End of life questions.

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AnOldTroll

AnOldTroll

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Only titled this way because I want to know folks experiences on taking care of their parents.
Evidently, my dad failed all his swallow tests. He has dementia but is still there when I visit him, going again tomorrow with my daughter.

They are recommending a feeding tube. I thnk this will make him worse. Personally I think they are just done dealing with him.

Anyone here been thru this and can give me any advice?

He hasn't lost any weight that I can tell.

He's 91
 
I unfortunetly have no advise.
My parents are both gone, But my prayers are with you.
 
If he's still there for you, remembers you, he won't enjoy starving to death.
If he won't eat, a permanent feeding tube is reasonable. They aren't difficult to put in.
That way he can get the nutrition needed.

My mom died of it over 10 years ago and was tube fed for 6 months.
I'm sorry AOT.
 
chevss454 said:
If he's still there for you, remembers you, he won't enjoy starving to death.
If he won't eat, a permanent feeding tube is reasonable. They aren't difficult to put in.
That way he can get the nutrition needed.

My mom died of it over 10 years ago and was tube fed for 6 months.
I'm sorry AOT.
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Thanks
I'll know more tomorrow, God willing.
It has been 3 weeks since I saw him last.

2 years ago he was "cleaning up" my property. A friggin hill.

4 years ago he was junping over a 4 foot fence...
 
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AnOldTroll said:
Thanks
I'll know more tomorrow, God willing.
It has been 3 weeks since I saw him last.

2 years ago he was "cleaning up" my property. A friggin hill.

4 years ago he was junping over a 4 foot fence...
Click to expand...

I know...prayers.
 
AnOldTroll said:
Only titled this way because I want to know folks experiences on taking care of their parents.
Evidently, my dad failed all his swallow tests. He has dementia but is still there when I visit him, going again tomorrow with my daughter.

They are recommending a feeding tube. I think this will make him worse. Personally I think they are just done dealing with him.

Anyone here been thru this and can give me any advice?

He hasn't lost any weight that I can tell.

He's 91
Click to expand...
No advice, but I can tell you my experience.

My mother was 91 in a nursing home. She was having trouble with the valve that directs liquids and solids into the stomach and air into the lungs. She was forever getting water into her lungs causing pneumonia and was taking "thick" water, water you eat with a spoon. She went into a coma and the nursing home wanted permission to install a tube to supply water. It was explained to me that without it she would die of thirst in two weeks or less and could be in pain even if in a coma.

The problem was my mother had made it clear she wanted no life-extending apparatus and particularly no tubes. My brothers and sister and I agreed and promised her but when the time came for the actual decision to be made, it was not so easy to deny her water. We four children discussed it and they deferred to me as the eldest. Hardest decision of my life. In accordance with my mother's specific request, I denied permission for the water tube but compromised by authorizing a morphine drip in case she could feel pain. The nursing home was not happy and I heard things like, "So you're just going to sit by and let you mother die of thirst?"

She died two and a half days later. In my mind I did the only thing I could do, respect my mother's wishes, but I think about it often even now. I don't regret the decision I made. I do regret that I had to make it.
 
My dad has the beginnings of it. It sucks. My grandmother had it. Numerous relatives too. Same side of family. There are several things that can trigger the evilness. It's best to change the subject asap whenever triggered. It's not fun.
 
AnOldTroll said:
Only titled this way because I want to know folks experiences on taking care of their parents.
Evidently, my dad failed all his swallow tests. He has dementia but is still there when I visit him, going again tomorrow with my daughter.

They are recommending a feeding tube. I thnk this will make him worse. Personally I think they are just done dealing with him.

Anyone here been thru this and can give me any advice?

He hasn't lost any weight that I can tell.

He's 91
Click to expand...
best of luck
my parents are both still alive and fully capable, but I know these days will come, so thoughts and prayers with you and your dad!
 
spacecrime said:
No advice, but I can tell you my experience.

My mother was 91 in a nursing home. She was having trouble with the valve that directs liquids and solids into the stomach and air into the lungs. She was forever getting water into her lungs causing pneumonia and was taking "thick" water, water you eat with a spoon. She went into a coma and the nursing home wanted permission to install a tube to supply water. It was explained to me that without it she would die of thirst in two weeks or less and could be in pain even if in a coma.

The problem was my mother had made it clear she wanted no life-extending apparatus and particularly no tubes. My brothers and sister and I agreed and promised her but when the time came for the actual decision to be made, it was not so easy to deny her water. We four children discussed it and they deferred to me as the eldest. Hardest decision of my life. In accordance with my mother's specific request, I denied permission for the water tube but compromised by authorizing a morphine drip in case she could feel pain. The nursing home was not happy and I heard things like, "So you're just going to sit by and let you mother die of thirst?"

She died two and a half days later. In my mind I did the only thing I could do, respect my mother's wishes, but I think about it often even now. I don't regret the decision I made. I do regret that I had to make it.
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Just my 2 cents but I think you did the right thing. my parents have told me the same, but it's easy to say when you are fine, but when they are in that position it's a different story.
a co-worker just went thru a similar thing with their father. in the end, they did what he had always said he wanted to be done in that case, and passed a few days later. he is sorry he is gone but glad he honored his wishes.
 
