but they support my decision)
- I'm investigating alternatives to (place) as due diligence

And dreams: on a roller coaster and I hear a voice behind me, "This is where it's really scary." And then freefall, stomach in your mouth, and scary screaming and lots of joyous laughter.

My emotions are all over the map: Shell shocked, excited, guilty, sad, upset, elated, anxious, worried, upbeat, grief-striken at times, confident, tired, compassion. In some ways, I feel like a kid waiting for Christmas morning, except I've never felt guilty about being excited about Christmas.