Current Events > My father is transitioning into palliative end of life care...

(+) Yeah! (+)

I closed the previous topic just because were kind of entering another chapter.

Quick recap:

He had cancer from around 2019, or earlier, but Covid shutting down everything he didnt get diagnosed until late 2020/early 2021. He did radiation and chemo treatments. Theres questions as to how well he held his regimen, or completed it. He did not do any follow up appointments.

Thanksgiving father becomes ill, mostly bedridden, and incontinent. Refuses medical help, and ambulance.

Early January he finally asks to go to the VA. He has an infection affecting his gut bacteria and is put on antibiotics.

He starts becoming more lucid.

They do a CT scan on the pelvis where his cancer was. Its still there, has shrunk, but has also moved to the lymph nodes.

The doctors have gotten under my skin with their approach, basically shotgunning information at him prematurely, such as if he would even be amenable to further cancer treatments, only to find out hes not eligible anyway.

So today there was whats called a Cares Conference between three doctors, the head of his care, the head of medicine, and palliative doctor to decide what course we would want to take:

Cancer treatments: chemo and radiation are out of the question in his current state. They would be too hard on him. A third immunotherapy is possible, but its an intravenous diffusion and would require him coming to the clinic. So, difficult and would require him to gain strength to do so. So not an immediate possibility.

Rehabilitation: Move to a facility with the intent to undergo physical therapy, and other regimens to gain strength and ability to move around.

And finally

Nursing care: basically around the clock care, with hospice, to keep him clean, fed, and comfortable.

He doesnt want to do treatment, and even doing so it wouldnt be curative. (I almost said wouldnt necessarily be curative, but the necessarily isnt accurate).

He doesnt have the will, and the doctors pretty much agree in his condition, he might not even be able to benefit from rehabilitation.

So that pretty much transitions to:

End of life/palliative care in a nursing facility.

He has agreed to this so theyre going to get me a list of homes in the area. Because of his current condition it would be paid for by the VA.

The palliative doctor also expressed about the amount of oxycodone hes allowed to have. They gave him 5mg when he got here but he was sleeping most of the time. So they took it back to 2.5mg every 8 hours. We have decided to allow him to have it every 6, and that can be shortened to 4 if hes in constant pain in the future.

The head of medicine also suggested taking him off the antibiotics, but I pushed back on that because its helping him be lucid and will give me time to file some final paperwork, changes to his will, and do some FaceTiming with relatives out of state in the upcoming days.

So thats where we are at...

Now I have to rush to get the affairs in order

I'm sorry to hear about your father. As basic as that sentiment is, it's still true.

I guess it wouldnt possible for you or someone else to administer immunotherapy at home through an IV?

That's rough man.

I'm sorry this is happening, TC. I can't imagine how tough this all is for you and your dad.

Mibahlzitch posted...

I'm sorry to hear about your father. As basic as that sentiment is, it's still true.

Thanks.

mustachedmystic posted...

I guess it wouldnt possible for you or someone else to administer immunotherapy at home through an IV?

I kind of doubt it. Im not really equipped to do that... but regardless of that, coming home isnt viable for other reasons. I cant keep him clean, and hell end up with an infection again in no time.

Master_Bass posted...

I'm sorry this is happening, TC. I can't imagine how tough this all is for you and your dad.

Tougher for him, he has to live through it. Im just over here like... imma do the best I can

Hes saying I should buy him Duck Tales comics for Christmas. >_>

ZangsBeard posted...

Thanks.

I kind of doubt it. Im not really equipped to do that... but regardless of that, coming home isnt viable for other reasons. I cant keep him clean, and hell end up with an infection again in no time.

That sucks, sorry to hear that. If I could gone back to change anything about my mothers last days, I would have made sure she didnt have to die in the hospital.

mustachedmystic posted...

That sucks, sorry to hear that. If I could gone back to change anything about my mothers last days, I would have made sure she didnt have to die in the hospital.

I probably wont feel anything once he finally goes. I dont feel much now. And I didnt feel anything about my mother but annoyance about her passive suicide. But her actual death has never affected me.

Not to dismiss how you feel, at all. Just kind of rambling.

A lot of people wish they had more time, and thats totally understandable.

[LFAQs-redacted-quote]


Ill see what I can find.

