S/o what happens if Medicaid doesn't cover needed assisted living?

[TravelingChris]

On 7/14/2021 at 12:52 PM, lauraw4321 said:

If you want to qualify for Medicaid there are definitely things you can do now. Move assets to trusts, gift to kids, etc. But not everyone wants Medicaid (for good reason). 

Can anyone tell me about Medicaid and Social Security and Pensions?  Because we can never spend down that since it will be coming every month (military pension already is).

[TravelingChris]

On 7/14/2021 at 7:38 PM, Murphy101 said:

This part I found disgusting. I don’t think these people are pathetic with nothing to contribute to society. 

But here is a simple truth that many of us seem to resist: living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.

I have lived most of my adult life as somewhat disabled and in the last ten years, that disability has increased a lot.   I remember this article from when it was written.  I was appalled then and am appalled now.

Disabled people can live very good lives.  I know people in their 90's who are still contributing to society. 

[TravelingChris]

17 hours ago, Scarlett said:

Not speaking for Murphy but that is not what I am talking about.  It isn't the stopping of medical intervention.  It was the characterization of the elderly.  'Well, you have no real value left, good bye.'

And it wasn't just about the elderly, but the disabled.  Which is super discouraging since we know  doctors often dismiss the disabled.

[TravelingChris]

17 hours ago, DoraBora said:

 

Aggressive treatment of pneumonia will often keep a very old person alive, though his life afterward may require significant nursing and supervision.

I am not sure what you mean by aggressive treatment- are you talking about antibiotics or antivirals and oxygen?  Because dying slowly by suffocation is absolutely awful.  

[TechWife]

2 hours ago, TravelingChris said:

Can anyone tell me about Medicaid and Social Security and Pensions?  Because we can never spend down that since it will be coming every month (military pension already is).

The benefits are assigned to the nursing home and paid to the nursing home. The resident receives a small monthly allowance. 
 

Veterans may qualify for something called “Aid and Attendance,” depending on their total income. This benefit paid for my father’s home care aids three days a week his last year of his life. The funds can be used for a variety of things, including assisted living. Spouses are entitled to a partial benefit as well if the veteran is deceased. Here is the info on that: https://www.veteranaid.org/aid-and-attendance-eligibility.php

 

[TechWife]

2 hours ago, TravelingChris said:

I am not sure what you mean by aggressive treatment- are you talking about antibiotics or antivirals and oxygen?  Because dying slowly by suffocation is absolutely awful.  

My father’s cause of death was pneumonia at age 86. Aggressive treatment is a ventilator, high powered antibiotics, suctioning secretions out of lungs, steroid breathing treatments. Comfort care is oxygen and pain medication. There is a way, using blood tests, that doctors can tell if the antibiotics are having any affect at all.
My father initially received aggressive treatment when he arrived at the hospital because his rehab facility failed to send his DNR paperwork with him. It took several hours to get everything straightened out once family arrived. It was awful for everyone concerned and the treatment itself caused a lot of pain for my father. 

I think what a lot for people, especially those who haven’t been around critically ill people, don’t realize is that medical treatment can be violent - CPR, suction, & vents all have the potential to cause damage to the body and they are also painful. It is traumatic from a physical standpoint and from a mental standpoint. Treatment decisions are made quickly and they are complex. Whether or not any treatment is beneficial for any one person at a given time varies widely. This is why an advance directive is so very important. 

From personal experience, the decision to consent to a ventilator for my son at age 16 was very different than the decision to consent to remove one from my father at age 86, though neither decision was hard to make at the time and we have no regrets about either one. The factors involved were hugely different, though. 

 

[Murphy101]

2 hours ago, TravelingChris said:

I am not sure what you mean by aggressive treatment- are you talking about antibiotics or antivirals and oxygen?  Because dying slowly by suffocation is absolutely awful.  

Not really. It is often actually rather quick.  And yes, there comes a point when they don’t want the antibiotics/virals, or even the oxygen.  Usually less than a couple days left when they reach that point, but most often less than a day.  And not giving life saving measures doesn’t mean they can’t be given any comfort measures to make the decline less awful for them. 

