If you can ask for help, do.
December 7, 2023 11:11 AM   Subscribe

Most of us will experience the death of a parent. That experience is unique for everyone, yet there is so much we can learn from each other. Sumana Harihareswara has created an extraordinary collection of resources about Eldercare, Family Caretaking, and End-of-life Logistics: Stuff I Learned. It is full of detailed advice, good sense, and compassion. (created by brainwane, found at MeFi Projects)
posted by kristi (20 comments total) 159 users marked this as a favorite
I was scanning this amazing collection when I saw it on Projects, and I was struck by how many folks I know could use it right now -- which is kind of a bummer.

But then I realized that to have someone going through all that stress and effort and then, instead of Putting It All Behind Them, deciding to turn it into a gift for everyone & anyone... Well, that's pretty excellent!
posted by wenestvedt at 11:18 AM on December 7, 2023 [14 favorites]

Way more than I could dig into in its entirety right now, but very interesting and useful. The spectrum from thriving to crisis was a bit distressing, as apparently I'm somewhere between surviving and struggling despite the fact that nothing is really going on in my life? Whoops.
posted by We put our faith in Blast Hardcheese at 11:54 AM on December 7, 2023

At first glance, I thought this said “death of a planet” and I was very intrigued. This is also nice, and hopefully more useful for most people.
posted by snofoam at 12:08 PM on December 7, 2023

Thank you so much.
posted by Barbara Spitzer at 12:10 PM on December 7, 2023 [1 favorite]

At first glance, I thought this said “death of a planet” and I was very intrigued.

Planet deaths are very uncommon; the first one was only announced last spring, and the best guess is they happen about once ever 1-10 years in the galaxy.
posted by puffyn at 12:19 PM on December 7, 2023 [1 favorite]

Thank you in advance, because ... it will inevitably be useful.
posted by Dashy at 12:19 PM on December 7, 2023 [3 favorites]

Yeah, I'm not going to go read it now (I have lived it) but am hitting as a favorite for next time, as it were.
posted by jenfullmoon at 12:26 PM on December 7, 2023 [1 favorite]

Great resource. Wasn’t there something similar posted here earlier this year?
posted by gottabefunky at 12:27 PM on December 7, 2023

If you are the spouse or partner of someone who is going through this process, and you are living with the family as it happens, you will need someone or multiple someones who are outside of that family unit to talk to. And it may be very difficult, because the family will likely not want their business discussed with anyone. But you will have your own grief to process which may be difficult or impossible to express to anyone in the family unity because your grief, not being a blood relative, is a Lesser Grief. It is Not About You. And yet process this grief you must, because it is trauma and needs to be dealt with and is not actually Lesser or otherwise meaningless. So find people you can talk to and a discrete place to talk, because if you don't deal with those emotions they will stay inside of you for a long time and cause issues later on.

And family dynamics can radically shift upon the death of a parent in unexpected ways, some good and some hurtful. The shift may or may not be permanent. It is impossible to predict how they will change, but it is good to be prepared for a change of some persuasion, and also to not take these changes personally if you can help it. Grief does strange things to people.
posted by grumpybear69 at 12:27 PM on December 7, 2023 [17 favorites]

I've had this in an open tab for awhile, I think from an AskMe recommendation. I need to read it. I really need to read it, before I absolutely *have* to read it. But it's hard to summon up the will, even with the glowing recommendations.

Which is to say: thanks in advance, brainwane. I'm not looking forward to it, but I'm grateful this exists. And thanks, kristi, for the reminder.
posted by EvaDestruction at 12:40 PM on December 7, 2023 [6 favorites]

Wasn’t there something similar posted here earlier this year?

Similar (My Parents are Dead: What Now?)

