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Our grandma had a massive stroke today. Hence, the "family conference".

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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Feb-28-10 11:24 PM
Original message
Our grandma had a massive stroke today. Hence, the "family conference".
I'm crossing my fingers that my nom de plume will be enough to write this here without repercussions.

Our grandma had a massive stroke earlier today. She stopped taking her blood thinners recently for some unknown reason. (It's not financial.) We raced to the hospital when we got the call. She had a minor stroke a few months ago.

I am going to miss Grandma more than I could ever tell anyone here. She is the last of the red-hot liberals. (Let's put it this way: Instead of giving her a Christmas gift one year, Grandma asked me to go to a demonstration with her.) I love her with all my heart. At the same time, it's over. She's had a great life. It's more than evident there is significant damage because of the stroke that will not resolve itself. In a previous life, I worked for a health care company. It wasn't lost on me that there was no effort to limit the number of family members in the room, she wasn't hooked up to twenty machines, there is a saline IV and nothing else.

Of course, in any family, there's always the contrarians. I love one of our aunts and uncle, but they are actively discouraging Grandpa's decision to let Grandma's DNR stand. They are fundamentalist Christians, and believe that life should be preserved at all costs. Our aunt had the stones today to imply that Grandma might learn some "humility" if she's allowed to live in such a state. (She can't speak. She can't eat. She can't get out of bed.)

I've been through this before. In 1991, I was the family member that made the decision there would be no heroic measures to preserve my mom's life. It was agonizing. At the same time, I knew she would never want to live hooked up to machines, and I know Grandma is the same way.

So. Have you endured the "family conference" before at someone's bedside? How did that go?
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Forkboy Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Feb-28-10 11:40 PM
Response to Original message
1. I haven't.
Edited on Sun Feb-28-10 11:40 PM by Forkboy
Dealt with ole sudden death in my arms, but no talk to family members. I suspect my father and I will have a good joking confab (if given the chance). We both share the same black, gallows sense of humor. He's my "health proxy" (they're afraid I'll off myself first...as if I was that lucky and had the guts!). I suspect my family would know where I stand...I've never made it a secret. If they don't the fuckers had better hope I don't survive!!! ;)
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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Feb-28-10 11:48 PM
Response to Reply #1
2. This is IMHO, and totally up to you
If you don't want to sign a living will, please write something to the effect you don't want heroic measures taken to preserve your life, and have it witnessed by someone (a notary public, for instance,) that is not in line to inherit whatever you might leave to your survivors.

I will be talking to my husband about this over the next few days. I told him there's going to be a shitstorm involving the fundie relatives and Grandpa; he doesn't need it right now.

It is AMAZING how fast this stuff happens.
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Forkboy Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Feb-28-10 11:52 PM
Response to Reply #2
3. My family knows.
I barely want to stay alive as it is. They know what to do. And thankfully the only fundie in the family has no say. :)

Your advice is still good though. I haven't made much official. I should. Let's get this show on the road!
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kimi Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 12:12 AM
Response to Original message
4. Whatever happens, your grandma sounds like a great lady
I hope she has the passage she wants, bless her heart.
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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 10:51 AM
Response to Reply #4
5. Thank you, kimi
She's the greatest. We will miss her terribly, but she wouldn't want to spend whatever time she has left the way things are right now.

:hug:
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CaliforniaPeggy Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 11:05 AM
Response to Original message
6. My dear Missy Vixen...
Safe passage to your grandma...

I am a firm believer in death with dignity, and I think she's going to have that.

Luckily, my family has very down-to-earth ideas about end of life issues, and we all have Durable Powers of Attorney for Health Care signed and put where we can find them.

I am a retired RN, and I worked critical care...we saw this sort of thing every now and then. Normally the family had already come together on the proper outcome, but not always.

Hugs to you, sweetie! You ARE doing the right thing.


:hug: :hug:
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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 12:14 PM
Response to Reply #6
11. Thank you, my dear CaliforniaPeggy
I'm not the decision maker. There's a layer above me. LOL Mostly, I felt so badly for Grandpa. A conversation that should have been held between him and the doctor, privately, was held in front of fifteen people, fourteen of which had no business weighing in on it, IMHO. Grandpa was uncomfortable that Grandma might be listening to all this. He asked my husband if DH thought he made the right decision.

I made a point as we left yesterday to shake hands with the nurses in her room, and thank them for taking such good care of Grandma. I don't know how you, and they, do it.

I'm calling the hospital this morning to ask the social worker what the best thing we could do for him might be, other than listening, making his favorite foods and letting him know we support him, no matter what he decides.

Thank you again.

