End of life...

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.

@staceyb

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

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.

@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.

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

@ 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.

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!

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.

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

@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..

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))))))

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!

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.

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.

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!

Oh. My. God.

PRN and my mother.

To the nurses " No, dear, I'm just fine".

Then she would call me or SIL or brother. "I'm writhing in agony!" Or we'd come to visit and she'd be weeping. I'd get the nurse, stay outside and she'd tell the nurse she was FINE!!!!!

In this way, folks who are caregivers to those with dementia are driven, slowly but surely, to insanity.

We made everything by the clock AND PRN. My mother was no longer a reliable reporter of pain.

Segoline - I totally agree. We had no hesitancy about morphine either. If the prescribed amount wasn't keeping her comfortable, we gave her more. She was within days of death, after all. No other consequence was of more importance than keeping her comfortable. Glad you are doing what you can to keep your Mom comfortable at the end. You'll feel better, afterwards, having done that.

I have no hesitancy about morphine. I will talk to them further about its use. Her pain and anxiety meds were prn. That's great if she articulate, not so much if she can't.

So the change is every 4 hours and prn.

Good reminder to stay ahead of pain. Thanks all.

Please don't be afraid of giving your mother as much pain medicine - morphine included - as is prescribed by the doctor, or ask for more if you feel it's not enough to control pain. Pain is easier to prevent than to relieve, and severe pain is difficult to manage. Get ahead of any pain now, and you will be providing her with the comfort care she needs and deserves. Peace, Seg.

Sego, what is your hesitancy about morphine? They are NOT going to give her a fatal dosage. They are going to keep her calm and pain free. (((((Hugs))))))

Please Segoline, consider Barb’s advice regarding Morphine. It’s hard but if you were to list your mother’s most important need now it is for pain relief. If she’s off her psych meds her anxiety may be inching back.
Try to Stay ahead of this. Just a suggestion.

@barb, this is my compromise right now.not to say I won't change it.

I tried to talk to my sibling last week about bed sores in end stage. She said she did not want to know. Today, puts on big show. Because she has an audience of her DIL who is RN and son.

This is what I deal with and have, as DO MANY OTHERS. So while she was napping. I changed some things. And it was for best. For my mom. She called me when she awakened. I did not take the call.

I am good. I did well today.

Yes, Sego; time for morphine, I think. ((((hugs)))))). And more ((((hugs))))))))

And I cannot emphasize enough how responsive this hospice is. Holiday weekend. Call back in 5 minutes. RN call back in 10 mins. Physically going to see our mom, check ulcer, change meds. 1 hour.and callback within same time

Gosh they are good.

Thanks everybody for your kind words. You want to do something immediately. Stop this NOW. Quite often, in life, with many things, the best thing to do is nothing. This is not one of those times. But a compromise was in order. And I think I found it per reply above. Post my conversation with hospice, an RN went to see her. Eyes on. Eyes on ulcer. Meds changed pronto. Not only every 4 hours, but prn on top of. My mom is more lucid since stopping all of these other meds. The psych meds included. The consequence though is she asks what is happening and why. I want her at peace. Like I said, I am good with this today. I might want a different aggressive scenario in a few days.

Fot anyone in this stage of things, I feel for you. And you have my heart.

I'm so sorry you and your Mom are going through this, Segoline. It's very similar to what my mother went through before she died last July. I stayed with my Mother the last few weeks of her life and did everything I could to make her comfortable, and that's all you can do. All any of us can do, sadly. Sending caring thoughts to you and to your Mom.

@worriedincali

Antibiotics would not have helped. Nothing does. So I talked to hospice. My compromise is increasing pain meds to every 4 hours. My sister told me they already were. They weren't. Prn.

So I am good with this today. She is on opioid and valium. She was actually more with it due to being taken off all that other crap, but asked me why is this happening.

Why does my hand stick. My backside hurts so much. Why is that. Well mom, we are going to take care of it.

This is a nightmare.

What is quite disturbing to me is its prognosis and rapidly it has grown. The prognosis is awful. Complete ulcerated and black backside. I dont want this for my mother. No one puts a pet or a frigging farm animal through this. They intervene out of compassion.

I going to think about this for 24 hours and talk to hospice and my sis. I am ready I think for the morphine to start. Think of me what you will.

Thanks for that info segoline. My MIL developed a bed sore in her sacral region 6-ish weeks before she died, sounds like it was a Kennedy terminal ulcer. She didn’t go on antibiotics or anything, she did use a special ointment, and she started receiving baths 3x a week once the sore was discovered. I think prior to that, her home health aid was coming only once a week.

Hope you’re hanging in there during this difficult time.

((((((hugs)))))) segoline. Prayers for peace.