End of life...

Thanks for the updates Seg. I would be annoyed at your sibling for putting on a show too. What nerve!
sounds like you are working with an excellent hospice provider! The one we had for my MIL was good but definitely not that responsive. Sounds like you have everything under control.

is there is a stigma amongst people between the ages of 65-90 when it comes to opioids? My husband seems to think there is. He thinks they are all afraid to take them. My MIL, as I have said before, had pulmonary fibrosis. Now surprisingly she didn’t experience any pain at the end of the life, breathing was the main issue and she had morphine and Ativan to help keep her comfortable. But she was afraid to take them! My husband thought it was because of the stigma amongst her generation. My MILs partner was very much anti-hospice and believed the meds were there to kill her, I think he has a lot to do with her hesitancy to use her comfort pack He flat out refused to give the meds to her and I don’t doubt for one second that he said things to her that made her afraid to take them. He wouldn’t even give her a nebulizer treatment because hospice had provided it! My SIL was eventually able to get her to start taking the Ativan infrequently. Usually only when one of us was there and encouraged her to take it when she was having trouble catching her breath. The morphine wasn’t touched until 4 days before she died and only because she had declined that weekend and could no longer speak for herself & my husband as medical POA had to step up and act on her behalf so that Monday she started morphine 3x a day. He had to go the house and talk to both her & her partner, basically have a come to Jesus talk. Only reason her partner complied is because the alternative was for her children and/or their spouses to take turns staying over in shifts to give her the morphine and he didn’t want us there. By Thursday night she was getting morphine on the hour and by Friday morning she was gone. Needless to say, she suffered a lot because she wouldn’t take her meds! And her damn partner didn’t help the situation. Every time we went over there, he went on and on about what a rough night she had because she couldn’t breath and she was waking up in a panic! Every time I asked him “did you give her the Ativan” and he said “no. I just sat there and held her hand”. He wouldn’t even OFFER IT TO HER. I know that no one can be forced to give someone medication but the real issue here is, his beliefs about hospice and his decision that she wouldn’t take the meds because he didn’t want her to. He wouldn’t even offer her the Ativan or encourage her to take it. that said....a close friends 80 year mother recently had a bad case of shingles and was prescribed an opioid for the pain and she was afraid to take it too. She went so far as to go to the dispensary to buy expensive CBD cream. Which didn’t work—apparently it takes about 4 weeks to get enough of it in your system to work. So that furthered my husband’s believe about the stigma.

Anyway. Your compromise was the right thing to too. Hang in there!

If you are interested in the clinical aspects of the Kennedy Terminal Ulcer, it has its own website.

There is a medical phenom associated with it called the 3:30 syndrome. So .

http://kennedyterminalulcer.com/

Eta. I arranged for hospice to have a minister visit her today. I asked. They show up in a suit.

Back in the day ( I'm 65, talking about the 1960s and 70s) docs would refuse morphine and other opioids to dying patients saying "you dont want to get addicted". Really.

So folks of my generation and older have certainly heard THIS in addition to all the anti opioid stuff out there right now.

I think there could well be a stigma against their use in this population. They survived the depression. Pretty stoic folks.

But the addiction thing! Goodness, we are way past that!

So Sego, another thought (you need distraction, yes?)
Is your mom Catholic? I recall being taught as a Catholic, back in the day, that suffering here on earth lessened the suffering that would be endured in Purgatory. Do not discount the stuff that your dear mom was imbued with as a child. I((((huugs))))))

@barb lol.,yeah distraction good. No, she is methodist and quite a biblical scholar. I held off on ministerial stuff because I did not want to frighten her with peeps showing up in robes and collars.

I Did have many relatives who were Roman Catholic. I recall going to mass with mandatory mantilla, and when mass delivered in Latin. When priest did not face congregants. I can,by memory, still recite it, Bless us oh Lord for these thy gifts..

((((hugs))))) sego. This is a difficult time for all. You are doing the right thing.

Ok I am going to ask it. I might be banned for it. Beyond caring at this point if so.

So pro life peeps, where are you with the Kennedy terminal ulcer?

Eta. I ask because pro life groups are quite often this very group which opposes any death with dignity legislation. Do you think prayers combat science here. That skin is an organ and will fail due to the death process? Will you impose this very painful graphic death? This thread does not seem to be visible on main forum. That's good.,it's very depressing but it is VERY REAL
So lets have it.

