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

[Spryte]

2 minutes ago, Murphy101 said:

This. I really wish that housing codes required all downstairs facilities to be handicap accessible. There are a LOT of people who could live at home if they had a home that was accessible. And for many they don’t find that out until they need it and remodeling can cost a fortune. And so they end up in a nursing home. And many don’t get to leave it. 

And this.

many goal is that by 55 we are out of this house and in a 1 story handicap accessible house. And we would move to where the most kids are living if needed. 

That’s a good idea, on making accessibility a requirement.

55 with adult kids sounds like another world.  We will have a 15 year old at that age.  🤣 

[skimomma]

The person I care for did a really good job of planning.  Having long term care insurance, and a good policy at that, has been extremely helpful.  And their POA, medical directive, and will was in place.  All good.  But things still did go off the rails and I am not sure how it could have been prevented. Their dementia was the slow moving kind and they were able to completely hide it for a long time.  Meanwhile, they were making very poor financial decisions, due largely to the dementia.  Like $500K total in mistakes over a long period of time.  Some of it was being scammed.  Some was true mistakes (bounced checks, late fees, lost checks/money, tax mistakes).  And some was just plain poor decisions like ill-considered home renovations.  Even with a good POA in place, we could not take over finances or even know what was going on until they welcomed our help (or was deemed incompetent).  

There can be a lot of shame and/or denial for some people with health issues, especially dementia.  Part of that shame/denial results in hiding planning/financial issues until it is too late to correct them.  I don't know how to avoid that for myself or others.  I can do all of the right planning but it can all be undone by unchecked dementia, I have learned.  Unless one is willing to have their children or other caregivers up in their business well before issues begin AND can maintain a good relationship when the time comes for someone else to take the reins, I just don't know how people can protect themselves.

[Scarlett]

7 minutes ago, skimomma said:

The person I care for did a really good job of planning.  Having long term care insurance, and a good policy at that, has been extremely helpful.  And their POA, medical directive, and will was in place.  All good.  But things still did go off the rails and I am not sure how it could have been prevented. Their dementia was the slow moving kind and they were able to completely hide it for a long time.  Meanwhile, they were making very poor financial decisions, due largely to the dementia.  Like $500K total in mistakes over a long period of time.  Some of it was being scammed.  Some was true mistakes (bounced checks, late fees, lost checks/money, tax mistakes).  And some was just plain poor decisions like ill-considered home renovations.  Even with a good POA in place, we could not take over finances or even know what was going on until they welcomed our help (or was deemed incompetent).  

There can be a lot of shame and/or denial for some people with health issues, especially dementia.  Part of that shame/denial results in hiding planning/financial issues until it is too late to correct them.  I don't know how to avoid that for myself or others.  I can do all of the right planning but it can all be undone by unchecked dementia, I have learned.  Unless one is willing to have their children or other caregivers up in their business well before issues begin AND can maintain a good relationship when the time comes for someone else to take the reins, I just don't know how people can protect themselves.

Although the term 'up in their business' sounds harsh to my ears, I agree that is what is needed!  Find someone you trust to be a second set of eyes as you age.  That of course is a process that begins YEARS before you might need to add someone to your business.  Dh and I are in the process of setting all of that up now.....we don't think any of our kids are old enough or responsible enough to be 'the one' to put in charge of things....but hopefully by the time we are old and alone one of them will be.  

[Scarlett]

24 minutes ago, Spryte said:

That’s a good idea, on making accessibility a requirement.

55 with adult kids sounds like another world.  We will have a 15 year old at that age.  🤣 

We are 54 and 56 and do have a single story home but it is not handicap accessible.  We plan to convert a shower/tub to walk in shower so that will help as we age.  But honestly the yard is too big for us and I would love to live in a nice garden home with a patio where I could have some potted flowers etc.  I doubt dh will ever go for that.  

[73349]

1 hour ago, Murphy101 said:

This. I really wish that housing codes required all downstairs facilities to be handicap accessible. There are a LOT of people who could live at home if they had a home that was accessible. And for many they don’t find that out until they need it and remodeling can cost a fortune. And so they end up in a nursing home. And many don’t get to leave it.

One obstacle to requiring this in some areas is that it increases the chance that the living area will be flooded. Ideally we would see consideration for both--a slightly elevated ground floor to deter against water, but with ramps instead of stairs.

[Laura Corin]

59 minutes ago, Scarlett said:

We are 54 and 56 and do have a single story home but it is not handicap accessible.  We plan to convert a shower/tub to walk in shower so that will help as we age.  But honestly the yard is too big for us and I would love to live in a nice garden home with a patio where I could have some potted flowers etc.  I doubt dh will ever go for that.  

We downsized last year. The house isn't actually much smaller but the garden is, and it's in a walkable village with facilities within reach. We are about to enlarge the downstairs shower. There's a sitting room and bedroom also on the entry level along with kitchen and sun room. There's one step in the middle of that floor, but a ramp would be easy to add.

I do most of the gardening, so Husband doesn't get to choose an impractical garden for me. I'm 58 and husband is about to turn 65.

[Murphy101]

1 hour ago, Spryte said:

That’s a good idea, on making accessibility a requirement.

