I’m also seeing that situation a little clearer now. And sorry I didn’t earlier!
It’s the idea that these totally non-family, non-longevity (girlfriend , not even fiancée!) we’re going to be there for a very personal, important decision but you weren’t. And maybe that it might have been ok for your H to say, I don’t want to overwhelm Mom but @deb922 is family of DECADES and I would like her to be there - so someone else should stay home!
I can see how that would be hurtful. 
Thanks, that’s exactly how I felt. My kids were aghast. They couldn’t understand why the girlfriend didn’t excuse herself. The neighbor did excuse herself in the end since my H was going to be there.
In a sense it’s been very freeing to me. When they call, I make myself scarce. When my husband goes to his mom’s to help with her to do list, I stay home. I no longer feel that need to be as helpful as I’ve been in the past. People pleaser that I am.
This discussion is extremely helpful to me right now. I would like to add one more point about navigating elder care. There is a narrative. If that narrative is being driven by one party to the elder care discussion, it is important for all parties to determine whether that narrative is true or false. I have started to sniff a narrative that may or may not be true. The narrative is getting repeated to many unrelated parties to build consensus. Note my passive voice here, no pointing fingers. But I want no part repeating what I consider to be a false narrative. Breathe, breathe, breathe.
This is absolutely something that I have experienced.
A narrative that is beneficial to one party. A narrative that dismisses concerns. Two completely different scenarios. Things said to gain control over a situation
And that’s not counting the senior whose care you are trying to navigate. Their perception isn’t accurate either.
Thanks for the validation. Your description is on the nose.
@BerneseMtnMom -good point. Another sibling and I were given a narrative by the local sibling ( who told everyone else the same). Parts were very questionable but it made him look like a saint and us look bad.
I recognize that it is hard for the local, but when the others are very willing to help ( and have very real , specific offers of things they can do ) and the local refuses to even discuss any of those, what do you do? When people hear that you and your sibling rarely visit, etc. ( not true)
The saddest thing in our situation was that my mother had 3 children who loved her, lived in a wonderful AL and had plenty of financial resources but could have and should have had more. But some of us were not allowed to help.
It’s especially difficult for me because my own family was amazing & worked together so well for our parents (and for my brother, when he needed us). My brother’s wife can be interesting, but she was awesome throughout everything (illnesses and the after-death stuff). I have only good memories of how we all came together for our common causes.
My H has one sister. She’s the local one. Her H is controlling, and she’s good with that. Unfortunately, what he wants isn’t always what H (or his sister, TBH) thinks is best. When my FIL was ill and died, we actually all worked together well. However, BIL’s mom died a couple years after FIL, and his brother did all of the work with her (they are both local, but the brother was her caregiver & got paid from a LTC policy, so BIL let him do everything). I think he feels kind of guilty, and so he’s committed to being the one to help with MIL. The problem is that what she actually needs is not what he is interested in doing. It’s frustrating, but it is what it is.
DHS family phone call about MIL apparently went well. That’s all I was told and that’s all I need to know.
I have been following along with some these challenges in this thread because I surprisingly (to me) found myself suddenly dealing with this.
I don’t know why I was surprised, parents are 83, 81 and in-laws 81 and 80. My father, the 83 year old, has advanced Parkinson’s (diagnosed 25 years ago!) but has one of the strongest wills to live I have ever seen. Each new illness, additional symptom, other complication, he just fights and fights back. This is how it has been for years. He is in a wheel chair and occasionally gets confused, but is still very engaged and involved. My mom, 81, looked like she was in her in 60s. Her mom lived to 99, her grandmother born in the late 1800s, lived well into her 90s, unusual for that time! She has spent her life (willingly it seemed) taking care of my father.
In-laws both in excellent health, live in a hillside house that basically has six stories from basement to top attic. Crazy house they bought in their 70s, over our objections. Father in law started getting very weak last year, fell twice, hired a personal trainer, changed some things and now looks like he is in his early 70s again. Un-retired and went back to work even.
So, I figured, hey 80 must be the new 70, so I have another decade before I worry about this, enough to get niece, nephew (one of my siblings died many years ago and I have been very involved with their education since) and my kids off to college and launched. Of course, the universe has a cruel trick to play on that thinking.
