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

(+) Yeah! (+)

Sorry if I was too pushy earlier by the way. I hope you do whatever you need to get through this. Do you have a support network for yourself at all? Other family or friends?

SHRlKE posted...

Started with just conspiracy about nurses trying to hurt him and wanting to go home and by the end was just shouting until one day he just stopped like hed had a mental breakdown and that was it.

My dad did the same, and called the PD. Apparently it's not a rare thing. It's its own cabin fever. The repeating noises can screw with patients

KaZooo posted...

My dad did the same, and called the PD. Apparently it's not a rare thing. It's its own cabin fever. The repeating noises can screw with patients

ah sorry thats shit you went through it as well.

my grandad wanted to go home before he really lost it and they were pretty much his last words... I wanna go home... I wanna go home... I wanna go home... heartbreaking when I look back. but he had lung issues and it would have been a death sentence as chances are he wouldnt have made the journey due to the high concentration of oxygen he was on which they wouldnt have been able to replicate in the travel home or at home. That being said do feel like he was In limbo for a few weeks slowly dying and was just being kept alive for the sake of it.

I really do think end of life care needs to improve and be more humane as forcing someone to stay alive when they are in pain / slowly losing their faculties just seems cruel as fuck.

with cancer there are usually well defined pathways during the end days... not so much with other issues.

SHRlKE posted...

Whats his mental state like? When my grandad was in hospital before he died he slowly became more and more broken mentally. Started with just conspiracy about nurses trying to hurt him and wanting to go home and by the end was just shouting until one day he just stopped like hed had a mental breakdown and that was it. He was there and conscious but no one was home as it were. Awful to see.

He comes and goes. Hes mostly sleeping, but when hes awake hes maybe 50/50 between lucid and hallucinating in some sort. He seems to be uncomfortable most of the time but refuses pain meds. Hes always had a paranoid streak in him. Hes made multiple comments about theyre trying to kill him. Or he wants his phone but then he doesnt because someone will steal it.

SHRlKE posted...

Sorry if I was too pushy earlier by the way. I hope you do whatever you need to get through this. Do you have a support network for yourself at all? Other family or friends?

No worries. I wasnt offended. I was just stating I wouldnt respond to it.

Well Ive connected to my siblings for the first time in my life. Well kind of. The younger brother is super helpful and out there. One sister says she appreciates what Im doing for dad. The other one Ive not had one on one or anything, and the elder brother I havent seen in 3 days and he didnt say goodbye. Lol

Dad had apparently been trying to get up off the bed... today he did it while I was here. He did it so quick I couldnt even react and he was on the floor. Scraped his elbow and bled a bit and then got pissy when they kept asking him if he was in pain. Doesnt look like any major damage.

I didn't stay too long with dad, but I was productive. I did a lot of cleaning in the kitchen. Vacuumed/wiped down the tops of all of the the cupboards on one side of the kitchen, cleaned one of the ceiling fans, washed one of the light fixtures. Also cleaned out the bottom of the pantry.

Still so much left to do.

Zangrief posted...

I didn't stay too long with dad, but I was productive. I did a lot of cleaning in the kitchen. Vacuumed/wiped down the tops of all of the the cupboards on one side of the kitchen, cleaned one of the ceiling fans, washed one of the light fixtures. Also cleaned out the bottom of the pantry.

Still so much left to do.

You did so much!

Ruvan22 posted...

You did so much!

But theres so much more...! And the walls really should be cleaned like 150 times. And the lack of a hood on the stove top suuucks.

Before I got to the hospital I cleaned out the inside of my car, contacted behavioral medicine for a new social worker, and made an appointment to get my dads back taxes done. I also now have the therapy set up for next week. Woo.

My dad was sitting up and eating lunch but he was saying random things and when I asked what he meant hed just say something else. Then he went back to sleep.

Today he was sitting up and very alert. I told them Im leaving today!

He could follow a conversation but didnt know where he was, how he got there, that he had/has infections, and would continually mistake being in West Virginia. He was very adamant to want a cigarette. I asked him how hed get outside to smoke Ill just walk!

I was tempted to ask him if he could stand but just kind of changed the subject.

He finally laid down and asked me am I going to die to which I responded you need to get stronger and eat more to get out of here, that doesnt answer my question, well, Im not a medical expert I cant make statements like that. The goal is for you to go home...

Zangrief posted...

Today he was sitting up and very alert. I told them Im leaving today!

He could follow a conversation but didnt know where he was, how he got there, that he had/has infections, and would continually mistake being in West Virginia. He was very adamant to want a cigarette. I asked him how hed get outside to smoke Ill just walk!

I was tempted to ask him if he could stand but just kind of changed the subject.

He finally laid down and asked me am I going to die to which I responded you need to get stronger and eat more to get out of here, that doesnt answer my question, well, Im not a medical expert I cant make statements like that. The goal is for you to go home...

Wow.. that's a really hard question to answer...

Ruvan22 posted...

Wow.. that's a really hard question to answer...

Yeah. I dont want to say something that takes his Will away. Things can change. Or he could just languish for awhile. He asked the doctors today how long they planned to keep him until this is done whats that mean how long? One to two more weeks Id guess

I had a small conversation about his medications but forgot to ask what they meant by that. Well I didnt forget I didnt want to ask in front of my father. Was it just placating or do they think thats all that he has left?

It sounds pretty similar to my father-in-law who passed away last year. Got really paranoid that the hospital had kidnapped him. Tried to pass notes. Hid his phone. We were told his calcium was spiking and it lead to hallucinations and paranoia. It ended up being the way the cancer ended up killing him.

It wasn't constant at least. He perked up in that last month now and again and it was never as bad as that initial spike when the hospital could do something about it. Also now and again would ask the hard questions. But even if he got the hard answer he'd quickly forget. Eventually he just went to sleep for a couple of days and never woke up.

Your stories really sound similar to what we went through near the end. That feeling of knowing it's happening soon but not really knowing when it awful. You don't really 'know' until like the last day.

Zangrief posted...

Today he was sitting up and very alert. I told them Im leaving today!

He could follow a conversation but didnt know where he was, how he got there, that he had/has infections, and would continually mistake being in West Virginia. He was very adamant to want a cigarette. I asked him how hed get outside to smoke Ill just walk!

I was tempted to ask him if he could stand but just kind of changed the subject.

He finally laid down and asked me am I going to die to which I responded you need to get stronger and eat more to get out of here, that doesnt answer my question, well, Im not a medical expert I cant make statements like that. The goal is for you to go home...

Yeah this is the part where you're just seeing more of the human element than the person. I kinda had the same thing with my dad when it came to looking at the recovery process. Might have been the other way around, and he knew what was happening, and just trying to veer us off thr mindset.