55 with adult kids sounds like another world.  We will have a 15 year old at that age.  🤣 

To be fair my youngest will be 11 and my oldest will be 33. 😳

[Spryte]

3 minutes ago, Murphy101 said:

To be fair my youngest will be 11 and my oldest will be 33. 😳

At 55, our oldest will be 35, so not too far off.  🤣

[DoraBora]

1 hour ago, Murphy101 said:

This. I really wish that housing codes required all downstairs facilities to be handicap accessible. There are a LOT of people who could live at home if they had a home that was accessible. And for many they don’t find that out until they need it and remodeling can cost a fortune. And so they end up in a nursing home. And many don’t get to leave it. 

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.)

[mlktwins]

2 hours ago, skimomma said:

The person I care for did a really good job of planning.  Having long term care insurance, and a good policy at that, has been extremely helpful.  And their POA, medical directive, and will was in place.  All good.  But things still did go off the rails and I am not sure how it could have been prevented. Their dementia was the slow moving kind and they were able to completely hide it for a long time.  Meanwhile, they were making very poor financial decisions, due largely to the dementia.  Like $500K total in mistakes over a long period of time.  Some of it was being scammed.  Some was true mistakes (bounced checks, late fees, lost checks/money, tax mistakes).  And some was just plain poor decisions like ill-considered home renovations.  Even with a good POA in place, we could not take over finances or even know what was going on until they welcomed our help (or was deemed incompetent).  

There can be a lot of shame and/or denial for some people with health issues, especially dementia.  Part of that shame/denial results in hiding planning/financial issues until it is too late to correct them.  I don't know how to avoid that for myself or others.  I can do all of the right planning but it can all be undone by unchecked dementia, I have learned.  Unless one is willing to have their children or other caregivers up in their business well before issues begin AND can maintain a good relationship when the time comes for someone else to take the reins, I just don't know how people can protect themselves.

I have taken over pretty much everything for my dad.  It wasn't pretty in the beginning, but we are in a routine now.  And...I know no one is scamming his money -- I want to make sure he has money for AL when he is ready or I have to make that hard decision.  Getting closer and closer...

[Scarlett]

Just now, mlktwins said:

I have taken over pretty much everything for my dad.  It wasn't pretty in the beginning, but we are in a routine now.  And...I know no one is scamming his money -- I want to make sure he has money for AL when he is ready or I have to make that hard decision.  Getting closer and closer...

My mom did let me help her with her taxes recently....that was a huge step I think.

 

[Murphy101]

39 minutes ago, 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.)

Why? Handicap accessible bathrooms do not have to be fugly.  A lot of accessibility is just making things a bit wider and less steps. I’m not even talking wheelchairs. A lot of people can’t  even use a walker or cane in their house.  When I broke my ankle a decade ago I could not shower at all anywhere in my house.  A broken leg is a rather common event and it seem ridiculous to me that housing codes don’t reflect that geez if a person broke their leg - can they still get in/out of their home and shower? And of course a frustratingly annoying leg break in our 30s is a lot more serious at 60+.  It just is. 

Edited July 14, 2021 by Murphy101

[Melissa Louise]

What are suicide rates like for the elderly without family/assets?

Seems to me that would be a logical choice for many elderly, regardless of system of funding care (it's not any better here).

I suppose it would be a matter of finding the sweet spot when one still had capacity, and I guess many elderly ppl in this category miss-time their options. 

 

[DoraBora]

28 minutes ago, Melissa Louise said:

What are suicide rates like for the elderly without family/assets?

Seems to me that would be a logical choice for many elderly, regardless of system of funding care (it's not any better here).

I suppose it would be a matter of finding the sweet spot when one still had capacity, and I guess many elderly ppl in this category miss-time their options. 

 

Alternatively, what about deciding to stop pursuing preventative and curative medical treatment?  It's not a guarantee of an earlier, less prolonged death, but it might go a long way toward ending the dwindles.  (Easy for me to talk about now...)

The title of this article, by the way, is a little dramatic.

https://www.theatlantic.com/magazine/archive/2014/10/why-i-hope-to-die-at-75/379329/

Edited July 14, 2021 by DoraBora

[DoraBora]

30 minutes ago, Murphy101 said:

Why? Handicap accessible bathrooms do not have to be fugly.  A lot of accessibility is just making things a bit wider and less steps. I’m not even talking wheelchairs. A lot of people can’t  even use a walker or cane in their house.  When I broke my ankle a decade ago I could not shower at all anywhere in my house.  A broken leg is a rather common event and it seem ridiculous to me that housing codes don’t reflect that geez if a person broke their leg - can they still get in/out of their home and shower? And of course a frustratingly annoying leg break in our 30s is a lot more serious at 60+.  It just is. 

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.

[Murphy101]

28 minutes ago, Melissa Louise said:

What are suicide rates like for the elderly without family/assets?

Seems to me that would be a logical choice for many elderly, regardless of system of funding care (it's not any better here).

I suppose it would be a matter of finding the sweet spot when one still had capacity, and I guess many elderly ppl in this category miss-time their options. 

 

Suicide or neglect, it’s hard to tell. My husband’s grandmother is so adamant about refusing to leave her home and get assisted living that I doubt she will live another year.  A shame really bc at 90, she is extremely healthy other than that she must use a walker and needs help with anything that requires bending forward.  If she were to accept the minimal help she needs - it wouldn’t surprise me if she were to live to 100 still mostly active and engaged with society. But instead she will probably fall in her home and die in agony before anyone finds out.  Or worse alternatively, the state of Texas will decide she needs the state to take care of her and summarily sell a pennies on the dollar auction all that she owns and put her in a state nursing home.