Its not about that, my mother was sick for a long time and luckily I was able to stay home and take care of both my parents. I am confident that if I wasnt able to do that, and we had to put them in a home, they both would have died years earlier than they did. What really gets me is the nursing staff gave us the impression that mom was getting better, and would be discharged to rehab soon. Then the doctor informed us that she knew my mom was dying. If there was nothing they could do to help her, why did she have to spend her last hours in a hospital bed? She would have been much more comfortable at home.

mustachedmystic posted...

Its not about that, my mother was sick for a long time and luckily I was able to stay home and take care of both my parents. I am confident that if I wasnt able to do that, and we had to put them in a home, they both would have died years earlier than they did. What really gets me is the nursing staff gave us the impressions that mom was getting better, and would be discharged to rehab soon. Then the doctor informed us that she knew my mom was dying. If there was nothing they could do to help her, why did she have to spend her last hours in a hospital bed? She would have been much more comfortable at home.

Oh okay, my misunderstanding. My brain went off on a tangent and I didnt read carefully enough.

Has he mentioned a dnr? Something to get ahead of. Some doctors will push push meds

FightingJester posted...

Has he mentioned a dnr? Something to get ahead of. Some doctors will push push meds

I found his living will, advanced directive, and health care agent paperwork. Hes dnr and its noted.

Sorry to hear that man. I went through it with my Mum and my wife recently went through it with her Dad. Just a shitty time all around.

Just over a year ago (late December 2021) we found out my dad had cancer, which turned out to be stage 4 pancreatic. It quickly became apparent that he wasn't strong enough to even attempt chemo and we just had to set him up with palliative care. Not quite a month later he was gone.

Best wishes to you and your family and may you stay strong getting through everything you'll have to do.

sorry to hear brother. props to you for putting up with the unpleasantness of the past few months where it seemed like none of his other kids wanted anything to do with him. takes conviction

Sorry to hear that.

I'm sorry to hear that tc.

Mizznox posted...

Just over a year ago (late December 2021) we found out my dad had cancer, which turned out to be stage 4 pancreatic. It quickly became apparent that he wasn't strong enough to even attempt chemo and we just had to set him up with palliative care. Not quite a month later he was gone.

Best wishes to you and your family and may you stay strong getting through everything you'll have to do.

Not to be TMI, but a callback to last year: it's pretty crazy how you and I had very similar situations at around the same time.

My situation was a bit more abrupt - palliative care was in a very short window. That being said, there's a trade off between situations with TC. On one hand, his dad has been able to digest news over time, but on the other hand, his dad has been enduring a lot

Best wishes indeed TC. My biggest takeaway from my experience is time. You may not really have a pleasant experience, but you want to make the most out of the time you have.

Of course; the man who was physically and emotionally abusive slides back into that behavior when he doesnt feel good.

He asked me what I took out of my briefcase.

I told him I didnt have one.

He got annoyed your case! Whatever!

So I tell him I dont have one... trying to be patient

Then he starts laying into how Im lying to him and hiding things. And its like, Im just sitting here... he kept getting more abrasive until I finally threatened to leave for the night. Only then did he finally calm down.

Have you considered that he might have genuinely believed that he saw you open up a briefcase?

mustachedmystic posted...

Have you considered that he might have genuinely believed that he saw you open up a briefcase?

Which is why I calmly said I did not have one. Its when he became abusive that I put a stop to that. This man literally beat me and mentally abused me as a child. He doesnt get a free pass nor am I required to suffer more simply because hes dying.

Im so sorry you had an abusive father, and I probably shouldnt be criticizing at this time, but youre obviously a good person, and because of such, I believe you might grow to regret threatening the man like that when he is on his death bed.

mustachedmystic posted...

Im so sorry you had an abusive father, and I probably shouldnt be criticizing at this time, but youre obviously a good person, and because of such, I believe you might grow to regret threatening the man like that when he is on his death bed.

I dont feel regret or remorse. Part of the trauma response from being raised by these people.

I did not speak to my mother for most of the 16 years after I moved out before she died. Maybe a sentence here or there on the phone. But Ive never regretted it.

Being beaten with a belt, yelled at for things you didnt do, no matter how much proof, evidence, or convincing you tried, and then being beaten harder for denying it

So yeah... Ive mentioned I probably wont feel much going on. Im willing to help in this situation, and I feel like he probably already would have died if I wasnt around to help as much as Im trying to... but that doesnt mean Im willing to let him break boundaries I have for how he raised me.