Two months ago, everything went upside down. My mom, healthiest of the four, took care of herself the most and most strictly, was diagnosed with a meningioma. (I am struck by some parallels with the other thread above on this!) She had been having debilitating vertigo and headaches and it took a few months to sort through other possible causes. She scheduled the surgery at a nationally academic medical center. The surgery itself was very long, 12 hours. But according to the neurosurgeon a complete success. It has been her breathing, more specifically her cough and gag reflex, that has been the problem. It is weak. Not from anything related to the brain surgery exactly. The cranial nerves look fine. But she is now on a trach, and while she can breathe fine on her own, the doctors were worried she didn’t have a strong enough reflex to clear her secretions. She has been transferred to Long Term Acute Care Rehab, which she did not want, and not regular Rehab, which she really wanted. She is on oxygen, and also a feeding tube.
But the worst thing here is that on day 3 or 4 post surgery (so for almost two weeks), she has written on her dry erase board (she can’t talk with the trach yet) that she wants to die. This makes no sense, of course, because she could have opted to die without the surgery. The tumor had blocked the spinal fluid already so she was pretty ill right before, and could have opted for hospice. But she did not. She wanted to keep living. So, it has to be the brain surgery messing with her brain and her mood. Unfortunately one of my siblings just is pushing now to let her die. Claims mom said she never wanted to live like this. OK, but she isn’t living like this, it’s temporary. Why are we looking for a permanent solution to a temporary problem? It’s a real struggle. My dad and my nephew (her grandson) are visiting daily so have gotten caught up in the drama of it all, they want her to live. And my poor dad, who is the one that always had someone taking care of him, is now trying to deal with this complete upside down world. He has a caretaker, thankfully, but still.
But the recovery is really hard, I get that. She has to want to do the exercises, the work, and so far for about a week has refused most of the efforts. But agreed to try for a period of time. Or at least agrees for that day, until she writes again to next person who visits that she thinks she should die. she always trended dramatic, and I am very rational, so I don’t know when I get back to be like: “mom stop being ridiculous.” Or maybe try and remind her why she bothered to have this incredibly risky surgery to begin with?
I was there bedside for the first 10 days but now have to take care of some things before I can get back next week. I plan to spend a month there and see if we can get her focused on positives. My in laws (saying they are speaking from the 80 year old perspective) wonder if my mom was just tired of her life as caretaker and so doesn’t want to fight to return to that life. I would think we can try and tell her that the world is her oyster once she recovers. She can have any kind of life she wants, we will make it happen (well two of us, the third sibling I hate to say it I think is fine with her dying. And that sibling seemed closer to her than the rest of us). So tough. I hate to say it but it would have been so much easier if this was happened to the more chronically ill parent. Not the one in perfect health (other than the meningioma!)
That is sometimes the scary thing - how quickly things can change. I’m sure this is a shock to her and to all of you. I hope she can see some progress and see that her quality of life can be better.
Sending big big hugs!
If it were me, I’d make sure that mom really understands that this is temporary and knows the time horizon.
I would have the doctor talk to her, if possible. I am guessing that in her mind, she thought she’d have the surgery & dance off into the rest of her life with no worries. It doesn’t matter that she may have been told that recovery would be difficult … when reality smacks us in the face, it’s not always easy to accept. My friend had to get her sister through some really tough times when her sister was going through chemo for esophageal cancer … her S kept saying she wanted to die, because it was really painful, and she couldn’t see the end in sight at the time. She got through it, thanked my friend for making her stick it out, and lived another three decades.
Your mom is dealing with something she never expected to happen, and she is having difficulty with it. Just keep being there for her, encouraging her to fight because it will pay off in the end. Remind her that the prognosis is excellent … she just has to put in the hard work for a while.
Hugs to you as you navigate this.
I am so sorry to hear of anyone else going through this. It is agonizing. The only advice I can offer is to keep trying to impress upon her that a) it is likely that post-surgical depression is making her feel this way, and b) her prognosis is excellent and she just needs to try. Of course, I offer that advice with the caveat that neither of those things have worked for us with my dad, but it is worth a shot. Are her doctors aware of her mental state? Perhaps a psch eval and antidepressants can make a difference.
