Life support help
January 13, 2023 11:06 AM Subscribe
My parent is minimally conscious, on life support and could be for a long time. How can I find others in this situation? I’m struggling to find a subreddit or message board related to this.
She had a sudden severe stroke and has been on life support in the ICU for a month so far. My family is not ready to remove care and I’m not sure when we will be. i would really love to find a message board for people who are in similar positions. Googling finds me boards for long-term caregivers (generally their family members are still conscious) or people in hospice, neither of which is quite my situation. Can anyone help?
She had a sudden severe stroke and has been on life support in the ICU for a month so far. My family is not ready to remove care and I’m not sure when we will be. i would really love to find a message board for people who are in similar positions. Googling finds me boards for long-term caregivers (generally their family members are still conscious) or people in hospice, neither of which is quite my situation. Can anyone help?
The social worker at the hospital where my mum was after her stroke said to me that we need to differentiate what we were doing TO her from what we were doing FOR her. I was really angry initially, but it was exactly what I needed to hear.
When I told a dear friend that everything except for comfort care had been withdrawn, she said "Good for you! I wasn't sure you'd be able to do it." I needed to hear that even more. I've never regretted my decision, though I miss her terribly.
I was the sole decision maker by then, so didn't have to navigate the conflicting wishes of another parent/siblings/aunts/uncles. Try to be gentle with one another, and extend each one grace as they face this. Sending virtual hugs to you and your kin.
Seconding ftsqg's offer.
posted by kate4914 at 12:02 PM on January 13, 2023 [13 favorites]
When I told a dear friend that everything except for comfort care had been withdrawn, she said "Good for you! I wasn't sure you'd be able to do it." I needed to hear that even more. I've never regretted my decision, though I miss her terribly.
I was the sole decision maker by then, so didn't have to navigate the conflicting wishes of another parent/siblings/aunts/uncles. Try to be gentle with one another, and extend each one grace as they face this. Sending virtual hugs to you and your kin.
Seconding ftsqg's offer.
posted by kate4914 at 12:02 PM on January 13, 2023 [13 favorites]
I've been there, though for me it was made much easier by my mother being very very very clear (in writing, in person and in her living will) that she did not want to be on life support and to let her go if she was not able to continue to live on her own. So while it was very hard to lose her, we were really clear that she wasn't coming back. Doctors were also very clear about what her scans showed and that was painful but helpful.
She was also very clear about wanting to have her body used for medical purposes, and someone in her condition (brain aneurysm) was a great candidate for donating organs. So we went that route which was actually really helpful. It gave us something to focus on that would make a positive impact in the world and which we knew mom wanted.
Talking to folks in the hospice community could be helpful, the hospice nurses and folks who work in death and dying have been with others in your position. That said, our society is not great about death and dying and it can be a challenge. Modern Loss (https://modernloss.com/) is great and might have some stuff in there about folks in your situation.
Also happy to be connected if it's useful (thirding ftsqg's offer!). Sometimes it helps to talk to someone who isn't trying to fix things.
Sending just so much love and care. This is hard.
posted by mulkey at 4:30 PM on January 13, 2023 [3 favorites]
She was also very clear about wanting to have her body used for medical purposes, and someone in her condition (brain aneurysm) was a great candidate for donating organs. So we went that route which was actually really helpful. It gave us something to focus on that would make a positive impact in the world and which we knew mom wanted.
Talking to folks in the hospice community could be helpful, the hospice nurses and folks who work in death and dying have been with others in your position. That said, our society is not great about death and dying and it can be a challenge. Modern Loss (https://modernloss.com/) is great and might have some stuff in there about folks in your situation.
Also happy to be connected if it's useful (thirding ftsqg's offer!). Sometimes it helps to talk to someone who isn't trying to fix things.
Sending just so much love and care. This is hard.
posted by mulkey at 4:30 PM on January 13, 2023 [3 favorites]
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I let her go after about 10 days. While the decision was terrible to make, once I gave the OK, a huge weight lifted. During those 10 days, I read her a James Herriot book. I finished the book the day of, and then let her go.
When they removed the breathing support, she turned blue, and left us. It was peaceful. I'm very honoured to have been there with her.
Her death was traumatic, and awful. But not her passing. That was peaceful and somewhat carthatic.
Terrible awful decision to make, but I know my Mum wouldn't have wanted to be on that support. And the hope of any meaningful recovery was so very minimal. She wasn't there anymore, she died when her heart stopped. I just released her 10 days later. I thought I'd have trouble living with my decision, but while it flits across my mind "what if", its only a flit. I sometimes feel like I should feel more about it. But not often.
feel free to me-mail if you need to vent/rant/cry. I'll listen. Anytime.
posted by Ftsqg at 11:21 AM on January 13, 2023 [17 favorites]