:hug:
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hippywife Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 11:25 AM
Response to Original message
7. I think you are referring to her living will rather than DNR
Edited on Mon Mar-01-10 11:26 AM by hippywife
and they have no say over what is in that legally binding document. Whatever she signed into her living will is what happens, not what your aunt and uncle want, or even your grandfather. If it were my grandmother and she had made out a living will, I would threaten to sue anyone who even tried to go against her wishes.

I really feel for you in this situation. I lost my gran to a major stroke, too, but it took six months for it to play out, even without drastic measures like feeding tubes.

I wish you the best in this, Missy...peace in your heart and the strength to do what she indicated she wanted in her living will.

:hug:
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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 12:08 PM
Response to Reply #7
10. hippywife, you know a lot more about this than I do
We don't know what paperwork has been signed or not between Grandpa and Grandma. I know that the nurse brought Grandpa a copy of a pamphlet they had on advance directives after the conversation yesterday.

In a related issue, my MIL has a variety of health issues, one of which is the fact she's bipolar. Whenever there's another health crisis, she rescinds her DNR paperwork, calls another "family conference" to discuss it, on and on, so this is the only experience I have with it. So far. (We'll be filling out paperwork of our own when I talk to my husband about it this week.) My mom had a will, but no directive. It was obvious she would never recover. I miss her every day, but I could never regret making that decision.

Mostly, my job is to support Grandpa. If there's no paperwork and he has to make the decision, we support him. The doctor spent a lot of time yesterday making sure he understood that if Grandma's condition worsened, either they bring the house, so to speak, or they let her slip away. Grandpa doesn't want heroic measures. She wouldn't, either.

I'm so sorry you lost your grandma, and thank you so much for explaining the difference between a living will and a DNR order.
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hippywife Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 04:26 PM
Response to Reply #10
14. I do see that as your best role right now.
Edited on Mon Mar-01-10 05:17 PM by hippywife
In support of your grandpa. He is needing it on so many different levels, as I'm sure you've guessed.

Even if there is no Advanced Directive (aka living will) it really should be his decision without influence from your aunt and uncle. Whatever he does decide right now, he is going to be filled with doubt about that decision. He need someone to be there for him and assure him, whichever way he goes, that he did the right thing for your grandmother regarding her condition and her wishes.

He is losing his life partner, Missy. Like losing an appendage. The aunt and uncle need to stay out of it.

When my gran first had her massive stroke and the doctor called everyone into the room to decide what to do, my dad, my aunt, and my uncle included me in that discussion since I was the closest one to her. There was no dispute, all of us wanted the best for gran. We decided to let her slip away on her own. It took a while and there were times she rallied consciousness so we still had some time with her, but we didn't take any heroic measures at all.

Please encourage your family to keep her wishes at the forefront and consider what her life would be if they don't.

Hang in there, Missy. It eventually does get easier, but it's not gonna be right now, hon. :hug:

ETA: Re: the DNR (different than the living will) if she has signed one, only the doctor can reverse that decision and only if he/she signs the reversal stating that he/she believes that the person did not have the mental capacity and facilities to make that decision. The DNR is in case she does actually die, and prevents emergency resuscitation measures to bring her back.
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LiberalAndProud Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 11:43 AM
Response to Original message
8. I wonder how your aunt will learn some humility.
Is she your grandma's daughter? It seems to me she could use some lessons in respect as well.
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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 11:56 AM
Response to Reply #8
9. I was astonished
Grandma has several daughters. I'm not giving exact numbers, but I told my husband this morning to brace for arguments among the aunts. I know it's going to happen.

Keeping someone else in a state that they have NO quality of life to teach them "humility"? If that's what Christianity is, I'm glad I passed on it.
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elehhhhna Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 04:58 PM
Response to Reply #9
15. "lets' punish Grandma by keeping her on life support"? Your aunt is an ass.
So sorry -- I suspect she's also one of the louder family members and will probably become a vulture for Grandma's objects asap.

Keep Grandpa away from her if you can, honey. Be strong.
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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 08:51 PM
Response to Reply #15
17. I can't figure out why anyone would think this was appropriate
Our other aunt was horrified.

There should be some interesting family conversations over the next few days, that's for sure.

:woohoo:
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elehhhhna Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-02-10 04:43 PM
Response to Reply #17
24. so how's it going today?
yanno, the aunt who's an ass is probably superstressed and people say very stupid things but, wow, she may have a tough time living that one down.

Ages from now you might ask her if she thinks suffering on ones deathbed is a great opportunity...and for what...and what are her future plans when the time comes, anyway? Poor thing. She's a mess.
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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-02-10 05:39 PM
Response to Reply #24
25. Things are unchanged
We'll probably go to visit tomorrow night.