Mostly just sending support vibes your way. It is all so hard.
That’s a lot. A whole lot. So sorry for the downward trend… hope things look up soon. Had to go back to reread due to some concerns over your father while mother away. Glad your nephew can help.
OH gosh, it just barrels into a family like a locomotive sometimes. THings we told/tell my dad and mom (Mom is a frequent “I just think I should die” 92.5 yr old)
This is just for now, it’s not forever.
You feel discouragrd, that’s okay.
Nobody here wants you to die, so it’s okay to be unhappy but that’s not dying.
You aren’t dying. You’ve done so manyhard things, you can do this too.
Well, wait. Tomorrow might be a better day.
GIve yourself grace to not “fix” her outbursts. She can be depressed as long as nobody else is convinced dying is the best choice. So you can write underneath her white board “but I love you and we will do this together” or something like that.
(P.s. – upthread I mentioned my Mom told me she lost a toenail? Nope. COmpletely imaginary event, her feet are fine)
Our family has been going through a lot over the past month since our soon-to-be 20 yr old eldest daughter died by suicide while away at college.
Meanwhile, husband’s aunt & uncle (AIL & UIL), along with my self-absorbed 80 yr old father, make things all about them. And I’m really really tired of all of the older relatives in our extended family making things all about them. I don’t have any spoons left right now to handle their demands and their nonsense.
And I kind of need to complain about it…
thankfully, sister-in-law (SIL), my sister, husband & I are all on the same page about how to handle the pushy, demanding elders. The 4 of us are circling our proverbial wagons and backing each other up where necessary. It’s still be extremely frustrating.
Like my dad…
AIL & UIL…
I’m also not playing the elders’ game of funerals/memorial services are “supposed” to operate a certain way. Guess what? This isn’t their funeral, so they don’t get to decide.
I’ve spent almost my whole adult life being accommodating to AIL, UIL, & my dad. Always doing things their way because that was easier than making waves. Not doing that anymore. I’m done.
BIL is worried about AIL & UIL getting older, what will they do when “something happens” and they need to go into an assisted living facility or something like that. Well, guess what? There’s nothing any of us can do about that. None of us are their healthcare or financial power of attorney. We can try to influence their decisions, but they’re stubborn and do things their way and they won’t listen to any of us. They also don’t have children. And to be honest, none of us actually know WHO is their healthcare power of attorney.
Is it our circus? Yes, but not our monkeys.
I’ve got my OWN circus and my own monkeys. There isn’t room for more.
I am SO TIRED of the 3 of them complaining about their problem(s) like it is our job to fix it all for them and make things better. None of them are going to listen to us anyway!
so, for example, let’s take UIL’s current driving skills:
He comes to a FULL STOP ON THE FREEWAY! Is this somebody who should be driving on the freeway? NO.
will he listen to us? NO.
Don’t bother suggesting to me that 1 of us make a report to the DMV. That isn’t going to happen. None of us even have the address of the RV campground that they’ve been living in for 9-10 mo of the year and I don’t even know what his driver’s license # is.
UIL also gets lost/turned around despite using GPS on their phones.
And don’t get me started about how the 2 of them are late to everything.
Like, they’ll be late to their OWN funerals. Heck, they’ll probably be late to my daughter’s funeral at the end of next week. Their problems are not mine to fix. They are not, nor will they ever be, capable of being the types of people we need them to be right now. When they’re coming to visit you? They’re 4-5 hr late every time. I am 100% done with the narcissism. I don’t care anymore why they always do this. I don’t need to know or understand the reasons why. Their lives revolve around themselves and have for a long time. It’s very frustrating.
You have your own issues to deal with right now. When they complain, simply ignore or respond with something like, “That must be frustrating.” Don’t take the bait. Right now, you need to focus on what’s best for you, your H and your D.
The trach itself really messes with emotions. It can be very painful, scary (some just end up fighting continuing panic, some feel like they’re suffocating, you can’t talk). She needs to hear a concrete timeline about getting better.
I’m so sorry! This is the last thing you need right now. I hope you have someone in your circle that can run interference for you at the memorial service.
You and your family continue to be in my prayers.