Update on mom

[triadruid]

For those who didn't see the edit to the earlier post, my mom's status seizures did eventually stop late Sunday night, and have not returned. The neurologist says most brain-wave functioning seems to be perfectly normal, and they've been tapering back on the meds to get her conscious again. My aunt sang with her last night and got some emotional response, but she's still on (some) phenobarbitol and the ventilator.

The next step is to see if they can get her breathing on her own, so they can move her back to NW Florida with family and home and such. If not... well, my aunt is faxing mom's living will to me as we speak. It's a little unclear as to whether it addresses the situation of permanent brain damage/mechanical respiration; mostly it was designed to deal with terminal illnesses, from what I understand thus far.

Any thoughts are welcome, especially those dealing with quality-of-life issues. Hopefully my stepfather will calm down once mom is able to get home, and he can see her and stop blaming her family for "taking her away". *sigh*

Comments

[capriciouslass.livejournal.com]

I've been keeping you and your family in my thoughts since your original post. I was just wondering this morning how she was doing. I'm glad to hear that there has been some improvement.

I do have a few thoughts on the dignity-of-life issues, but I would hesitate to share them not knowing the whole situation. However if she has a living will, she may have already spelled all of that out for you.

Call if you need anything.

Thanks

[triadruid.livejournal.com]

Once I get the living will in my hands and find out what it does and doesn't say (and what the result of the ventilator removal procedure is), I'll surely be contacting my friends who have had to deal with this before.

As her eldest child, I probably should have been a little more pro-active about this, but....

Re: Thanks

[agrnmn.livejournal.com]

I understand the eldest child trying to be proactive. FWIW When I tried I got shusshed and that was that. I hate to say ti but for my folks it would take something like this for me to get any response.

Re: Thanks

[triadruid.livejournal.com]

Relationship between my stepfather and my mom's family has been rocky for years; hopefully as an "outside" person who has never had really close ties to either side of the discussion, I can help mediate things a bit... and, of course, help decide what my mom would have wanted. She was such a free spirit, that a half-life for her might be worse than no life at all...

[starwyse.livejournal.com]

All my love and support. Never doubt that.

[triadruid.livejournal.com]

The thought had never crossed my mind, Star. If I need someone to help me kill a bottle of tequilla later in this experience, I'll know who to call (along with K).

Tequila!!

[starwyse.livejournal.com]

That, could be arranged ;)

Guh.

[saffronhare.livejournal.com]

I'm fresh out of ideas for floral arrangements that will cleverly express a very complicated sentiment.

Candles lit and prayers flown. I love you.

Re: flowers

[triadruid.livejournal.com]

No need for them. The last batch is still quite flowery, and your love much more permanent, Nik.

[teross50.livejournal.com]

As far as “quality of life” goes For me a big step will be to see if she is wearable from the ventilator Which should happen as the Phenobarbital works it’s way out of her system. I think your aunt is doing a good thing It was always my experience that the hearing was intact even on comatose patients.

D , my opinion again, mixed in with some medical experience/knowledge. I always tried to remember the difference between comatose and brain dead. Your mother currently is. As I understand it comatose. With brain activity severely hampered at this point by the chemically induced coma, but the meds are working their way out.

The question I had to ask myself before declaring my father “DNR’ was what his quality of life would be? If he could be weaned from the respirator and after he came of the respirator what would that life be like.
We had talked before he was placed on the respirator and he did not want to live as a shell with only mechanical/chemical support keeping his heart going. He wanted his spirit to be free not trapped in his body.

Your mother’s case sounds like there is still a good chance she may be able to recover and function with out the respirator. I hope that is true. I hope that your step dad will be able to bet past what seems like his own pain and see that the family does indeed care for his wife and nobody is trying to force him to give up his hope

I remember talking to my mom and explaining dad’s condition as objectively as I could at the time. Letting her know about the conversation dad and I had had and asking her for her wishes letting her know I would support what ever decision she made. She opted for the DNR as well.

The problem came later when my brother the Marine went off the deep end. He accused me of taking over. I tried to remind him of what dad he said, since he was there at the time, Yet his own feelings would just not let him accept that our father was dying and wanted to move on. It literally almost came to blows. Fortunately Judith was able to step between us and could communicate to Paul, my brother in a different language than I was using and help him accept what needed to happen as, that which my father wanted to happen.

I hope you and your family do not have to get anywhere near this deep My words of advice for what they are worth is that you all have a discussion about who your mom was and who she will be after you make a decision and what would life be for her.

Hope the long story helped a bit
T

re: comatose

[triadruid.livejournal.com]

Actually it's better than that right now. She's unconscious/sedated, but no longer in an induced coma. Sometime in the next 24-36 hours we should know whether she can be weaned from the ventilator or not. If so, there's a good chance she'll be able to return home, with some degree of brain damage that is as-of-yet undetermined. We'll likely go down there for a while in either case, just to let her know I'm there if nothing else.

I appreciate all your "layman's expertise" in this; like I told chaosdruid above, you'll be on my short list of people to call if I need advice or direct support in dealing with the bigger questions that may still be coming.

Re: re: comatose

[teross50.livejournal.com]

Ty and as always hugs and much love

*hugs*

[weavingfire.livejournal.com]

*warm thoughts to you and your family*

I don't know what health care directives (also known as living wills) are like in your neck of the woods, but on the West Coast, they can get very specific and hopefully your mom was explicit about what she wanted.

I don't really know what else to say other than...it will be a hard road whatever way it goes. All you can do is what you think your mom would want, that is the best way to honor her.

I'm not doing a good job of explaining it, but I guess this is the best I can do.

Re: *hugs*

[triadruid.livejournal.com]

My mom had been living with fibromyalgia and the after-effects of Lyme's disease for years, so she had a living will that *may* have been crafted around the concept of a terminal illness. Depending on how specific it gets (and on her recovery, of course), we'll see what can be done.

Hopefully once everyone's in the same place, it'll become easier to talk about and come to some consensus on.

Thanks for your concern.

[mayden-dor.livejournal.com]

I'll be thinking of you, dear. Warm thoughts.

[triadruid.livejournal.com]

Thanks hon. I'm not gonna ask what you're doing to that beer bottle in your icon there...

[mayden-dor.livejournal.com]

theres a screw top on it! hehehehe

[malvito.livejournal.com]

My medical knowledge being decidedly less than teross50, I can but offer sympathy and support. They are yours when you need them.

[triadruid.livejournal.com]

Thanks Vic, it's always appreciated.

at loss for words

[zylch.livejournal.com]

so {{{hugs}}}

Re: at loss for words

[triadruid.livejournal.com]

"Words fail" seems to be the understatement of the week. Thanks for the hugs, sis.

[hekatatia.livejournal.com]

I don't know much about these issues. I can only offer some prayers and some hugs-from-a-distance that I hope will be comforting.

[triadruid.livejournal.com]

It's appreciated nonetheless, Venus.

[matchgirl42.livejournal.com]

[triadruid.livejournal.com]

Tiger hug! Thanks M.

[leiandra.livejournal.com]

Darlin, you know if there's anything I can do besides send up good thoughts, I'll do my damndest to see that it's done. Just let me know.

[triadruid.livejournal.com]

I know that. Thanks, Red.

Love you!!

[opaljax.livejournal.com]

Big, giant hugs to you and your other thirds. You can also call me if you need me.

Re: Love you!!

[triadruid.livejournal.com]

*smile* Thanks honey..