But any effort by her only surviving child to make arrangements to have her live closer and get daily assistance was met with fury and going to a lawyer to have him disowned.  So. Suicide by neglect seems to be her choice. 

20 minutes ago, DoraBora said:

Alternatively, what about deciding to stop pursuing preventative and curative medical treatment?  It's not a guarantee of an earlier, healthier death, but it might go a long way toward ending the dwindles.  (Easy for me to talk about now...)

The title of this article, by the way, is a little dramatic.

https://www.theatlantic.com/magazine/archive/2014/10/why-i-hope-to-die-at-75/379329/

At 75 my youngest will be in her early 30s. There’s a lot I want to live to see and share the joy in of my kids lives. And that man’s view of elderly and disabled is …. Disgusting to say the least.  Never minding that a lot of elder and disabled lives could tremendously improved if our nation would get its crap together and provide better care and social integration.

[Carol in Cal.]

I think that what happens with people are elderly is that they get very overwhelmed.  So maybe they still know what they DON’T want, but they can’t figure out and execute a plan for a reasonable compromise that they DO want.  I have seen this a lot, even in my own family.  

And sometimes things work out badly.  I know someone quite well who went to live with her grown son and DIL, by invitation. She was giddy with joy about this as she knew she could not reasonably be alone, but it was far too crowded and she was, frankly, very hard to be around 24/7, and the whole thing blew up horribly.  Luckily she had other relatives who were able to step in and figure out another placement but not everyone is that fortunate.  If that had not been available, it would have been a terribly uncomfortable situation for all for the rest of her life.  As it was, it caused a big family rift that I felt was kind of foreseeable.

 

[DoraBora]

26 minutes ago, Murphy101 said:

At 75 my youngest will be in her early 30s. There’s a lot I want to live to see and share the joy in of my kids lives. And that man’s view of elderly and disabled is …. Disgusting to say the least.  Never minding that a lot of elder and disabled lives could tremendously improved if our nation would get its crap together and provide better care and social integration.

I'm an "older" mom, too.  When I'm 75, my older child will be 40, and my younger child 37. 

Did you read the article?  He didn't really say he wanted to die precisely at age 75, only that he planned to stop trying to extend his life around that time.  I didn't see his views as being disgusting. 

"Let me be clear about my wish. I’m neither asking for more time than is likely nor foreshortening my life. Today I am, as far as my physician and I know, very healthy, with no chronic illness. I just climbed Kilimanjaro with two of my nephews. So I am not talking about bargaining with God to live to 75 because I have a terminal illness. Nor am I talking about waking up one morning 18 years from now and ending my life through euthanasia or suicide. Since the 1990s, I have actively opposed legalizing euthanasia and physician-assisted suicide. People who want to die in one of these ways tend to suffer not from unremitting pain but from depression, hopelessness, and fear of losing their dignity and control. The people they leave behind inevitably feel they have somehow failed. The answer to these symptoms is not ending a life but getting help. I have long argued that we should focus on giving all terminally ill people a good, compassionate death—not euthanasia or assisted suicide for a tiny minority."

His point is, though we are loathe to admit it, people in the US are on-average, living longer but more debilitated lives.  One could argue that your dh's grandmother, who you think could possibly live to be 100 in relatively good health, is probably cognitively debilitated.  She isn't able, for whavever reason, to see the good sense in allowing her child to help her.  Maybe she was always difficult, but it's likely she is worsening, and current choices aren't a result of vibrant, healthy old age. 

It sounds to me like all the care and social integration in the world wouldn't change her situation one little bit.  Many, many elders are just like her - their utter refusal to allow their children/families to move them is extremely common.  When bad things happen to these stubborn elders, their children are often left with a deep sense of guilt.

@Laura Corin, I'm sorry I've totally hijacked your thread!  🙂

 

[Scarlett]

1 hour ago, Murphy101 said:

Suicide or neglect, it’s hard to tell. My husband’s grandmother is so adamant about refusing to leave her home and get assisted living that I doubt she will live another year.  A shame really bc at 90, she is extremely healthy other than that she must use a walker and needs help with anything that requires bending forward.  If she were to accept the minimal help she needs - it wouldn’t surprise me if she were to live to 100 still mostly active and engaged with society. But instead she will probably fall in her home and die in agony before anyone finds out.  Or worse alternatively, the state of Texas will decide she needs the state to take care of her and summarily sell a pennies on the dollar auction all that she owns and put her in a state nursing home.

But any effort by her only surviving child to make arrangements to have her live closer and get daily assistance was met with fury and going to a lawyer to have him disowned.  So. Suicide by neglect seems to be her choice. 

At 75 my youngest will be in her early 30s. There’s a lot I want to live to see and share the joy in of my kids lives. And that man’s view of elderly and disabled is …. Disgusting to say the least.  Never minding that a lot of elder and disabled lives could tremendously improved if our nation would get its crap together and provide better care and social integration.

Good grief.  My mom is 76 and very very healthy . Step,dad is 83 almost.  Also very healthy.  These people who think elderly should be thrown away.  Ugh.

Edited July 15, 2021 by Scarlett

[Carol in Cal.]

