So trivial, yet it really ticks you off.

[tonyb]

Yes, that is just north of our little section of the Sonoran Desert system so hot summers colder winters. I live right on the coast where it is mild and wet 11 months of the year.....Seattle weather.
Up here we pay for our medical in the form of taxation. The downside is our medical system rations the services. Works well generally for serious life threatening illness other serious but not deadly medical interventions the wait times can be horrific. I have paid the money to a USA border hospital to do an MRI on my elderly mother to avoid the 9 month wait....it was to discern if she had cancer.

Yeah, but health care is effectively rationed down here in the Land o’ the Free as well, as it is everywhere, I’d imagine. It’s just a matter of degree.

For all but the very wealthy, the patients wait their turn. The duration of the wait is determined by the urgency of the condition and, often, what sort of insurance the patient carries and how forceful his or her providers are in their dealings with the insurance companies. I’ve been denied therapies because the insurance company determined, contrary to my physicians’ judgements, that those therapies were not medically necessary.

 

[tonyb]

The idea of living in a "home" in my declining years terrifies me, the idea of being locked up among people my own age -- few of whom I willingly associate with -- without hope of parole. The Kids -- who have been designated to take charge of my affairs if I'm incapacitated -- have been strictly instructed not to dump me into such a situation. No member of my family has ever ended up in such a place, and I won't be the first.

The dewy-eyed bride calls nursing homes “prisons for the elderly and people with disabilities.”

I do believe she would shoot dead any person who threatened to put her in such a “home.”

 

[LizzieMaine]

Yep, and don't even get me started about the corrupt, filthy racket that is the US system of rationing health care. I've been turned away by doctors here more than once because a check of my insurance status revealed that I was "not yet due to be seen." This after I had to drive an hour and a half to get to the office because no local doctors are "taking patients." Ahhhhh, don't get me started....

 

[belfastboy]

The dewy-eyed bride calls nursing homes “prisons for the elderly and people with disabilities.”

I do believe she would shoot dead any person who threatened to put her in such a “home.”

I went through that with my mother. Making your children/relatives promise to not dump you in a home is foisting an unconscionable weight upon their shoulders.

The idea of living in a "home" in my declining years terrifies me, the idea of being locked up among people my own age -- few of whom I willingly associate with -- without hope of parole. The Kids -- who have been designated to take charge of my affairs if I'm incapacitated -- have been strictly instructed not to dump me into such a situation. No member of my family has ever ended up in such a place, and I won't be the first.

Placing a demand upon one's children or relatives to never place you in a home foists an unconscionable burden upon them. Unless you have the finances to afford full time nursing care that keeps you in your home what choice do your survivors have but to place you in a home if you should become unable to care for yourself in your own home? I went through this with my mother and it was a bitch. I committed to doing what I could to keep her in the family home. It was a commitment I grew to resent as I became captive to that commitment. If I were to have an additional mother, knowing what I now know would never make such a commitment ever again.
What are your plans if/when you become too infirm to live alone in your home? What instructions have you given your heirs? Does it place an unfair burden upon them? And no, my mother's instruction to place a pillow over her head when the time came is not a viable plan.

 

[LizzieMaine]

To be blunt, my plan is to die if I reach that stage: I have no interest in living a life that isn't worth living, kept alive like a house plant just to run up bills nobody can pay. I remember my grandmother-in-law lying in a mess of her own filth in a "home," ignored by nurses, and unaware of anything that was going on around her. Is that "life?" It's not life as I care to define it, and I have no intention of ever letting myself get to that point. Those in a position of responsibility know my feelings about this, and I believe they understand why I feel as I do -- and what I would do.

My grandparents died at home, my mother will die at home, and so will I.

 

[tonyb]

What people with disabilities confront is an entrenched pro-institutional bias. Attribute this in largest part to the nursing home industry (yes, it’s an industry) pouring vast sums into lobbying elected officials to perpetuate their racket.

The plainly demonstrable truth is that for most people in nursing homes and the like, a more than adequate level of care can be provided them in their own homes, and at (get this) LOWER COST! (Much lower, in many cases, but that doesn’t further pad the pockets of those campaign donors.)

 

[belfastboy]

What people with disabilities confront is an entrenched pro-institutional bias. Attribute this in largest part to the nursing home industry (yes, it’s an industry) pouring vast sums into lobbying elected officials to perpetuate their racket.