Great question for the prolifers seg. I hope someone answers you. How can they choose pain and suffering?

thanks for the insight seg & barb. Makes sense. Addiction is why our friends mother wouldn’t take the opioids for her shingles. My MIL, she was afraid the meds would kill her. She knew she was dying but by gosh she held on until the end.

what doesn’t make sense is doctors not prescribing opioids to dying patients out of fear they would get addicted! Makes no sense to me, if someone is dying then there is no time to get addicted! but at least today, doctors have more sense than that!

Keeping talking to us Seg, no matter how dark your thoughts are right now. we’ll distract you. And support you. Sending you a big hug!

@ worriedincali
I doubt I will get responses to,my primary question. Because no,one wants to,think about from other angles. And you know why. Because of convenience.

My. thoughts aren't dark. They are realistic though. And I am expressing what many won't. For every 10 who,post there are 20 who lurk.

I have had several family members fly in today to bid farewell. This is awful you guys. Just awful.

@worriedincali I tried to send you p.m. to thank you. Apparently I no,longer have that ability. Thank you so much.just for being you.

My Mom, on Hospice for end of life care X 5 months (Uterine cancer/severe metastasis to pelvic bones and other organs), in severe pain and on an incredibly high dose of IV narcotics and in the final 8 days was inpatient in a Hospice Hospital, in the final 2 weeks of her life, our Mom did develop a sudden onset Sacral Ulcer, and it was awful.

My siblings and I, along with the wonderful Nursing staff did everything we could to prevent this from happening, but the Sacral Ulcer developed anyways (I had never heard of the Kenedy terminal ulcer before this). I know that she was turned every 2 hours, and we felt the horrible guilt that went along with it, feeling like we were somehow responsible for its development, but later understanding that that was not the case. Our Mom was actively dying, her organs were shutting down, and any perfusion or blood supply was going to those organs in attempts at keeping her alive. I do remember that we did everything to treat the ulcer, everything but antibiotics, as she was imminently terminal, so it was just comfort care at that point. Sadly we lost her, but it was her time, her suffering was thankfully over and we as a family were thankful for this.

I am sorry you are going through this right now, the end of life journey is a sad one for everyone concerned. I pray your Mom's journey is nearing its end, and that she will be released from any pain she may be experiencing, and that your family will be able to come together to know it is for the best, her comfort is what should be of concern right now, and let nature take its course. We cannot keep them forever, but your being there for her during this time is the kindest thing you can do for her. I will keep you both in my prayers.

@staceyb

Your post so poignant. Thank you. More than you know.

I think I am on my way out here.,I want to thank all of you for your kindness, knowledge, support, humor. You have helped me so very much.

It is apparently ok to pimp out A PLACE FOR MOM. But not question prolifers and a kennedy terminal ulcer, which many of us will deal with.

Ok. This is your sandbox. But if that is the case, IF, your cred is damaged. I have referred prob 50 peeps here.

Segoline, my messages are back on, message me anytime! I had turned them off the other day because I said something someone didn’t like and they decided to attack me privately.

Thank you for sharing that Stacey. Very poignant like seg said. I wish I had known what I know now-that these terminal ulcers are not preventable. I still feel guilt over my MILs. I thought we failed her & her partner. First I blamed her partner, assumed he wasn’t turning & moving her, that he was keeping her in the same position 24/7. Then I blamed us all for not helping enough, for not helping him. At the time none of us were aware just how much care she required and how much he was doing for her. Truth is, he really didn’t want our hands on help & we respected that but I will always feel guilty for not being more persistent & going over there more during the day to give him respite. She still would have gotten that damn ulcer and she still would have left us but......I just wish I knew then, what I know now. I would have approached things differently.

Sorry to hijack your post Seg. I hope my comments about your “dark thoughts” didn’t offend you, I am truly sorry if I did. I don’t think your thoughts are dark at all, poor choice of words! Just meant talking about end of life may be a dark subject and bring upon thoughts that some might consider dark. I don’t think it’s a dark subject or thoughts of it are dark, it is all part of life.

I wish I could say my experience when my mom died was peaceful. Mind you, we didn't use hospice. My mom was in palliative care at the hospital.

The staff there were very poor communicators. Depending on who was on shift I'd get differing information. I found myself very angry on top of the grief I was feeling. If moving her had been less invasive to her well being I would have done it in a heartbeat.

I was not with her when she passed even though that had been my plan. The one day I left early was the day she chose to leave. That happens often, so I've been told.

What got me was how ignorant the nurses were. I was at the nurses station discussing removal of mom's body to the morgue when a nurse came running over saying "is she not breathing?" Like I said, no communication there.