17 minutes ago, Seasider too said:

I agree with the overwhelmed. By that age many people (certainly some of the elders I know who are destined to need some assistance in the next few years) have accumulated a lot of stuff. A couple of them have even expressed that at one point they would have downsized but feel they missed the opportunity to do that, because they don’t have the energy (or willpower, I suspect) to deal with the decluttering process. 

Right, and that leads to others hearing only the negative (ie NO NOT THAT!) but nothing else.  

[Murphy101]

1 hour ago, DoraBora said:

I'm an "older" mom, too.  When I'm 75, my older child will be 40, and my younger child 37. 

Did you read the article?  He didn't really say he wanted to die precisely at age 75, only that he planned to stop trying to extend his life around that time.  I didn't see his views as being disgusting. 

"Let me be clear about my wish. I’m neither asking for more time than is likely nor foreshortening my life. Today I am, as far as my physician and I know, very healthy, with no chronic illness. I just climbed Kilimanjaro with two of my nephews. So I am not talking about bargaining with God to live to 75 because I have a terminal illness. Nor am I talking about waking up one morning 18 years from now and ending my life through euthanasia or suicide. Since the 1990s, I have actively opposed legalizing euthanasia and physician-assisted suicide. People who want to die in one of these ways tend to suffer not from unremitting pain but from depression, hopelessness, and fear of losing their dignity and control. The people they leave behind inevitably feel they have somehow failed. The answer to these symptoms is not ending a life but getting help. I have long argued that we should focus on giving all terminally ill people a good, compassionate death—not euthanasia or assisted suicide for a tiny minority."

His point is, though we are loathe to admit it, people in the US are on-average, living longer but more debilitated lives.  One could argue that your dh's grandmother, who you think could possibly live to be 100 in relatively good health, is probably cognitively debilitated.  She isn't able, for whavever reason, to see the good sense in allowing her child to help her.  Maybe she was always difficult, but it's likely she is worsening, and current choices aren't a result of vibrant, healthy old age. 

It sounds to me like all the care and social integration in the world wouldn't change her situation one little bit.  Many, many elders are just like her - their utter refusal to allow their children/families to move them is extremely common.  When bad things happen to these stubborn elders, their children are often left with a deep sense of guilt.

@Laura Corin, I'm sorry I've totally hijacked your thread!  🙂

 

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.

[Junie]

My unofficial plan is to spend two months of each year with each of my children on a rotating basis.  They also know that if they get a cat they will be exempt from service due to my allergies. 

[PeterPan]

12 hours ago, Laura Corin said:

Thank you. So Medicaid kicks in when someone needs serious nursing?

Jumping to the end here. Each state regulates (or chooses not) to regulate assisted living facilities. In the state my dad lives in, if I read the law correctly, assisted living facilities that choose to be *licensed* follow the same regulations basically as nursing homes. However not all places that advertise as assisted living are *licensed* which is what creates so much confusion.

The level of nursing care provided in an AL is lower than than in a skilled care facility (aka nursing home). Skilled care is required to have an RN on property, while an AL facility that is licensed might only have LPNs at the facility and have one supervising RN as a consult for the entire chain (many locations, supervising but not directly providing service to residents). The level of nurse (LPN vs. RN) decides what services and care can be provided. 

If a facility is *not* licensed, what typically happens is they will CLAIM to be providing the same services as a licensed facility but they have ways they skirt it. Like you might get a "home health aide" providing services, yes even for bathing, for you in your room, and the home health aide is not technically allowed to TOUCH you at all. Fancy how that works out when the person is a fall risk? They are also not legally allowed to administer medications, because again that requires a certain level of nursing and licensure. So for medication administration they will fill by the week and then deliver the resident a pile of bubble pouches which they then take for themselves.

I like to think I'm pretty up, and when I went to change my dad's AL facility recently, I got sucked into a place that was not licensed. I wasn't catching on, even though they were saying all the red flags. And it can be the right placement for some people! When my dad first moved into an AL 5 years ago, he did not need nursing care, did not need assistance, and didn't use medication management. He merely needed 3 square meals a day, housekeeping, social opportunities, and someone to keep an eye on him if he got sick or needed support. He could not live healthfully independently and did not require a skilled care facility. The cost of skilled care mind you is SIGNIFICANTLY more than entry level (no points, no care) assisted living. We didn't care that his previous facility was not licensed at the time, because he wasn't using the services that owuld be licensed.

However when I visited the really swank, unlicensed facility, they did not DISCLOSE they were not licensed but hid it. It would have been a dangerous, in appropriate placement. 

No professional has said my dad is currently in an incorrect placement. Assisted living is part of the continuum of care (independent living, assisted living, skilled nursing). The goal is to move through the continuum and be in the correct place where you're most safe. My dad's current placement is EXCEPTIONAL, providing the amount of support he needs (including light nursing provided by LPNs for things like bathing, medication management, etc.) without putting him in the $$$ draining position of paying for skilled care (overkill) too soon. Unfortunately, at his current care level (3 of 6 tiers), it looks like he won't be there long. This facility has clear standards for when he will need to go and I'm already working on what the next step will be. 

