Wednesday, January 24, 2007

My poor sweetheart in the maelstrom

More than a week ago, I took H to the ER because he was having a minor seizure. When this happens, and it has happened a lot in the past year or so, they watch him for awhile and then send him home if his syptoms improve. Sometimes, they admit him; last week, they didn't.

I've been mostly home from work for the past week. Partly because I have a wicked head cold and partly because H has been very, very sick. He's been in bed 80% of the time for the past week.

I've been talking with his neurologist, who has had me up H's anti-seizure medication. It hasn't made any difference.

H's left hand and left side of his face have been twitching and kinda paralyzed. He's been confused and very docile. He can hardly walk to the john.

When I took H to the hospital, he could hardly get into the wheelchair at the hospital front door. He looked so frail, so weak, so disabled. My poor sweetheart. His speech was slurred because his tongue was both numb and twitching.

I cannot believe that this is the same man that I have been with for more than half of my life. But I know it is because I have watched his decline for many years now. His decline has been very steep the past couple of years.

24 hours later (now), he's in hospital, and they still haven't gotten the seizures under control in spite of some heavy gun IV medications.

My poor sweetheart.

On the way down in the truck this afternoon, H told me that he is tired of this...of all the pills, the pain, feeling so very bad. I told him that what is happening is unsustainable; I can't care for him and the house and the pets and the job. I feel badly that I told him that I needed him to get well or die. (I wish that I had said or we somehow get you the care you need, so that I can be your partner...not your caregiven since your care needs are so high right now.)

His care needs now exceed my ability to meet them. Whatever is causing this: HIV dementia, PML, stroke, whatever...please give the man a break and let him go. he has been so sick for so many years and so miserable, please Father, just take him.

I have always known that this moment would happen. When I couldn't take care of him any more. And here it is.

I am both afraid that he will die and afraid that he will come back home. H's mom says that for my sake, he can't come back home. The precipitating event has occured and now is the time to act. To put him in a local faciliy that is world-renowned for its expertise and kindness. Where he has been before. And where he says he wants to go "when it is that time."

How do you say to the man you've loved for half your life, for 24 years, "Honey, I know that this place is the end of the line for you, but that is where you are at. I love you and can't care for you anymore. But we both know that these people here can. And you can come home on the weekends."

How do you acknowledge with this man that we both know that he is dying and that he isn't getting the care he needs here at home?

All I've ever wanted to do with him was to talk with him and make love to him.

And now we have to talk about dying.

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