The plainly demonstrable truth is that for most people in nursing homes and the like, a more than adequate level of care can be provided them in their own homes, and at (get this) LOWER COST! (Much lower, in many cases, but that doesn’t further pad the pockets of those campaign donors.)

What was that movie..."I am still Alice" with Julianne Moore. It is a very sobering look at having an exit plan and what can happen when it comes time to execute said plan . The character had hers all worked out but the irony is that we plan the 'moment' when we are fully lucid but in real life we are rarely fully lucid when the 'moment' arrives. My mother did eventually end up in a home for her last month as she was fully bed ridden . The care homes here in Canada (having worked inside them as a contractor) are on the whole good places. Are they 'home' as know it? No, the reality is they are 'end of life ' accommodations and not fun places to hang out but that cis a function of 'end of life' not a great fun place. The workers in my experience, wonderful, professional, patient, caring people doing a very hard job. They made my mother comfortable in her last days and for that I am grateful.

 

[tonyb]

We all got our anecdotes.

A fellow I’ve known since my teen years, who is now past “full retirement” age himself, helped tend to my brother’s widow (my brother checked out suddenly and unexpectedly in ’07) as she was dying of ovarian cancer in 2016. A few years prior to that this friend attended to *her* brother as brain cancer took his life. My sister-in-law died at home. Her brother lived at home until the last few days of his life. I do believe he would have preferred passing his final days at home.

At present this caregiving friend is living with his quite elderly aunt in her home while dementia slowly takes her away.

This old friend has done okay for himself throughout his life. He’s an Army veteran, a successful business operator, a skillful tradesman. And a gentle soul. He’s as well-suited to at-home caregiving as anyone you’d likely ever encounter. We would all be better served if we put more resources toward the sort of care this friend provides and less toward the highly profitable nursing home industry.

 

[tonyb]

For whatever it may contribute to the discussion ...

Most people with significant disabilities of my acquaintance really, really, really resent hearing able-bodied people say things like “I wouldn’t want to live like that,” or “I couldn’t stand being such a burden.”

It’s entirely understandable that they would feel that way.

 

[LizzieMaine]

For me it isn't a matter of disability or being a burden. It's a matter of flat-out refusing to be slung around like a bag of sawdust against my will. Old age is not a crime, and it shouldn't be treated like one by our oh-so-tender "health care industry."

My mother worked as a cook in a nursing home fifty years ago, and what she saw there was enough to put her off them for the rest of her life. I can't say as I've seen anything to cause me to urge her to revise her views. They'd have to take her out of her house in a straitjacket.

As it happens, the couple who lived in my house for fifty years before I did made arrangements for when they got too old to negotiate the stairs, installing a toilet and a shower in the broom closet off the pantry. So I'm pretty well situated physically to stay here, even if I do lose mobility as I age. And one of my aunts, a polio survivor who refused to use braces or a cane out of sheer cussedness, managed to get around her house quite well in spite of her condition. I was rather amazed as a kid at her ingenuity in doing so.

 

[tonyb]

It’s that “flat-out refusing to be flung around like a bag of sawdust against [their] will” that has disability-rights activists occupying the offices of elected officeholders and otherwise making their presence known in the halls of power. If not for their predecessors in the struggle having done exactly that (and more), they wouldn’t know what little bit of inclusion they know now.

People younger than us knew a world without curb ramps, without accessible public transit, without kids with disabilities going to the school down the street with the neighbor kids because there were “special” schools for “kids like that.”

None of that happened without people raising hell about it. God bless the troublemakers.

 

[GHT]

For me it isn't a matter of disability or being a burden. It's a matter of flat-out refusing to be slung around like a bag of sawdust against my will. Old age is not a crime, and it shouldn't be treated like one by our oh-so-tender "health care industry."

Some years ago, a neighbour seemed concerned that we had no kids. "What will you do when you get old?" I was asked. "You have children as your insurance in old age," I thought, but didn't say it, instead I said: "Probably be in the same nursing home as you, but I won't be looking out of the window for relatives who never visit." To which my neighbour replied: "You're right, in fact I'm going to be cremated and have my ashes thrown across the supermarket car park. At least that way they will visit me twice a week."

 

[LizzieMaine]

It's the same principle as any one person being the only valid arbiter of their own quality of life -- if someone doesn't want to live tied to a bed like a lab specimen, they should not be condemned to do so. Life is the one and only thing any of us truly own, and in the end, only we ourselves are qualified to decide just what parameters we will set for the conditions under which that life will continue or not.