So I don't think it's reasonable to say everyone in AL needs to be in a nursing home. The level of social interaction and opportunities is MUCH higher in AL than in skilled care, and skilled care involves dramatically higher cost, reduced privacy, reduced food quality, etc. People all have their unique situations and families have to choose *very carefully*. The facility where my dad lived for 5 years went through 3 ownership changes and changed from very lovely to very problematic. Just to walk around there, yes it looks like some of the residents should be considering moving on to skilled care. It happens, and $$$ issues are a reason a facility would NOT move someone on through the continuum of care when they should. The safest way to make sure this doesn't happen, besides of course keeping close tabs, is to chose an AL that is part of a campus with a continuum of care. Since they make more money moving you on, they're going to tell you when it's time. A facility that has only AL can have financial interest in keeping you longer, beyond when it's safe.

You are also allowed to hire private nurses to come to your AL to make up the gap in skilled care. Remember, it's still a more human, less expensive environment than sharing a room in a skilled care facility. For someone like my dad, we'll be looking at all those options. They have 3 things that, at this company, cause you to move on:

-total assisted transfers (from bed to chair, etc.)

-total assisted toileting

-memory

If you lose 2 of the 3, you move on. My dad would have a lower quality of life and be paying significantly more for it if he moved to a skilled care facility prematurely. He's in exactly the placement he needs with exactly the correct level of service. It runs about $5k a month for this middle level of care (apartment lease plus a tier of care). If he were in skilled care, I think it would be $7-8k a month for a shared room with a person who might literally be DYING. My dad is not dying and is perfectly happy with his apartment, his own belongings, etc. And so long as the facility does what they are licensed to do and provides the care they claim they will provide, he's FINE. I will tell you that the nursing is pretty nice in a licensed facility that is doing well. They take it pretty seriously, with locked carts for medication (just like a nursing home), uniforms, etc. It's just he doesn't need an RN for his current needs, so LPN level nursing care is adequate.

[DoraBora]

2 hours ago, Scarlett said:

Good grief.  My mom is 76 and very very healthy . Step,dad is 83 almost.  Also very healthy.  These people who think elderly should be thrown away.  Ugh.

I'm sorry his article upset you and Murphy.  I did mention that the title was a bit dramatic.  I saw it as a dose of reality.

This doctor writes of decision, for his own life, to forgo medical tests and procedures beginning in his mid-70s in hopes that he won't live out his days in "the dwindles".

[regentrude]

35 minutes ago, DoraBora said:

I'm sorry his article upset you and Murphy.  I did mention that the title was a bit dramatic.  I saw it as a dose of reality.

This doctor writes of decision, for his own life, to forgo medical tests and procedures beginning in his mid-70s in hopes that he won't live out his days in "the dwindles".

I found it a very though provoking article. If I consider the quality of life during the final years of the majority of elders in my family, I really wish to die before it gets to that. My maternal grandma lived a healthy active live until 93 and died in her own bed after three days illness, and I would love to go like that - but OTOH, my dad lies in a bed, unable to move, speak, or swallow... I 'd much rather die a bit earlier than put myself and my family through that experience. 

EtA: like the author, I am speaking about *my* wishes and do not make a prescription for other people. 

Edited July 15, 2021 by regentrude

[Slache]

22 minutes ago, regentrude said:

I found it a very though provoking article. If I consider the quality of life during the final years of the majority of elders in my family, I really wish to die before it gets to that. My maternal grandma lived a healthy active live until 93 and died in her own bed after three days illness, and I would love to go like that - but OTOH, my dad lies in a bed, unable to move, speak, or swallow... I 'd much rather die a bit earlier than put myself and my family through that experience. 

EtA: like the author, I am speaking about *my* wishes and do not make a prescription for other people. 

A hive member once pointed out that modern medicine is prolonging life, but not quality life. Lots of wisdom in that.

[regentrude]

Just now, Slache said:

A hive member once pointed out that modern medicine is prolonging life, but not quality life. Lots of wisdom in that.

That was the main point of the author's article, as I understood. 

[PeterPan]

2 hours ago, DoraBora said:

I'm sorry his article upset you and Murphy.  I did mention that the title was a bit dramatic.  I saw it as a dose of reality.

This doctor writes of decision, for his own life, to forgo medical tests and procedures beginning in his mid-70s in hopes that he won't live out his days in "the dwindles".

Fwiw, I'm going to go read this article and find the topic very timely! My dad is turning 71, and with a skilled care facility in his future and complex issues, I'm thinking about issues like that. It seems to me there must be some kind of logical, intentional, human shift in care as you age. I've seen it in relatives. I just don't know exactly what it looks like for an exact situation. And that's interesting to read an article by a doctor thinking it through. 

Of course he may also change his mind, lol, but who knows. 

[Murphy101]

12 hours ago, DoraBora said:

I'm sorry his article upset you and Murphy.  I did mention that the title was a bit dramatic.  I saw it as a dose of reality.

This doctor writes of decision, for his own life, to forgo medical tests and procedures beginning in his mid-70s in hopes that he won't live out his days in "the dwindles".

I’m not upset by the article. I found his views of people who need extensive help a disgusting view of people. 

I don’t want to have measures that add to my misery. For example chemo at 95? Hard pass. But it’s not because I think being 95 and sick makes a person of no value to society or pathetic. 

11 hours ago, Slache said:

A hive member once pointed out that modern medicine is prolonging life, but not quality life. Lots of wisdom in that.

Except that’s ignoring that it’s hard to get worse quality of life than being dead. The vast majority of modern medicine does not just prolong life - it quite literally saves lives.