2 minutes ago, Seasider too said:

IMO the shift should be to comfort care to increase quality of life rather than quantity of life. However, what  constitutes “comfort care” will vary by individual. 
 

I never suggested that at point of end of life they should not be given comfort care. Usually they want to literally be as physically comfortable as possible. Not cold or hot. Treated by their caregivers with dignity and kindness. Not in pain that can be managed.  Some are fine with doing all that at a hospital and some would prefer a hospice/home setting. 

 

[TechWife]

On 7/14/2021 at 6:10 PM, DoraBora said:

I hate grab bars.  I do think they're ugly.  I have no problem with widing doors and zero-depth shower entries (if that's that right term).  Again, it's usually a non-issue for those of us who've purchased existing homes that were built years ago.

I think if you need grab bars, you won’t think they are ugly. They, like other accessibility tools, provide freedom.  They aren’t symbols of despair, but of dignity. Maintaining any level of independence  is respectful of people of all ages. 

[TechWife]

21 hours ago, DoraBora said:

Prolonging ones misery doesn't require crazy or heroic procedures. 

…

Aggressive treatment of pneumonia will often keep a very old person alive, though his life afterward may require significant nursing and supervision.

There are people of all ages that require significant nursing and supervision for a variety of reasons. That doesn’t automatically relegate them to the status of miserable. In fact, the services provided to them bring them a lot of freedom and dignity that they wouldn’t otherwise have. Likewise, there are people with no physical restrictions at all who are miserable. Equating any level of health with the worth or purpose of a person isn’t beneficial, IMO. 

[PeterPan]

4 hours ago, TravelingChris said:

Can anyone tell me about Medicaid and Social Security and Pensions?  Because we can never spend down that since it will be coming every month (military pension already is).

 

1 hour ago, TechWife said:

The benefits are assigned to the nursing home and paid to the nursing home. The resident receives a small monthly allowance. 
 

Veterans may qualify for something called “Aid and Attendance,” depending on their total income. This benefit paid for my father’s home care aids three days a week his last year of his life. The funds can be used for a variety of things, including assisted living. Spouses are entitled to a partial benefit as well if the veteran is deceased. Here is the info on that: https://www.veteranaid.org/aid-and-attendance-eligibility.php

 

I've been looking into this for my dad because he has his military retirement, his military disability pension, and his social security. Technically you can only have one *pension* from the military, so he would get the disability pension *or* the Aid and Attendance pension but not both. There's also a less common Aid and Attendance I forget the word, another kind that is not a pension. It's very restricted to certain situations (reason for needing the care is specifically and directly military service) and it can stack on top of the disability pension. 

So yes, I think what will happen with my dad is, like you say, we will use his income sources (retirement, disability pension, and social security) plus his estate to pay his nursing home care when he gets to that stage. When his estate is gone and his sources of income no longer cover the expense, then he will flip to medicaid where they take everything and give him the small stipend.

@TravelingChris can talk with the American Legion or any certified VA benefits org to work through her specific situation. My dad used the American Legion before, so that's who I called. You do not have to be a member to talk with them.  The VA has a web page where you can search by what type of certified benefits counseling you want (free, lawyers, etc.).

[PeterPan]

23 minutes ago, TechWife said:

There are people of all ages that require significant nursing and supervision for a variety of reasons. That doesn’t automatically relegate them to the status of miserable. In fact, the services provided to them bring them a lot of freedom and dignity that they wouldn’t otherwise have. Likewise, there are people with no physical restrictions at all who are miserable. Equating any level of health with the worth or purpose of a person isn’t beneficial, IMO. 

I guess what struck me, as I read through the article, was that the author was young and making a big, brandishing FLOURISH about something that most people naturally work out for themselves. I think if someone's soul is peaceful and calm about death, then they are able to sort through rationally what they want to do. At least that's what I'm hoping.

Like with my dad, his situation is awkward. He's losing his physical abilities somewhat before his mental, and it's just not your typical aging decline. My dad is right with God and does not fear death. As long as he is not *depressed* (which he's not) and cognitively able, I think his input will be very important on how to handle this. To me, there are some things that are just decisions we make and have the right to make. 