 

[tonyb]

The husband half of a married couple of my acquaintance hails from a land across the sea where it is still very much the expectation for the adult offspring to take care of their elderly parents. In my friends’ circumstances, that means having the parents come to the States for visits lasting months at a stretch.

 

[tonyb]

There is no unanimity of opinion among people with disabilities on “aid in dying” or “physician-assisted suicide” or however else it might be characterized, but the prevailing view is one of skepticism if not outright opposition, well-founded, in my view, by the realization that some lives are clearly accorded more value than others, and, that being the case, the option of an early checkout would likelier be presented to those whose “quality of life” is commonly seen as less than that of the able-bodied.

This issue does not exist in isolation. My fear is that the right to die would become the duty to die. Under our current health care scheme, millions of elderly people could be left with choosing between taking the suicide potion now and leaving their kids with an inheritance or sticking around some extra months (or years, maybe) and spending it all on medical bills.

 

[LizzieMaine]

I reject the idea of being "helped' with such a decision by one side or the other -- but I do reserve the absolute right to make it for myself, however and whenever, and if ever I should feel it warranted. As I say, life is the one and only thing any of us ever actually own.

 

[tonyb]

^^^^
Your rejection of the notion that you might be steered toward or away from assisted suicide does nothing to address the very real potential that some will be presented with it as the more desirable (or less undesirable) option.

It’s not so alarmist for those whose lives have been devalued their entire lives to think that such a bias would be well in evidence as the end draws near.

 

[LizzieMaine]

I think you misunderstand what I'm saying here. I'm not talking about Kevorkian-style "assisted suicide" in a medical setting, that's in fact the furthest thing from my mind. I'm talking about the fundamental right of any individual to decide the question, for themselves, on their own, without any "assistance" from anyone or any institution -- I hate to use the word "rational," because it's so abused by fifteen-year-old internet edgelords who think they're heirs to the Enlightenment, but I do in fact think there's such a thing as a rational decision to self-terminate. There's the example of George Eastman: "My work is done. Why wait?"

What I'm saying is simply this: to force someone to live a life under circumstances they, themselves, have decided to be untenable is as cruel, to my mind, as forcing them to die.

I've got my own wishes clearly expressed in writing -- a great big DNR, no respirators, no percolators, no wires and tubes, just let me die, goddammit, if my time has come -- as far as the medical establishment is concerned, and that's nobody's decision to make but mine. I'd fiercely resist any attempt to force anyone else into such a decision, and I'd expect my assigns to just as fiercely resist anyone's attempt to force me into staying alive for the sake of a religious or political point.

I think a lot of trouble could be saved if everybody took the time to think about these questions when fully lucid, and express their views to the appropriate parties as clearly and completely as possible. Nobody wants to think about death, but it's coming for all of us one day, and the older you get the more important it is to figure out exactly how you feel about that.

 

[tonyb]

“Kevorkian style” exits from this existence are very much a reality in parts of this country and to a greater degree in some others, where young people in excellent physical health can legally request and be legally provided lethal doses of “medications” to free themselves from their psychological torment. It’s true.

This isn’t DNR orders or refusals to be intubated. This is actively killing people.

None of us know how we’ll feel about whatever seemingly dire circumstances we might find ourselves in until we find ourselves there. Many who once thought they would “never want to live like that” find that “living like that” beats the hell out of not living at all. And some might feel otherwise (a young fellow I met in an orthopedic ward, who was left a quad as a result of an automobile wreck in which his brother died, suggested that as soon as he got a motorized wheelchair he would take it to the roof of the hospital and wheel his way off the edge).

It is because I don’t know how I’d feel about whatever the fates have in store for me that I refuse to affix my signature to an “advance directive,” as has been suggested I do on several occasions. I take those repeated offers as a sign that the health care “system” wishes for us costlier cases to expire before we cost it even more.

For me, this isn’t about religion or politics (leastwise not about partisan politics). I trust my wife to make my decisions should I be incapable of making them myself. I trust her more than I trust any physician or clergyman or medical ethicist.

 

[ChrisB]

I have mentioned this before, it really burns me when an able bodied person uses a family members handicapped tag to park in a handicapped space. I need to use these spaces in order to have enough room for my wife’s wheelchair, and there are only a few such spaces.When someone hops out of their car and runs into the supermarket, I am fairly certain that person is not disabled.