Introvert needs help with impending death etiquette
July 11, 2015 1:28 AM   Subscribe

So, my spouse of 20 years has weeks to live according to the hospice nurse who came today.

This has sort of happened suddenly. He was feeling bad for the last year, but really only diagnosed with end-stage-liver-disease about a month ago. He had been drinking fairly heavily in the past year or 2 but not so much anyone would think this was coming. The doctors think his long history of pain meds for a back injury may have contributed but no one is really sure.
He has been in in-home hospice for 5 days and yesterday took a nosedive, delerium, difficult to wake, strange reflexes. The nurse said he is in transition and has days to weeks.
I'm not sure who to tell at this point. His parents and siblings know, as well as mine.
But what about others? He didn't really have any friends, just spouses of my friends that we went out with as a couple before we moved last year. A few people that he used to keep in touch with until 4-5 years ago and some old facebook friends.
Should I tell these people now or wait until he dies (it won't matter to him I don't think,hes barely aware of his surroundings most days,) Is there some protocal I'm supposed to follow?
I'm so overwhelmed and just wish there was a list somewhere I could refer to.
posted by mismatchedsock to Human Relations (22 answers total) 1 user marked this as a favorite
If your husband has lucid moments, ask if there's anybody he wants you to contact. If he's not lucid enough for that, my instinct would be to send short notes to everybody you can think of. You don't want somebody to find out after he's died and say, "What? Why am I only finding out now? I would've done anything to see him one last time!" That's a worst case scenario, but to avoid any stuff like that I think it's worth the trouble of sending out a two-line message to all of his old friends, even Facebook friends. It could be kind of a form email, nothing fancy and nothing you should really agonize over.

As an introvert your instinct may be to just keep this quiet. I can sure understand that feeling. But remember, you're not reaching out to these people for yourself, and you're not doing anything embarrassing.

I am really sorry you're going through this, and I hope your spouse's passing is peaceful.
posted by Ursula Hitler at 1:54 AM on July 11, 2015 [7 favorites]

This situation is about (in addition to you and those close to him) other people, as Ursula says. It gives them an opportunity to respond, even if it is only a card. Some may surprise you with their response, and be really grateful for the notice. Please give them that opportunity, to the extent that you can.
posted by GeeEmm at 2:07 AM on July 11, 2015 [1 favorite]

Absolutely, positively do whatever is easiest for you. Make sure your friends know and have the opportunity to offer support and help. Beyond that, I don't think the wants of other people matter much in the comparative scheme of things; dying is not a social obligation in the same way death is.
posted by DarlingBri at 2:28 AM on July 11, 2015 [11 favorites]

Honest to God I would post it on Facebook, which is becoming a more and more common way to disseminate this sort of news. You can say, "We're not up for visitors but I read him letters and cards and emails from friends when he's feeling lucid." Or whatever.
posted by Eyebrows McGee at 2:29 AM on July 11, 2015 [37 favorites]

My personal opinion is that you're not obligated to go out of your way to let people know right now. If you feel the need to tell certain people and can contact them easily, do so. But if you're going to have to use some private detective skills to track someone down, you can let them know after he has passed. This is very sudden and I would hope that everyone would be understanding that while your spouse was dying you might not have been able to reach out to them. Some people will try to make it about them, but it's not.

I'm sorry that you're going through this. Take care of yourself.
posted by kinddieserzeit at 3:02 AM on July 11, 2015 [1 favorite]

Also, feel free to delegate telling people! One of the most loving and helpful things a friend or family member can do in a situation like this is to offer to contact people on your behalf, and there's nothing wrong with asking someone to do it if they don't offer. It is just excruciating to put yourself in the through telling people over and over, and personally I'd choose not telling anyone if I had to do it myself. Ask one of your friends or family members (not his immediate family, they are probably equally wrecked), hand them a list of names and contact info if you have it, tell them whether/how you want to deal with responses (visits? Phone calls? Emails? Cards? Donations to charity? Nothing? ALL are fine). And then forget about it and go back to your spouse and loved ones. My condolences for your loss.
posted by instamatic at 4:46 AM on July 11, 2015 [35 favorites]

Seconding instamatic. When my daughter died one of my friends took over telling all my friends and it was so helpful. She used my Christmas card list.

Regardless, if you don't do things perfectly it is okay. It really is. I am so sorry for your situation.
posted by warriorqueen at 4:52 AM on July 11, 2015 [8 favorites]

I'm so overwhelmed and just wish there was a list somewhere I could refer to.