I know people are under stress when someone dies, but sheesh. I still can't imagine where that comment came from. Plus, she's hanging with the red-hot-liberal sisters, and I predict friction as a result.

I have to go to a class later. I'm thinking about calling the hospital and asking whomever is in the room to hold the phone up to Grandma's ear.

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Call Me Wesley Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 12:17 PM
Response to Original message
12. May she have a safe passage.
Hang in there.
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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 08:53 PM
Response to Reply #12
18. Thank you, CMW
It's nice to hear from you. I hope it's all wonderful for you, Heidi, and the Clever and Wily Cat Named Ginger.

;-)
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marzipanni Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 01:45 PM
Response to Original message
13. I'm sorry this is happening.
Is your Grandma totally non-responsive? Stroke patients can sometimes hear what is said around them even if they can't nod or squeeze your hand in answer to your speaking to them.

Have you heard of the brain researcher, Jill Bolte Taylor, who had a stroke (brain hemorrhage) at the age of 37, recovered with the help of her mother, and wrote a book about the experience-what it felt like to go through it.
Her website has a couple of videos of her talking about it, and other information. It is so amazing to get the insight of a person who understands what a stroke is, so deeply both objectively and subjectively.
http://www.mystrokeofinsight.com/
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texanwitch Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 05:32 PM
Response to Reply #13
16. -A friend of mine who lived though this, she is getting better everyday.
http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

The old friend is gone but a new friend has been born.

I miss the old friend a lot, the new friend is more serious.

My friend is still here.

I hope the best for your grandmother.

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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 08:55 PM
Response to Reply #13
19. Grandma can nod, she squeezed my hand
She's trying to mouth words, too. Mostly, she's livid she can't make everyone around her understand. ;-) If there was anything I could tell people who've never met her that describes what she's like, it's that. She has an iron will. If it's possible to recover from something like this, she will.

I will definitely look up Jill Bolte Taylor's writings on the subject.

Thank you.
:hug:
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applegrove Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 09:11 PM
Response to Original message
20. Vibes to your grandma.
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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-02-10 03:38 AM
Response to Reply #20
22. Thank you, applegrove. n/t
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ismnotwasm Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Mar-01-10 10:03 PM
Response to Original message
21. I'm a nurse
Edited on Mon Mar-01-10 10:04 PM by ismnotwasm
And I've seen variations of this from all kinds of aspects. I wanted to comment though--thinking someone will learn "humility" from something as devastating as a massive stroke is one of the more horrible things I've ever heard. I work in transplant now, but I was a long term care nurse for many years and what I learned, and what I know, is that the wishes of the suffering one need to be followed as closely and clearly as possible. It's the only true ethical decision, or if one is so inclined, the only true spiritual one

In my work, we participate in family conferences all the time. Families disagree, the death or impending death of a beloved one brings out the best and worst in people, usually revolving around 'issues' that can no longer be resolved. Religion, when not universal or sometimes when it is, can rip a family apart. I've had Jehovah's Witness's for example, explicitly require the staff NOT to let their family know they've received blood products. I've had the parents of developmentally delayed adults request us to not tell the person that they were dying, as the parents thought it would be too frightening. I've had brothers and sister argue with the spouse of a parent over what 'code' status to use or whether to intubate or not.

When we get our palliative care program involved, it goes much easier. Palliative care is NOT hospice, palliative care focuses on what the patients wishes are, working within family dynamic, and the best way to get as close as possible to that goal.


I'm sorry about your impending loss, and what you've already lost in your Grandmother. She sounds like an awesome women.
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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-02-10 03:42 AM
Response to Reply #21
23. When my mom was in the hospital, we could be in the room for fifteen minutes
and no more than two people at a time. There was fifteen family members in that room for over an hour yesterday listening to the doctor. There were two nurses there as well. I commented to Mr. Missy Vixen that they were most likely acting as witnesses to the conversation.

Seriously, I don't know how you all do what you do. We had family members that were going to quiz the neurosurgeon on every subject possible, including the Seattle Mariners' season this year. :eyes: The doctor explained to the best of his ability, then it was up to the rest of us to attempt to explain to those who either couldn't or wouldn't understand that, most likely, Grandma was not coming out of the hospital.

Thank you so much for your comments. I will do my best to be as much support as possible for Grandpa, and stay out of most of the drama.
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lukasahero Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Mar-02-10 06:07 PM
Response to Original message
26. I'm so sorry you are going through this
Your Grandma sounds like a great lady. I hope you can find a way to support your grandfather in this decision. These times are so difficult to begin with that family discord is both bound to happen and should be minimized by those who have the power to do so. (I hope there is someone who has both the station and the guts to stand up to your aunt on your grandfather's behalf.)

You are in my prayers and I wish your family peace through this ordeal.
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