Edited July 15, 2021 by Murphy101

[lauraw4321]

A friend's father was a gastroenterologist. He frequently placed feeding tubes in folks who needed them.  He made something like $800 for every tube he placed, and his part took about 15 minutes. However, he would spend hours counselling families on whether a feeding tube was the right choice for their elderly relative with advanced Alzheimer's who was no longer able to walk, speak or do any activities of daily life. He would explain that not eating was a normal way for people to die. None of that work was compensated (this was pre-ACA, which may provide compensation for this work now). It would have been SO MUCH EASIER and LUCRATIVE for him to just do the procedure. That's the example I always think of. 

Now contrast that with someone who is no longer able to eat, but has their mental faculties, participates in activities of daily life, who is young and could live for many years. A feeding tube is an amazing innovation for that person. 

[Slache]

24 minutes ago, Murphy101 said:

Except that’s ignoring that it’s hard to get worse quality of life than being dead. The vast majority of modern medicine does not just prolong life - it quite literally saves lives.

I don't want that. I'm very tired and in a lot of pain and have been since I was about 21. I want to be done. I want to finish raising my kids but I can't imagine what my life will be like in my 60s and I don't want to live to be 70. I'm not condoning doctor assisted suicide, but there may come a day where I ask to stop having my life saved because each time I survive I'm significantly worse off than I was before and I just don't want to do this anymore.

I didn't read the article.

[mlktwins]

This is really such a depressing thread :-(.  I lost my mom from an accident in the span of 5 days so did not need to think about things like this with her.  I just lost my in-laws (both 94), who were still home and functioning ok (although I wish they had been in AL years ago -- they had the money to do it), to being on home hospice for 5 and 22 days respectively before they passed - horrible experience for all involved really.  Add in my dad who I moved into an apartment from his home (the stairs would have killed him by now if he had stayed).  He lives alone, I am 10 minutes from him, and he is as safe as he can be.  I am waffling back and forth on keeping him there or putting him in AL (thankfully he has the money for it also, but will burn through it pretty quickly in AL), but he does not want to leave his apartment.  He is comfortable there.  My biggest concern with him is he is a fall risk.  But...he will be a fall risk at AL too and really, they won't stop be able to stop him from falling there.  I believe they are only checked on every 2 hours or so.  

Anyway, such hard situations for the elderly to go through for sure.  It is also quite traumatic for the caretakers.  I had no clue it would be like this, and anyone who has been through this on the caretaking end knows what I'm talking about.  Life changing for all...  Once we get my in-laws estate taken care of and my boys graduated in 2023, I will be devoting my time to making decisions and setting things into motion to make all of this easier for them.  I do not want what DH and I have been going through to happen to them.  We can make choices now to help them later.  And...we will have a beautiful one level house that has full handicap capable bathroom in it.  That was a huge lesson learned from my dad and my in-laws situations.  One should be able to bathe easily as they age.  

 

  

[Scarlett]

38 minutes ago, Slache said:

I don't want that. I'm very tired and in a lot of pain and have been since I was about 21. I want to be done. I want to finish raising my kids but I can't imagine what my life will be like in my 60s and I don't want to live to be 70. I'm not condoning doctor assisted suicide, but there may come a day where I ask to stop having my life saved because each time I survive I'm significantly worse off than I was before and I just don't want to do this anymore.

I didn't read the article.

This makes me so so sad.  Your kids will 'need' you long after they leave home.  

I am sorry your health is so bad.  

[regentrude]

1 hour ago, Murphy101 said:

Except that’s ignoring that it’s hard to get worse quality of life than being dead. The vast majority of modern medicine does not just prolong life - it quite literally saves lives.

But there are much worse things than being dead. Being technically alive with no agency over any bodily function? No thanks. I would not want that for myself,  and I would not want to inflict that upon my loved ones.

Eta: I would not wish for my family to have to watch my process of dying drawn out for years, while they put their lives on hold to care for me. And I wouldn't want that process for me. I hope to have the opportunity and ability for a dignified end of life.

Edited July 15, 2021 by regentrude

[Scarlett]

1 hour ago, Murphy101 said:

I’m not upset by the article. I found his views of people who need extensive help a disgusting view of people. 

I don’t want to have measures that add to my misery. For example chemo at 95? Hard pass. But it’s not because I think being 95 and sick makes a person of no value to society or pathetic. 

Except that’s ignoring that it’s hard to get worse quality of life than being dead. The vast majority of modern medicine does not just prolong life - it quite literally saves lives.

Yes, this is the point. 

I too won't do crazy life prolonging measures if I get the privilege of getting old.  But hopefully there will be someone around who values me still.

[Scarlett]

2 minutes ago, regentrude said:

But there are much worse things than being dead. Being technically alive with no agency over any bodily function? No thanks. I would not want that for myself,  and I would not want to inflict that upon my loved ones.

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.'

[Tina]

Or if you're already reduced to low income housing when you need AL, then medicaid will pay.  May share an apartment (i.e. living room, bathroom, 2 bedroom room in a place that resembles a nursing home, but it's covered.

[Carol in Cal.]

The more I see, the more I think the Amish have it right.  Live in your big hospitable house for many years, raise your family, and then move to the little, accessible house out back.  You have privacy and ease of use but also readily available care and meals on a less formal basis than ‘assisted living’.

I’ve seriously considered building a tiny but very accessible cottage in our back yard for recovery and/or for caregiver quarters.  Our lot is not super wide but it is 160 feet deep and so it would fit nicely into the back corner.  But it’s just too expensive here, and also we are in a neighborhood that is on a former marsh so the soil is pretty bad.  Liquifaction is more likely than not, and having two houses on the same lot seems like a bad financial risk.