The hospice social worker should be able to offer you some guidance on this matter as well as others. IME, hospice staff are as dedicated to helping the patient's family as much as the patient.
posted by DrGail at 5:01 AM on July 11, 2015 [9 favorites]

This difficult time is about YOU and your spouse. There are no social niceties you need to follow right now, just focus on the two of you. You can mention it to another family member if you want and see if they will do it for you, but it really isn't necessary. Everyone understands this is just awful for you, and there are no expectations. But if you are anxious about it, by all means take some action. I agree that Facebook is an effective communications tool.
posted by raisingsand at 5:52 AM on July 11, 2015 [2 favorites]

I'm so very sorry for you and your husband. The whole process of losing someone close to you is overwhelming and I remember that feeling of just wanting someone to tell me what I was supposed to do. I think that impulse is telling you that introverts need external support and connection too. Do post on Facebook. Those who want to see your husband before he passes away will contact you, but you will also receive the support of your friends. Let them come sit with you and your husband or bring you something to eat or he with any arrangements.
posted by cecic at 6:15 AM on July 11, 2015 [2 favorites]

There is no proper way to handle this. You are dealing with something so big and so awful that if you told everyone to go jump in a lake, you would still be in the right. Tell the people who will bring you comfort in your time of need.

It often happens that right before someone goes, they get a day or two of lucid peace where they can say their goodbyes. If this happens, think about who you and he will want there for him to say goodbye to. It might just be you. And that is okay. You don't owe any ounce of your grief to anyone else. This is your pain. You share it at your own pleasure.
posted by myselfasme at 6:33 AM on July 11, 2015 [3 favorites]

Also, the hospice people are usually amazing and have a lot of training and experience with these types of situations. You may get a lot of insight about how to navigate notice to others and support systems as an introvert by talking with them. Your instinct may be that they are there for your partner but they are there for both of you and your family for sure. So many condolences.
posted by vunder at 10:46 AM on July 11, 2015 [1 favorite]

If you're not comfortable with a public Facebook post, consider messaging just those people who you think may want or need to know. My best friend found out a fortnight ago that her father has advanced liver cancer, and the prognosis was that he maybe had a month left. The family didn't want him to be the topic of every street-corner conversation - the joys of living in a small country town - but my friend wanted us to know. So she FB-messaged a small group of friends and privately told us the bad news. I appreciated that. Although I'm not close to her dad, I love her dearly and it has given me the opportunity to quietly offer support to try to help her through an awful time.
posted by malibustacey9999 at 11:28 AM on July 11, 2015 [1 favorite]

I am so very sorry. We recently lost a friend after a similar, and sudden diagnosis. Facebook was the primary source for information and some of his friends created a group where updates and pictures could be posted, and there was a bit of organizing to make sure both that he always had someone with him, and that his family (who were all from out of town) had assistance and food and beds to sleep in (in fact, we put his mom and niece up for a night when their AirBNB flaked).

If you're not comfortable posting about it on Facebook you can contact a friend of yours or his and let the word get out that way.
posted by fedward at 11:49 AM on July 11, 2015

Tell your and/or your spouse's friends what is going on, in whatever way works best for you (directly, or via general email / group text / social media announcement, or through another trusted person), because helping a dying person is incredibly challenging and exhausting work and you can use any useful help on offer. Generally in situations like these, friends, family members, even sometimes coworkers or neighbors will at least bring over some food or something so you don't have to cook your own dinner every night. Keep in mind that YOUR friends will almost certainly want to help you through this difficult time, even if they did not know your spouse very well. And you deserve and need that help if you can get it. It's totally fine also for you to set firm boundaries with people in when it comes to visits etc., so that your emotional battery does not get too drained by being around too many people at once. Maybe you could talk to one of your friends who knows you well enough to understand your introvert ways and ask that person to run interference for you with people who get a little too eager.

I am very sorry that this happened to you and your spouse, and I hope that your spouse's final days will be as peaceful and pain-free as possible.
posted by BlueJae at 2:58 PM on July 11, 2015

A former very close friend from high school (25+ years ago) recently died under similar circumstances. Had I known he was sick, I would have immediately gone to see him. Please reach out to people whom you think might want to know, and take good care of yourself through all this.
posted by disconnect at 7:46 PM on July 11, 2015

I'm very sorry to hear about your situation. Tell any of your spouse's friends that you don't want to lose completely from your life after your spouse is gone. They will hold it against you if they were not informed. Sadly, I'm speaking from personal experience on this.
posted by cleroy at 4:29 PM on July 12, 2015

Response by poster: Thank you everyone, your ideas were all helpful.

Unfortunately, he died later that day, we were totally not expecting that, we all thought we'd have more time with him. But I did end up posting on facebook, under his account, so that the people I wasn't able to email or call directly would know.
I would mark all of your answers as most helpful. Thank you!
posted by mismatchedsock at 6:08 PM on July 13, 2015 [1 favorite]

Oh mismatchedsock, I am so very, very sorry to read this. So very sorry. I hope you have a loving network of people to support you through the grief and shock. My very real condolences and entirely useless good thoughts are with you.
posted by DarlingBri at 3:51 AM on July 14, 2015

I'm so, so sorry, mismatchedsock. My thoughts and are with you, too, and I wish you all strength and comfort and love to surround you now and always.
posted by taz at 4:06 AM on July 14, 2015

I'm so sorry to hear your update. Sending you good wishes.
posted by LobsterMitten at 2:07 PM on July 14, 2015

I'm so sorry for your loss, mismatched sock. Take care of yourself, ok?
posted by malibustacey9999 at 6:49 AM on July 15, 2015

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