This Reddit post, My Parent Needs Oversight, is also helpful.
posted by Sweetie Darling at 12:41 PM on December 7, 2023 [3 favorites]

My father turned 95 last week. He served in the Pacific in the last year of WWII. I called him on his birthday, but he'd gone for a hike. He's gonna just drop dead one day, and I'm really gonna miss him. I just wish he'd stop telling my 15yo that being gay is a phase.
posted by outgrown_hobnail at 12:47 PM on December 7, 2023 [14 favorites]

This is timely, and thanks.
posted by emelenjr at 1:18 PM on December 7, 2023 [1 favorite]

Another thing you need to be prepared for: not knowing exactly why your parent died.

My dad had a colectomy due to diverticulosis. About half a year later, he started to lose weight unexpectedly. He also had a pacemaker and had previously experienced a couple of strokes. As the year wore on he got weaker and sadder. Then, suddenly, he became delirious and was admitted to the hospital for what turned out to be a blood infection caused by fecal bacteria which had invaded the leads of his pacemaker. He had terrible sepsis. After that he was put in outpatient rehab where he contracted RSV and then pneumonia. His pulse ox was down to something like 60% at one point and because he had a DNR they couldn't put him on a ventilator. Somehow he fought his way back from that and I remember him calling me from the hospital and my being amazed that I was even talking to him as I was certain that he was going to die. From that point forward, though, he began to decline rapidly, in large part because he was refusing to eat. I desperately wanted them to do a colonoscopy - I don't think they ever followed up after surgery - because it was highly likely that there was an issue with his surgery causing things like fecal bacteria to get into his bloodstream. But he was too weak and delirious to be cleared for the procedure. The doctor told my stepmom that it was likely colon cancer, but I called shenanigans on that since they had just looked at his colon a year ago in great detail, and they were unable to do a biopsy to prove it. Eventually he passed peacefully in his sleep, likely from starvation.

I made the conscious decision to accept that I would just never know, and to not be mad about it. There is no point.
posted by grumpybear69 at 1:21 PM on December 7, 2023 [10 favorites]

Another thing you need to be prepared for: not knowing exactly why your parent died.

Or the variation - knowing why your parent died while also knowing that there was nothing that could be done to save them.

The cause of my mom’s death was a ruptured aneurism in her abdominal aortic artery. She had seen a doctor several days before her death and was misdiagnosed.

Except that even if she had been diagnosed properly, there was nothing that could do to save her. She was too fragile for surgery. She would have died, no matter what.

Reconciling that was difficult.
posted by theBigRedKittyPurrs at 4:13 PM on December 7, 2023 [6 favorites]

“Another thing you need to be prepared for: not knowing exactly why your parent died.”

My father died in 2008 in the hospital, three days after surgery removing a pancreatic growth. Sometime between 6:00 and 6:15 in the evening (he'd called my aunt at 6 to ask which channel a basketball hane was on), he suddenly had massive internal bleeding and a nurse found him deceased on the floor of his hospital room, blood he'd vomited everywhere. It sounds like a horrible way to die.

The doctors and hospital never told us what happened.

We would have had to request an autopsy, and my sister wasn't comfortable with that, so we didn't. I was content to do as she preferred.

Also, he and I had been very badly estranged for about a year, with him actually having assaulted me in an argument. It sucks that he died before we could ever reconcile, but I avoid thinking about that too much.

He'd no preparations whatsoever for death and both my sister and I were broke at the time. Dealing with all the arrangements with no money (and no legal access to his, yet) was one of the worst parts of it. And my sister and I disagreed about something, amd that turned into a major argument. It's a shitty time for everyone.

Now, I'm living with my mother who is in early Alzheimer's. This is extremely difficult and traumatic for both of us and although now we're in Albuquerque where her two sisters are, they're not much help with this stuff. And my sister is in another state with her own family — she's been very supportive of and understanding with me about this, and I appreciate it, but it's not like that really helps make any of this here less difficult. I feel like it's just me dealing with this with Mom, and will only be me till the end, and I am barely functional myself. It's kind of hard to overstate how alone and despairing I feel about this. I thought I might have been prepared for memory problems, but I definitely wasn't prepared for the mood swings, the blaming me when she's forgotten something, the subsequent arguments, her being kind of mean in a way I've never seen before. All that — and given my history with my abusive dad (and hers with him from before they divorced) mean that we're triggering each other and that really sucks.
posted by Ivan Fyodorovich at 10:59 PM on December 7, 2023 [8 favorites]

