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I’d like to leave this here as questions hasn’t yet fixed their phpbb glitch that made replies usernames invisible.


My dad, 90, was diagnosed with CKD, sage 4, moderate dementia and Parkinson’s around July 4. That was our last family dinner that he walked down the stairs to his upstairs suite and back up. On July 25, my mother found him sitting on the floor delirious.


He’s on home hospice, Foley catheterized. He barely eats, but as MidKid noted, her MIL does the same and has survived for months. My dad’s vitals are excellent and my sister the doc anticipates he will die more like weeks or months.


Well, mom (87, no dementia, clearer than I am) didn’t sleep for three days because my dad would yell for her every 15 minutes. My doc sister put her on Restoril to make her sleep after that and stayed over to administer the Haldol, Ativan and morphine. Seroquel later. None of which helped his calling out every 15 minutes for my mom, so the three of us girls have been going back and forth with nights, always sleepless.


He agreed there would be aides, but upon encountering them he started screaming where is my wife, I don’t need you, and I have family.


Community, where have you heard this before? Mom caved and fired them even though he would throw that hissy fit at any aide. Where have you heard that, as well as the tearful pleadings and extractions to never put him in a home.


Ironically, my mom doesn’t want me. She thinks she has to mother me still and am thus a burden. She called my sister to get her to come over so I would go.


I would personally trust a chief of surgery over me, too, but come on. She went straight from a sleepless night of trying to tweak his meds and right into a surgical theater. Would u want to be operated upon by any surgeon under these circumstances?


So, my youngest sis and I are introducing an approach whereas we two appear in tandem to see if mom can start to accept my being there. Frankly, it might get her to go to my sisters down the street to demonstrate that she doesn’t have to personally oversee everything with him. As she has been talking about putting him in a home anyway, it would be advantageous for her to work through her emotions as a trial run by doing this first, right?


Fam, I’m not even pissed off at my mom’s stance. I too would prefer a chief surgeon and a major foundation president over me, myself. That is realistic, but so, too, is the fact that they are both back at these jobs already.


I see my potential role as kind of an extender, maybe even a bridge.


Anyway, sorry for bad writing, just back from a trip with him and still exhausted, but willing to give it another go in a couple days.

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Peggy, I'm so sorry for your troubles.

What does your sister the surgeon know about EOL meds? Isn't that a job for a geriatric psychiatrist? Or at least someone from hospice who has been down this road?

Some people have contrary reaction to Ativan. Get hospice to figure out why the meds aren't calming him.

As for taking shifts to provide hands on care, I wouldn't be doing that. I would be at work.

(((Hugs))))
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PeggySue I can't believe how quickly your dad declined since July 4th mentally.

There's a reason doctors don't operate on family members.

Your sister needs to take a step back (easier said then done, right) and not be the one taking on all the responsibility of administering medication and soothing mom. She needs to let mom know she has 2 other daughters who are able to help and she needs to let them.

Its so weird how most times these declines and end of life scenarios seem to play out the same way. Hopefully no one is promising dad no nursing home and you all can convince mom to keep the aides for help with dad.

His vitals are good so this can go on for months and months (like MidKids MIL). Which is why mom and kids all need to be in the same page about dads care. It's not what he wants but what he needs.

What does hospice say about these outbursts every 15 minutes? He may need medication to manage this new development.

Or maybe the medications he is on are causing the mental decline and outbursts.

Very sad and I would rather your dad go sooner rather than have to be excessivally drugged to control his outbursts which i think are going to keep escalating and getting worse. It's very sad to watch someone you love decline like this.
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Just googled haldol and this can increase anxiety which may explain his constant calling out for his wife. Why is he on these medications anyway? Does he really need the haldol, ativan and morphine? How was he before the meds were given to him mentally? Maybe over medication is the issue here.
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After my dad threw his tantrum at the aides, he cried to mom to never put him in a nh. Yeah, she sorta agreed at the time. If we want to accomplish you two being together thru the time he has left, it’s gonna go far easier with me than with having to deal again with him not wanting a stranger or moving to a strange place.
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Mom has to establish ground rules like aides are required. Otherwise the stress may give mom a heart attack. Look into those medications to see if they are doing more harm than good. Was he having outbursts before the meds?
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Sp, it’s like he became a different person on July 25th.

I don’t get why Haldol is a first line medication when you have Seroquel. It was only tried for a day before the switch To the latter, which did not work either. Neither did the Ativan. Neither apparently did upping the morphine dose that surgeon sister did yesterday.

My dad needed none of these before July 25, but he became this new person when my mom found him collapsed.
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Is your sister making these medication decisions or another doctor? I would be concerned about what she is prescribing. Especially since she gave restorial to your mother.