[DoraBora]

41 minutes ago, Scarlett said:

Yes, this is the point. 

I too won't do crazy life prolonging measures if I get the privilege of getting old.  But hopefully there will be someone around who values me still.

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

Inserting a pacemaker, a relatively simple, life-saving procedure, can add years to your life.  Dh's aunt, who is 95, lives in assisted living, and has cognitive issues, had one inserted a year or so ago.  It should keep her heart going for another decade, unless she dies of another cause.  Unfortunately, she is likely to slide into further dementia and spend at least some of those years in a locked memory care unit.  She is valued.  She is loved.  Her family probably thought they were doing the right thing in supporting this treatment, but I suspect they'll regret it later on.  Hopefully, I'm wrong.

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

Edited July 15, 2021 by DoraBora
I keep going on and on...

[skimomma]

41 minutes ago, Tina said:

Or if you're already reduced to low income housing when you need AL, then medicaid will pay.  May share an apartment (i.e. living room, bathroom, 2 bedroom room in a place that resembles a nursing home, but it's covered.

This has not been my experience.  At least in my state, medicaid will not pay for AL, period.  And I don't know what kind of AL you are referring to, but even with LTC insurance, all we can afford is a small, single room in a dated, but thankfully licensed, AL facility.  Apartment-style AL facilities were no less than $10K per month when I was searching two years ago.  I cannot see medicaid covering that even if they did cover AL in general.

[Tina]

Sil is in AL, and it truly is not like an apartment, but more like a shared bath and tiny living room and the two bedrooms.  Meals are all in the dining room, and it is similar to a nursing home.  She is in low income housing status and Medicaid pays for it.  Works in this state, anyway. 

 

[PeterPan]

54 minutes ago, mlktwins said:

He lives alone, I am 10 minutes from him, and he is as safe as he can be.  I am waffling back and forth on keeping him there or putting him in AL (thankfully he has the money for it also, but will burn through it pretty quickly in AL), but he does not want to leave his apartment.  He is comfortable there.  My biggest concern with him is he is a fall risk.  But...he will be a fall risk at AL too and really, they won't stop be able to stop him from falling there.  I believe they are only checked on every 2 hours or so.  

You might check on the licensure, who is doing the checks, whether that is all residents or only memory care, etc. We had one place that does that, but they weren't licensed and were using home health aides, not LPNs. Some people find it intrusive to have people keying into their apartment like that and I wouldn't want that for my dad. All residents should be wearing a pendant but that's something you can do without moving him. 

If he likes his home, you might ask his doc for inhome therapy to assess fall risk and do some fall prevention stuff. And definitely put a pendant on him. Moving is very stressful and might not be worth it if he's happy (not needing better meals or more social) and if you're able to step up inhome services.

[PeterPan]

4 minutes ago, Tina said:

Sil is in AL, and it truly is not like an apartment, but more like a shared bath and tiny living room and the two bedrooms.  Meals are all in the dining room, and it is similar to a nursing home.  She is in low income housing status and Medicaid pays for it.  Works in this state, anyway. 

 

That is paid for by medicaid, not private. You can have anything you want when you're paying privately, lol. My dad has a large bedroom with walk in closet, full bath with room for a wheelchair, and living room/kitchen large enough for a 55" tv. I wanna vacation there! 

But it's really cautionary like for the other poster talking about moving a relative. If you get into your paid place and money runs out, you end up moving to whatever medicaid will make happen, which will not be the same. And it does happen. 

[PeterPan]

22 minutes ago, skimomma said:

At least in my state, medicaid will not pay for AL, period.  

In the state my dad is in there *is* some kind of low income/medicaid AL like this. Like Tina says, I don't think it's nearly as pleasant. I'm not sure what the procedure is for getting into it. The story I was told was of someone whose money ran out who went from private to whatever the state would pay. So it is done, just probably not as generally available as nursing care (which is ubiquitous when you get to that stage).

[Murphy101]

2 hours ago, lauraw4321 said:

A friend's father was a gastroenterologist. He frequently placed feeding tubes in folks who needed them.  He made something like $800 for every tube he placed, and his part took about 15 minutes. However, he would spend hours counselling families on whether a feeding tube was the right choice for their elderly relative with advanced Alzheimer's who was no longer able to walk, speak or do any activities of daily life. He would explain that not eating was a normal way for people to die. None of that work was compensated (this was pre-ACA, which may provide compensation for this work now). It would have been SO MUCH EASIER and LUCRATIVE for him to just do the procedure. That's the example I always think of. 

Now contrast that with someone who is no longer able to eat, but has their mental faculties, participates in activities of daily life, who is young and could live for many years. A feeding tube is an amazing innovation for that person. 

This. If I reach a point where my mind is gone and no chance of it coming back, let nature take its merciful course.  If the treatment is going to deduct from life for a significant portion of what I may have left to live, just let me live what I have left without the treatment instead.

 

1 hour ago, DoraBora said:

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

Inserting a pacemaker, a relatively simple, life-saving procedure, can add years to your life.  Dh's aunt, who is 95, lives in assisted living, and has cognitive issues, had one inserted a year or so ago.  It should keep her heart going for another decade, unless she dies of another cause.  Unfortunately, she is likely to slide into further dementia and spend at least some of those years in a locked memory care unit.  She is valued.  She is loved.  Her family probably thought they were doing the right thing in support this treatment, but I suspect they'll regret it later on.  Hopefully, I'm wrong.