And I don't really *know* what he'll decide. I think he's also vulnerable and susceptible to suggestion, which is why to me it's so tricky. But if I'm trying to facilitate life prolonging care after he moves to a skilled nursing facility and he is adamant he doesn't want that, I think I will respect that. I saw that with my grandma and I think, just listening to the posts here, that it's something most people work out, case by case. And I don't think it's depression or whatever to make some hard choices at some point. But I do think it's silly to do like that doctor has, and draw some kind of ridiculous line in the sand when it's very clear people differ. My dad could draw that line right now at 71 and I would not push back AT ALL. And there are people who don't and are just as right. And there are people who get pallative care for their cancers, just enough to keep them comfortable without denying reality. I've had several relatives in that situation.

To me so much goes back to fearing death. I think when someone doesn't fear death, they can sort out what they want. But I'm not looking forward to doing it with/for my dad, that's for sure. Sigh. And I think I'll just have to work through the issues of that, that the point is accepting life and how life goes, not choosing when someone dies.

[Junie]

1 hour ago, TechWife said:

I think if you need grab bars, you won’t think they are ugly. They, like other accessibility tools, provide freedom.  They aren’t symbols of despair, but of dignity. Maintaining any level of independence  is respectful of people of all ages. 

She was talking about the recommendation by a previous poster to make them mandatory by building code in all private residences.

Personally, I don't like them either and even when I do need them they will likely not help me.  I have Rheumatoid Arthritis and am not disabled yet, but I know that it is likely coming.  I have mobility issues and (sometimes) walk with a cane.  But, my grip strength is so poor and my hands are somewhat misshapen.  I can't use grab bars and will not be able to even when I need them.  I will need some other kind of assistance.

 

[PeterPan]

On 7/14/2021 at 4:59 PM, DoraBora said:

Or they don't want to mess with it, or they won't face the fact that if they grow old and remain at home, they might need a more accessible living space. 

I chafe at the idea that I would be required to build handicap accessible bathrooms in my house if I don't want them.  (Where I live, building codes like that only affect new builds.)

I was trying to find some context for your grab bars comment and realized it was in response to the hypothetical of whether everyone ought to be required to build accessibility features in. Obviously that's overkill, because for many people the decline of areas goes together. People work things out. A walker can go through a regular door and most homes do not need to be THAT accessible, lol. It's not code because it's overkill. 

But, I get why @Murphy101 is pondering it. I built wider doors and all one level, ADA toilets, etc. in my home because I had had issues (chronic fatigue, etc.) and knew I'd probably have mobility issues someday. Very few people have that luxury. Around here we have a lot of these garden home, retirement/indpenendent living options. they tend to have those safety features while still giving independence. Obviously for a fee, lol.

21 hours ago, DoraBora said:

but I suspect they'll regret it later on. 

Yeah I'm with you. I've got an aunt in her 80s who just had some testing that I suspect is for discussing a pacemaker. We'll see what she decides. She'll probably be pretty matter of fact, lol. When they did it for my grandma in her 80s, they felt like she was likely to have harm (left in a poor state, I don' tknow) without actually dying if they did not do the pacemaker. However when that battery was ready to be replaced 10 years later, they opted not to replace it. So that's pretty tricky stuff, knowing what the potential outcomes are of not doing the care.

[TechWife]

59 minutes ago, Junie said:

She was talking about the recommendation by a previous poster to make them mandatory by building code in all private residences.

Personally, I don't like them either and even when I do need them they will likely not help me.  I have Rheumatoid Arthritis and am not disabled yet, but I know that it is likely coming.  I have mobility issues and (sometimes) walk with a cane.  But, my grip strength is so poor and my hands are somewhat misshapen.  I can't use grab bars and will not be able to even when I need them.  I will need some other kind of assistance.

 

The rationale was only that they were ugly. They aren't ugly to people that need them. If your house doesn't have grab bars, it is inaccessible to anyone who needs grab bars. I don't understand making the attractiveness of a mobility aid a criteria on whether or not someone has the tools they need to function with more independence.

