Oh goodness. So hospice aide called me. Mom's hands and feet are mottled. And I know what that means. I also know it can fluctuate.
She may be having a rally. Actually got out of bed, with great assistance and sat in chair. Spoon fed and ate 50 percent of meal.
Hospice also put her on scopolomine to increase secretions, in this case, swallowing.
Her vital signs do not yet show active phase of dying. I am sorry if this graphic description upsets anyone, but in my view, it helps with expectations. So take in that vein.
We could not be more pleased with our hospice choice. They are so caring and so tender with our mom. And we are thankful.
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.
Your post so poignant. Thank you. More than you know.
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.
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.
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!
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.
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..
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))))))
But the addiction thing! Goodness, we are way past that!
So folks of my generation and older have certainly heard THIS in addition to all the anti opioid stuff out there right now.
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.
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!
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.
So the change is every 4 hours and prn.
Good reminder to stay ahead of pain. Thanks all.
Try to Stay ahead of this. Just a suggestion.
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.
Gosh they are good.
Fot anyone in this stage of things, I feel for you. And you have my heart.
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.
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.
Hope you’re hanging in there during this difficult time.