Im not upset for you feeling that maybe I should be kinder, but I also feel that my mental health also needs its priority and my ptsd has been triggered so Im now dealing with flashbacks from this... and Im having a panic attack.

Boundaries are healthy. Dying give a person a right to break them.

Well yesterday was fun because they had to do a straight catheter since he was holding onto almost 600ml of urine. I was in the room for that. It was traumatic even just being there.

I have the list of nursing facilities so I need to pick 5 of them and send them back. Going to do that this weekend.

Today hes in good spirits and doing well, they placed a permanent catheter overnight, so they dont have to do it over and over.

And the old bastard ate half of my lunch! I bought a spicy Italian sandwich and he asked what I had. He said it sounded good and wanted a bite... so I tore him off one. Then he wanted a whole sandwich... so I just gave him half of it. Lol

Of course he keeps being overly touchy when he grabs food and I have to wash my hands over and over and the industrial germ melting soap is getting ready to melt my entire fucking hands. Heh.

Fuck cancer. Hope you get some good memories out of the bullshit, TC.

Alucard188 posted...

Fuck cancer. Hope you get some good memories out of the bullshit, TC.

Nope. Not really. My parents were both abusive both physically and mentally.

He really did not want to be cleaned. He fought them pretty hard. They werent able to fully clean him. Hes pretty cranky right now.

Theyre going to wait longer to clean him next time and I suggested some oxycodone so hes maybe more comfortable.

My dad was difficult, and most of the time he was around he was my least favorite person. Not at the same level of what you experienced with yours - and sorry my last post was a little bland - but what I mean is use this last time just to make some sense of him.

I know for a fact today I'd not really get along with my dad, but there was a lot of unanswered questions and loose threads, which wasn't helped by a bunch of stories his friends and older family shared with me. They knew a different person than I did. Would've been nice to have a complete story.

I also did have a conversation with him for a very short time about his regrets. It's just a shame. Sounded like I finally talked to a sane version of him and that was the only opportunity that was afforded to us, and it took the 11th hour of his life to come to that.

KaZooo posted...

My dad was difficult, and most of the time he was around he was my least favorite person. Not at the same level of what you experienced with yours - and sorry my last post was a little bland - but what I mean is use this last time just to make some sense of him.

I know for a fact today I'd not really get along with my dad, but there was a lot of unanswered questions and loose threads, which wasn't helped by a bunch of stories his friends and older family shared with me. They knew a different person than I did. Would've been nice to have a complete story.

I also did have a conversation with him for a very short time about his regrets. It's just a shame. Sounded like I finally talked to a sane version of him and that was the only opportunity that was afforded to us, and it took the 11th hour of his life to come to that.

My dad has been nicer since I came back into his life. I think he was trying to find recompense for his actions when he was younger. I tolerate him, and I help him to the extent I am able, but I have no desire to twist myself further than what I know that I can do for this man.

If its any indication, I saw a psychologist when I was in 5th grade, I do not remember anything from 4th grade, and my father has never told me why. Hes only claimed he didnt even know about it.

While my parents werent the absolute worst and there are other things that I could have had to deal with, Im left with what was done and what I am now. I dont blame them for my actions, as an adult I need to be responsible for that, but I can blame them for the circumstances putting me into this frame.

I still have never mourned my mother, and I dont think I ever will. Not feeling remorse or regret makes it an easy statement to say.

I can say that in a hypothetical future I may grow to regret not spending more time with them, but even if I do come to feel regret I can always remember being beaten by a 2 wide belt because I spilled something on a hardwood floor. Or the times I was accused of doing something like knocking over something that I didnt, and being beaten harder for lying about it... when we had 12 cats.

I'm sorry to hear that man :/

My dad just passed away this November from multiple myeloma so I understand what you must be going through. If you wanna talk at all just holler

RchHomieQuanChi posted...

I'm sorry to hear that man :/

My dad just passed away this November from multiple myeloma so I understand what you must be going through. If you wanna talk at all just holler

Sorry to hear that. Hopefully he didnt suffer long. Thats my only desire for things like this. Pointless pain sucks.

My mother in law went last April too. People just be droppin

ZangsBeard posted...

Sorry to hear that. Hopefully he didnt suffer long. Thats my only desire for things like this. Pointless pain sucks.