In any case, building codes for private homes generally only cover building safety. I wouldn't mind seeing wider doors mandated, but customization is really what counts because people, such as yourself have different needs.

Edited July 16, 2021 by TechWife

[DoraBora]

3 hours ago, TechWife said:

I think if you need grab bars, you won’t think they are ugly. They, like other accessibility tools, provide freedom.  They aren’t symbols of despair, but of dignity. Maintaining any level of independence  is respectful of people of all ages. 

Absolutely, but we were talking about requiring them in building codes for all private homes.  To me that's too much intrusion into my life and my home.  If we need them, or if my parents need them, we'll install them.

[DoraBora]

54 minutes ago, TechWife said:

The rationale was only that they were ugly. They aren't ugly to people that need them. If your house doesn't have grab bars, it is inaccessible to anyone who needs grab bars. I don't understand making the attractiveness of a mobility aid a criteria on whether or not someone has the tools they need to function with more independence.

In any case, building codes for private homes generally only cover building safety. I wouldn't mind seeing wider doors mandated, but customization is really what counts because people, such as yourself have different needs.

Nope.  I said earlier that I would chafe at such requirements in my private home.  I do think they're not very pretty, but even if I added them to my downstairs bathroom, my house still wouldn't be very handicap accessible.

[DoraBora]

Ftr, I'm not 100% in favor of all Dr. Emanuel wrote in his essay - I'm much too conservative to agree with an Emanuel on most things, lol.  I shared it as an alternative to the idea of assisted suicide (which I believe is morally wrong)... as food for thought.  His words upset a lot of folks (still are, evidently!) and came back to haunt him when President Biden tapped him to serve on the WH Covid Task Force. 

Though I don't agree with all he said, I wasn't offended because he was writing about his own observations and plans, and I found it to be an interesting perspective.

In my experience with my parents, mil, and two uncles, people who wish to continue with all manner of medical treatment up until they draw that final breath will have little trouble finding someone to give them what they want (in urban areas, anyway).  And that is as it should be.

 

[TravelingChris]

3 hours ago, TechWife said:

 

I think what a lot for people, especially those who haven’t been around critically ill people, don’t realize is that medical treatment can be violent - CPR, suction, & vents all have the potential to cause damage to the body and they are also painful. It is 

 

I learned hoe painful and useless medical treatment can be around day 6.5 in the hospital this March.  My IVs delivering my antibiotics had already had to been changed a few times due to vein collapse.  Then they were trying to take my blood that last very early morning or very late night.  They sent in three different techs and tried to take blood or re-insert IV (Can't remember which since it was so late/early and I was very tired).  They tried seven different times- they never got it done and decided to stop torturing me.  I wasn't complaining even though it was very painful. 

 

As to your point about steroids-- If I have my wits about me, ain't nobody going to stop me from steroids when I am having breathing issues.  I feel so wonderful on steroids.

[TravelingChris]

2 hours ago, Junie said:

She was talking about the recommendation by a previous poster to make them mandatory by building code in all private residences.

Personally, I don't like them either and even when I do need them they will likely not help me.  I have Rheumatoid Arthritis and am not disabled yet, but I know that it is likely coming.  I have mobility issues and (sometimes) walk with a cane.  But, my grip strength is so poor and my hands are somewhat misshapen.  I can't use grab bars and will not be able to even when I need them.  I will need some other kind of assistance.

 

I can't walk with a cane a lot of times just because it causes more pain in my shoulders, spine, etc.  I get you about grip strength.  My RA is not as advanced as my AS so my hands still have grip strength but thanks for this comment--- I am figuring out how to redesign my house.

[regentrude]

2 hours ago, PeterPan said:

To me so much goes back to fearing death. I think when someone doesn't fear death, they can sort out what they want.

Unfortunately, even if they know what they want, they may not have the ability to take care of that merciful end, and society won't offer any help.

If I knew that I didn't want my miserable life prolonged, were at peace with death, but were unable to move or communicate, what good would that do?