My mom has basically been in the hospital for the last month, except for a few days at home after being released prematurely the day after Thanksgiving. We've reached the stage where the hospital is basically ready to release her again, and according to them none of the care she currently needs requires a hospital setting. (I asked that question of the nurse on duty last night after reading one of the links in the FPP that said it was a smart question to ask in order to get a clearer prognosis.)
posted by emelenjr at 6:29 AM on December 8, 2023 [1 favorite]

(Ivan Fyodorovich, if your mother and her doctors are willing to explore it, we have been seeing a lot of success with antidepressant treatment for my relative with dementia-related mood swings. It hasn't helped with the memory aspects obviously but he is visibly less anxious, and it seems that much of the anger came essentially from anxiety/depression that he couldn't quite express. Which in hindsight seems really obvious but we just didn't make the connection.)
posted by We put our faith in Blast Hardcheese at 9:24 AM on December 8, 2023 [2 favorites]

My mother, a relatively young 71, had a serious heart attack with zero warning eleven days ago. She went from fine and celebrating my dad's birthday to coding three times in hospital within six hours. Luckily, she had gone to the hospital and was surrounded by medical professionals when she flatlined the first time, and she is home post-stent and doing relatively well, all things considered.

I'm aware that I'm pushing 40, but this is the first time I've ever really had to seriously confront my parents' mortality; as a Type 1 diabetic, I'm used to confronting my own, but not theirs. It certainly doesn't help with the helpless feeling that my parents decided to wait until I was finished teaching my Monday courses before calling me, 13 hours after it happened.

In any case, these resources feel both way too early and incredibly timely, and I'm bookmarking them so I feel a little less scared going forward. Thank you.
posted by ilana at 3:32 PM on December 8, 2023 [4 favorites]

The doctors and hospital never told us what happened.

We would have had to request an autopsy, and my sister wasn't comfortable with that, so we didn't. I was content to do as she preferred.

Autopsies are not necessarily that helpful.

My older brother died in Feb 2021. It was 2 weeks after he had recovered from an "illness" (probably covid). He was found unconscious and bloody in a park late at night. Taken to hospital by ambulance. He regained consciousness and called my mom to look after his cat the next morning while he was being treated for shoulder injuries and a broken arm. They moved him out of the ER and during that night he was found unconscious on the floor of his room. They moved him back into bed and then he became incoherent and had a heart attack and they couldn't resuscitate him.

The autopsy showed he had atherosclerosis. But he also substantial physical injuries. Some from his original fall, some from the fall from the bed, some from the resuscitation attempts. He had a whole whack of painkillers some of which increased the likelihood of heart attack as well as concealing the warning symptoms.

So what killed him? Covid? Whatever caused him to fall? Blocked Arteries? A failure of patient supervision at the hospital? His medications? Everything all together?

The autopsy report said atherosclerosis when we got it about 6 months later. The autopsy was only performed because the hospital wanted to know what killed him so they could evaluate their procedures (and possibly exonerate themselves). My parents didn't particularly want to know because they were busy doing their own dying and descent into senality at the time and his sudden death pushed them over the edge. I only learned about the unconscious and bloody portion of the story much later from my younger brother who actually called and spoke to the paramedics who said he was really fucked up when they arrived at the scene. As far I knew he had just fallen and broken his arm/shoulder. I didn't know he was found by passers-by who called 911. I only learned that he had likely had covid from my mom when she offhand mentioned that he had been sick just a few weeks before with a cold.

The levels of uncertainty and information loss is pretty hard to deal with psychologically but I think it is actually pretty typical and in my case it was for a sudden surprise death of a 56 year old. Not the death of an elderly parent with a DNR.
posted by srboisvert at 3:48 AM on December 14, 2023 [1 favorite]

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