MetaChat - Having a rough day.

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03 June 2013

Having a rough day. →[More:]We are planning to remove my mother, who has ALS and is in a completely locked-in state, from life support tomorrow. While this is, without a doubt, the humane and right thing to do, it has been difficult for me to just live my life knowing that tomorrow she will die.

It seems like everyone thinks that because I support removing life support, I'm not sad about it. It's still my mom, who I was quite close with, who is about to die, and I will be there to see it happen.

My husband, who is normally great, chose yesterday to pick a fight with me about household chores. Really??

My dad, who has been seeing what he wants to see for a long time (which is why my mom has been on life support this long) keeps threatening to call the whole thing off if he sees any signs of distress from her. The scary thing is, if he wants to see signs of distress, he will. He's having a lot of trouble letting go.

Meanwhile, I'm mentally preparing myself (and preparing my office) for her death, and if he decides to call this off I will lose it. That would be a very self-centered thing to do, not just to me but much more so to my mom, who deserves to be let go.

Just needed to vent. Feeling a bit alone and misunderstood through this whole thing.

post by: amro at: 11:05 | 55 comments

Ugh, so sorry dear. Thinking of you and sending you many [[[[[[[hugs]]]]]]]

posted by ThePinkSuperhero 03 June | 11:06

So, so sorry amro.

I was the one who made the final call to take my mother off life-support, though she had only been on it for a half-day or so at that point, so there wasn't the drawn-out aspect you've been going through, and while I also knew it was the right thing to do, the whole thing sucked. It actually sucked somewhat less when I got to see her without all the tubes -- she had made it clear throughout her life that she would not want to spend any significant amount of time hooked up to life support -- because it looked like she was entirely more at peace than she was when the machines were doing the breathing for her. I don't know if it'll be the same for you, of course, but it was very much worth it to me to see her resting peacefully.

Taking someone off life support tends to cause "signs of distress" in terms of their breathing slowing and becoming ragged. Has someone made your father aware of that? (If it'll help, I can probably dig up some usefully specific, if slightly gruesome, physical stages of dying that hospices give out; they can be useful in knowing what to expect.)

posted by occhiblu 03 June | 11:16

Also, feel free to email me about it if you want, at any time now or in the future. I'm happy to talk about it.

posted by occhiblu 03 June | 11:18

*big hugs*

posted by brujita 03 June | 11:22

I am so, so sorry, my dear. Be kind to yourself. Sending good thoughts your way.

posted by Senyar 03 June | 11:25

occhiblu, if you could send me that hospice info I'd appreciate it. Thanks.

posted by amro 03 June | 11:25

Also also, people are in general bad at dealing with other people's grief. People who think you're not sad about it are probably just hoping to stay in some element of denial so they won't have to deal with it. Which also sucks.

posted by occhiblu 03 June | 11:26

There's very little I can think of to say which doesn't sound hollow and platitudinous, but I am wishing you the best (best possible?) in the coming weeks.

You're made of very stern stuff to be dealing with all of this (plus everything else going on in your life).

posted by Eideteker 03 June | 11:34

That sounds terrible and difficult to go through.
I hope that your mom finds peace and that it goes as well as it can.

And I hope that people let you grieve as you deserve to.

Doing the right thing isn't always the easy thing or a thing you want to do, which you clearly already know.
Hugs and support.

posted by rmless2 03 June | 11:41

*whuffles*

posted by sperose 03 June | 11:41

I will send it, but I'm about to run into a meeting, so it'll be an hour or two. *hugs*

posted by occhiblu 03 June | 11:42

amro, I know you know this, but now is the time to use those hospice or caregiving staff members for their intended purpose: taking care of YOU (and others in your family) by working with your dad. You don't need to be the one shouldering that burden right now. I know you CAN, but you don't NEED to.

She really, really will be free. It will be hard, but family members who have been with someone when they died have told me that they have felt so blessed to be there at that moment. She got to usher you into your life, and you get to usher her through this transition. That's a beautiful cycle.

You are one of the strongest people I know. Things can only move forward. I am sending you wishes for peace and comfort, now and in the coming weeks and months.

posted by Madamina 03 June | 11:53

Amro, I am so very sorry to hear this. Please know that you have all the love and support of all of us. Your ability to articulate your complicated feelings is a testament to your strength and clarity on the issue.

This is so, so terribly fucking hard.

I was once in a similar situation when my father was on life support, and although he had an advance directive, my stepmother defied his wishes, and delayed his death for a few weeks because she just couldn't deal. It was to this day the most difficult time in my life. I empathize so much, and hope that soon there will be a release for you from your anguish.

Please feel free to email if you have any further wish to vent, talk, scream, cry, beat the walls or anything else.