My mother in law went last April too. People just be droppin

It sounded like he was dealing it for a while but he didn't want the family to worry about it. It wasn't really until around September I understood the severity of his situation.

I did get to see him in the hospital a week before he passed and his spirits were still high. He was still cracking jokes and was still fighting. But after I flew back home, his condition worsened a few days after and he died the day after Thanksgiving. I think he was just happy that so many people were there for him.

And yeah, honestly the stretch of 2020-2022 has just been super rough. Lots of close friends and family died and other people being told they have a time limit. Just sucks. But the best we can do is stay strong and find a way to push forward. I think that's the best way we can honor them.

RchHomieQuanChi posted...

It sounded like he was dealing it for a while but he didn't want the family to worry about it. It wasn't really until around September I understood the severity of his situation.

I did get to see him in the hospital a week before he passed and his spirits were still high. He was still cracking jokes and was still fighting. But after I flew back home, his condition worsened a few days after and he died the day after Thanksgiving. I think he was just happy that so many people were there for him.

And yeah, honestly the stretch of 2020-2022 has just been super rough. Lots of close friends and family died and other people being told they have a time limit. Just sucks. But the best we can do is stay strong and find a way to push forward. I think that's the best way we can honor them.

If I could honor my mother it would be to leave the couch my dad ruined on her grave. But, thats my twisted humor. >_>

Thought I posted in here but guess not

Sorry to hear that man

Dealing with this and watching after them is fucking hard, I know that firsthand

ZangsBeard posted...

If I could honor my mother it would be to leave the couch my dad ruined on her grave. But, thats my twisted humor. >_>

Lmfao

ZangsBeard posted...

He really did not want to be cleaned. He fought them pretty hard. They werent able to fully clean him. Hes pretty cranky right now.

Theyre going to wait longer to clean him next time and I suggested some oxycodone so hes maybe more comfortable.

As someone who works in elder care, and recently cared for someone on hospice care who eventually passed, it boggles my fucking mind how its perfectly okay to euthanize our pets when their quality of life dips one iota, but your actual human family? Naw, just keep them existing. For reasons.

TC, I once heard somewhere that people that are abused in childhood either turn into a monster, or an incredibly empathetic person, and from reading this topic, it seems obvious that you learn towards the latter.

Been there mate with the wifes dad who passed last year. Its shit man. Fuck all anyone can say to make you feel better - just try to make the most of whatever time you have left.

Sorry, man. This must be hard not only for him, but you also.

It sounds like the best you can do right now is to keep him as comfortable and pain-free as possible. Its good that you can lean on any source for support right now.

[LFAQs-redacted-quote]

I only meant pets euthanized by their owners when they get too old to maintain a comfortable quality of life. You always hear that they euthanize pets when they're "suffering".

Well, IMO a human laying in bed all day, barely existing, being periodically rolled to prevent bedsores and just........waiting for the end can definitely count as "suffering", especially when they want to go.

My client was very pragmatic, being an ex-marine. He told his son "bring me my .45, and I'll handle it." His son said "no thanks, Dad. Not trying to catch an accessory charge here." and that was the end of that discussion.

Not much has changed in the past couple of days. His other son showed up and I had breakfast with him, his wife, and grandson yesterday.

Hes going to be in town for a week, and is going to my grandfathers funeral. Half brother isnt related to grandfather but grandfather took him in after our dad threw him out on his ass with no money when he was a kid.

I really dont feel like going to the hospital today... so tempted to not go and clean the house more.

I need a mental health day from my father who is being bitchy, argumentative, and throwing a fit that his other kids arent here. Oh I probably deserve it...!

When 3 of his 5 have shown up. Only the two girls havent...

But, he does deserve it. Ive never held any of my siblings at fault for being no contact. Its their choice. They know whats happening, theyre getting the information.

And I dont feel like having him lash out at me and get angry at me when I tell him I have to leave.

I just dont know a good reason I could tell him as to why I didnt come... maybe after a bath Ill feel up to going for awhile. Or maybe Ill go late so I can only stay a few hours.

Only thing that helps me be more patient with people, who maybe dont deserve it, is remembering how much less time they have left. Plus a lot of people lash out when theyre in pain, fatigued, sick and so on.

I hope that helps, for whatever its worth.

My dad was pretty chill before he passed but at the time we didn't know he was going to pass away just that something was severely wrong with him