Edited July 16, 2021 by regentrude

[Spryte]

On the topic of grab bars, I too think that’s a bit much to require for all homes. But doors wide enough to accommodate walkers, and bathrooms that will work for someone using a walker or wheelchair would be nice. Enough space to accommodate an aide, even.

Ex: when FIL was able to visit us, we did not have a bathroom on the first floor that would accommodate his walker and him.  Nor would it accommodate a helper and him.  (Those are some awkward sentences!). It wasn’t a matter of grab bars.  He simply could not get into the bathroom and pivot on his own to use the toilet.  We could have installed grab bars.  And we bought a ramp to place over our front stairs when he was in a wheelchair.  But bathroom issues were impossible because our tiny powder room could not accommodate his needs.  Widening the door, probably moving some plumbing, was the only solution we could find, and for his limited visits - we didn’t do it.  

 

[Spryte]

4 minutes ago, Seasider too said:

That makes more sense because doorway width is a structural thing that would be hard to change after construction. 
 

I’m just not ready to say any of this is mandatory for private new construction. Takes the art out of architecture, and I think especially about young folks building eco friendly tiny houses. I think that’s important, too. 

Yes, and not every house is going to inhabited by a person with special needs.  Tiny houses are a great point.  I don’t think anyone would be maneuvering a wheelchair in one!  But in regular residential homes, maybe building in a way that could be altered easily in future might work. Wide enough doorways, powder rooms with enough space to accommodate two people, if one needs help.
 

Then again, having lived this, DH and I would probably just pay attention in the future, before purchasing again.  This house was never intended to house elderly people, it’s apparent.  It is definitely not elder-friendly, though it’s beautiful and we love our home.

[PeterPan]

1 hour ago, regentrude said:

Unfortunately, even if they know what they want, they may not have the ability to take care of that merciful end, and society won't offer any help.

If I knew that I didn't want my miserable life prolonged, were at peace with death, but were unable to move or communicate, what good would that do?

You're making kind of a weird argument since anyone, right now today, can go ahead and fill out all the documents and have them notarized to have their wishes fulfilled on this issue exactly as they mean them. My dad has reams of paperwork and no one (hospital, AL, no one) will take him without that paperwork in order. They will send around that social worker with a pen.

So sure, make your documents are in order. There's a Living Will, a health care power of attorney, etc., but there's also a form called Advanced Directives. I'm pretty head in the sand on that one. I know we have it and they have it, and I don't look because I don't like to think about it. But when the time comes, I'll open his paperwork and read what it says and do it. I would probably answer my own questions now if I read through it, because I'd see the *principles* of how he wanted it sorted out, which might make the trickier situations more obvious.

But no, I'm not into assisted suicide, early life termination, ethanasia, etc. To me that's a spiritual question and I'm distinctly on the side of life and the value of life. I see what you mean on not fearing death meaning someone might favor early assisted death. Since that would be a sin, that again is not on my list. I was connecting fearing death and someone fighting at all costs to stay alive, even if it's self harming, even if they'd have better quality of life with peaceful acceptance. 

 

[PeterPan]

Is there a full moon out or something? Pheromones? Sometimes I wonder when these threads start to go askew. 

[regentrude]

27 minutes ago, PeterPan said:

You're making kind of a weird argument since anyone, right now today, can go ahead and fill out all the documents and have them notarized to have their wishes fulfilled on this issue exactly as they mean .

No, not if they wish to die rather than vegetate. As long as their body doesn't require machines to be kept alive, (which they can deny), they have no way.

27 minutes ago, PeterPan said:

But no, I'm not into assisted suicide, early life termination, ethanasia, etc. To me that's a spiritual question and I'm distinctly on the side of life and the value of life. I see what you mean on not fearing death meaning someone might favor early assisted death. Since that would be a sin, that again is not on my list. 

Our views about death differ, and we can agree to disagree. I feel under no spiritual mandate to remain alive in body without any agency or quality of life, or in pain. It is the thing I fear most. One I would wish to avoid. 