Plus the morphine can also cause anxiety too.

Ttruthfully I don't think your sister should be in charge of deciding what medications mom and dad should be taking.

Was dad on other medications before he collapsed?
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Haldol and morphine used together is a bad combination. Google it.
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I am sorry your Dad is in such decline. This must be a huge stress on all of you.

Dad is ill. Very ill. Very ill people have a mixture of nurses, aides & family to attend their daily needs - at home, hospital or maybe specialised hospice ward.

Dad cannot insist on only Mom as his caregiver 24/7. He will need to make compromises & let go some control. So will Mom.
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MD, He has been on a slow decline for years as his CKD progressed to s4. He had withered to about 130 pounds. By April, he started wearing depends in case of an accident and by May was put on palliative care with an md coming to the home. However, he still lived happily upstairs watching tv mostly by himself and calling mom on his iPhone when he needed say a Big Mac or a bathroom cleanup.

Foundation sister got him off the floor with mom on the 25th by getting him to stand against his Walker, then escorting him to bed. Foundation sis called Surgeon sis and Surgeon sis consulted with the palliative care doc who also said hospice was appropriate.

Hospice put on a condom catheter as my dad was always saying he was wet. He understood that he needed to pee in it, but then came three days of diarrhea followed by his not being able to pee at all. His bladder became distended so the hospice nurse tried to put in a Foley, a task finally finished by surgeon sis.

I had figured that uti had been eliminated with the number of med professionals involved but after reading ur input I sent a text to Foundation sis. Why not just have him on preventive antibiotics if he’s not already. It can’t possibly hurt.

He just died.
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He just died???!!

My deepest condolences.
(((((((HUG))))))))

Maybe UTI, followed by sepsis? Untreated big UTI leads to sepsis, and you can die within hours. Not being able to pee can quickly lead to UTI, sepsis. Delirious, diarrhea, organs shutting down.
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You must be in shock, dear PeggySue.

(((((((HUG))))))))
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I'm so sorry, Peggy Sue.
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Very sorry for your loss!
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Peggy I am sorry your dad passed away.
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I'm sorry/not sorry your dad passed.

So few of us seem to get the quiet beautiful death that we hope for--it's often unpleasant and fraught with drama.

You did your best. Dad wasn't going to be happy and believe me, he would have taken you all down with him. We're doing this exact same thing with my MIL.

((Hugs))
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Mid, He slept through his last night for the first time with Foundation Sister there until 7 am, after which my mom took over. He did not ever wake up again. My mom said his death was very peaceful, the way he wanted it.

So yes, as hard as it is, it gets harder to see them Linger the longer that they go on.
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Peggy, I am so sorry for your loss.

May The Lord give you grieving mercies, strength and comfort during this new season.
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Thanks, is this really real. It really is, now.

When we were saying our goodbyes to him as a family after his passing, I was the only one who mentioned the afterlife. My whole family is not religious including him, so I prefaced by being sorry about religion but I have faith we will see each other again. I said, goodbye daddy, I will see you in 25 to 30 years.
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Md, it turned out my dad had been tested for uti. That wasn’t it. He just terminally deteriorated at a rate more rapid than Surgeon Sis or hospice itself could have predicted.

As for your phpbb question. Phpbb is the underlying software powering most standalone message boards. The basic code is free, but customization is expensive with every passing year.

Midkid, for sure that’s the way he wanted it to go, and I feel u about the limbo you are experiencing with mil. My dad never got mean, unlike your mil. It is mercy after all.

My personal faith view (I’m nominally grounded in Christianity) is that God is sorta like Nature, something to be aligned with but not like calling a personal friend I can relate to. Idk
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Thanks so much md. You are right in that the shock is coming from this happening earlier than expected, and thank you for praying for me.
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((((HUG))))
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Hey md, your words have been invaluable today, including your encouraging words about tech!

As far as phpbb on ac goes, I would bet they’re running base code 15 to 20 years old and built upon it.Every year there are more immediate problems that take more attention.
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Another hug Peggy-Sue!!! I can’t imagine the shock you’re in.

((((HUG))))
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Peggy,

There are no words that are adequate for times like this. Please know that I am so very sorry for your loss.

Take time to heal and grieve the loss of your father.

All of your lives have been shattered by this experience.
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Peggy, I am so sorry about the loss of your dad. My sincere sympathies to you.

Fawnby
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PeggySue
Just saw your post. So sorry your sweet dad has passed. Big hugs to you.
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Peggy Sue, I am so very sorry to hear of your loss. Thinking of you and your family.
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PeggySue, I don;t know you, but I can see so many people on this forum really care a great deal abut you...and I'm sorry for your loss.
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