I found myself having to explain things to the nurses that they should have been explaining to me. Anyway, I pray that all of you have peaceful experiences when you lose your loved ones.

All the best to you Segoline.

@ @worriedincali

You are good baybee. More than good. Dark thought stuff, no biggie. I am ok. Really I am. I am glad I can override my sister. The relatives who have flown in are good with. I don't make my sister out to be a villain. But we have all had crash course in a kennedy terminal ulcer.

@Gershun, aw it's ok. We have dealt with communication issues too. Don't beat yourself up over it. I know easy for me to say., I know that. And remind me of those words later.

It is so nice to hear from you. Are you ok?

So i have spent an enormous amount of time reading about it, smell.

Out of five peeps,I was only one who could smell a smell with my mom. So I read a buncha stuff today. You are at risk for depression. Yah, since I was 12. Thank you author.

You might have schizophrenia if you are only one who can smell something. Intellectually i know this is not true. I do have and always have had, a heightened sense of smell. It was one of main factors in determining a placement for our mom. I've always had this.

Does anyone else have this?

Seg, answering your prolife question. My son is a scholar and joined the Catholic Church because he felt they had the most thought out theology. When I put mother on hospice, I asked him to find out the official stance - I really did not want to have to argue with him about it later. He found in dusty, dry books that they believe there is a time when there is no turning back from death, and to be merciful to that person is a positive (relieving their pain, not killing them); that if you were trying to relieve pain and the side effect is a shorter lifespan, that was an unfortunate side effect of the mercy shown but ok. The point is that causing death cannot be the reason to give a drug.

Seg, about the smells. It's not just in schizophrenia. I work with (and have myself) a large number of brilliant kids- not just smart, but the gifted among the gifted. Hypersensitivity is one of the behaviors that is common. For example, we hear lights and electric sockets. Some see numbers as colors. Lots can't stand certain textures of clothing, and hating neck labels has to be widespread!

I have the super sensitive sniffer too. Smells trigger my asthma so I am very quick to remove myself from a slight odor. Perfumes, flowers, some magazines all set me off with migraines depending on the intensity of the smell. All the while my husband sniffs the air and smells nothing! It's amazing to find someone else with this in common. We too sniffed mthr's memory care before she moved in, and we declined the plug in for her room.

@surprise

Oh my gosh thank you. I was in the gifted but weird class. Your post has made me feel so much better. If possible, lol.
It's actually a curse in many ways.numbers as colors,yes. Feelings as colors,yes.

Thank you so much.

@ surprise I have worn same perfume for 3 decades. Clinique aromatique elixir.,I have had attorneys I work with, ask, what is is your perfume? Told them. They bought. Come back and say it doesn't smell like this on,my wife.

*stuffs pheromones in couch.

I have a heightened sense of smell as well. In fact had to leave the hospital room many times when I was visiting mom cause I felt nauseated (because of the smells)

My brother is in hospital now and I have to hold my hand over my mouth and nose while I'm there.

Segoline, thx for asking. My mom died four years ago May 9th. I'm okay although I was taking an antidepressant the last four years and am now weaning myself off of it. A lot of feelings that I repressed are rearing their ugly heads. At the time I thought taking an SSRI was a good idea and would help with the grief. Now I'm second guessing that whole idea cause I wake up every morning now feeling really depressed and grieving my mom like it just happened yesterday. I think I should have just let myself feel the feelings while it was happening. Ah well, too late now.

Gershun. I hope to reply to you privately.

Tell you something. My bloodhound sniffer has come in handy. About 8 years ago at My mom's house, I kept smelling gas. I checked her stuff. Had gas company check. No one but me could smell. I kept calling because i kept smelling. Holy cow. Whole hood cordoned off, fire trucks everywhere. There was a gas leak.
So being nutty sniffer has its points.

More smell fun. Each time my mom about to go off, I would smell burning tires. No one. No one else could smell but me. It heralded nutso.

I don't know about you guys, but I think the smell detour is good, really.

Its good to have a distraction from heavy events that progress slowly.

Mthr was a hoarder and I can't stand the smell of stuffy, book fungus infested papers. If I receive one, I have to make a copy and put the original in a ziplock bag before trashing it. It triggers those emotions as well.

You might want to get a stinky candle in a smell you don't like to put at your mother's bedside. Perhaps you can avoid the emotional attachment to the smells of hospice and death by connecting the candle with it instead.