It is a very raw and personal issue for me these days. MY father is on a feeding tube, unable to communicate, move, do anything, and there is no expectation of improvement. I think constantly about his quality of life and whether he wants this existence. I know it's horrible on my mother who does the nursing. It's hell. Simply. And I don't follow a belief system that would condemn me to such fate.

Eta: and yes, I have made my wishes clear to family, and we speak about it. (Still, there are scenarios where that won't help.)  But my father has not, and it haunts me constantly.

2nd Eta: when my friend's husband was beginning the year long process of dieing a horrible death, he asked her to bring him the gun. She refused. Years later, she still thinks about it and is tormented by the thought that she was selfish because she only worried  about going to prison.

Edited July 16, 2021 by regentrude

[PeterPan]

8 minutes ago, regentrude said:

MY father is on a feeding tube,

The family cannot remove it? Is this a Germany thing? 

For yourself, you might want to google "advance directives". A living will is part of this but there are further documents you can do. 

I'm so sorry your father is in this situation. 

Edited July 16, 2021 by PeterPan

[Spryte]

@regentrude I’m sorry you are going through this with your father.  It’s got to be heart wrenching.  
 

This is a topic I consider often, too, as we move through the phases with our three elders.  
 

I wish we had more options, for those of us with differing views on death.  

[Murphy101]

2 hours ago, DoraBora said:

Absolutely, but we were talking about requiring them in building codes for all private homes.  To me that's too much intrusion into my life and my home.  If we need them, or if my parents need them, we'll install them.

I think we are getting distracted by grab bars. Grab bars are not really what I was talking about anyways. 

1 hour ago, TravelingChris said:

As to your point about steroids-- If I have my wits about me, ain't nobody going to stop me from steroids when I am having breathing issues.  I feel so wonderful on steroids.

I’m all there with you in that one.  As an asthmatic let me tell ya - I’m on cloud nine when I have breathing issues and finally get me some steroids. 

1 hour ago, Seasider too said:

That makes more sense because doorway width is a structural thing that would be hard to change after construction. 

I’m just not ready to say any of this is mandatory for private new construction. Takes the art out of architecture, and I think especially about young folks building eco friendly tiny houses. I think that’s important, too. 

I am. I’m ready to say make structurally handicap accessible mandatory for all first floors. While many may not think they need it - almost every person will at some point, even if it’s only briefly. Like I said. When I broke my ankle - I couldn’t access any tub or shower in my house.  My house set up all means no one with a physical disability can visit me either. Grandma with a walker? Nope. My sister with a cane? Nope.  That’s no okay to me. It would very literally cost me no less than 15k to even be able to create an accessible shower/toilet in one downstairs bathroom. And that’s not addressing my kitchen or the sunken living room. I don’t think all houses should be required to update. But I think all new builds should be structurally accessible. Ramps if steps can’t be avoided, slightly wider doors and halls. Bathrooms and kitchens that someone in a walker can use.  I don’t care about grab bars.  That’s a cheap and easy fix. But structural accessibility issues are actually extremely common and extremely costly.  And nearly every person at some point struggles with it.

[regentrude]

Just now, PeterPan said:

The family cannot remove it? Is this a Germany thing? 

As I said in my ETA: He has never made his wishes clear. My mother is left to guess. 

[Murphy101]

11 minutes ago, regentrude said:

As I said in my ETA: He has never made his wishes clear. My mother is left to guess. 

I’m so sorry for your family is suffering through this. I wish he had made his wishes clear so the family could know they are respecting his wishes. 

[Murphy101]

23 minutes ago, regentrude said:

As I said in my ETA: He has never made his wishes clear. My mother is left to guess. 

I also want to say, I do not know if it helps at all, but while he may not have said exactly what he wanted, it sounds like they spent a good long lifetime together loving and caring for each other. So we could reasonably presume in this case that he would have understood everything your mom is thinking and feeling - and he would wish for her know he trusted her and believed she would only act in his best interests and wouldn’t be angry or hurt about this, whatever decision she may come to. I hope someone can tell her that and your family can find comfort in that knowledge. 

