budnkota

This kind of plays a bit into another discussion, but was something I was thinking about already... (If you don't want to read the long rant, the primary poinnt is the last paragraph)

I have an aunt who's about 36. She's had serious medical problems since she was about 16. I don't think they really know what's wrong, but they have given it the following labels: lupus muscular myopathy, bud chairi syndrom, evans syndrome and something else that I forget. She's been written off as dead by the docs several times and always comes back. Has been told she'll never do this or that again - yet has worked for the past 5 or 6 years as a managing CNA at an alzheimer's facility. Medically, she's a mess.
She had a hysterectomy at 21, a liver transplant or 2, she has shunts in her liver, brain surgery - you name it. About 6 weeks ago, nobody had heard from her, so they went to check on her. Had to break in the house - she was passed out on the couch (tub water overflowing - she'd have been dead already had she gotten in). Apparently her blood thinned so much that it was leaking out the artery walls (? If I understand correctly). She's been in the hospital since. They put in a colostomy bag and said she'd be paralyzed for life (could only move her face and a bit of her right hand). Did a trach and said she'd never come off the respirator. The docs had a family meeting asking if they wanted to drug her unconscious and pull the plug. Aunt was asked and indicated "no," she wants to continue to fight. She's gained back the ability to lift her legs slightly and WAS able to get off the respirator. But if her liver doesn't start to work my Weds, they say it's going to be a big problem.

If it were me, I'd have checked out by now. Assuming full mental abilities, at what point would you decide it was time to just go?

.:Kalli Rae:.

Wow that is a tough one. I would have to think about it a bit first.

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Mother is the name for God in the lips and hearts of little children.
Kalli Rae--
Mommy to:
Aaron Joseph- 8yrs Lily Ann Marie- 7yrs Kyla Raye- 4yrs

Skyburning

When my quality of life is reduced I'm done. My family is on strict orders to DNR and to donate my insides. Then I'll be cremated. I've been very very clear with my wishes and have written it down and had two of my family members sign it as "witnesses." I'm not taking any chances, I do not want to be on life support long term.

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musicmom

Somewhere down the line previously to this someone had to talk to her and ask her. What would she want?
If her organs are shutting down then I would have her in a morphin induced coma and let her pass peacefully. She sounds like a fighter but I would have to base it on what she would have wanted.
Sorry to hear. I said a prayer for her.

Ari2

I'm a big fan of DNR/DNI orders when someone has a strong opinion. But working with hospice patients I was amazed at how most people's perceptions about what constitutes a decent quality of life changes.

One guy, who died of metastatic cancer after fighting it for years, told me how his thinking evolved. He originally said that if he couldn't drive, go fishing, and play with his grandkids that his quality of life would be too low to continue. But later, when he could do none of these things, he decided that his quality of life was OK as long as he could stay out of the hospital and go to church regularly (he was a church deacon). When he couldn't do these things, he decided that it was OK as long as he could still talk and (I swear) poop regularly. Up until he couldn't converse any more we regularly laughed about how he kept whittling away at his definition of an acceptable quality of life. In the end, he just wanted to live and remain with his family. Of course, he didn't get to do these things either. And he was such an incredible person, with a generous heart and lively mind.

For me, I don't know where I will draw that line. I think it is often impossible to know what you would do in a situation until you actually are living it. As I don't have a clear idea, I haven't written an advanced directive. I've talked to my husband and parents, and they are comfortable with me not deciding.

Lissa

Quick answers.

1. When my quality of life is lessened to the point where it is no longer enjoyable.

2. I am given a death sentence and treatment that prolongs my life would be too painful to endure.

3. When I have become a burden financially and mentally on my family.

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musicmom

Ari2

Yeah, as horrible as things get, I could see wanting to remain around as long as I could see or hear my kids and feel their touch. I wouldn't want them to have to participate in my long, drawn-out death (can't say that I would want to either ), but I think it would be very hard to want to leave them.

musicmom

Lissa

I hate death.

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