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

This is all true.  Early in Alzheimer’s? I can understand doing the pacemaker. “Cognitive issues” is extremely vague.  I’ve seen people with Alzheimer’s manage 5+ years with mild Alzheimer’s and still being mostly aware of not quite clues in to the lives of their loved ones. But once they have left their minds, I think it’s a bit cruel to do things like pacemakers and such. 

[Spryte]

3 minutes ago, Murphy101 said:

This. If I reach a point where my mind is gone and no chance of it coming back, let nature take its merciful course.  If the treatment is going to deduct from life for a significant portion of what I may have left to live, just let me live what I have left without the treatment instead.

 

This is all true.  Early in Alzheimer’s? I can understand doing the pacemaker. “Cognitive issues” is extremely vague.  I’ve seen people with Alzheimer’s manage 5+ years with mild Alzheimer’s and still being mostly aware of not quite clues in to the lives of their loved ones. But once they have left their minds, I think it’s a bit cruel to do things like pacemakers and such. 

Yes, this is an issue.  MIL has had an ICD (like a defibrillator that is also a pacemaker) for 4 years.  She has declined in the last few years, though, and the family decided together to put her on “comfort care” (basically hospice).  As part of this, DH had to take her to have her unit turned off.  It was a simple, non-invasive office procedure.  She still has the unit, but it no longer functions as it did. Keeping it on would have been contradictory to her comfort care plan.

[Laura Corin]

17 hours ago, Carol in Cal. said:

The more I see, the more I think the Amish have it right.  Live in your big hospitable house for many years, raise your family, and then move to the little, accessible house out back.  You have privacy and ease of use but also readily available care and meals on a less formal basis than ‘assisted living’.

I’ve seriously considered building a tiny but very accessible cottage in our back yard for recovery and/or for caregiver quarters.  Our lot is not super wide but it is 160 feet deep and so it would fit nicely into the back corner.  But it’s just too expensive here, and also we are in a neighborhood that is on a former marsh so the soil is pretty bad.  Liquifaction is more likely than not, and having two houses on the same lot seems like a bad financial risk.

The house we moved into last year is easy to split into two flats with  separate entrances.  I  expect that we will split it at some point to make room for a carer, or a student who gets cheap rent in return for taking out the bins and keeping an eye.

Edited July 16, 2021 by Laura Corin

[Tina]

1 hour ago, PeterPan said:

You might check on the licensure, who is doing the checks, whether that is all residents or only memory care, etc. We had one place that does that, but they weren't licensed and were using home health aides, not LPNs. Some people find it intrusive to have people keying into their apartment like that and I wouldn't want that for my dad. All residents should be wearing a pendant but that's something you can do without moving him. 

If he likes his home, you might ask his doc for inhome therapy to assess fall risk and do some fall prevention stuff. And definitely put a pendant on him. Moving is very stressful and might not be worth it if he's happy (not needing better meals or more social) and if you're able to step up inhome services.

He may want to use a walker all the time.  It may prevent falls for a while.  I'm trying hard to keep my folks in their home.  Dad uses a walker all the time since he had a fall and busted his leg big time and went through a horrible year or more of recovery.  Affected many more lives than just his.

[PeterPan]

53 minutes ago, Spryte said:

Yes, this is an issue.  MIL has had an ICD (like a defibrillator that is also a pacemaker) for 4 years.  She has declined in the last few years, though, and the family decided together to put her on “comfort care” (basically hospice).  As part of this, DH had to take her to have her unit turned off.  It was a simple, non-invasive office procedure.  She still has the unit, but it no longer functions as it did. Keeping it on would have been contradictory to her comfort care plan.

I think they did something similar with my grandma, letting the battery run out and not replacing it.

 

[TechWife]

On 7/14/2021 at 6:07 PM, DoraBora said:

Alternatively, what about deciding to stop pursuing preventative and curative medical treatment?  It's not a guarantee of an earlier, less prolonged death, but it might go a long way toward ending the dwindles.  (Easy for me to talk about now...)

The title of this article, by the way, is a little dramatic.

https://www.theatlantic.com/magazine/archive/2014/10/why-i-hope-to-die-at-75/379329/

That article is awful. The author has a profound disrespect and lack of compassion for people. The way he related his father’s story - it’s as if he think the past ten years of his father’s life, following a heart attack at the age of 77, have been a waste. 
“Although he didn’t die from the heart attack, no one would say he is living a vibrant life. When he discussed it with me, my father said, ‘I have slowed down tremendously. That is a fact. I no longer make rounds at the hospital or teach.’ Despite this, he also said he was happy.”

 How about this - his father is happy because at the age of 87, he is living an age appropriate lifestyle- retired, interacting with family, living with his wife, etc.. It’s also a developmentally appropriate lifestyle for an 87 year old person. The last sentence in the part I quoted reveals much about how the author judges the worth of people, including himself.  “Despite this” he “said he was happy” isn’t the same mindset as “my father is happy in his retirement.” The author bases his worth and the worth of others on what they do, not on who they are. This is not a holistic view of personhood. I am repelled by his viewpoint and at the same time I am sad for him and his family.