Ok, no experience in this particular scenario, my dad died of cancer 5 odd yesrs ago and he was still mentally fit when he transitioned to hospice.

however, i’ve been in the belly of the beast multiple times with my wife and have a good idea what it takes to be a proper paitient advocat.

in a nut shell it entails being a royal pain in the ass so its easier for the health care providers to simply do what you want, just to make you go away.

yes, its a fine line between that and just pissing them off completely,but you get my idea.

if he’s fine with you, then maybe the issue is the staff where he is.

look the facility up on the Medicare site. It ranks every facility that has Medicare paitients. Maybe getting him to another place will provide better care.

get a notebook and jot down questions as you think of them. Ask them when you get there.

insist they explain to you all the options and why they think their recomendation is the best. Make them justify why its best for your dad and not for them.

if your dad still has a PCP get them involved, if not, try to find some other dr to consult outside where your dad is.

consider getting him sent to a hospital for evaluation. you can always simply drive him to the ER yourself, if push comes to shove.

never undersetimate the power of one simple question.

why?

the trick is to keep them on the defensive. They aren’t used to minions questioning their godhood. You’d be surprised to find out how often the emperor has no clothes.

understand the role dynamic and exploit it.

the role definition in the health care world makes a union shop look like total anarchy.

role doesn’t equal experience. Be aware of friction in the team where one person with more experience has to bow down to one with less, simply due to their job title.

when you sense that, jump in the face of the higher ranked person to score points with the other person.

score enough points and it will be much easier to get that person what you want them to do for your dad.

when all else fails, simply be stubborn. They don’t have the same amount of time that you do. They have less time to spare than you do.
 
Thanks everyone for your experiences, comments and advice. I am going to assess how my dad is tomorrow and will have one of my brothers who is his medical POA on zoom. I know things go fast at the end. like I said up above 3 weeks ago he appeared just fine... well i mean a shell of himself but still there.
 
I can not tell you what you should do. I myself am dealing with end of life issues. But I know from many people that music that he was familiar with can often help to bring back some of what he had for a time. If he truly can not swallow then you need to do what you believe to be in his best interest. Bless you and your father and all of your family at this difficult time.
 
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AnOldTroll said:
Thanks everyone for your experiences, comments and advice. I am going to assess how my dad is tomorrow and will have one of my brothers who is his medical POA on zoom. I know things go fast at the end. like I said up above 3 weeks ago he appeared just fine... well i mean a shell of himself but still there.
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Sorry to hear this AOT. The only advice I can possibly give is to honor his wishes, if you know what they are. When my mom went thru this, she calmly told me that she was going to Hospice and that she was done and did not want any extreme measures taken so thats exactly what we did.

when my dad’s time came, he fought it the entire time and that was somehow harder to deal with (for me) than my mom.
 
I wish I had some words to help you. :(

My mom has Alzheimer's. Her side of the family had 15 children(Northern Maine French Catholics) so 17 total. My grandfather died from alz, he was diagnosed and we lost him quickly a few years later. Out of 15 children about 10 or 11 have it. I am not sure about the one who's don't have it since I am not living near them like I use to. I know the chance of my two sisters and I getting it very high, very, very high. That is something that scares the hell out of me so I been preparing my family early on.

Every time my sister back home brings up that the nursing home has called and I hear what happened, I wonder what in the hell are they doing there. It is hard that I am not near my mom, 27 hours away one way, so I depend on my sister near her and the home to take care of her.

I have set up my records for my family on what my thoughts and wishes are before hand. They know if anything happens like what you wrote and more I have planned it out. All they have to do is go to my large file cabinet in my office, first drawer, the very large purple folder which holds everything I could think of from a to z so they don't have to wonder what to do. I am trying to lessen what they need to worry about and have to do and to have to do anything blindly where I am concerned


My mom made her thoughts clear on what she wants when she gets to this point which is good due to a sister back home that well, I have a sister back home that lives near our mom

What you have to go through sucks, and is so incredibly hard. Even though we know my mom's wishes, to go through them will be hard.

I am rambling, I apologize. No words to help you, sorry, with this difficult time right now for you. But if you need to talk about it more or vent about it please don't hesitate, I am a good listener.
 
Dad is still doing just fine. I watched him eat. Evidently, new speech therapist or whoever it was that did those tests wasn't aware of his history.

Great visit for 3/4's of the time.

I won't bother you with the last 1/4 as you wouldn't even believe it.

Again, thanks for all of your responses, Really great board.
 
AnOldTroll said:
I won't bother you with the last 1/4 as you wouldn't even believe it.
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Is that the part where you gave your sibling the figure 4 leg lock,DDT, and finish him or her off with a sleeper hold?

On a more serious note I’m sorry you’re going through what you’re going through and most of all I’m sorry for what your dad is going through.❤️
 
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