[regentrude]

17 hours ago, Murphy101 said:

I also want to say, I do not know if it helps at all, but while he may not have said exactly what he wanted, it sounds like they spent a good long lifetime together loving and caring for each other. So we could reasonably presume in this case that he would have understood everything your mom is thinking and feeling - and he would wish for her know he trusted her and believed she would only act in his best interests and wouldn’t be angry or hurt about this, whatever decision she may come to. I hope someone can tell her that and your family can find comfort in that knowledge. 

Thank you. He has always been in complete denial and never even made a casual remark about end of life care ( like when you're watching a movie and comment I wouldn't want this or I would like that) , absolutely nothing. 

<details deleted>

Edited July 17, 2021 by regentrude

[PeterPan]

2 hours ago, regentrude said:

I remember mom calling me about the decision and saying " but I can't just let him starve!"

 

That's what happened with my grandma and no feeding tube. And that's with a christian, pro life, etc. family. It's accepting death as it comes. But I think, like you're saying, once the feeding tube is in that's harder. 

2 hours ago, regentrude said:

When he stopped eating, we didn't know whether he wouldn't or couldn't. 

Was this after the stroke? Not eating is a normal step in dying. 

https://www.verywellhealth.com/post-stroke-feeding-tube-decision-3970475  I'm reading this article, and I'm surprised how blithely they make it sound like everyone after a stroke who can't eat within 7 days should go on a feeding tube. The doctors after my grandma's stroke gave the advice not to do that, and I think it's for the basic fact that for thousands of years this was a normal way to die (have a stroke, not be able to eat, die). Prolonging her when there was no chance of recovery or rehabilitation would have made no sense. 

I don't know what your legal options are, but it's not inhumane or euthanasia to want it out. I would have zero problem advocating or going to court even to get it done. You clearly assess that he has no chance of recovery. It's not immoral to accept death. You have to wonder how much medical advice is being given based on what makes money for the system rather than what is good for the person. 

Can you talk with Hospice about this? Even though it would be in the US, they might be able to give you perspective that you could then use to think through options with your family. Or is there an elder care attorney or something similar where they are who could advise you? My MIL made TERRIBLE decisions about my FIL's health his last 3 months of life. Not only was she full of emotion, but she was aging and just not in the best place mentally. I don't think it's disrespecting them to step in and say something needs to happen and get family members there.

[PeterPan]

3 hours ago, regentrude said:

As I said in my ETA: He has never made his wishes clear. My mother is left to guess. 

I don't know if I said this earlier, so I'll say it here. When a person doesn't express their wishes ahead, it can mean they trusted you to make good ones. Now sure it's hiding their head in the sand. But there is an element where some things don't have to be spoken. These are hard situations and that family member knew he was loved and that in the moment his family would make a good call. 

[regentrude]

15 hours ago, PeterPan said:

Was this after the stroke?

...

I don't know what your legal options are, but it's not inhumane or euthanasia to want it out. I would have zero problem advocating or going to court even to get it done. You clearly assess that he has no chance of recovery. It's not immoral to accept death. You have to wonder how much medical advice is being given based on what makes money for the system rather than what is good for the person. 

Can you talk with Hospice about this? 

<deleted>

Apologies for getting off topic and this being so long. Thank you for letting me put this here.

Edited July 17, 2021 by regentrude

[Melissa Louise]

It's not a terrible thing to wish for x

[Kassia]

It's not terrible to wish that at all, @regentrude  You are saying that out of love for your parents.  

[DoraBora]

36 minutes ago, Melissa Louise said:

It's not a terrible thing to wish for x

I agree.  Dying peacefully in one's sleep is the "good death" most people say they want.

I'm sorry this is happening.

[Laura Corin]

I'm sorry this is so hard @regentrude. It's not wrong to hope for that.

Is it possible to talk now, to your mother, other relatives and medical personnel, about what should happen if there is a crisis?

[regentrude]

1 hour ago, Laura Corin said:

Is it possible to talk now, to your mother, other relatives and medical personnel, about what should happen if there is a crisis?

My mom has signed a DNR and No Ventilator. My sister is a doctor at a major hospital; I trust her to advise our mom well.