((((((hugs amro)))))

posted by msali 03 June | 12:11

amro, this link looks the most comprehensive and straightforward:

The Dying Process

This pdf is a bit softer and more caregiver-focused (and really poorly formatted, sorry):

Understanding How We Die

I'll look through my printed hospice materials and see if I've got anything else, too.

posted by occhiblu 03 June | 13:36

(In my experience as a grief counselor as well as a griever, the big physical signs that tend to come up are congested breathing (aka "the death rattle") and picking at the sheets. The congested breathing sounds labored, but it's not painful for the dying person. The picking at the sheets can look like signs of liveliness, but it's often a sign that death is very close. I don't know how mobile your mother is right now, though, so that may be less of an issue.)

posted by occhiblu 03 June | 13:38

amro, this is awful. I am so sorry not just for what you're going through now, but for how difficult this must have been for you, your mom and your dad, these past couple of years.

There really are no words adequate for such a sad time. People will say dumb things to you because they want to say something, they want you to know they care, they think they can make you feel better, and it's so hard. Try to remember that they mean well even if you want to bite their heads off. Most people really trying their best.

The people we love most live on in our hearts. You are a strong and courageous woman and I wish you peace and love.

posted by Kangaroo 03 June | 13:43

Hugs and whuffles...

posted by lysdexic 03 June | 13:50

When my mother died, some kind soul directed me to the Victoria Hospice site's publications on dealing with grief (here, under heading "Bereavement"). I don't remember how much I read of them, actually. During the train ride to Maryland I sat next to an elderly woman who told me all about her career as a government typist and elementary school teacher. The distraction she unknowingly offered was a blessing.

I know I'm speaking of very different circumstances from yours: my mother's death was sudden and unexpected. I think some aspects of grief are universal, but I know every situation and every reaction is different. I'm sorry for your impending loss and the strain it is putting on you and your family. Please let yourself be yourself, and don't worry about whether the people around you approve of your feelings. Nobody is making lasting judgments right now. If you can, hold hands with the people you love.

My father and I went to a performance of Dvořák's Cello Concerto a week or so after my mother died. Until then I had trouble taking a full breath. It was as though my lungs were flying at half-mast.

Your mileage will vary. Share what you can with whoever will listen, and don't be afraid to tell anyone you need to be alone. There will always be people there for you when you need them.

Hugs for you and those around you.

posted by Hugh Janus 03 June | 14:10

hugs. Stay strong.

posted by Firas 03 June | 14:27

hugs and whuffles to you.

posted by needlegrrl 03 June | 14:37

Thinking of you. This is rough indeed, even if your husband and dad were being their best selves. ((((amro))))

posted by bearwife 03 June | 15:04

Thinking of you, amro. I don't know what else too say and I can't even imagine how hard this is for you.

posted by dg 03 June | 15:30

So sorry to hear of this, amro. Hugs and light to you.

posted by jbickers 03 June | 15:37

Is there any ritual or goodbye that would help? Can she be wheeled to a window to feel a bit of sun? Can you read to her from a favorite book, the Bible, poetry? Play some beautiful music, or pop music she liked? It feels to me that the transition from life to death needs ceremony and attention. Doesn't have to be all sad music and wailing; you're saying goodbye and easing her journey as much as you can. Set an example for your Dad of holding her hand, talking to her, telling her favorite stories, and tell her that you will miss her more than you can say, but it's okay for her to go, and she doesn't have to suffer any more. I was with a family member who dies, and voicing it helped me a lot. It's possible that some of it got through to him, I believe he felt the love surrounding him. It helped us prepare to lose him, as well, to the extent than one can prepare.

I'm so very sorry for your loss, for your Mom's loss of life and health. Sending you a big hug.

posted by theora55 03 June | 16:43

(((amro)))

posted by chewatadistance 03 June | 18:56

The only good thing about being the person in charge is having actual control of the situation.
Like giving a cat a pill, if you don't have a proper, firm grasp on the animal, it's awkward and needlessly painful for those involved instead of a quickly dispatched necessity. Of course, I'm not talking about your mother, I'm talking about everybody else.

I still find it hard to believe how many people seem to think everyone else are just extras in the story of their life. While sometimes some of us may choose to play supporting parts for others to have their moments, some people need a pointed shove off the stage or a firm finger at the roving spotlight.

I'm sorry people aren't being considerate of what you are going through, but if they've left you in charge by default, that's sadly the way it ends up a lot of the time. I find the best way to deal with things given the opportunity is to be prepared and be informed as much as one can and then just get through it.

I'm sorry you are going through this but I'm glad you will be able to move forward. When I think about the things you were on about 8 years ago and how much has happened since then, it's all quite amazing. Very much a capsule of the give and take of life and how unexpected it all is, but one keeps going, with the good, bad and indifferent.

posted by ethylene 03 June | 20:00

May you and your family find peace.

