Log in

No account? Create an account
05 April 2012 @ 01:02 pm
I think i said this once already, but i'd like to thank everyone who managed to come up with something encouraging to say over the past week or so, and i'd like to thank everyone who couldn't come up with anything significant to say and so just said nothing at all, and i'd like to thank everyone who just +1ed a post instead. (Yay! Everybody wins!) I'm sorry i haven't been able to come up with anything to say in response to most of the longer comments, but i do appreciate them.

Some people, here and elsewhere, had some actually useful words of advice, some of which i have an easier time believing than others.

Multiple people have said some variant of the theory that terminal patients often wait until their loved ones have left before finally "deciding" to die, or letting themselves go, or whatever it is that causes the process, whether it's because they don't want their loved ones to have to go through that or because they want to do it in private or whatever. But whatever the mechanism or reason it's because it's what they wanted to happen. It's a nice theory, and i'd like to believe it, but i have trouble with it because she was brain dead, at least at the the higher levels, so how could she know if i was there or not?

Of course admittedly that inevitable leads to the idea of "well if she was brain dead that absolutely nothing you did during the last week mattered to her, including whether or not you were there when she died."

I don't really have an answer to that one, other than possibly just claiming that "it mattered to me," but it mattered to me because at least in part because i felt like i'd let her down.

I guess even though i don't think we go anywhere after we die, i still feel the need to be spiritual enough to imagine that we're still here for as long as our bodies are still alive, even if the brain is so damaged that we can never be well again. I can't think of any logical reason for that being true, it's probably just a "pleasant" fantasy inspired by our inability to observe what's going on inside someone else's head directly.

On a more practical note, her step-mom told me that the average lifespan of someone after diagnosis of "end stage renal disease" is almost exactly five years, which is almost exactly how long shelleycat lasted. (She was diagnosed sometime in 2007, a few months before we met i believe.) Of course given that this is shelleycat we're talking about, this may have been the first time she was ever average about anything in her entire life.

She also said that she and the rest of the family were surprised about how good a job shelleycat did about sticking to the dialysis in general, given her personality type and past behaviour in relation to medical stuff, and they thought that was entirely due to my influence. That's certainly something that's nice to believe, though obviously there's no way to prove or disprove it at this point.

Finally, i had dinner with thumbie and shamiksan last night, and they pointed out/helped me understand that it may be true that if i'd dragged shelleycat kicking and screaming to her dialysis treatment that saturday she might very well be alive and "fine" right now. But since it seems to be a progressive disease (none of her friends and family are doctors, but we all think that's the way it works, though we're not sure of the exact mechanism of what's being used up/worn out/whatever. But it sure seems to fit her pattern of health now that i look back over the last four and a half years.) that it would just mean that i would then have to be eternally vigilant for the entire foreseeable future, because from that point on any time she missed a session or two might have resulted in the exact same thing. Regardless of how tired or sick she felt and no matter how much she told me she didn't want to go and tried to insist on staying home, i would have to convince or cajole or literally force her to go, or the exact same thing might very well have happened a couple weeks or a couple months later.

Which isn't to say that i wouldn't have wanted to have that time or wouldn't have been willing to go through that much effort on my part, but there's a very real question of exactly how much longer the relationship would have lasted after the first time i was forced to ignore what she was saying and tried to just literally pick her up against her will and carry her out to the car.
Ambermaggiedacatt on April 5th, 2012 09:59 pm (UTC)
I think you (and the others you've been talking with) are on to something here.

Perhaps it's not accurate to say there is NOTHING you could have done to keep her alive (at least temporarily), but I think that it is nonetheless likely to be true that you couldn't have done anything that she would have wanted you to do. It sounds like she had progressed to a level where--yes, she could have lived LONGER, but her quality of life would have been increasingly poor, and she would have been increasingly tethered to the dialysis in order to maintain even that meager standard.

It sounds like she was tired of living that way, and that she had battled that fatigue and was a "good girl" with her treatment most of the time because she loved you and wanted to stay around to be with you. But I think you're right--if you had literally forced her to continue undergoing treatment, that would not only destroy some of her happy feelings toward you, but would continue to build an antagonistic relationship with her treatment. What would happen when she decided to rebel against both the treatment AND you? It would have ended the same way, except you guys might not have ended on a happy note.

It's hard to end on a happy note, because it means you lose something that meant a lot to you and brought you joy. But you also brought HER joy in her last years and months, and that is something to treasure. You didn't fail her by letting her make her own medical choices. You let her finish her life with dignity, still in control of herself, making her own choices with full knowledge of the potential consequences.

I imagine that when someone is living under the cloud of terminal illness, knowing that sooner or later it's going to be over, it is easy to become sanguine about taking those kind of chances... especially when you start feeling crappy much or all of the time. It's easy for those of us who are still healthy to want that person to continue to hang on for our sake, because we don't want to lose them. But I do think it would be a mistake to try to FORCE them to stay. She hung on for you for a long time, and she loved you when she died. <3
受け継がれる意志doctorskuld on April 5th, 2012 10:10 pm (UTC)
My two cents on the stage 5 renal disease are just to confirm what you said. At Shelleycat's stage, missing any dialysis treatment could have been potentially fatal. The kidneys basically filter the blood and maintain electrolyte balance and acid-base homeostatic balance (as well as filter out wastes, like urea), and all of these influence heart function, since the heart maintains its functioning based on differences in electric charge between the outside and inside of their cells. She would have had to go to every single dialysis treatment just to have a passing chance of survival, and if she didn't want to go or was too tired, you would have had to force her.

I am deeply sorry for her passing, and I hope that she understood what the risks were when she made her decisions. It's been heartening to read your posts, and to realize that you have so many good memories of being with her, and you guys had such good times. May you never forget the good moments.

Madman Across the Watermadmanatw on April 6th, 2012 03:13 pm (UTC)
I've been reading without posting, but I realized there was something that it might be good to have said:

these posts have convinced me to get off my ass and get around to taking a CPR class. It's been on my vague to-do list for years.

I guess I mostly wanted to post that to say that you were having an affect even on the people who were otherwise just lurking. It's been heartbreaking to read- I'm really sorry.
Desireemadduckdes on April 7th, 2012 08:55 am (UTC)
I think there are no perfect endings.
When something is ended by an outside force, or in general when something awful happens, sometimes I take on illogical levels of blame... because somehow that feels better than embracing being powerless in the face of something way bigger than I am. If I couldn't stop it this time, how can I stop it next time? No thanks, I'll take the guilt please.

But you did (and will in the future) have some level of control, by appreciating the moments you had, and making her feel loved and comforted whenever you could. I think you did a stellar job of that. Without getting spiritual, I think the straight up medical literature has indicated that more is going on in patients' brains than we might understand. I think at some level, she really did get something out of you being there. She felt you. It mattered.

One better, I think people can feel what type of leaving is going on when someone walks out of the room. I think it's possible to leave your heart behind while you temporarily leave physically. Whether or not you were in the room, I don't think she died alone. She had the best part of you there with her, and that made it safe for her to go when she was ready, on her own clock.
rowrrowr on April 9th, 2012 04:58 am (UTC)
I haven't been able to post any comments so far because I've a hard time coming up with words. But.. I'm here. I'm very sorry - I only met her once but I know you took wonderful care of her and I have always enjoyed reading your posts about you guys - they were so cute. :)