HUGS

posted by mightshould 03 June | 20:56

I saw my father die. We were all there, at the nursing home, my mom, sister-in-law, brothers, talking about Michigan football, the upcoming season. I was looking right at him. His eyes rolled back and this wave of violet washed over him. His heart had stopped. He was 84 and had been sick for a long time. One of my brothers, a doctor, tried CPR. The paramedics continued CPR to the hospital, but he was gone. In hindsight, I'm glad we were all there and he didn't die alone, but it was shocking and scary to see. I actually screamed, a funny, throaty, involuntary scream. My sister-in-law put her arm around me and helped me out of the room to the hall. Of course, it caught me by surprise. But I imagine it would still be scary, for your father, and for you. Will your mom be aware? Will they give her anything to ease her death? I don't mean to pry. This can't be an easy night. Hugs and good thoughts to you and your family...

posted by Pips 03 June | 21:06

((amro)) It's difficult. I will be thinking of you.

posted by Miko 03 June | 22:00

((amro))

posted by Atom Eyes 03 June | 22:20

((((amro))))

posted by Twiggy 04 June | 00:44

Thinking of you today, amro.

posted by BoringPostcards 04 June | 05:09

I will be thinking about you today, amro. Much love.

posted by msali 04 June | 05:25

((((amro))))

posted by rainbaby 04 June | 05:26

((((amro))))
Like a lot of the others here, I watched my parents die. It's a rough, rough process - it is more, really, like being born than people commonly think - but there is some solace in being there all the way through to the end. Not much, but some and I believe that there is solace to the dying in having us there in love and sorrow. Losing a parent is incredibly hard and it takes a long time to get over it, if in fact we ever do. Give yourself all the extra space and love you would give a close friend in this situation and realize that grief will happen on its own schedule. Five years later and I'm still caught unawares by it sometimes; I don't think that ends. You'll get through this but it's a huge thing; we will all be thinking of you today and sending light.

posted by mygothlaundry 04 June | 07:57

(((amro)))
You'll be in my thoughts all day today. Love to you.

posted by gaspode 04 June | 08:03

Thinking of you, amro.

posted by Senyar 04 June | 08:08

Y'all are in my thoughts.

posted by bluesapphires 04 June | 09:22

I'm thinking of you, amro.

Great words, ethylene.

Definitely, definitely allow caregivers and whoever is emotionally available to take care of you. It can feel wrong in a situation like this, but it's not. Draw strength from it.

posted by halonine 04 June | 10:59

Thank you, all. She has been off the ventilator for about 5 hours now and hasn't passed yet. Unfortunately, this is giving my dad hope, but my understanding of ALS is that CO2 is building up in her bloodstream and it is only a matter of time. I just wish it wasn't taking so long.

posted by amro 04 June | 15:38

:( I just can't imagine what you're going through amro. More hugs to you.

posted by gaspode 04 June | 18:32

Many many long heart felt hugs to you amro. I just watched my best friend pass on Sunday from cancer. I saw your post earlier but wasnt strong enough to msg you then. I went back and re read it and was suprised at how accurate the first link that occhiblu posted above was spot on. Once her breathing slowed to 13 or so per minute it went by quickly and peacefully. I can only hope your mom passes just as peacefully. She knows you are there loving her.

posted by meeshell 04 June | 19:20

amro, just want you to know people are still thinking of you and sending hugs.

posted by Twiggy 05 June | 08:35

Yes, definitely thinking of you.

posted by JanetLand 05 June | 10:11

I'm sending you hugs as well.
But you won't know what to do with them since they're in Dutch.

posted by jouke 05 June | 11:57

Thank you all again, I really appreciate all of the support during this very stressful time. She still has not passed, and while the medical professionals are surprised and say that it will be a matter of days at most, this is like a slow torture for my dad and I. I have been angry at everyone and everything for days and now I find myself angry at my mom for not just resting in peace already! (I know this is irrational, but emotion isn't logical.)

posted by amro 05 June | 12:25

(For those wondering, she is on heavy painkillers and sedatives to keep her comfortable, and is not conscious.)

posted by amro 05 June | 12:27

I'm so sorry you're going through this. When my father-in-law passed (from advanced Parkinson's disease) it was a similar thing, the medical staff were surprised at how long he held on - and at one point he seemed more conscious, alert and aware of people around him, which was so sad and awful for all the family. Be prepared for something like that, he wasn't 'there', but he seemed to be.

There are so many people around the world who are thinking of you, my dear Amro.

posted by Senyar 05 June | 14:26

Very definitely still thinking of you, and I'm glad you were able to check in here.

posted by occhiblu 05 June | 15:25

*hugs* Still thinking of you, and I hope she and you have peace soon.

posted by TrishaLynn 05 June | 17:25

Thank you, amro, for letting us know. You're very much in my thoughts. Heartfelt wishes to you and your mom and dad and family...

posted by Pips 05 June | 18:00

My mom passed away this afternoon. My dad was holding her hand, and she opened her eyes and looked right at him right before she passed. All of your support during this time has meant so much. Thank you.

posted by amro 05 June | 20:35

That's wonderful that they had that moment, amro, as obviously difficult as it must have been.

Please check in as much as you need.

posted by occhiblu 05 June | 21:11

I'm glad she was able to meet her grandchild.

Please know my thoughts are with you.

posted by brujita 05 June | 21:40

Hugs to you, amro.

posted by Senyar 06 June | 12:28

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